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**Tamoxigang counting down to Easter eggs- thread 48**

(999 Posts)
BetsyBoop Fri 21-Mar-14 20:05:40

throws some hot cross buns on the trolley

malteserzz Fri 21-Mar-14 20:13:28

I'll add some pino Grigio. Thanks for sorting us out Betsy smile

Lilymaid Fri 21-Mar-14 20:16:17

Hot and buttered I hope! <Grabs plate and runs for trolley>
MIL never served hers hot ... Did she not think about the name?

For those re growing their hair, I have just invested in a pocket size Mason Pearson brush which seems to be helping hair to start going in the right directions. Not yet found shampoo/conditioner that gives it any body - tried some free samples of v expensive Ojon products but can't say I noticed any improvement.

BetsyBoop Fri 21-Mar-14 20:21:38

aargh I've given up alcohol for lent malt! smile

mildmay - if you are wanting stats and feeling up to it you can feed your details into online calculators such as NHS predict, cancermath and Adjuvant online smile Oncs will tell you (eventually!) but only if you specifically and clearly ask!

I got Emend first cycle on the NHS. I gave the onc my sob story of morning sickness, sick with migraines, travel sickness etc and if he wanted a safe bet on someone who would be very sick it was me! (I still ended up with OOH GP to give me a jab to stop the pucking...) The chemo nurse did say it was very unusual to get it first cycle (I ended up with fur different anti-e + IV anti-e to get things sort of under control to just feeling very sick level...

Speedypenguin Fri 21-Mar-14 21:15:11

Hi all.

I have been lurking a bit since being diagnosed with breast cancer last week and everyone seems to be so helpful and lovely here I thought I would post a message.

I now have a date for my sentinel node operation and then chemotherapy starts afterwards. After that finishes I have to decide how much surgery I want. Everything feels so unreal at the moment and it is like it isn't really going to happen. I had my hair cut shorter yesterday and had such lovely comments from all the parents at school- they don't yet know I will most likely not have any in a few weeks!

I have an appointment with the oncologist next week and am very apprehensive about how ill I might feel. I am on my own with the boys and am a bit worried how I might manage, although my ex has been great and has said he will have them whenever needed.

Haven't told the children yet but that is going to happen over the weekend and their dad is going to do it with me. Just worried I might be too emotional- I seem to have kept it together quite well this week. I know I will be a wreck when I have to stop work next week- I love my class.

At least I have the boys with me to keep me busy this weekend!

BetsyBoop Fri 21-Mar-14 21:33:10

welcome speedy, though sorry you find yourself here. With regard to chemo you might be having FEC or FEC-T as they seem to be the most common routines. The FEC bit is particularly prone to making you sick if you are that way inclined - how were you for morning sickness when you had your children? This is the worst bit, when you are still in shock from the results and wiiting for surgery/results/chemo/plan. Once you know the results/plan it gets a bit easier, as it's head down get on with it! Shout up with any questions won't you ? smile

Wren48 Fri 21-Mar-14 21:35:40

Hi there Speedypenguin, you are very welcome, but sorry you find yourself here. You must be in a real state of shock still. It's great that your ex is being supportive - support from others is really necessary and can turn up from the most unexpected people. How old are the boys?

Wren48 Fri 21-Mar-14 21:40:44

Updating, UK hospital policies on neulasta and similar injections seem to be wildly variable. Mine will give it for tax but not as a general rule for FEc. The last oncology doctor I spoke to described their use as 'controversial', so I think it's not just a money issue.

Thanks for the hot cross buns, Betsy. My favourite!

Speedypenguin Fri 21-Mar-14 21:47:02

Thanks for the replies.

I felt quite sick when I was pregnant but was only actually sick a couple of times. I think I just worry about feeling awful and there being no one here with me. I have great friends but not the same as having a partner.

The boys are 8 and 11 so I worry how they will cope. My eldest is quite a sensitive soul and was only recently talking about his gran dying and did she have cancer (she died from ovarian cancer 7 years ago). Really not looking forward to telling them. It was bad enough telling my dad!

I feel better after the surgeon said it was "small and early". It is 18mm and they couldn't see any evidence of it in the lymph nodes during the ultrasound. The weird thing was that I only felt it after I had my yearly appointment with the breast nurse and was waiting for my MRI and mammogram. As I found a lump I had an appointment straight away. It also helped when I realised that grade 3 was not the same as stage 3!

My hip has been hurting for a couple of months so I have been panicking about that. I am having a CT scan on Mon but they say they are doing that more to reassure me.

I guess I will have more questions after I know a bit more next week.

Thanks again

mildmay Fri 21-Mar-14 22:12:21

Thanks Betsy

malteserzz Fri 21-Mar-14 22:21:35

Welcome penguin though sorry you are here of course. Ask us anything please, nothing is off limits
Are you having chemo before surgery ? I've just finished treatment, all in all it took 10 months ! But pleased that this week I was able to go back to work, I'm a teacher sounds like you are too. I missed it so much

trice Sat 22-Mar-14 00:16:23

Hi Penguin. Children can be quite resilient, but it is not easy telling them when you don't have all the answers. Hope it goes well.

ConsiderablyBiggerBuns Sat 22-Mar-14 08:48:01

Hello speedy, welcome! you are definitely in the right place for advice, reassurance and company. I am just a couple of weeks ahead of you. I have my surgery (bi-lat dx and node clearance) scheduled for 8th April, my chemo won't start until a couple of months after that. It is interesting the different routes different hospitals seem to take. I am also worrying about pains in bones but this forum has managed to reassure me that firstly it is normal to focus on all sorts of other symptoms - I think we just become very aware of our bodies and secondly, even if the scare becomes a reality there are plenty of people on here still around to tell the tale. I told my dc ( girls 13 and 14) as soon as I had enough facts about the treatment plan to give them some information. They reacted in wildly different ways and continue to change their coping mechanisms on a daily basis but the lovely thing is that it has bought them closer. The school has also been fabulous as have dd1's friends (dd2 didn't want anyone to know). Good luck with that conversation. I felt so much better once I could be more open with them. As others have said, the waiting for results and also the sense of being a ticking time bomb is probably one of the hardest times. I can't wait to start treatment to eradicate the bugger.
Hello to everyone else. It was me asking about the alcohol during chemo so that was good news! Enjoy the weekend.

wineoclocktimeyet Sat 22-Mar-14 09:45:56

Welcome Speedy.
I also have a v sensitive 11 year old boy (and his 7 year old brother). Telling them was hard (even at that age the word 'cancer' is so scary), but we concentrated on the positives- that it had been found early and how good the treatment is and, what comforted him, was the fact that the Doctors had said that I wasn't going to die - I actually heard him telling a friend that I was going to be OK because the Doctors had said so! He doesn't talk about it often, but will ask random questions every now and then (usually at she most inconvenient times!), it obviously depends on the individual, but we've tried to be as honest as possible cos he's the type who would fill in the gaps himself otherwise.
Please feel free to PM me if you have any questions.
I am coming towards the end of my chemo (started in October) and surgery will probably be in May. I also work in a school as a TA and hopefully will be able to start back in September.

Morning <waves> everyone else, hope we all have a good weekend.

FelineSad Sat 22-Mar-14 13:05:47

Welcome speedy I know exactly how you feel. I'm in pretty much the same position as you although I do have a non cohabiting DP and a supportive ex. My boys are 9 and 13 (nearly 10 and 14).

So far I don't think I've shown any physical signs of illness so I don't think it's really sunk in with them. The 13 year old is in full self obsessed teenagerdom and has asked nothing about my condition or anything at all. So far I've not used the 'c' word but would tell the truth if asked directly.

The 9 year old I worry about more. He immediately said he didn't want to see me without hair but was initially excited to see my wig. However when I brought it home he said that it looks nothing like your hair (I had deliberately chosen a long wig as it looked more natural and I wanted something different) and didn't want to look at it sad.

Why is Emend considered so 'good'???

FelineSad Sat 22-Mar-14 13:07:26

PS Finally got the district nurse to come and give me Nulasta injection. However nearly snatched it back off him and did it myself after all as he poured over the accompanying leaflets and didn't seem to really know what he was doing!!!

Wren48 Sat 22-Mar-14 14:38:48

Feline, emend is great for people like me who threw up for six hours solid post FEC1. With emend, not at all in cycles 2&3! Transformation of the whole experience. Lots of people are just fine without it.
Glad to hear you finally got the injection. And no, you so don't want the nurse poring over the instructions!
I thought my 11yr old dd would be troubled by my loss of hair, and it was the thing she focused on in conversation with others. In the event she seems completely unfussed, and barely even notices what is on my head.

FelineSad Sat 22-Mar-14 15:56:28

Wren What a nightmare. Five minutes of uncontrollable vomiting yesterday was enough for me. My throat was really sore and then I started panicking about having a throat infection and running a temperature (I wasn't)

malteserzz Sat 22-Mar-14 16:18:16

Feline I'm glad you got the injection sorted, I didn't have them and wasn't offered them I don't know why

My 10 year old hated my lack of hair, actually he still hates it now I have a short style. My 14 year old is fine.

Speedypenguin Sat 22-Mar-14 18:04:34

Thanks again to everyone for your replies and support.

malteserzz- I am having the sentinel nodes op first but the main surgery will be after chemo. I am negative for Tamoxifen and Herceptin so was told the chemo is my insurance policy. Because of family history they are going to do the gene test and then I can decide how much surgery I want. Am thinking I will opt to have all tissue removed in both breasts but plenty of time to decide. Am gutted I am leaving my class but a Reception class isn't the most germ-free place!
Am glad you are now back to work.

ConsiderablyBiggerBuns wineoclocktimeyet FelineSad- thanks for advice about the children. I think I will be relieved when I have done it and then we can move on from there.

Hope everyone has a lovely weekend. Some friends are coming round for take away later so will enjoy a relaxing evening hopefully.

malteserzz Sat 22-Mar-14 19:22:02

Penguin I left my class in May, also reception. They've now moved on to Y1 but I had lots of hugs when I went back this week though they were a little confused by my new hair !

Lots of time to decide about your op then and I'm sure you'll find some good advice on here smile

foofooyeah Sat 22-Mar-14 19:34:55

betsy given up alcohol for Lent ..... How very foolish grin

Welcome to speedy nobody really knows how chemo will affect them. I coped fine, even worked part time as well, but some people ave a terrible time. Afraid it's just wait and see.

Throws some Belgian chocolate biscuits on the trolley.

ConsiderablyBiggerBuns Sat 22-Mar-14 19:50:17

Couple of questions. What is the difference between FEC and FEC- T? And what determines which you get? Also have any of you bothered with a cold cap? I went into our local underwear shop today, it is run by a friend of mine who specialises in underwear for mx. Was quite encouraged with the selection for both the softie and the prosthesis. Took DD1 who is quite enjoying being part of getting me prepared and sorted.

malteserzz Sat 22-Mar-14 20:28:46

I had a cold cap and was glad I did, it was very cold but not unbearable and although I lost most of my hair I kept some and it did grow back quickly. It's very much a personal choice though

Fec t is 3 lots of fec followed by 3 lots of tax. Which you get depends on what they think is best based on the analysis of the lump.

I agree foo foo, madness !

BetsyBoop Sat 22-Mar-14 20:40:46

argh foo, I'll have to pass on the Belgian chocolate biscuits, as I've given up chocolate for Lent too <what was I thinking?!>

Usually (and there are always exceptions)
nasty lump but nodes clear = FEC
stuff in nodes with any lump = FEC-T

(didn't do cold cap)

Hello, apologies for crashing in.

I'm not really sure what to say here..
I've had what felt like a denser area in my breast for a couple of months, but kept ignoring it or thinking I was imagining it. Found out this week that my cousin has breast cancer which made me think God I should just get myself checked and stop fretting. So I went to the GP on Friday and have now been referred to the breast clinic as she felt it was lumpy too. I was really expecting them to say it was nothing.

So of course now I am terrified, my kids seems sweeter than ever and I can't bear the thought of leaving them.

I've been feeling quite rough for a few weeks too, exhausted for no real reason and a tight throat and easily breathless. I am now utterly convinced it has spread to my lungs. My breast suddenly feels twice the size and heavy (it's not actually any bigger of course!)
And now when I poke it (which I am doing regularly) it feels ridiculously lumpy and I feel like a complete idiot for waiting.

I am also supposed to be going on holiday in a weeks time, so I was wondering if I could use this as a reason to ring and try and get an appointment this week.

The doc felt in my armpit, would she have said if she could feel anything there do you think?

Could it really have spread elsewhere in a couple of months?

sad

Mummywheel Sun 23-Mar-14 09:58:37

ConsiderablyBiggerBuns I have had 2 FEC and another 4 to go. My nodes were all clear so no T for me. Not doing the cold cap although I am surprised that although I have shaved my hair off very short there seems to be a fair amount still there smile

Cherry scones for the trolley

Mummywheel Sun 23-Mar-14 10:09:51

Hello HippoPottyMouth Welcome - you have come to the right place. You will get plenty of advice and hand holding here. What you are experiencing is quite normal in my opinion I went through pretty much the same. Feeling anxious and then imagining all kinds. It is a very difficult time and the ladies here are marvelous. Sorry to run but someone will be along shortly I'm sure with sound advice. Sending a Big Hug! x

Speedypenguin Sun 23-Mar-14 10:26:59

Hippo- Hi. I have had some lovely support from here. You have done the right thing in going to the doctors. I have imagined all sorts of things but the nurse told me that nothing would change in the 3/4 weeks before I start treatment so I can't imagine that in 2 months things would have changed for you necessarily- also, it might not be anything serious. I know the waiting is really hard though and your mind works overtime. I had a phone call from the breast clinic 2 days after seeing the GP to arrange an appointment so hopefully it will be quick for you too. Big hugs

malteserzz Sun 23-Mar-14 10:55:00

Hippo remember that the majority of people who are referred to the breast clinic are fine, just because we have been unlucky doesn't mean that you will be. It's normal to start imagining all sorts. Things don't move as quickly as you think, I was diagnosed on 1st May and didn't have my op till 4th June so they can't expect things to change in that time. Though of course you've done the right thing in getting in checked out.

ConsiderablyBiggerBuns Sun 23-Mar-14 11:24:25

Thanks for the replies about FEC/T. I already know my nodes aren't clear so I guess that means FEC-T for me. That is still along way off so will be back for info nearer the time.
Hello hippo the waiting really is the hardest bit and the imagining the worst. I don't want to minimise your fears because I found this quite irritating when friends and family did that, but did want to reassure that even if the tests confirm your fears, it isn't the end of the story, just the start of an unexpected one. I am only on the start of my 'journey' apologies for sounding like I am in the X factor, and I have already found this forum a real comfort and great source of real life experience, facts and tips. Keep posting.

Lilymaid Sun 23-Mar-14 11:30:39

I sang in a concert last night - Brahms German Requiem - all went well though as one of the extras (more experienced singers who boost the rather ancient choir) I worked pretty hard! This week I worked 4 days, went out 2 evenings with friends and spent most of yesterday singing. Seems odd that at the same time my harmoglobin levels are so low that I need a blood transfusion ...

Wren48 Sun 23-Mar-14 12:18:36

Blimey, Lilymaid, that's impressive! I miss my singing and look forward to getting back to it, but I'm not sure i could manage the German Requiem on low Hg!
Hi there, Hippo, youve done the right thing by getting yourself checked out. Don't beat yourself up for waiting; just focus on being on the right pathway now. Good idea to ring up - can't do any harm to see if they can fit you in before the holiday - most hospitals have one day a week when they see new people, so ring soon, perhaps. And it's completely normal to re examine every feeling in your body and decide the worst. It's a horrible time, and we all feel for what you're going through.

foofooyeah Sun 23-Mar-14 13:18:38

Cold cap: I did it for 5 sessions of FEC, kept my hair but made me very miserable. Couldn't bear it for the 6th session and my hair started falling out 2 weeks later. I will probably have to have some T now as found it unexpectedly in lymph nodes and I won't cold cap again.

Hippo: very normal to think its spread and all sorts of odd feelings. I was convinced I didn't have it and was quite surprised when they started doing biopsies!

difficultpickle Sun 23-Mar-14 14:32:48

Speedy I'm on my own with ds, nearly 10. It does make it harder when you don't have a partner on hand but it's not impossible. I found when I shared my news various friends rallied round offering to help. Some offers were vague and more 'let us know if you need anything'. Others were more direct 'tell us what we can do and if you don't we shall tell you what we will be doing'. I found the latter offers really delivered and I've been able to ask them for specific help - eg school runs, playdates for ds as well as food runs for me in hospital (I had in patient chemo and was stuck in isolation in hospital for 5 weeks).

I didn't tell ds I had cancer as at the time he knew someone with cancer and I didn't know their prognosis (didn't want to link them to me when not certain what the outcome would be). He's worked out that I do have cancer now I've had chemo and lost nearly all my hair. He worried before the treatment and worried about the drugs killing me. I couldn't give him any assurance about being cured as it isn't a given for me. I did tell him that I was in the best care with the best doctors in the world (being treated at an international centre of excellence for my illness) and if anyone could make me better they could.

He's had a few meltdowns at school which haven't been well handled but I also arranged for him to see a child psychologist so he had someone he could confide in and who could help him deal with what is going on with me. He wrote a list of 16 questions about my illness that completely floored me (things like 'I worry what my last memory of you will be'). It was hard to go through but I think helped him process things. All I would say is don't overload them with information even if you want to get everything said.

Hope everyone is enjoying a sunny weekend. I'm trying to do normal stuff and feeling knackered smile

difficultpickle Sun 23-Mar-14 14:34:28

Lily I'm amazed at your energy but everyone's coping level with haemoglobin is different. My consultant says he knows people with a level of 60 where they can function whereas I really struggle when my level drops below 90.

Wren48 Sun 23-Mar-14 15:11:04

On the cold cap, I was initially quite keen, but decided against the day before as it was just another thing to worry about - and I thought it might just be simpler to lose my hair rather than worrying whether I was losing it, if you see what I mean. I also get migraines and was concerned that the cold (on wet hair) would trigger them. Scarves do fine for me; not bothered with my wig, although I do have a smart ish event next Saturday (if I get there) at which point I may fret for the first time about whether scarf matches outfit. Hmmm.

Lilymaid Sun 23-Mar-14 16:32:44

Pickel I'm amazed with my energy too ... particularly as I'm on oral chemo now and when I was on hormone treatment I was dragging myself round like an 80 year old. I'm making the most of the good bits as bad stuff may be round the corner.
Hope your energy levels improve as it is so wonderful to feel almost "normal" again!

Speedypenguin Sun 23-Mar-14 16:53:57

difficultpickle thanks for sharing your experience. Glad you had some good friends to help. Have told the boys this afternoon and they took it reasonably well. They both have had lots of questions and the eldest started off with "Is it cancer?" so we went from there. I will be keeping an eye to see how they are coping as it sinks in. I guess until I start having some treatment it won't be a reality to them. They have decided they want to draw a face on the back of my head to scare people! They are also hoping I will turn into a smurf when I have the blue dye!

Interesting to hear experiences about the cold cap. Not sure what I want to do yet.

kitkat1967 Sun 23-Mar-14 17:05:12

hello everyone. I had 3 lots of cold cap but absolutely hated it - it just seemed to make my nausea worse so when I changed to weekly Tax I was quite pleased not to continue.

Hi Lily - I'm glad to hear you are getting on so well and doing so much. Have you had your blood transfusion or is that still to come?

Foo - what has happened to you? I had thought you were nearly done with your treatment - have they changed their diagnosis? Here you get the SNB done up front even if you are having chemo first as they need to know that information to plan your treatment.

Malt - are you getting set for week 2 - are you going to do some teaching this week?

I went to the gym first thing this morning and then went to my sewing group - I have made most of a blouse - complete with a ruffle down the front - so I am chuffed smile. I can't finish it at the moment as I have come home to my dining room taken over by my DD for video recording!!

Marshy Sun 23-Mar-14 17:36:19

Hello everyone!
Haven't been on for ages so waving hello to all, old and new.

Just wondering what you all make of the makeup free selfie thing on FB and whether anyone has joined in? I haven't. I don't know how to say that having your photo taken with no make up is no where near as scary as having cancer without sounding a bit bitter and twisted; so have kept schtum. I guess the fundraising is good though.

I saw my surgeon this week. Very happy with my reconstructed breast and am on the waiting list to have the other one lifted so all good, except.... I mentioned I had had some vaginal bleeding (am peri/post meno and on tamoxifen) and she's now referred me to a gynaecologist and I have an urgent appointment for a trans - vaginal pelvic scan. I have Googled of course and scared myself witless.

And the scan falls on the day I am due to be interviewed for the job I have been occupying for nearly 2 years.Should be fine but you never know.....so am a bit stressed and down after a few weeks of thinking life was getting back to some kind of normal.....hah!

chocohontas Sun 23-Mar-14 18:21:17

Hi everyone - sorry to intrude on the thread. I put a question on general health but someone suggested that I repost here.
I have had a mammogram/ ultrasound and biopsy on a breast lump but I've been recalled to have a 2nd biopsy because although the first one was clear the dr is concerned that they didn't get exactly the right place and wants to just double check everything.
They are going to do a 'vacuum' biopsy this time and just wondered if anyone has any experience of this and if any after effects. Thanks

Lilymaid Sun 23-Mar-14 19:06:39

Hi Marshy I too have just scared myself witless by looking at the Breast Cancer Care Forum. All we can do is just carry on as usual ... I can imagine that having to reapply for your own job is pretty dispiriting too.

Wren48 Sun 23-Mar-14 19:47:25

Chocohontas, I'm really sorry not be able to help with the vacuum biopsy, but I hope someone with some experience will be along soon.

Really, fingers crossed for you tomorrow (is tomorrow when you get your results?).

Speedy, good that you told your kids; I found it much easier once mine knew what was going on. You're right, it's the treatment that brings it home, but even that can achieve a sort of normality if you keep talking. Ds2 was very keen on a voldemort turban (thanks, son).

Kitkat, good to hear about the ruffles; I was given some sew your own knickers for my birthday, so that might be my first project!

Marshy, I thought the selfie thing a bit ghastly until the charities managed to get themselves tagged onto it and it actually started raising money (it started out completely pointlessly). Certainly not done it myself, though!

wineoclocktimeyet Sun 23-Mar-14 19:58:56

Chocohontus, I had a vacuum biopsy - was ok, had injection to numb the area, then had to sit with my boob in a mammorgram type machine while they positioned the needle. It didn't hurt but I felt quite a lot of pressure/pushing.

It was sore when the numbness wore off, they said I could take paracetamol but I didn't need it to be honest.

Good luck, if you have any questions, please ask.

wineoclocktimeyet Sun 23-Mar-14 20:01:26

Meant to say earlier Speedy,one of the questions that my boys asked, which I hadn't anticipated was whether cancer is infectious, ie whether they could catch it (bless them).

We know you can't, but might be worth making sure they don't worry about it

harrietv Sun 23-Mar-14 20:11:04

Hi choco I think I had a vacuum biopsy - it made a really loud click at biopsy time which seems to be the feature of a vaccum one. If I did, then I'd say don't worry about it. They give you an local and you don't really feel anything, just a bit of tugging and some clicks. Afterwards I healed fine - was a bit tender for a week but nothing too bad.
Am suffering from pretty swollen boobs now the drains are out - it's uncomfortable - feels like when I got engorged BFeeding my DSs. Not sure if it's a seroma or just general swelling, see dr tomorrow but looking forward to somewhere down the line when the aches are gone. It's only been a week so I'm being impatient. blush

Thank you for the replies, I've been OK most of the day but now the children are in bed and I've uninterrupted access to Google, I'm a mess again.
DH has had to leave for the night to go with his mum to an appt tomorrow as she's been v ill and we think she might be getting some bad news delivered. I will be very glad when this week is over. At least DH being away gives me an excuse to work from home tomorrow and be free to hassle the clinic on the phone..

I am in awe of all of you functioning as normal.

I actually had a big rant at the facebook selfie thing last week, found it all v annoying, perhaps this is karma!

foofooyeah Sun 23-Mar-14 20:29:43

kitkat there was no sign of anything in lymph nodes, but due to size of lump I had chemo first but just FEC. Had mx with SNB and that came back with cancer in both nodes. So having full node clearance tomorrow and the results of that will determine what happens next.

malteserzz Sun 23-Mar-14 20:44:36

Foo foo I hope everything goes well tomorrow I'll be thinking about you x

Kitkat I'm teaching 1 day this week, really looking forward to it though I've picked up a cough this weekend. Lots of googling of lung cancer symptoms but best friend and her dd came round today and they have the same symptoms so hopefully it's just a cough

I was initially cross at the FB selfie thing but have to admit that all of the money raised is fab

Hippo it's hard, but you will get through everything somehow sorry to hear about mil

Love to all and hugs and tea for those who need them smile

chocohontas Sun 23-Mar-14 20:50:53

Thank you so much for the quick replies. I'm having the vacuum biopsy later in the week and will then wait 7 days for the result.

kitkat1967 Sun 23-Mar-14 20:56:06

lordy foo what a pain. Obviously different areas have different protocols then. Because I had a 'big' lump we worked backwards -so CT scan first then as that was clear SNB then decision made on type of chemo. What a shame - I do hope you don't have to have more chemo? Did the FEC shhrink the lump much? If so they may conclude that you had the right sort of chemo anyway.

marshy - I'm on Tamoixifen so have done a bit of general research - I know there can be scary issues if you bleed but I also don't think it is that uncommon - they are just cautious and check everything out. You've not been on it long have you so I doubt it would be anything serious.

Wren - good luck with yiur knicker making. I've just spent ages taking the sleeves off my blouse so that i could make the neck and sleeves smaller then putting it back together. Also had to take
inches of each side angry. Ruffle still looks fab though wink.

I'm still losing a couple of pounds a week - due to my exercise and healthy eating (not on a diet to try to lose weight) so it's hard to keep up with my changing shape. As I'm not trying to lose weight I don't know when it will stop - I'm guessing at some point I will find a healthy balance and stay there hmm.

kitkat1967 Sun 23-Mar-14 21:02:11

Malt have you started your Tamoxifen yet? If so is it going OK? Hope you enjoy your teahcing day - you've a few days yet to get rid of your cough (my DS has also just had a cough so maybe it's common right now).

malteserzz Sun 23-Mar-14 21:40:54

I've been on it for 2 weeks Kitkat and I don't know if any symptoms are from that or the end of rads ! Feel a bit tired but no hot flushes yet though generally I feel quite warm ? The rads burns have really healed this week though which is good

Popping in to mark my place, waving hi to everyone.

Hello to the new ladies; I'm sorry you find yourselves here, but please feel free to ask anything at all. And to rant, wobble, cry, laugh.......

I've had a busy few days of being normal; so nice not to be rushing to the hospital every day. I went to the gym this morning and I now have enough hair (well I think so) to go bare headed. So lovely to exercise without a stoopid bandana on my head making me even hotter. As it's just been Sport Relief I'm relying on people just thinking I've shaved my hair off for charity hmm.

Also had a lovely afternoon collecting money for Marie Curie yesterday on Guildford High St - so many people came up and spoke about their own experiences, it's amazing how common this blasted disease is.

I've been taking Tamoxifen for 2.5 weeks now. Can't say the hot flushes have got any worse since taking it, in fact I think they're slightly fewer, and I haven't experienced any other side effects so far (madly touching wood at this point). I'm taking evening primrose to counteract any grumpy hormonal mood swings and so far, so good. I am still going with the acupuncture, so maybe that's having an effect too.

Off to London tomorrow for a lovely indulgent day mooching around the National Gallery. With frequent stops for coffee, cake and people watching. Bliss.

foofooyeah Sun 23-Mar-14 22:00:51

Yes, FEC shrunk the lump massively but even if T gives me just another 1% I will take it.

kitkat1967 Sun 23-Mar-14 22:07:23

foo - I had to decide whether to have the second half of my chemo (3 x FEC did nothing much for my lump) and my onc said the max increase it would give me was 5% and that was enough for me to go for it. It's very hard to decide though as Tax does have more long lasting SEs.

Glad everyone seems to getting on Ok with Tamoxifen. I've done 2 months now without any problems so fingers crossed that's how it will stay for all of us.

reallyreallyworried Mon 24-Mar-14 06:20:56

wren thanks for asking. Results are actually tomorrow! Already dreading it. sad

foofoo good luck for today. Hope all goes well xx

malt think loads of people have coughs right now. I've had mine for 5wks!! So I'm sure it's nothing to worry about! Just annoying! Good luck with work this week.

Hi to everyone else new and old. Xx

foofooyeah Mon 24-Mar-14 09:35:18

Really .... Good luck to you too for today thanks

I'm just waiting to go down for surgery .... I'm next apparently!

weebarra Mon 24-Mar-14 09:45:21

foo foo and really, good luck for today. I am in bed with DD as also have horrific cough.

amberlight Mon 24-Mar-14 09:49:05

Hi all. Welcome from me, Speedy. That size and 'triple negative'? Your starting odds are 94% success rate with the new options. If that helps.

CBB I had FEC-T, 4 lots of each, after they found a lump that was either 2.3cm or 4cm (big argument between teams - don't ask me...) and they worked out it was HER2+ Grade 3. So sometimes they offer more chemo over longer if they think there's any greater need to whack it with something. Still went to work all the way through that lot, so it's totally variable how people respond to even the heavyweight chemo. Just body chemistry response. Didn't go for cold cap, but I did make sure I drank iced water during chemo itself to minimise its effects on my mouth...and for the T part of chemo, used frozen mitts for hands and frozen veg on my feet (no, really grin ) to minimise nail damage and nerve damage. And it worked, too. Obviously not so frozen that you get frostbite, though. Lots of chemo wards have frozen mitts if you ask. Or bring your own veg in layers of bags. And I made sure I took ginger supplements for three days before chemo, as those are proven to reduce nausea in many people. Plus I used seabands wrist straps, which also helped (no idea how). I did lose all my hair but found fab wigs which worked really well for me and looked pretty natural. Others prefer other approaches, which is all totally ok. Whatever works for each person.

<grabs a choc cookie> Thanks!

traviata Mon 24-Mar-14 10:32:04

hello everyone. I have been popping in occasionally, but reading avidly, and I can't say how much these threads help. Thank you to everyone for sharing experiences and wisdom.

I'm just back home after single mx and node sampling, and feeling very well indeed luckily. Back in two weeks to see what chemo regime I need, and whether they found anything in the nodes.

I have two small tips for anyone awaiting surgery - I took a small canvas shopping bag into hospital with me to stuff my drain in, and it now hangs off my shoulder all the time, including at night. Much easier than shuffling about with tubes over your arm. Also, don't do as I did and wear a one-piece dress with long sleeves - there is nowhere for the drain to come out, and in the end I came home wearing my pyjamas (not that I cared).

I've decided to let my hair dye grow out, and face the grey ( it will be 100% grey I think). In many ways that feels like a bigger change than losing a boob.I also realise it's time to lose weight, as I can't bear to be bigger round the waist than round the chest. So many changes.

smee Mon 24-Mar-14 10:50:31

Wandering in to wish foofoo well with her node clearance. What a sod to have to go back for that. hmm

Malt, you just have a cough. Honestly I more than get the paranoia, but from now on this is what you'll do. Takes a while to start to see any and all illnesses as sinister, but it really is just a cough. smile

Another here who had FEC, then T (3 of each). Four years on now, so it seems to be working (crosses everything in sight) grin

kitkat1967 Mon 24-Mar-14 10:56:34

yes, good luck to foo for today and for really for her results tomorrow.

I also had FEC-T - I only needed the 6x FEC but had such a nightmare with 3xFEC we swapped to T anyway - which I had weekly for 9 weeks (so I was probably over-treated but better safe than sorry). I've just been signed off by my onc so hopefully it's done it's job and I will never have to return grin.

Well I rang the clinic this morning, they had a cancellation and I'm sitting in the waiting room now! V pleased to not have to wait but trying not to have a breakdown as everyone else has got people with them.

God luck for your surgery foo foo

kitkat1967 Mon 24-Mar-14 11:06:05

well done Hippo, that's good news you are being seen so promptly. I always went on my own - you will be fine - there's just a lot of waiting. Hope you get good news at the end of it.

Wren48 Mon 24-Mar-14 11:34:16

That's great, Hippo. Well done for sorting that. Good luck.

And good luck with the op, Foo foo.

ConsiderablyBiggerBuns Mon 24-Mar-14 14:17:08

Lots of people needing lots of luck this week, fingers crossed for all of you. Xx

Thanks again everyone, I had an ultrasound and all is fine. No mammogram as apparently too young.
I will bow out from here with lots of good wishes for everyone.

If anyone has any idea for things I can do for my cousin then please suggest away, she has a mastectomy tomorrow and chemo to follow, generally good prognosis apparently, but anything you found useful or nice to receive. I don't live nearby, so needs to be postable.

Also it seems my Mil has lung cancer so I'm not exactly skipping today but certainly pleased to have one less thing to worry about.

Good luck and thank you again x

reallyreallyworried Mon 24-Mar-14 14:35:46

Just had a call from my Oncologist. My results are back and he can fit me in at the end of his clinic, IF I would rather go today hmm I asked if he could tell me over the phone, but he's not allowed to! So looks like I will have my results in a few hours shock Now I seriously feel sick!

So if there are any hands around to hold, I could do with them around 5 ish!!!!

traviata Mon 24-Mar-14 14:44:49

sorry to hear about your cousin and MIL Hippo but good news for you.

perhaps you could send your cousin some DVDs, a box set of something she'd like?

chocohontas Mon 24-Mar-14 14:46:01

Hope the appointment goes ok really. I've had a bit of waiting to do over the last few weeks with tests etc and it is difficult.

Glad your ultrasound was all fine Hippo

chocohontas Mon 24-Mar-14 15:02:16

Sorry really please ignore my message. I was being totally ditsy and confusing with someone waiting for initial test results blush

(Obvioulsy same thing applies - hope you get reassuring news at 5pm) x

Wren48 Mon 24-Mar-14 15:15:26

Ok, really, handholding all set for later. Thinking of you.

Mummywheel Mon 24-Mar-14 16:19:41

Another hand to hold really hope all goes well.

Great news Hippo smile

difficultpickle Mon 24-Mar-14 16:26:19

Good luck really. I hope the news is reassuring.

foofooyeah Mon 24-Mar-14 16:32:36

Really .... Thinking of you

My op went wellbut v painful after so have had a shed load of morphine and feel just fine!

smee Mon 24-Mar-14 17:03:43

Great news for you, Hippo.

Really am handholding. Hope you get the best of news. xx

Morphine sounds good, foofoo. Are you still in hospital? Hope drains not too irksome and pain goes soon. xx

malteserzz Mon 24-Mar-14 18:51:46

Hope really is ok x

Foo hope you can escape soon glad it went well smile

Thanks about my cough, if it was someone else I would be saying the same but you know there will always be that doubt now

Had a lovely day for dh birthday, shopping and posh lunch smile

UKsounding Mon 24-Mar-14 20:30:18

Thinking of you Really

Thinking about you really lots of hands here to hold,
DF had a really bad weekend, couldn't eat hardly anything, even jelly was painful and yesterday became really despondent saying he wasn't having any more radiotherapy etc etc, it's heartbreaking,
So today at radiotherapy session he spoke to an oncologist who gave him morphine to use alongside his other medication. I really hope it helps. This disease is such a bastard sad

wineoclocktimeyet Mon 24-Mar-14 21:43:30

I'm also thinking of you Really.
Glad to see you go Hippo!
Feeling a bit bruised, took 6 tries to get into my port for my tax today, so look like a pincushion!
Also had a meeting with my surgeon, have a date for the bmx - 20th May, was going to be the week before but that's my birthday so wanted to avoid that. Feeling a bit wobbly, it's made it real actually having a date.
Hugs to everyone who needs one.

weebarra Tue 25-Mar-14 07:11:03

Thinking of you too really. Wine - not just me where they have issues with the port then! Sometimes it takes ages. Cough is still bad, I feel ok but have chemo tomorrow. I should probably phone the ward as I don't want to infect anyone.

foofooyeah Tue 25-Mar-14 07:16:17

Mornin all, waving from my hospital bed. I am very lucky as ward is small and care exemplary. Something rather nice about being tucked in at night with a hot drink and pain meds .... Makes me feel like a child again.

Going home today.

malteserzz Tue 25-Mar-14 08:28:43

Keep checking for news of really. Hope you are ok if you are reading x

Foo foo glad you are ok and have had good care. Yay to getting out of there !

Nipping into school today to help them on a walk around the village, teaching all day tomorrow eek hope I can remember what to do !

Hope everyone has a good day smile

greeneyedcat Tue 25-Mar-14 08:54:18

Also thinking of really and sending hugs.
Sorry to hear your DF is struggling honeybee, hope he can keep going with the rads. How many more does he have?

reallyreallyworried Tue 25-Mar-14 11:11:39

Hi all

Thanks for all the hands to hold, I hope I didn't squeeze too tightly! So it appears I have secondary cancer in my liver! It appears there was a small tumour there, they estimate it might of been around 3cm! But they can't be sure as the Chemo has shrunk it, all that is left is an area of scarred tissue! Sadly the scarred tissue still contains Cancer cells.

Oncologist is going to discuss with surgeon today, whether surgery is going to be possible or if MORE Chemo is the answer! But they will have to get the go ahead from the neurologist if they want me to have more Chemo (and the go ahead from me)

Current plan is to carry on with Radiotherapy to the breast and collar bone area, as planned. They will re scan my liver in a few weeks and see if there is any change in size, then hopefully they will have decided on the 'best' plan of action!

Right I should get back to work, I have a fish pie to make for my charges tea! No rest for the wicked, so they say.

foofoo hope you get to go home today! Although sounds like you had a pleasant evening wink

malt enjoy the walk! Good luck with teaching tomorrow! I'm sure you will love it!

Thanks greeneyedcat he has 17 more sessions, he saw the dietician this morning, the machine broke down while he was in ithmm so had a bit of time to wait! She weighed him and was pleased he's lost only 1Lb this week and has prescribed some shakes for extra calories,
He seems abit more positve again today, I'm just off to take him out for a quick lunch (soup!)
Also his neck is very red this morning so hes put the cream on which hopefully will help

malteserzz Tue 25-Mar-14 11:24:05

Oh really I'm sorry to hear that sad I'm still shocked that they gave you the wrong results before thank goodness they realised. Lots of love to you. Have you got a date to start rads?

UKsounding Tue 25-Mar-14 11:33:13

Crap!

amberlight Tue 25-Mar-14 12:01:12

Really, I do have a couple of choice words to apply to the situation, but I shan't say 'em in public.
Be of some good cheer, though. One small bit in the liver, if properly treated, has an 80% chance of long term success. IF properly treated. That means proper attention given to surgery AND/OR proper targeted radiotherapy etc for some people. You need a long hard talk with the team and no excuses from them. Especially after this foul up.
And I wonder if there is some other woman who was given your results and told that they need such treatment, when they didn't.... (eek)

Strong brew all round, I think.

Wren48 Tue 25-Mar-14 12:02:12

Thanks for letting us know, really. That is tough news and I am so sorry to hear it.

Lilymaid Tue 25-Mar-14 12:07:20

Really more hand holding from me! I also have secondaries in bones and some evidence on liver so you are not alone. I'm on oral chemo at present and feeling pretty good.

Ah really, that's tough. flowers along with hand holding.

smee Tue 25-Mar-14 12:24:21

Really, that must have been quite a shock. I know it's anecdotal, but I have a v.good friend with liver secondaries - or rather who did have liver secondaries. She had an op and two years on still no sign. There does seem to be lots they can do with the liver. xx

Foofoo, hope you're home soon and not too sore. smile

trice Tue 25-Mar-14 13:04:09

Sorry to hear your news Really, you are having a terriblytough time at the moment. I hope your treatmentimproves from now on.

mildmay Tue 25-Mar-14 13:13:32

Really sorry to hear your news,but good to hear positive sfuff from Smee.
Just a quick question .have appointment for gated cardiac scan is this the norm do we all get one before starting chemo. im going to get FEC-T,but have been told lymph nodes are clear.

kitkat1967 Tue 25-Mar-14 13:27:26

Really - so sorry to hear your news - it's awful how you have been treated. Hopefully you will get Gold Standard treatment from now on.

Mildmay - I had an Echocardiogram before my chemo - I'm guessing that's similar.

malteserzz Tue 25-Mar-14 13:28:12

Mildmay no I wasn't offered that. Doesn't mean they think there is something wrong with you though just that different hospitals have different procedures

foofooyeah Tue 25-Mar-14 13:30:03

Really .... Am so sorry to hear your news. But take heed to what Amber says.

I have a friend withbowel cancer, he had secondaries in liver that were cut out and no re occurrence in 3 years. I know its one of those 'well my friend' stories but thought it was something positive to share.

Really - so sorry to hear your news. Good you can progress with the rads, get that bit out of the way before your next bit of treatment. Still astounded by the initial cock up with your results though.

Lilymaid Tue 25-Mar-14 14:16:07

Received in post a letter inviting me for a mammogram as part of the routine 3 yearly screening for the oldies like me. I've just phoned to cancel!

difficultpickle Tue 25-Mar-14 14:19:05

Really sorry to hear your news. Hopefully you will get the treatment you need and like Amber says you need to be forthright with your oncology team.

I've got my bone marrow biopsy tomorrow and I'm keeping everything crossed that I can go ahead with the stem cell transplant without a need for another chemo inpatient stay. According to blood test results today chemo seems to have worked so I'm hopeful.

So sorry about your news really, like someone said, I wonder if another person got your results?! It's worrying when you rely so much on these professionals to get things right,
Let's hope they sort you out once and for all this time,
On a positive note, DF managed to eat some cauliflower cheese after his morphine smile

thornrose Tue 25-Mar-14 14:35:54

I hope it's ok to post here on behalf of my mum! She had breast cancer 4 years ago, she had the lump removed and radiotherapy. She made a good recovery, thank goodness.

She has been taking Tamoxifen and she hates the side effects. Night sweats, hot flushes, restless legs and terrible disturbed sleep mainly.

She wanted to stop taking it but she was persuaded to continue. What kept her going was she could stop after 5 years.

She's just had her annual check today and has been told it is now recommended to take it for 10 years, she will find out for sure at her 5 yr check next year. She is very upset and emotional about it and says she can't take it anymore sad

Her oncologist recommended a low dose of an anti depressant (I can't remember the name of it) which can help. I wondered if anyone had tried this and if it had good results?

Or any other tips re Tamoxifen side effects?

Good luck to you pickle

amberlight I know you are a whizz with all the stats and was wondering if you know the prognosis with vocal cord cancer? DF's tumour is on his right vocal cord (T1a)? As far as they can tell it's not spread. He's having a total of 33 sessions of rads,but no surgery or chemo, what are the chances of it recurring? Assuming they get rid of it all in the first place? TIA

Hi thornrose I started taking tamoxifen 3 weeks ago, and was also very concerned about the side effects when told I'd be taking it for 5-10 years. The hospital where I had my radiotherapy recommended I try acupuncture, which has a great track record in dealing with hot flushes/night sweats/sleeplessness. I'm now having weekly acupucture sessions, the lady treating me recommended a course of at least 8 sessions. I've now had 4 treatments, and I have to say, I think my hot flushes have improved - less frequent and less overwhelming. My sleep is also improving. My hot flushes and sleeplessness started in December whilst I was having chemo, so whether its a combination on the chemo drugs leaving my body and the acupuncture I couldn't say, but I do feel better.

UKsounding Tue 25-Mar-14 14:55:40

Fingers crossed for you Difficult

Really I am sure that you are still trying to digest this latest piece of news. I am so upset for you. I simply can't imagine what it must be like for you to hear that under the circumstances. I am sending you my very best wishes over the ocean and I have my fingers and toes crossed for you.
In the USA they treat liver mets differently to the UK or Canada. They are much more aggressive and routinely surgically remove lobes of the liver to reduce the tumour load. (The liver can regenerate.) In Canada and the UK the belief is that surgery will encourage angiogenesis and is therefore a bad thing. Patients here in the Great White North have been agitating for a more aggressive approach to treating liver mets specifically and I believe that there has been one (very recent) study which showed a benefit for surgery on secondaries.
The impression I have from my medical oncologist is that the Canadian approach is to hit aggressive bc hard initially, but if it recurred any treatment would be symptom management. I like and trust my MO, and I believe him to be simply telling me how it is. However, I take this information he gave me as warning that if I did have a distant recurrence I would have to be incredibly proactive and advocate very very hard for them to do something rather than nothing.
If I was in your shoes (and I am not and I don't know how I would feel if I was) I think that I would want a team I could trust, I would read up as much as I could about the options, and I wouldn't take anything as a given - especially re. The liver. The best way forward won't necessarily be clear, even when you have had time to get your head around it a bit more. It doesn't hurt to ask really difficult questions to the oncs though, and make them explain until you understand the pros and cons of everything. Even the chemo option is complicated as there are many more options available to you now. The USA forum breastcancer.org may provide a different perspective to treatment options than you will get on UK or Canadian ones....
But mostly I want to just give you a hug, and let you know that I am thinking of you, and I still believe that the top of the mountain is just up ahead for you. With luck like yours atm, I wouldn't recommend buying a lottery ticket though ;-)

thornrose Tue 25-Mar-14 15:00:13

Thanks for the quick response Handbags that's interesting, I'll recommend that to mum. She's put up with it for 4 years and I think she's totally fed up. She sounded so down today it worried me.

I wonder if the annual checks are more stressful than she makes out?

malteserzz Tue 25-Mar-14 15:16:05

Thorn rose I bet she does find them very stressful, it's a reminder of what she's been through and there's always that panic that they will say that it's come back. She's probably trying to protect you from that. I've only been on tamoxifen for a couple of weeks but I have read that there are different brands and some people get on better with some rather than others so it might be worth her asking about that.

thornrose Tue 25-Mar-14 15:19:38

She didn't even tell anyone she was going malteserzz sad I'll mention that there are different brands, I'm pretty sure she doesn't know that, thanks!

UKsounding Tue 25-Mar-14 16:43:53

I have had two brands of Tamoxifen far (4 months in). I definitely have different side effects with the two brands. I can empathize with your mum Thornrose though as I feel pretty fed up with both sets...

thornrose Tue 25-Mar-14 17:39:21

UK flowers I texted mum both bits of information. She texted back that Acupunture is too expensive (she is retired). I'm not sure if that's a knee-jerk reaction or if she has looked into it

I'll leave it a couple of days before mentioning it again.

snailsontour Tue 25-Mar-14 18:18:11

I'm so so sorry to hear your news really. Can't add anything, but wanted to send hugs. There are lots of treatments out there, and lots of good positive stories! Xx

Mummywheel Tue 25-Mar-14 18:24:33

So sorry to hear your news Really thinking of you. Hopefully this is just a setback and with the correct treatment you will conquer this x

reallyreallyworried Tue 25-Mar-14 18:59:17

Wow I am totally overwhelmed with all your kind messages! Thankyou so much!

So here's the weird thing! I don't feel upset, angry, sad, etc etc etc I had gone to the appt yesterday thinking the worse and when he told me I just went into auto pilot asking 101 questions! It was like I was talking about someone else!

Then I came back to the house, had the best nights sleep I have had in months and then went to work today!

No tears! Nothing!! Isn't that really odd!? I have my Rads starting tomorrow and thats all I can think about right now! I'm not sure how I should be feeling about the latest results! I've read all your messages and you all sound more emotional than me! Odd??

Speedypenguin Tue 25-Mar-14 19:00:58

amberlight thanks for info about %. I hadn't been brave enough to look into it. Met the oncologist today who talked about how mine is more likely to travel in bloodstream rather than through the lymph so am now not as calm as I was. I guess this is why I have to have chemo first. He also said I was triple negative and it is 18mm. Is that unusual? it all feels much more real now and I have a date for first chemo 2 days after my sentinel nodes so am hoping I will be ok for it. I am to get FEC-T.

really sorry to hear your news. Thinking of you.

malteserzz hope tomorrow goes well. Tomorrow I want to sit with every child, hear them read and chat with them while my fab student teacher is in charge of the rest. That will hopefully keep me going when I can't be there.

Hello to everyone else and thanks for all fab advice to keep me sane.

Marshy Tue 25-Mar-14 20:07:49

Bloody hell really! How completely vile for you.
They had better pull the stops out to give you A* treatment!

Pickle - fingers crossed for your biopsy.

Re tamoxifen, I've stopped taking it pending my pelvic scan on Monday and gynae appointment some time soon I guess. I figured a fews weeks off it wouldn't make a fat lot of difference but just didn't feel right to keep taking it at the moment. No bleeding this week, plenty of night time flushes though. Hopefully you're right kitkat and it's nothing untoward

Tiny100 Tue 25-Mar-14 20:15:44

Really - So sorry to hear your news. I don't think your reaction is odd, I think you might just be in shock. I know that you have had various problems with your Team/Hospital, how do you feel about continuing your treatment with them? I am not sure where you are in London, but I would recommend my Oncologist. He has both an private and NHS clinic in South London. Let me know if you would like his details and I will PM you.

Tiny100 Tue 25-Mar-14 20:28:58

Really - I meant to add that chemo for advanced BC is usually more 'gentle' than chemo for early BC. I had an allergic reaction to Docetaxel so I was put on Paclitaxel, which is usually give for advanced BC, and have found it much easier to tolerate than the Docetaxel, (which I know you hated).

amberlight Tue 25-Mar-14 20:31:38

Triple negative is not as common as ER+ but it's easily whacked with chemo etc. And there are nifty trials of new potions happening if for some reason it sneaks back in later years. It also only misbehaves for a couple of years then runs out of oomph (generally). Whereas other sorts can reappear more easily many years later. So triple negative has some advantages sometimes. They'll watch what chemo does to it, then consider best options.

Speedypenguin Tue 25-Mar-14 20:56:48

Thanks amber. Am having a really wobbly evening tonight and no one here for a hug so your comment is really appreciated.

smee Tue 25-Mar-14 21:25:39

thornrose, just on your mum you could research local cancer centres to her as lots offer holistic therapies such as acupuncture for free. I think the thing to do is to try and find her ways to help her sleep. Better to stay on Tamoxifen if she can it gives you much better odds against recurrence. If she really can't there are other drugs she could try. They all have side effects though.

Really, odd reaction is maybe normal as this is all so hugely odd. Biggest shock is initial diagnosis of cancer and you've already been through so much. You know now how much they can do to zap it. Still think you deserve all our hugs though. xx

Speedy, listen to our Amber for she is v.wise. smile Just wanted to add that 18mm isn't that big - anything under 2cm is considered on the small side I think. I had FEC-T. 4 years ago now. You'll feel better once you've started . I know that sounds odd, but once you're started and know how you'll react you can cope.

ConsiderablyBiggerBuns Tue 25-Mar-14 21:36:49

Is this the only place on mumsnet where it would be acceptable to keep a spreadsheet so i can keep up with who needs a hand to hold, fingers crossed or a big hurrah? really - crappy news but at least you now know, the unknown is a very scary place. Probably irrelevant, but my friend had a secondary tumour in her liver from kidney cancer, and it disappeared by itself while her primary tumour was being treated - oral chemo only. Anyway, thinking of all of you lovely people. Two weeks until my bi-mx. Talking of which, how are you doing harriet?

Speedypenguin Tue 25-Mar-14 21:37:46

thanks smee
Have stupidly googled and everything says about triple negative having a lower survival rate. I have been trying to keep myself positive and hold it together for my boys but am having a 'scared' evening. Hopefully a good night's sleep will help.

BetsyBoop Tue 25-Mar-14 21:38:11

just catching up after a mad couple of days

really - sorry to hear your news, but has already been said, a number of potential treatment options.

foo - glad you are doing ok after your ANC

thorn - I think evening primrose oil is also supposed to help? Also some Drs will prescribe gabapentin to help.

speedy - amber is our resident "wise owl" who always knows just what to say to quell a panic. smile

<waves> to everyone

weebarra Tue 25-Mar-14 21:39:49

Sorry to hear your news really, you're always amazingly strong on here.

BetsyBoop Tue 25-Mar-14 21:55:18

Oh and speedy - step away from google! We've all done it at some point and all it usually achieves is scaring the pants off you. Much of the information you find is so way out of to be useless and irrelevant as treatments have moved on so much in the past few years.

Wren48 Tue 25-Mar-14 22:28:49

Speedy, Betsy is right. step away from google. And ((hugs)) to you as well. It's a horrid time.

Tiny100 Tue 25-Mar-14 22:53:14

Hi Speedy, I have TNBC too. Patricia Prijatel's FB page is a much more positive read, in fact her latest article addresses the language that is used to report TNBC.

Surviving Triple Negative Breast Cancer

smee Tue 25-Mar-14 23:45:13

Speedy I know I'm being anecdotal, but I met two TN women when I was diagnosed 4 years ago and they're both well happy and clear. Not denying it's scary, but step away from google as Betsy says and trust your team. You'll be me reassuring people in a few years time. smile

Did anybody suffer hearing loss as a SE?
I was referred to Audiologist because of ringing in my ears. I thought the ringing was just chemo SE, but it turns out right ear is functioning at 90% but left ear is functioning at 95%, and that imbalance causes the ringing effect.

Audiologist said I'll just get used to it and will tune it out eventually. I'm in the system now, and they will monitor again in six months.

When I'm busy with anything I don't notice it.
The first time I noticed it was when I was hospitalised with neutropenia. I always thought it was worse during week 2, when my bloods are lower. But I guess that is the only time I have quiet time...

Forgot to add, I actually thought my hearing loss would be more dramatic. I struggle to hear the children clearly if there are other competing noises around.

And my eyesight has dis-improved also. I am wearing my glasses much more than I used to. Chemo nurse told me to arrange for eye test shortly, now that chemo is over.

Finally, hair is coming back. But it is snow white. Not a single strand of brown visible.

With all if the above, I feel like I'm getting old before my time. I'm (only) 48.

Sorry for the moan, nothing major, just bloody annoying.

BetsyBoop Wed 26-Mar-14 06:10:47

Mom I can't remember anyone mentioning hearing loss before, but I know a few of us where eyes went a bit odd with chemo. It does settle down, but I know that I wear reading glasses a lot more now, when this time last year it was only very rarely I needed them for tiny print. I'm that sort of age (47) like you, so hard to say if it was chemo or just getting old...!

Psst tiny, I replied on your other thread smile

Wren48 Wed 26-Mar-14 07:03:49

Mom, I remember tinnitus being mentioned as a SE, and I've had that a bit (I'm a bit prone anyway), but maybe what I've had is similar to you and what I've got is hearing loss. I'm about the same age as you and the eyesight thing is definitely as likely to be about age as about chemo! I was advised that my eyes would be a bit different in chemo, but that it would resolve afterwards.

reallyreallyworried Wed 26-Mar-14 07:23:27

First day of Rads for me!! Feeling a bit nervous, but I'm sure once I've met the team, I'll be fine! (must be my turn for things to run smoothly!)

malt good luck with your first day back teaching! ENJOY smile xx

malteserzz Wed 26-Mar-14 07:33:35

Really you'll be absolutely fine, just lie still ! That and the travelling are the only hard bits smile Thanks sure I'll be fine too, bit nervous but looking forward to it x

amberlight Wed 26-Mar-14 07:50:52

Speedy, have you been Googling? <peers over her pince-nez> Move away from that Google! It has many fine qualities as a search engine if you are after a nice recipe for Spaghetti Bolognese or pictures of Brad Pitt (as I understand it). But as a tool to tell you your odds, it's less accurate than standing at the pub exit last thing on a Friday night and asking the people who are staggering home. Google brings up the most common answers. They are most common because they are based on the oldest and most useless data. Almost everything has changed in Breast Cancer in the last couple of years (new genetic stuff, targeted personalised medicines etc) and the new treatments are so new that the statistics aren't anywhere online at all. Worse still, some teams had a negative attitude to TNBC in older women and just didn't even bother with chemotherapy and radiotherapy (!). Unsurprisingly, more of their patients had a bad outcome. So...that's why some of the stuff online ended up looking really negative.

What we know for sure is that TNBC (Triple Negative Breast Cancer) is a rudely behaved one, but it's also one that 'runs out of steam' fast. Rudely behaved cancers are also thirsty and drink up chemotherapy fast. As a consequence, they cop it fast, too. So chemotherapy tends to work better than for other people.

What the team will watch for is how effective the chemotherapy is. In some people, it doesn't work. Those are the head-scratching cases for a team. They will use surgery and radiotherapy to do the job instead and look to get really good 'clear margins' round the lump when they do surgery. If they think they've got it all out, that's a very good sign. They will also look for any of it creeping back, and then try out some of the new potions that are in trials. (Some are looking good in the early trials - I watch the research papers)

In some cases it shrinks the lump quite a bit. That's also good. They can then target it with surgery, radiotherapy and other potions (if available) and improve the odds further.

In a good number of cases, the lump disappears completely after chemotherapy. This is called pCR. This is where the team does the Dance of Hurrah in the hallways and you're pretty much guaranteed a long and happy life.

So, each thing you're told about your breast cancer at the start doesn't exactly make it better or worse as an outcome - it is information for your team so that they know which treatments to use.

Hope that helps....

amberlight Wed 26-Mar-14 07:55:27

PS I am not a doctor. I just read the research every day and have been through a rudely behaved sort myself, and been on here for years... smile

weebarra Wed 26-Mar-14 08:04:02

Amber, you are great! When I first found out it was TNBC, I thought I was going to die - soon. Now I know that if I stay disease free for a few years, I should be okay and if not, well, it's the kind of bc that's v popular with researchers atm.

harrietv Wed 26-Mar-14 09:14:32

Hi biggerbuns I'm doing really well thanks. Big turn around in last couple of days - getting used to my new implants, off pain killers and sleeping (on side) becoming easier every day. Mum leaves today and I feel ready to cope with two DCS of 5 and 7 after/before school on my own - this is day 11. Struggle slightly to get stuff off top shelf still and can't use too much power in arms (so chopping potatoes a bit tricky) in case I bust internal stiches but other than that, and napping at lunch time, I feel good. Hope that makes you feel less nervous about recovery. I remember foofoo advised help for about 2 weeks too. I concur.

Turned out my mx decision was a good one. There was 3.5cm more DCIS further down the duct that was invisible on mamo and ultrasound. Right into my nipple. So 7cm in all. It's the highest grade, with all the 'bad' features of DCIS before it turns invasive so feel a) very lucky but b) nervous in case pathology report missed any microinvasions. Also feeling concerned about my narrow 1mm margins between chest wall and also at skin (I had tiny boobs so at one point it was all pretty much DCIS). UKSounding the different treatment protocols in diff countries are interesting/confusing. I've done quite a lot of my research on the forum you mentioned and in US, women like me (age, agressiveness, small margin, necrosis, large DCIS) are offered radio after mx to prevent an invasive recurrence, although the studies which point to this treatment are limited in a number of ways. Have potentially my 'final' appointment with my breast team this week before discharge to yearly physical exams. Plan to try and take all my concerns with me. My BS'll be wishing he stayed home and had a brew.

really blimey. You're a strong woman and I know you'll get through this- what a good gut instinct to continue with your chemo last time. I'm so sorry that you're in this position though, and angry at your hospital, it's better we are than you are. You need your energy for better things.

foofooyeah Wed 26-Mar-14 09:31:01

Amber - you do make me laugh, I can just see you peering over your pince nez in a disapproving fashion.

Your are very reassuring brew

kitkat1967 Wed 26-Mar-14 10:25:47

yes - I always picture Amber's diapproving expression and it makes me smile!!

Good to hear that you are on the mend Harriet and like you say a good decision to get rid - hopefully you will have a bit more piece of mind now.
I don't know much about Rads - I had 4.6am lump which was medium grade DCIS with 1.3cm grade IDC in it. I had mx (and chemo) but no Rads. My onc consulted with a clinical onc who is a professor due to specialism in Radiotherapy and he said no to Rads. In fact he said I didn't even qualify for a trial that they are running at the moment to give Rads to ladies who they previously would not have included. So an emphatic No which was good enough for me. grin

kitkat1967 Wed 26-Mar-14 10:26:57

sorry Harriet - that was meant to say grade 2 IDC. Plus the IDC was not near the edge of the DCIS and I had plently of clear margin round the DCIS as well.

difficultpickle Wed 26-Mar-14 14:25:31

Survived biopsy thanks to sedation. They always struggle as I've got tough bones! They warned that it is almost certain I will have to repeat the in patient chemo before I can go ahead with the transplant. This is because the more chemo they can give me the better my chance of staying in remission after the transplant. They won't review the biopsy results before the end of next week which means I'm at home until at least 7th April. Means I get to spend part of Easter hols with ds (he breaks up this Friday).

Tiny100 Wed 26-Mar-14 15:22:44

I am currently trying to decide what surgery I should go for and have started another thread. I think I may have put people off responding because it is headed up Triple Negative Breast Cancer, however I am looking for input from anyone who has gone through breast surgery. Thank you Betsy and Smee for sharing how you made your decisions. flowers

The Thread - please respond if you can!

Harriet - Good to hear that you are on the mend and that your surgery decision turned out to be the best one for you.

Wren48 Wed 26-Mar-14 16:26:37

pickle, well done for getting that biopsy out the way. And it's so great that you can just have a tiny breathing space and spend time with ds in the holidays. You must both so sorely need it. Another round of chemo is not so cheery, but improving chances is the thing.

difficultpickle Wed 26-Mar-14 17:07:07

I'm not looking forward to the thought of going back and doing what I spent the last 5 weeks doing. It also means my transplant will be delayed and I'm most likely to end up having that in June/July. I was rather hoping I'd be having that in May and could spend the summer at home recovering.

The one piece of good news I got today is the London hospital ward has its own chef so the food is good and if you want something outside normal meal hours there is someone to make it for you.

kitkat1967 Wed 26-Mar-14 17:15:05

hello Pickle - if you have to repeat your in-patient chemo are you going to swap to the London Hospital after your horrid experiences last time?

Tiny - I didn't have the option of a BMX but would have had one if it had been possible. I figure once you've had one breast chopped off you may as well have 2 if it reduces your odds of getting BC again. Those papers linked to on your other thread were fairly conclusive and very interesting.

Wren48 Wed 26-Mar-14 17:18:41

Pickle, yes, I completely see that the timing messes with your summer. I spend a lot of time counting on my fingers when I might end treatment and what that means for my children's summer. I also now cry every time I go into hospital, and that's just the consequence of normal chemo, so I guess that 'not looking forward to it' is one of the understatements of the year.

Is the London hospital where the transplant takes place? I think a chef is an inspired idea and I'm glad that there's one thing that will work in your favour.

difficultpickle Wed 26-Mar-14 18:10:05

I'd stay at the local hospital as it will be so hard for ds to visit me in the London hospital (at least a 1.5 hr drive). At least I will have a better idea of how to manage foodwise (ie not rely on hospital food for anything other than breakfast!).

I'm relieved that the London hospital food will be better. Apparently patients used to refuse to go into hospital for treatment because the food was so bad!

Timing wise I doubt I will be back at work before January rather than working from home in September as I had originally thought.

Speedypenguin Wed 26-Mar-14 20:38:21

Amber- thanks for the 'look'. Have now got a grip and taken a step back from google! Was feeling very down last night but am more positive again today- just need to get it all started. Better mood helped by the news that my ct scan was clear; bones fine, lungs clear and tumour exactly the same size as three weeks ago.

Tiny- thank you for the link, I will check that one out.

Thanks again for all messages.
Hugs to all but now have to plan an assembly for tomorrow, last one for a while so I had better make it interesting.

weebarra Wed 26-Mar-14 21:08:10

Well, got chemo done despite cough as bloods were pretty good. Back on the anti-bs niw though. Only 3 left - out of 16. Been a long tine coming.

Marshy Wed 26-Mar-14 23:04:27

Hi all
I've been reading this and Tiny's other thread and am a bit confused!
I had dcis which sounds very similar to Harriet. I had a mx and implant recon but I haven't really been offered the option of a 2nd mx. I'm awaiting surgery for an uplift on the other side and am on tamoxifen but having some bleeding issues so currently awaiting pelvic scan.
I'm thinking that if I went for a mx on the other side, that would reduce the risk of recurrence to zero and I could come off the tamoxifen thus avoiding the risks associated with that. Is that right? Am I missing something?
Smee - are you on tamoxifen? Harriet - did you have much opposition to the bmx?

malteserzz Wed 26-Mar-14 23:13:30

I've been reading tonight too and wonder if I made the wrong decision to go for a lumpectomy, was told a mx was too drastic and wouldn't be any better survival wise but people seem to think differently. It's so hard isn't it

On a more positive note I had a lovely day at work smile

Marshy Wed 26-Mar-14 23:21:12

It is hard Malt. I guess I'm thinking that if I'm gonna have surgery on the other side anyway, why not a mx if that has the benefits I mentioned just now. I don't quite understand why my surgeon hasn't suggested it as a possibility

Glad you had a good day at work. I did too smile

BetsyBoop Thu 27-Mar-14 06:24:00

Malt -in your shoes I would most probably go lumpectomy smile A number of studies have shown lx +rads = mx.

I had to have single mx due to multifocal and lobular. The surgeon was right to advise this as path report said cancer cells were in single line strands (typical lobular growth pattern) which would have made it really hard to be sure of clear margin doing a lx. Lobular is also at higher risk (10-25% chance in the next 10years, depending which study you believe) of popping up in other boob too. (for ER+ ductal it's not that different to "normal" and tamoxifen lowers the risk of course.) So with that risk and hating the idea of the droopy j cup mono-boob look, it was decision done for bmx.

It's all about risk really, lobular, hormone negative and BRCA (which don't apply to you) all put you at increased risk of contralateral disease and as already been said, the thought of doing ths all again in 5 or 10 years on the other boob just doesn't bear thinking about...

I hope that helps?

Marshy, I don't know much about DCIS risks, if I get time later on I'll see if I can find and studies that quantify risk smile

Marshy Thu 27-Mar-14 06:39:40

Hi all
I've been reading this and Tiny's other thread and am a bit confused!
I had dcis which sounds very similar to Harriet. I had a mx and implant recon but I haven't really been offered the option of a 2nd mx. I'm awaiting surgery for an uplift on the other side and am on tamoxifen but having some bleeding issues so currently awaiting pelvic scan.
I'm thinking that if I went for a mx on the other side, that would reduce the risk of recurrence to zero and I could come off the tamoxifen thus avoiding the risks associated with that. Is that right? Am I missing something?
Smee - are you on tamoxifen? Harriet - did you have much opposition to the bmx?

Marshy Thu 27-Mar-14 06:39:40

Hi all
I've been reading this and Tiny's other thread and am a bit confused!
I had dcis which sounds very similar to Harriet. I had a mx and implant recon but I haven't really been offered the option of a 2nd mx. I'm awaiting surgery for an uplift on the other side and am on tamoxifen but having some bleeding issues so currently awaiting pelvic scan.
I'm thinking that if I went for a mx on the other side, that would reduce the risk of recurrence to zero and I could come off the tamoxifen thus avoiding the risks associated with that. Is that right? Am I missing something?
Smee - are you on tamoxifen? Harriet - did you have much opposition to the bmx?

Marshy Thu 27-Mar-14 06:46:54

Hi all
I've been reading this and Tiny's other thread and am a bit confused!
I had dcis which sounds very similar to Harriet. I had a mx and implant recon but I haven't really been offered the option of a 2nd mx. I'm awaiting surgery for an uplift on the other side and am on tamoxifen but having some bleeding issues so currently awaiting pelvic scan.
I'm thinking that if I went for a mx on the other side, that would reduce the risk of recurrence to zero and I could come off the tamoxifen thus avoiding the risks associated with that. Is that right? Am I missing something?
Smee - are you on tamoxifen? Harriet - did you have much opposition to the bmx?

Marshy Thu 27-Mar-14 06:46:55

Hi all
I've been reading this and Tiny's other thread and am a bit confused!
I had dcis which sounds very similar to Harriet. I had a mx and implant recon but I haven't really been offered the option of a 2nd mx. I'm awaiting surgery for an uplift on the other side and am on tamoxifen but having some bleeding issues so currently awaiting pelvic scan.
I'm thinking that if I went for a mx on the other side, that would reduce the risk of recurrence to zero and I could come off the tamoxifen thus avoiding the risks associated with that. Is that right? Am I missing something?
Smee - are you on tamoxifen? Harriet - did you have much opposition to the bmx?

reallyreallyworried Thu 27-Mar-14 07:04:59

Hi all

So yesterday was my first zapping, the appt took 45mins!! Apparently it will get quicker! I hope so! Lying half naked in a room full of strangers, isn't really my idea of fun! On a plus, they were a lovely group of people!

malt I'm glad you enjoyed your first day back to proper teaching! grin

foofoo hope things are going okay for you!

Sorry not to respond to anyone else, I can't keep up with everything at the moment! Between Rads, working and trying to sleep!! Life's just busy!

Marshy Thu 27-Mar-14 07:12:29

Blimey, sorry everyone, don't know what happened there!

BetsyBoop Thu 27-Mar-14 07:33:03

Just to clarify (as took me a while to get my head round this)

Mx vs lx on cancer side is all about clear margins and local recurrence risk.

Prophy mx is all about risk of second primary tumour on other side.

No choices make any real difference to your risk of distant metastises, which is the thing that might actually kill you! (Although as amber would say lots of potions now to turn them into long term annoyances!)

harrietv Thu 27-Mar-14 08:11:06

Marshy, I'll PM you, my bmx was 'allowed' because my aunt had ovarian cancer in her 40s which puts me at 'unspecificed high' risk of recurrence. But certainly not the best decision for all. And this is all so personal, unkown and frustrating: I hoped I was putting my risk of recurrence down to 1-2% with a bmx, turns out my mx has positive margins due to proximity so skin so I'm not there

difficultpickle Thu 27-Mar-14 09:33:48

Morning everyone.

really I'm glad that yesterday was okay. I'm impressed that you are still working. I called my office to tell them I won't be working until I'm fully recovered, which I imagine won't be much before the end of this year.

Recovering from bone marrow biopsy I had yesterday. Very sore but I'm glad it's been done and I'm keen to just crack on with things.

I've got a meeting with ds's school today to sort out plans for next term. They are continuing to be so so difficult, you'd think they had never had a pupil who had a seriously ill parent. Goodness recommended I speak to Macmillan and they have said the teachers may have their own issues so recommended they call to discuss. Reassuringly they said that all of ds's behaviour (getting upset at break time and then carrying that upset into the next lesson where he refuses to do work) is all perfectly normal behaviour. I'm looking forward to sharing that with school!

smee Thu 27-Mar-14 09:53:55

Marshy, I had to ask them for my second mx. My first mx was by then a tight pert implant and the surgeon was going to do another op on the remaining breast to try and get it to match, so I thought well why not just get rid. She was quite reluctant, but stats then (3 years ago) said it would give me better odds so she relented. It's probably all changed now, but I haven't googled. On your Tamoxifen question you have to keep taking it regardless as that's a good line of defence. I'm on it for 10 years..

How are you foofoo? Hope you're not too uncomfortable.

difficultpickle, hope the pain goes soon. Good look for your meeting. School sounds a bit hmm

amberlight Thu 27-Mar-14 10:44:02

Lumpectomy v Mastectomy? Big study of over 3000 women done in 2013, some with cancer in nodes, some without. Overall, the 10-year survival rates for BCT (lumpectomy) and mastectomy were 95 and 92.1 %, respectively. The results were similar for both node-positive and node-negative. Not a lot of difference at all. If anything, lumpectomy can be better for some. In other words, it doesn't make any difference what you have, unless you have a type that is very very rudely behaved or multiple lumps or some such thing. It's totally personal choice for most people.

Mummywheel Thu 27-Mar-14 12:24:49

I like you Malt was starting to wonder if I had made the wrong decision to have Lumpectomy.

That's reassuring amber as my consultant told me that for me Mastectomy wasn't necessary.

Marshy Thu 27-Mar-14 13:28:03

Smee - can I ask a really stupid question. Surely you can't get breast cancer if you don't have any breasts so why would you need to keep taking tamoxifen after a bmx? Is it in case it pops up somewhere else?

feeling properly silly now!

Harriet - have pm'd you

Marshy Thu 27-Mar-14 13:30:18

Smee my question sounds really to the point. Not meaning to offend, just struggling to get my head around things

BetsyBoop Thu 27-Mar-14 13:54:24

marshy - even a mx isn't guaranteed to get every single breast tissue cell and as you said the tamoxifen will also block anything that might pop up elsewhere.

I managed to find these studies if they help

one
two
three

smee Thu 27-Mar-14 13:59:24

No not rude at all, but as Betsy says even with mx they can't take all tissue and Tamoxifen hits floating cancer cells that have roamed off round your system and are trying to build a tumour elsewhere. I was told to think of it as a 4th line of defence, so my order was mx - chemo - rads - Tamoxifen. If you're hormone positive it gives you far better chance of no recurrence so don't stop taking it unless you have to.

Lilymaid Thu 27-Mar-14 14:59:12

Sitting in a hospital room having my first ever blood transfusion (been a donor rather than a recipient in the past and am really thankful for everyone who makes the effort to donate).
Usual hospital mix up over bloods labelling has held things up and I am hoping to get out of here before Waitrose closes! Nice lunch and am now watching TV and dealing with work emails.

Marshy Thu 27-Mar-14 18:03:21

Hi Smee and Betsy
Thanks for your thoughts and the info. I think I have to see what the gynaecologist says and take it from there. Tamoxifen seems to be a good thing as long as it's not causing me other problems and uplift or press for a mx? Not sure yet. Oh what fun...

smee Thu 27-Mar-14 18:10:32

Good luck, Marshy.

Lily, did you get to Waitrose?! Hope you're zooming around on the new blood boost. grin

malteserzz Thu 27-Mar-14 18:53:17

Lily I hope it went well and you made it to waitrose !

Pickle I hope the meeting at school went well and they have some strategies and support to put into place

The cough I was worried about has turned into a cold so probably was just a cough after all ! I seem to have a lot on this week coming starting with a weekend away in London, I suppose this is life getting a bit more back to normal. Or the new normal.

difficultpickle Thu 27-Mar-14 19:05:27

Meeting was dreadful. They said they will be recommending that ds loses his scholarship because there have been occasions whilst I was in hospital where he refused to do some lessons and refused to do some homework.

They think they are being wonderfully supportive but when put on the spot couldn't actually demonstrate what they had done to support ds. In fact they admitted they had not implemented various strategies I had asked for (eg having a member of staff to meet with ds once a week to see how he was; having someone ds can give a scorecard to on a daily basis 1-10 so he can communicate how he is feeling; and having a safe place ds could go to when he needed time out).

I am at the end of my tether with them. Ds is already under the care of a psychologist because of the bullying he endured last year and which was badly handled by school.

I explained my forthcoming (most likely) treatment regime - another 5 weeks in local hospital, 4/6 weeks at home and 4/6 weeks in transplant hospital. The head of pastoral care said "So you'll be in hospital for two weeks?" confused

If ds does lose his scholarship he will have to leave the school as I would not want to pay the increased fees if he is banned from the activity he loves (and the reason he got a place at the school). I would also write to the Chair of Governors to point out how completely let down ds has been and how unsupported he was.

Being out two days in a row has left me feeling absolutely shattered.

pickle I'm fuming for you, that's so awful, they have given your DS no help atall by the seems of it, you really need to take it higher, which you can indeed do without at the moment,
Would the Macmillan nurse speak to the school? You just don't need this stress angry

Wren48 Thu 27-Mar-14 19:22:15

Right, pickle, that is absolutely atrocious. I'm completely fuming. Bloody useless school. And so tough for you to deal with when you're not well. And so tough for your ds who is reacting to a very tough situation very normally. Writing to the Chair of Governors is a good idea. Anyone else to contact? Any way of shaming them? Writing down point by point where they have failed him would help in any further discussions. Sorry, I'm getting over involved here, which isn't helpful. Good luck. Thank goodness the holidays are soon.

traviata Thu 27-Mar-14 19:26:14

pickle, that is awful. How stressful and unnecessary, for both you and DS.

I have been racking my brains trying to think what might help you here.

If I could afford it, in your shoes I would actually consider instructing a solicitor to write a strong letter, on the basis that the school is not meeting its duties under the Equality Act 2010.

I haven't quite worked out the argument in my head, but it would go something like this. You are deemed to be disabled under the Act because you have (or had) a form of cancer. DS is 'associated' with you, so he is also protected under the Act. His recent difficulties at school probably stem from your treatment & illness; the school has entirely failed to make reasonable adjustments or take these issues into account, and have therefore directly or indirectly discriminated against him on the grounds of your disability. Or something like that.

failing that, would your local Parent Partnership assist? They exist for children with SEN, (and forgive me but I have not seen any suggestion that your DS has additional needs), but part of their remit is to support parents in disputes with school, and it might be that if DS currently needs extra pastoral support, they might be able to work with you/him.

[[ PP http://www.parentpartnership.org.uk/about-us/]]

Best of luck with everything.

difficultpickle Thu 27-Mar-14 19:36:26

I think ds's card is completely marked and if he stayed at the school his life would be made even more unpleasant. I'm not sure I'm interested in fighting to keep him in that position as I envisage the slightest step out of line would be made truly horrible for him.

He really wants to stay mainly because of the facilities but I pointed out he'd only have a year at the local primary before he could move on to a school with even better facilities than his current school. He would know some dcs at the local school too so it wouldn't be a completely horrible move. I am going to see if we can schedule a visit next week so ds can see that it really isn't as horrible. He would also have a lot more freedom as he could walk to and from school on his own.

traviata Thu 27-Mar-14 19:40:14

it could be a fresh new start for you both.

malteserzz Thu 27-Mar-14 19:41:56

Pickle I'm sorry you're having to deal with all of this on top of your treatment, they are being really crap. New school sounds like it might be a good idea

difficultpickle Thu 27-Mar-14 19:53:07

Everyone I have spoken to about school (this has been going on months) have said how appalling they are supporting ds.

I agree about a fresh start although I know ds will be sad to leave. I'm fed up with fighting for something that should be offered to ds as of right. My friends at other schools have all said this would be handled better and my friends at ds's current school are not at all surprised about what is going on.

Ds's previous school has already said they would find space for him next term if needed even though they are full and they would welcome him back.

Lilymaid Thu 27-Mar-14 19:53:25

Pickle what a dreadful attitude from the school! I know that DS' school always made sure that pupils in that type of situation would not have to leave due to financial reasons.

I was in hospital for 6.5 hours for my blood tranfusion! Two hours lost because of mix up over labelling of bloods. Got to Waitrose and was last in queue for my "free" coffee before the cafe closed. Now about to tuck into a ready meal (DH is abroad on business so slobby TV meal is permissible).

difficultpickle Thu 27-Mar-14 19:59:14

I can afford to pay full fees but I wouldn't want to pay for the complete lack of support he is getting. I do know of someone who had paid full fees for 14 years and asked for support for one term and the head refused.

Lily that mix up would drive me mad. Having a blood transfusion in the first place is one of the most boring activities I can think of let alone waiting two hours to start smile

Marshy Thu 27-Mar-14 20:33:27

Pickle How awful for you and your ds. Must be so tough when you have such a lot to cope with. Would be returning to previous school I think. They sound welcoming and understanding

Wren48 Thu 27-Mar-14 21:01:59

Glad you got to Waitrose, Lily! And the free coffee.

Pickle, you're right of course. That school is never going to be the right one at this point, and I think practical steps to get your ds somewhere supportive is the key. (But do still do the letter to the governors; it is so unacceptable).

trice Thu 27-Mar-14 22:06:15

Pickle, what heartless pricks those school assholes sound. Totally lacking in human decency. How would they feel if the roles were reversed?

My dcs have had nothing but support from their school in contrast, they have had to have time out to cry and rage and be lost and confused but the school has understood. It has been very reassuring for me.

I hope your lovely ds can find a haven at a school who will help him through.

Greyhoundsaregorgeous Thu 27-Mar-14 23:54:57

Hello everyone. I'm new to posting but have been reading without posting for a few months now. It's so great to see what a support you are to each other. I've been very lucky so far. Small tumour, caught early with clear margins. Sentinel nodes were clear. I'm already started on Tamoxifen, started about a month ago. I'm not starting radiotherapy for another couple of weeks. By then it will be two months since my lumpectomy. I've kept to this site and McMillan and Breast Cancer Care and have just read that my radiotherapy should have begun a month after the op. Do any of you knowledgeable people know anything about this? It has seemed a long time to wait...thanks if anyone can explain.

malteserzz Fri 28-Mar-14 08:04:38

Morning everyone
Greyhound welcome, glad you have come to join us though sorry you are here too
I don't know about the delay, I know my rads dept was very busy with 140 patients a day so fitting them in was a problem. I waited from surgery at the beginning of December to start rads in feb though bit different as I had already had another op and chemo before

What's everyone up to today ? I need to go into school to start to find out everything I have missed in my 10 months off, things change so much so quickly hmm then it's take your mum to rangers night tonight smile

difficultpickle Fri 28-Mar-14 09:39:46

Morning all. I feel full of resolve today. Ds is utterly devastated at the thought of moving schools but I realise I need to do it to protect his fragile mental health.

I had a lovely chat with the head of our closest state school. They have no space and are one above their usual admission number in ds's year. However she has arranged for us to visit on Monday. Ds is adamant that he does not want to go there but I want him to come with me and see for himself. He is a bit hung up on the facilities his current school has (same as you'd expect at secondary) but I'm hoping that the local environment and easier school work may appeal.

I'm off to John Lewis today with my mum to have a coffee and look at sewing machines. I need distraction at the moment and also need to get away from the massive tin of biscuits which arrived from my office (really lovely huge tin full of biscuits and cake).

I hope everyone has a good day. I'm looking forward to the forecast warm and sunny weekend.

Wren48 Fri 28-Mar-14 10:38:25

John Lewis sewing machines! Yes! I bought a rather basic Brother model from them online, but then basic is where I'm at. I love the embroidery threads and so forth that they have there, but haven't yet persuaded myself that I'm about to take up embroidery... Enjoy it, Pickle! And those cakes and biscuits: so kind, and yet, and yet....

Hi greyhounds, sorry I can't help on the rads front. All I know is that some of the government standards for when care should happen don't have a clear clinical basis (this from my surgeon, tho' in the context of a late op, so she was trying to justify it!) and are a bit arbitrary.

BetsyBoop Fri 28-Mar-14 12:48:42

greyhounds welcome - my hospital's policy is a minimum of 6 weeks from surgery to rads to ensure you are properly healed. (my surgery was 11/11 and rads started 3/1) In terms of the NHS cancer charter they are supposed to start treatment within 31 days of deciding you are ready for it (eg within 31 days of assessing you are sufficiently healed after your op). I'm sure I read somewhere that rads MUST be started within 12 weeks of surgery (if no chemo) or they may not be as effective, but I can't find it now....So I guess I'm saying don't worry about it. smile

pickle sad re you DS's school. my children's school were amazingly supportive, which is how it should be. We have enough to worry about going through chemo etc without worrying about that too. sad

reallyreallyworried Fri 28-Mar-14 13:17:25

Hi all

Day 3 of Radiotherapy for me! Already fed up with going to the hospital everyday! Not helped by the fact that both sessions so far have taken over 45mins! My shoulder is getting sore from lying in the same position for so long!

Did anyone else have rads using ABC (breath holding) if so did it ever get any quicker? Radiotherapy people said first few sessions are always longer, but I can't c how they can ever do it any quicker!?

BetsyBoop Fri 28-Mar-14 13:30:20

really rads is just very tedious, but will be over sooner than you think, just keep ticking them off smile My first two or three sessions were definitely longer, they speed up as they and you get used to getting you into position quicker. We didn't do anything as fancy as ABC, just told to keep completely still and to try not to breath during the actual zapping!

reallyreallyworried Fri 28-Mar-14 13:51:36

Thanks Betsy just what i needed to hear! Think I'm just struggling with the whole juggling rads and work! My one promise to myself was that I wouldn't let Cancer take over my life! Up to now I've done okay ish! Just an odd day off here and there! But its much harder with rads and I find myself constantly thinking about things while I'm sat around the hospital.

I suppose I'm also thinking about the fact that even when the rads are done, this nightmare still won't be over!

Apologies moan and self pitying moment over! Back to positive thinking!

malteserzz Fri 28-Mar-14 14:48:43

They do sound long sessions really, mine were about 15 mins but I didn't have the breathing thing either they just told me to lie still and breathe normally. Hopefully they will get quicker
You are amazing to have worked all through, I don't know how you've done it smile

traviata Fri 28-Mar-14 15:22:56

Hi everyone.

Can anyone help with locating a (cheap) seam-free t-shirt?

Post surgery, my armpit and upper arm are becoming irritated, i think the sensation is returning, and it is aggravated by seams in clothes. So-called 'seam free' tops from BHS and the like are only seam free in the body, there is a very clear and obvious seam joining the arm on to the body.

BetsyBoop Fri 28-Mar-14 15:51:11

traviata my radiographer's top tip was to wear an old t-shirt inside out when you were in the house smile

Really I don't know how you've managed to work through all this either - you are a fighter. The rads will get easier, and they will start to fly by. I can't quite get my head around the fact that I had 5 week's worth - it went so fast.

Pickle my sympathies re DS's school - what a shocking, crappy attitude. I am staggered at their ineptitude and inability to grasp what you are going through and the effect it is having on your DS. Good luck with finding him an alternative school.

traviata Fri 28-Mar-14 17:21:51

thanks Betsy, that's a good idea

difficultpickle Fri 28-Mar-14 18:08:32

Got ds's grade card today. All of his effort and attainment grades have improved for this half term despite me being in hospital for all bar the final week. So impressed with how hard he has worked and heartbroken that school so clearly want him gone. It gives me more ammunition but I think I need to focus on finding somewhere that has strong pastoral care even if the academic standard may be lower.

ConsiderablyBiggerBuns Fri 28-Mar-14 18:44:15

Hello pickle just wanted to echo the overwhelming feeling of outrage on this forum on behalf of you and your DS. You obviously need to address in the short term what is best for your boy's welfare but I genuinely think that the school should be named and shamed in some way. Like everyone else my DDs school has been compassionate and proactive in the care of my two. I can't think of much more callous than the behaviour of the school. Well done to your DS on his grades, sounds like he will do well wherever he is and it is their loss.

harrietv Fri 28-Mar-14 20:23:49

pickle me too - I'm outraged and shocked. How could anyone, let alone a teacher, not have compassion for a little boy in his situation?? Especially one doing so utterly amazingly. Having mum away for 5 weeks would be enough to send most kids over the edge without having all the health stuff added to it. So right to focus on getting him somewhere he will be nurtured. And on your health. But once this is all behind you, if you want to name and shame I'm a journalist so we can shout it from the rooftops if you want!

Had my LAST appointment with breast team today. Turns out my +ve margin wasn't that, there were cells within 1mm of the skin they removed so - according to my surgeon, that's it for me. See him in a year. Mighty relieved about the margins. Feel a bit dazed at thought of just carrying on now like nothing ever happened. But my foobs look really good with the dressings off (although I feel a bit like an alien without nipples!) so....I guess off I go with a secret pair of crossed fingers behind my back.

Thank you for all the support. I'll keep up now and again to see where you all are and will think about everyone but need to ween myself off frantic googling so will take a break for a few weeks if I can manage. Anyone needing advice/support etc about bmxs, dcis or Guy's hospital please PM me. xx thanks

weebarra Fri 28-Mar-14 20:54:59

Pickle - what is happening to your little boy is just awful. My older DS is 6 and in P2 (Scotland). His school have been great, he's a sensitive wee lad and they know that so they're acting accordingly. Your DS's school have a duty of care to him and they are not fulfilling it. Makes me so angry.
Currently DH and I are on a weekend away in Bristol. It's lovely, but I am seriously knackered!

kitkat1967 Fri 28-Mar-14 21:06:27

What are you planning to do in Bristol weebarra? It's a bit soggy at the moment but I think it might be a nice weekend. Have you got any sightseeing planned?

weebarra Fri 28-Mar-14 21:12:14

We went up to clifton, had lunch at the clifton sausage, walked around the harbourside, cocktails at harvey nicks. Maybe bath tomorrow, & there's a foodie fest on sunday. What would you recommend?

kitkat1967 Fri 28-Mar-14 22:02:06

Well that all sounds very civilised - sounds like you are having a lovely time. Bath tomorrow sounds great - will you get the train? - parking in Bath can be a pain.
We're usually doing stuff with the kids when we're out in Bristol but a visit to SS Great Britain is always good if you want some culture - sounds like you're doing OK on you're own though smile.
I remember it was ages ago that you planned this trip - great that you're through treatment and having a weekend away.
Is the hotel nice? I've driven past it loads but never been inside - is it very boutiquey (is that even a word hmm)?

malteserzz Fri 28-Mar-14 22:07:37

Glad you're having a good weekend Weebarra, sounds lovely smile

Greyhoundsaregorgeous Sat 29-Mar-14 01:46:18

Hope you all have a good weekend and thanks to everyone who replied to my query about rads timing. That all makes sense now so well within the time. Hope Pickle's son gets sorted for both their sakes. School should be helping not hindering. Night all.

difficultpickle Sat 29-Mar-14 08:52:14

Had an email last night from one of the senior teachers (who was at the meeting this week) to say he had spoken to ds about what he needs to do to keep his scholarship. As far as I understood the removal is a done deal and there is nothing ds can do to change that. I have asked him to tell me why he said this to ds as I think it is cruel to give him false hope. It also explains why ds was adamant last night that he will not be leaving the school. It makes it doubly hard for me to get him to consider other options when as far as he's concerned he can still do enough to keep his scholarship and stay at the school.

The teacher who emailed is lovely and hugely supportive but has not been actively involved in supporting ds for much of this term (but said he will be next term). This has been left to the head of pastoral care who is in the wrong job.

Hope everyone has a good weekend and enjoys the sun.

Marshy Sat 29-Mar-14 09:23:11

Pickle are you still resolved to move your ds? Migbt things improve when the nice teacher is more involved? It sounds like too little too late in terms of support though, doesn't it. Hope it works out for you.

Beautiful sunny day here. I'm off to pick Dd up from uni later. So looking forward to having her around for a while.

And I have a day off work on Monday though it is a bit of a shame to have to spend part of it having a pelvic scan.

My interview has been delayed to 11th April which h is good as that was due to be on Monday as well.

Wishing everyone a good weekend. Waving goodbye and good luck to Harriet

difficultpickle Sat 29-Mar-14 11:11:44

Nice teacher completely 'gets' ds and I know he will support him. He's a genuinely lovely and caring teacher and will admit when he gets things wrong (unlike head of pastoral care who will justify and avoid all that they can).

I do think it is too little too late but if they do decide to maintain the scholarship there is no way I will be able to move ds (he will refuse). When we discussed other schools the only thing he said he would agree to his being home tutored (but not by me!). That's not an option at all unfortunately.

reallyreallyworried Sun 30-Mar-14 08:44:16

Wishing all you mummies a VERY HAPPY MOTHERS DAY! thanks Hope you all have a lovely day xx

I'm feeling a bit sad today! This is the first Mothers Day where I won't spend the day with my mum sad I didn't feel up to travelling all the way home just for the weekend! I know she understands, but I feel bad!

difficultpickle Sun 30-Mar-14 09:17:20

Happy Mothers Day

really I am sure that your mum completely understands but I know how upsetting it is not to be able to do things you would usually do. Despite that I hope you have a lovely day.

I am taking ds to a 'mothers and daughters' sewing course grin He got a sewing machine for his birthday last year and is keen to learn how to use it properly.

Lilymaid Sun 30-Mar-14 10:02:43

Ouch! I'm hobbling about today with two blisters on sole and heel of one foot and a small blister on sole of other. Making use of my trekking poles.
Unfortunately these are a SE of the chemo. I was fine until I had the blood transfusion then I felt the Palmar Plantar start up whilst I was having the transfusion.
Happy Mothers Day. My DSs are far away (150 miles at university and 10k miles at other side of world but have had cards and gifts from them.

foofooyeah Sun 30-Mar-14 20:34:54

Evening all,

Went to a lovely service at my church yesterday for sufferers of, or friends of people, with cancer. It was a beautiful quiet service in the chapel. Quite unlike the family service I usually attend,

Got my drain out as well yesterday.

I'm freaked out.
Probably nothing, I'm seeing Onc on Tue.

I had calcification on other breast, which they removed at time of lumpectomy. I can feel a lump under this scar, and the skin above the scar looks a little different. It is probably something to do with scar (i hope!!), but it has me worried.

And last night I had a dream that I had cancer in my brain. I dreamt that I had a scan, and there it was. Then woke up and couldn't go back to sleep, it felt so real.
My first cousin had breast cancer and died from secondary in brain.

And finally, a friend of my moms rang my dad yesterday. She emigrated maybe 50 years ago, but used keep in touch with Christmas cards, etc. Mg mom died of pancreatic cancer 5 years ago. Friend didn't know.

As I said, I'm freaked out.
Couldn't sleep last night even though I had 2 glasses of wine and a sleeping pill.

Has anybody experienced anything similar?

PS still managed to have a nice Mother's Day. DDs had hobbies and birthday party, DH and I had a few nice hours strolling around the city center. I'm grand when I'm kept busy...

reallyreallyworried Mon 31-Mar-14 07:04:51

Morning all

Rads number 4 for me today! It was so nice having two days hospital free! Wishing I didn't have to go back!

marshy good luck with your scan today! Hope all goes well, and you get to enjoy your day off.

foofoo congratulations on having your drain out! Bet your happy!!

mom I know it's hard, but try not to worry too much! It's probably just scar tissue! Try and keep busy! As for dreams/nightmares I think we've all had those at some time or another. I know I have! Sending you a ((((((((big hug))))))) xx

Hope everyone else had a good weekend! It was very quiet on here, so I am guessing everyone was off enjoying the sun. smile

malteserzz Mon 31-Mar-14 07:07:09

Morning all

Mom I'm sure we've all had that freaked out feeling. I thought I had lung cancer last week when I had a cough. Good that your getting things checked out but I wouldn't worry about dreams and things it's just your anxiety

Really sorry you didn't get to see your mum but I'm sure she understands

Lily ouch to the feet

Pickle the sewing course sounds great and something for you to do together

Foo the service sounds lovely but emotional I bet

I had a lovely weekend in London with the family, lots of sightseeing,up the shard, on the cable car and to the m and m store grin

Hi everyone, had a busy mothers day, mostly taxi ing DS to his sporting events! DF had a bad day yesterday, why always on a sunday hmm hes had 20 rad sessions,13 to go...hes on morphine for pain but is very constipated which he says is worse than the pain sad any tips anyone??
Hope everyone has a good week with treatment/going back to work etc

difficultpickle Mon 31-Mar-14 08:40:57

Is he drinking enough? Lactulose should help.

I was warned to drink loads to avoid being constipated (to stop my sore arse getting even worse).

Ds enjoyed his sewing course although we couldn't get his sewing machine to work. Called John Lewis and they told us to bin it and they'd send out a replacement!

I hope everyone has a good day. We are off to visit a local school this morning.

Wren48 Mon 31-Mar-14 09:07:14

Honeybee, sorry about your df. I bet there's a lot of constipation advice to be had here! I've used senekot (can never remember how it's spelt) and lactulose. Both way too effective when I was in hospital (oops). Others have mentioned movicol. If he's finding it hard to eat he's not going to welcome prunes as a suggestion!

Mom, scar tissue and wounds feel different - and will probably still be changing as the healing goes on. Horrible dream: sorry. For me, I'm convinced I've found a lump on my reconstructed breast that I will ask about next week.

Pickle, I love the idea of the sewing course!
Marshy, good luck with the scan, and Really, good luck with those rads...
Lily, ow to those feet... I hadn't realised that's what palmar plantar does.
Foofoo, yay to no drains!

I overdid it at the weekend going to dh's new (art) opening. It was good to go and support and to see people, but just that bit too much for me and I had to retreat to a quiet room to nap! And, boy, trying to look good gets so much more tricky when headscarves are part of the picture. Sunday in recovery..

foofooyeah Mon 31-Mar-14 09:19:57

Honeybee. .... Prune juice, better than senokot but results can be pretty explosive!!

FelineSad Mon 31-Mar-14 11:32:22

Mom Totally get where you're coming from. My lumpectomy scar feels all lumpy. I was moaning to DP about how I would know if it came back there as it just feels like there are loads of lumps. I try not to let my mind run away too much.

I spent most of last Tuesday with an excruciating headache which felt like someone had put an needle through my left eye. Worried all day about whether it was a brain tumour or some serious side effect i should be ringing the hospital about. Been fine since though. Just can't stop obsessing about every ache and pain though which really is new territory for me.

Very worried about my youngest through (9yrs). He had another day off on Friday with 'tummy ache'. Second in two weeks. He's never been off ill and usually loves school so worrying that he's worrying about me.

Also today my hair started falling out. 15 days after 1st chemo but all the same. DP being incredibly supportive. He said I shouldn't be upset as I look great in my 'beautiful' wig so I've just ordered some hair accesories and new scarves to cheer me up.

FelineSad Mon 31-Mar-14 11:35:14

Also just eaten a whole box of Mother's Day Ferrero chocolates and feel a bit sick. Going to go to the gym which always makes me feel better. I may end up bald but I would rather be thin and bald than fat and bald (especially after over indulgence of chocolate!!)

Wren48 Mon 31-Mar-14 11:51:22

Really impressed with the gym, feline! Don't think I'm up to that on chemo, tho' I do try and walk lots. The hair thing is no fun; it just gets everywhere, I find. Sorry about your ds; worrying about the children is the hardest thing. Roll on the Easter hols when they can all have some down time (other than ds1 who has got to revise for GCSEs oh I wish he would just buckle down to it).

difficultpickle Mon 31-Mar-14 12:26:34

Feline hair falling out is horrible and tedious and like Wren said it gets everywhere. It's good you've got a wig. I'm practically bald but haven't managed to sort out a wig yet (hoping to collect it tomorrow). I'm sure your ds is worrying about you. I just did my best to encourage my ds to go to school even when he didn't feel like it but I wasn't too hard on him when he didn't want to go. At least it isn't long to the Easter holidays and hopefully that may help.

Visit to local school went very well. Head was lovely and ds said he would be happy to go there despite them not teaching Latin (!). Ds could cycle to school (a journey of approx 30 seconds, it only took 2.5 minutes to walk there!) and have lot more freedom during the week than he does now. The homework is less too - reading every day plus English and Maths homework once a week. Ds currently has two subjects a day. The pressure would be far less and the environment appears to be far more nurturing. I bumped into a mum I know with children at the school and she said how happy she is with it.

Ds also already knows children in his year there so it wouldn't be such a difficult move. Without the need to pay school fees I would have funds available to supplement whatever he couldn't do at school. Having said that I was impressed at how much they do there.

Wren48 Mon 31-Mar-14 12:40:26

Sounds really positive, pickle. Taking the pressure off him sounds so attractive.

difficultpickle Mon 31-Mar-14 12:52:52

I think he will appreciate it although the downside means cramming 11+ tuition over the holidays. At least that would only be for a few weeks and the exam is early Sept. He would then have an easy year 6. I asked about Sats (which would be new to us) and they don't seem to put any pressure on the pupils, which is reassuring. The one thing I have no idea is what level he is in terms of national curriculum. His old school would tell us and he was level 3 in year 2 but I have no idea how that translates for year 5 expectations. I'm sure it wouldn't take the school long to work out what ds can do.

malteserzz Mon 31-Mar-14 16:51:08

Pickle the new school sounds lovely smile

Feline the hair falling out is a shock even though you know it's going to happen. Just remember it will only be for a few months and people won't even realise you are wearing a wig

greeneyedcat Mon 31-Mar-14 16:59:37

honey I'd definitely get your DF to try prune juice, a big glass before bed and let it work its magic. 20 sessions done, that's brilliant, just keep ticking them off the list. Sending my very best wishes, it's an endurance test when you're feeling so exhausted and poorly but the last week will be in sight before long.

weebarra Mon 31-Mar-14 17:03:41

Pickle - I'm so glad the school is nice and your DS is positive about it.
Back from our wee weekend away and pils have gone home so just me and DCs. Am getting huge amounts of support but sometimes its nice to have the house to yourself!

Thanks for the tips on constipation everyone! I will get DF some prune juice, it seems worse at the weekend when he hasn't got to get up and go for Rads session, it seems like everything slows down!
I keep telling him, only 2 and a bit weeks to go but I guess when your in the fog of tiredness, pain, not being able to eat and then not being able to taste it, 2 weeks seems an eternity!
Still, trying to stay positve for him smile
Thanks for your kind words greeneyed

honey my chemo nurse recommended sennokot at night and Lactose in the morning. And he may need to take for a few days before they work fully.

Thanks mom

Thanks to all for support earlier. I was back on an even keel again today. I guess I just needed time to process the fright the nightmare gave me.
Looking forward to seeing my Onc tomorrow for my follow up after completing chemo. She is lovely, and very practical.

difficultpickle Tue 01-Apr-14 09:52:09

Morning all. I hope everyone is okay today. I'm off to collect my wig this morning. Taking ds (Easter holidays already started here) so he can help me choose which one out of the three I've selected.

We will spend the afternoon sewing. Ds's new sewing machine arrived yesterday. A real bargain as I only had to pay the difference between his old one that stopped working (mini one) and new one (full size) £34. He loves it, which is great, but he requires help cutting out material, sorting out the thread and bobbin. I'd forgotten quite how active he is and he's leaving me feeling exhausted. Thankfully he's booked on a holiday course all of next week grin

malteserzz Tue 01-Apr-14 11:26:33

Morning smile

Mom glad you feel a bit better and hope the onc is reassuring

Pickle your Easter holidays are early, we break up a week on Friday. The sewing sounds like it's going well and hope you're happy with the wig you choose

Just been on a walk around the village with my class which was lovely, need to plan some follow up work for tomorrow now

Hi everyone, hope you're all having a god day, the sun is shining here smile
DF is seeing dr after his rad session tomorrow to ask about the constipation caused by morphine so hopefully they will give him something to help,
On a happier note, the radiographer mentioned how good his skin is looking, after 21 sessions it's just a little bit red, like mild sunburn. One poor lady has a broken, red raw patch on her neck. DF's soreness is inside!!
I like to think it's the 'udder cream' I bought him online that's keeping his skin nice!

Saw my lovely Onc today. Lump is scar related, nothing to worry about.
And I've got my first prescription for Tamoxifen...

That's good news mom

malteserzz Tue 01-Apr-14 16:16:16

That's great mom, I've been on tamoxifen for 3 weeks now and haven't noticed any side effects.

chocohontas Tue 01-Apr-14 16:41:19

Hi everyone - I had some really kind replies on here when I was going through various tests recently for BC. Thankfully I have now been given the all clear but I just wanted to leave a note about the vacuum biopsy I had done after a core biopsy was inconclusive in case anyone does a search in future. (I found it difficult to get info about it.)
Basically the team had concerns about my lump and the core biopsy results were not clear so they decided to take the lump out at the same time as doing a vacuum biopsy.
It is a slightly more invasive procedure than core biospy so I needed to sign a permission sheet and the consultant said that they used approximately 3 times more local anaesthetic than with a core biospy.
It took approx 45 mins (awake throughout). No pain but a little bit of discomfort.
(It literally sounds like a vacuum sucking.)
The consultant used ultrasound to guide at the same time to ensure that all of the lump as removed.
Quite heavy bruising afterwards and I've got a haematoma where the lump was but this will apparently just be re-absorbed into my body. might take a few weeks.
Results took a week to come through.
Anyway - i hope thats useful if anyone finds themself having the same procedure.
And wishing everyone on this thread well - I was overwhelmed by all your strength when I was reading all your stories thanks

malteserzz Tue 01-Apr-14 18:03:03

That's great you've had the all clear choco smile

ConsiderablyBiggerBuns Tue 01-Apr-14 19:13:59

Good news choco and thanks for the info about the vacuum biopsy which I am sure will be useful to someone on here in the future or even a lurker now!

FelineSad Wed 02-Apr-14 06:25:20

Thanks pickle. Hope the new school works out. I did actually take Ds to school on Friday even though he was complaining of tummy ache but he refused to get out of the car when we got there sad. He's been quite weepy this week but has gone in. He's off on a school trip on Thursday fro 5 days which he's really been looking forward to so hope that will help. His teacher is going who is lovely and her sister had BC so she does understand.

Hope the wig choosing went well. I went to pick it up on Saturday after having had it shaped. However having tested it out for a couple of hours I need to get some more taken of the front so I can actually see. The hair shedding is a pain. Thinking I may get hair cut short in near future but does that not make the bald bits more obvious??? feel really pathetic worrying about something so superficial when some of youhave really more pressing issues.

Wren48 Wed 02-Apr-14 06:47:21

Feline, I was much happier after getting my hair cut short. It took quite a lot of thinning before looking odd. So sorry your ds is having a rough time. My 14 yr old ds had a 2 day school trip which he loved, although he's been noticeably anxious about me since coming back.

malteserzz Wed 02-Apr-14 08:02:03

Feline not pathetic at all, mine has grown back and I'm still moaning about it especially as no one recognises me which is horrid

foofooyeah Wed 02-Apr-14 08:53:34

honey can you remind me of that udder cream please I remember you posting about it. Sounds like it could have helped your df.

malt if your not getting recognised seems a great time to misbehave!!

I need to call the bcn today .... Shortage of Oncs at the moment de to one ing ill. Get my ANC results next week and want ext sage planned.

difficultpickle Wed 02-Apr-14 09:13:04

I'm planning to get mine shaved off. It will probably start growing back soon but then I have more chemo so what little will be growing back will fall out again.

Collected wig. It's okay but I don't feel comfortable wearing it. I'll take it to the hairdressers to see what she can do with it. To me it looks like a wig but I suppose because it was cheap (free from NHS but £120 if I had to buy it). From what I understand the more natural wigs are in the region of £300. I can see me sticking with my head band rather than wearing the wig on a regular basis. It seemed very hot to wear and I can't imagine wearing it in the height of summer.

Had an odd email from ds's current head saying that he accepted my notice if ds's award is removed but making no mention at all that he would be recommending that ds should lose his award. I have asked him to clarify. I have also asked for governors contact details as whatever the outcome I think they need to know exactly what has been going on over the last year.

The one good thing currently is nearly all my blood results are normal, just my haemoglobin is slightly low. Having said that it is higher than it has been in months. Still feel tired though. I'm surprised as I've been out of hospital two weeks now so I thought I'd be back to normal by now. From what the hospital said yesterday it looks as if I will be back in for another 5 weeks from early next week sad

foofoo
Its www.moogooskincare.co.uk
There are various creams and lotions but the udder cream has been recommended by australian oncologists.think it was about £12 but its quite a big pump dispenser pot. Worth a try

weebarra Wed 02-Apr-14 12:40:57

I got DP to shave my hair off as soon as it started falling out. I vary between wigs and scarves depending on weather/occasion.

Wren48 Wed 02-Apr-14 16:17:45

My wig sits expensive and unused in its box. Just not going to wear it. Mind you, I'm wearing a rather zingy turban today and fielded slightly more looks than I normally aim for. No doubt everyone was thinking how marvellous I looked.. hmm

foofooyeah Wed 02-Apr-14 17:12:29

I just couldn't get n with a wig either, was very excited when I got it but it ave me a apache after an hour .... Used scarves and nw jst I about with my crew cut!

foofooyeah Wed 02-Apr-14 17:13:07

Thanks honey

Feline, I think most of us had concerns about hair/wigs at the start of chemo. I got mine shaved off once I got my wig. The wig place did it for me. I couldn't stand the thought of hair falling out all over the place.

malteserzz Wed 02-Apr-14 17:21:36

Pickle it must be a daunting prospect having to go back into hospital again, I do feel for you x

Foo foo did you speak to your bcn have you got an appointment for your results ?

Regarding wigs I think we all do what we feel most comfortable with, I couldn't have managed without mine.

Bit tired after working today but not too bad

foofooyeah Wed 02-Apr-14 18:00:31

No I haven't malt had my head in the sand a bit, but will call tomorrow.

Hello, haven't popped in for a while. Just reading about the hair thing, I too shaved mine off as soon as it started falling out and I felt much better for doing so. I mostly wore my wig and it was obviously a very good one as people were always shocked when I announced it was a wig. I'm now wandering around with my re-grown hair - it's very very short, but I have a full covering all over, and it would somehow feel wrong to put my wig back on now. I don't feel sexy in the slightest though, and all the kids at dd2's school stare at me like I'm a freak which is not great (or maybe I'm just really paranoid).

It's also come back really grey which is horrid, so yesterday I stuck some dye on it (Daniel Field watercolours stuff which is water based so no nasty ammonia / peroxide etc). It looks slightly better now, but still ugly.

On the subject of Moogoo - have a look at their website, I've got several of their products and I can vouch for them. If you're looking to avoid deoderant that contains nasties then try the Moogoo stuff - it really does work, even if you've worked up a major sweat at the gym. Which I'm doing a lot (yippee).

Mummywheel Wed 02-Apr-14 19:27:43

3rd FEC done today, 3 more to go! Had a really lovely nurse, she made me feel relaxed smile

I wear my wig when out and about and lots of people have commented on how real it looks, however I feel more comfortable around the house in scarves.

I found the shedding upsetting and had it all shaved off and felt much better afterwards.

Well done Mummywheel - it's a nice feeling to be half way through.

malteserzz Wed 02-Apr-14 20:26:49

Waiting for results is crap foo foo I prescribe wine

Mummy well done on getting to half way through

Handbags I'm with you on the not feeling sexy thing and the funny looks it's rubbish isn't it hmm

handbags thanks for the tip on Moogoo deodorant. I just popped onto their website and bought the deodorant and the cream (rads starting next week).

My radiologist only wants me to use E45 and cool chamomile tea dabbed on the rad area. I'm going to try the Moogoo and just not mention it...

DF is using the moogoo udder cream but the oncologist thinks he's using the E45 that they have given him!

felinesad Thu 03-Apr-14 06:46:59

Thanks everyone. Hair shedding is really getting to me. Went for a meal with friends last night and realised that I am a hair twirler however every time I did a chunk came out.

Having it cut short today and wig readjusted. Got some lovely scarves yesterday but just need someone to show me how to tie them! Think I will certainly wear scarves in and around the house plus at the gym if I'm still up to it.

Very envyof mummywheel. I have my second FEC on Monday. Just getting my head round the fact that this week I've felt so well (apart from the hair thing) but on Monday I will subject myself to something that will make me feel a a bit 'yuck' all week and maybe worse by the end of it.

reallyreallyworried Thu 03-Apr-14 07:15:47

Hi All

Sorry I haven't been on for a bit. Haven't had time, what with work, Rads and generally being shattered!!

Rads number 7 today! Things haven't exactly gone to plan! No surprises there! I am starting to think I am jinxed!! My treatment is always going to take approx 30mins, although has taken 45mins each time up to now! Add to that two days where they were running 1.5hrs and 2hrs behind time and I think you will see why I'm not really enjoying this!

Apparently it's just been a particularly bad week (so other patients have said) But I think it's also because it's a busy London hospital and they just have too many patients! Plus it appears they only have 2 members of staff who are able to do the treatment I am having using the ABC technique!

I am trying to stay positive! Which is helped by the fact that the staff are lovely. But I am finding the whole thing a complete pain! But if it works, then I can't complain!

So far no side effects except being knackered! I'm also 10 days into taking tamoxifen, and other than night sweats, which started during Chemo, I have no other side effects!! Long may that last!

Good luck to those having treatment today. Well done to all those back at work.

Hope everyone has a good day x

difficultpickle Thu 03-Apr-14 10:05:39

really waiting for that long sounds so tedious. I bet if you were to arrive for your appointment 1.5 or 2 hours late you'd be in trouble! It must be hard having to contend with this and work (I still can't believe you are continuing to work through all of this!).

Nearly at the end of the first week of Easter holidays. Ds has worn me out so I'm pleased he will be on a course for next week. I'm hoping to find out tomorrow what my next treatment plan is. Not sure if I will hear direct from the London hospital or have to wait for the local consultant to contact me.

Either way if I have to go back for another inpatient stay I'm told that I will get a bed as a priority and should expect to be back in hospital some time next week. I'm really not looking forward to it but at least I have an idea of how the treatment will be - 2 weeks of feeling okay followed by 2.5 weeks of feeling mostly crap before another 0.5 week of feeling okay before I come home. I'm also reassured that I will only have to put up with crap food in the local hospital as the London hospital ward has its own chef.

Hope everyone has a good day.

malteserzz Thu 03-Apr-14 16:46:55

Feline how did you get on with your hair today ? I hated that feeing of being fine but knowing the chemo would make you feel ill again, you'll soon tick them all off though

Really I can't believe the waits you have had that's dreadful sad my radiotherapy dept was busy but ran like clockwork, half an hour was the most I waited and usually got in on time

Pickle glad ds is on a course next week that will make it easier for you

I've completed my 2 days at work this week smile didn't want to get out of bed this morning but that's not unusual for me !

reallyreallyworried Thu 03-Apr-14 17:19:33

In their defence one of those long delays was due to a power cut that lasted 2hrs! The other day, machines breaking and lack of staff! It does seem a bit chaotic, but as I said staff are lovely!

Todays session only took 25mins grin so I was only in the hospital for an hour!

Although not so good is now I am lying down in bed feeling crap! I don't know what's up, but at about 3 today it was like my batteries had run out?! My body decided it had had enough sad hoping the feeling soon passes!

Anyone else had times like that? There doesn't seem to be anything in particular wrong, but I feel like every move is an effort! Even writing this seems hard work!

malt glad you got through your days at work! When does your school break up for Easter? Not long till your holiday smile

malteserzz Thu 03-Apr-14 17:28:06

Glad today's was quicker really and nice staff do make it better smile I think the rads do make you tired but I found it was more of a sit and have a cup of tea and be ok kind of tired rather than the exhaustion of chemo
We break up for Easter a week tomorrow, holiday a week on Sunday fingers firmly crossed nothing goes wrong before then !
Hope you feel better soon, early night needed maybe ? X

reallyreallyworried Thu 03-Apr-14 17:40:26

Thanks malt early night is a definite, although night sweats may prevent a good nights sleep! I seem to be doing 2hrs sleep then awake for a while then another 2hrs! That along with Rads, and running around after 2 children. Might just explain why my bodies complaining! wink

weebarra Thu 03-Apr-14 19:01:01

Yes, really, I think when this is over you've earned a holiday! Knackered today - have now had 14 cycles of chemo and feel as though my body is about to give up! I have a night out with work tomorrow - just a meal so I can drive and not stay late. And a very quiet weekend planned, which makes a change. Easter hols start tomorrow here!

really DF started to struggle after about day 13 of rads, he slept most of the day for the rest of that week, the oncologist said its fatigue, not just tiredness, the rads are damaging healthy tissue and your body fights hard to repair itself. Now, day 20 he seems much more alert again, hope you feel better soon thanks

mildmay Fri 04-Apr-14 10:04:30

morning all hope everyone has a good friday.im heading out soon for my first chemo not really sure how the next few days will be .good news though i got emend thanks to reading about it here.hope everyone has a lovely week end and the smog clears x

Good luck today Mildmay - hope the sickness stays at bay for you.

malteserzz Fri 04-Apr-14 12:30:22

Good luck mild may let us know how you get on. If you do get side effects don't forget to ask for help on here as no doubt someone will have experienced the same

mildmay Fri 04-Apr-14 12:58:17

Thanks malt and handbags knowing you all managed it helps loads.Here i go x

Wren48 Fri 04-Apr-14 13:58:25

Good luck, Mildmay. It's really good to get it underway. I hope the side effects are kind to you.

foofooyeah Fri 04-Apr-14 14:58:21

Good luck today mildmay

Just wishing everyone a good weekend.

Plus I have the answer for those struggling with sleep.

2 x gin and tonic + 2 x Tramadol = 11 hours sleep.

kitkat1967 Fri 04-Apr-14 15:19:03

Blimey Foo - that's a major knockout combination smile.
Have you arranged to get your results yet?

foofooyeah Fri 04-Apr-14 18:29:17

Yes, everyone away next week, so results on 15th and onc appt a week later.

Mummywheel Fri 04-Apr-14 18:53:59

Hope your chemo went okay mildmay and you manage your sickness well. I had my third FEC on Wednesday and this time have not experienced any nausea at all smile I also have Emend.

Hope everyone has a lovely weekend!

kitkat1967 Fri 04-Apr-14 19:35:58

That's good news Mummy - long may it continue.

Hope it went well for you today mildmay.

That's quite a wait Foo - hopefully your onc will not need you to have any more chemo.

mildmay Fri 04-Apr-14 20:44:23

Thanks all,went well and i feel so happy to have got first one out the way.Was shocked to see the amount of drugs that were going in.So silly just expected a small bag .Hope everyone having a nice evening DS back from uni but already hes out.lovely having him home for a while makes life seem normal again .

malteserzz Fri 04-Apr-14 21:36:34

Foo foo hope it passes quickly till the 15th, keep drinking and taking the tablets !

Mildmay glad it went ok there is a lot isn't there, I didn't know it was syringed into the back of your hand either

Mummywheel glad you're ok

Were banished upstairs as dd has friends round for her birthday, it's quite relaxing watching tv in bed !

BetsyBoop Sat 05-Apr-14 07:08:23

Foo we we sit with and supply copious tea/cake/gin til the 15th!

Mild -I hope you are ok this morning. It seems if you are going tobe sick with FEC it happens within a few hours, so if you haven't been you may be ok ( but will probably still feel a bit rubbish...) I think everyone is shocked the first time when they see all the syringes.

That's good mummy, as nausea for days is horrid smile

Well we are off on holiday today (cottage in the Lakes) and I'm not sure if we have Internet coverage, so if I'm not around for a while you know why smile

malteserzz Sat 05-Apr-14 08:27:46

Have a lovely time Betsy smile hope the weather is kind to you

reallyreallyworried Sat 05-Apr-14 08:29:32

Hope you have a great time Betsy

Well done mildmay number one done! Hope you stay side effects free.

malt tv in bed sounds perfect!

foofoo that was an interesting combination for a good nights sleep! Right now I would be happy to get a block of more than 2hrs sleep!

So I have 2 whole days hospital appt free smile one thing about Rads is that it really makes you appreciate the weekend! I'm 8 Rads down and 17 to go!!

Hope everyone has a nice weekend.

TaDaaah Sat 05-Apr-14 12:06:19

Hello everyone,
I was on here a while ago under a different name. Now back (trying to avoid trolls following me) so will give synopsis of medical stuff vs name.
Low grade sarcoma in spinal canal and sacrum. The scared shitless, no memory and can't read anyone's stuff person. Ashamedly, me.
Anyway, wanted to say hello. And thank you for the support that you have to me.
I'm now recovering 9 weeks on, from major surgery. Doing pretty well. Emotionally, so so. World upside down in terms of how I view my friendships. Has anyone else experienced that?
They think that they got It all put, which is pretty amazing. Not so amazing to be on the drugs I'm on now to cope with the problems in my back. I feel like I dodged a bullet but have been in a sudden war zone.
At the time, coping with what was happening, the shock, the fear, that was all I felt. Now, things are emotionally crumbling around me in terms of relationships. My concept of them, anyway.
Sorry to pop on and moan.

BetsyBoop Sat 05-Apr-14 12:29:08

GOOD to see you Tadaaah ;-) Yes I think that's fairly common re friendships, folks were either there for you or they weren't. A couple of people who I had considered close friends barely made contact as I went through treatment, so quite frankly they can bugger off now. Other friends have become much closer as they were just amazing.

really - 8 Rads down and 17 to go smile This time next week 13 down 12 to go, so you'll be over half way, woohoo. Once you get past the half way mark the end of rads is very near smile

mildmay Sat 05-Apr-14 13:18:08

Thanks Betsy no sickness yet just feel abit spaced out.Have lovely time in the lakes.kirby lonsdale lovely for a visit if you pass by x

TaDaaah Sat 05-Apr-14 13:50:52

Really, you've come so far. One more week and you'll nearly be there.

Hi Betsy, good to know it's not just me then. I thought I'd just been terrible at misjudging friendships (and wasting time).

ConsiderablyBiggerBuns Sat 05-Apr-14 14:15:08

Hi tadaah this is my second experience with cancer and even after nearly 30 years, I am still a bit miffed at some of the friendships that crumbled over that time, mostly due to their issues of guilt over not being there more then avoiding me to avoid the issue. I have tried to head that off this time around by being much more direct about the whole thing, actively contacting people to let them know and asking for help if I need it. Any friend that ignores a direct communication is hardly worth bothering about. I'm sure there will also be some friendship adjustments, those that really step up to the plate are always going to have a special place hereafter.
Anyway, after my diagnosis over a month ago I am about to start my treatment journey with a BMX and full node clearance on Tuesday. I have a couple of questions for you lovely ladies. The hospital can't tell me how long I will be in for, anybody else who had the same op, how long were you in for, please? Also, any general tips for things to take in with me that make the stay more bearable/comfortable. Lastly, how long before I can hope to be fit to drive?

felinesad Sat 05-Apr-14 14:41:55

Malt Had hair cut short on Thursday and felt better. Had wig reshaped and felt happier with it. Hair actually seemed to have stopped coming out and my Oncologist on Friday was amazed at how much hair I had. In fact she assumed I'd been cold capping which I haven't.

Today feeling really weepy again. Woke up to a bed covered in hair. Now hate my wig and think it only looks good if my lovely hairdressers styles it for me. DP tried to give me a cheer up pep talk but he must have felt disgusted to make up in a bed full of hair sad.

Tad Welcome and hope everything goes well. I haven't really had any problems with my friendships. In fact I've had some very surprising people at work being very supportive and staying in contact even if it's just FB or text. It's nice to know you've not been forgotten. I sometimes feel like the world is just carrying on without me like I'm on some parallel universe.

Today I'm going to try wearing my wig for the day to try and get used to it and clear out a load of the boys clothing via ebay or charity shops.

2nd FEC on Monday but have got Emend so hopefully no vomiting or nausea this time.

Mild Hope you don't suffer too much. Apart from a brief vomiting session on day 5 and feeling a bit fluey for a couple of days it was manageable.

weebarra Sat 05-Apr-14 15:49:42

feline, I'm pretty sure your DH won't have been disgusted. I know that the idea of me losing my hair freaked my DH out, but when it actually happened he took it in his stride.
Had a lovely meal with my team from work last night, but very tired today. I'm not likely to be back at work for a while (technically I'm still on mat leave!) but it was good to catch up.

TaDaaah Sat 05-Apr-14 16:12:06

Considerably (would prefer to call you BiggerBuns) - cool name! I wish you well with your next slog of treatment. Your had a 30 year gap from your last? Sometimes, hospital treatments / stays are unpredictable. Have they not said?

Mummywheel Sat 05-Apr-14 16:37:11

A tad envious Betsy The lakes is one of my favourite places! My SIL has a lodge in Troutbeck Valley near Windermere which we use regularly and would generally be going around now sad Hope you have a great time! smile

BetsyBoop Sat 05-Apr-14 17:11:08

Ah the joys of wifi at the cottage!

Buns I had same op (no recon) in Nov and was in hospital just one night. That was me pushing to get home though they said normally folks are in two nights. I came home with two drains in for a week (everyone hates drains!). I was driving short distances about two and a half weeks after the op, the worst bit was shutting car door and doing seat belt, the actual driving was fine (thanks to power steering) If you have any more qu let me know

BetsyBoop Sat 05-Apr-14 17:15:48

Mild - yes love Kirby Lonsdale too, been many times smile

Buns - also loose button-front tops are ideal - I borrowed some of DHs old shirts and they were perfect - it's hard to get anything on that involves raising your arms. Also for sleeping I had a V pillow which was invaluable, as I had to sleep propped up on my back with a drain each side...

malteserzz Sat 05-Apr-14 17:19:35

Feline I do think its normal to be up one day and down the next. Just important to remember on your down days that there will be good days to come. The hair loss is horrid there's no getting away from it but it is temporary. The more you wear your wig the more you will get used to it, I was very self conscious in mine at first but you soon realise that no one bats an eyelid, they're too busy with their own insecurities

Really I hope you have a good weekend away from rads and I hope you catch up on some sleep of at least rest

Tadaah good to hear from you, like the new name smile

Bigger buns I can't help much as I had lumpectomy and node clearance in separate ops but for hospital I would take front fastening pjs, something light to read, snacks, lip salve and moisturiser. I came home the same day after the lumpectomy but they made me stay in a night after the node clearance.

Wee glad you had a good meal, it's nice to do normal things sometimes

Mummy wheel, it's hard when you feel you're missing out on trips and holidays but hopefully won't be too long before you can start planning one

I've been shopping with dd today, we go away a week tomorrow so we got some holiday clothes and had a nice girlie day smile tired now though

TaDaaah Sat 05-Apr-14 18:30:15

Malt [wave]

foofooyeah Sat 05-Apr-14 18:39:54

I was feeling very tearful and miserable today, been snapping and snarling at everyone. No real reason for it either.

managed to give myself a talking to and me and DS walked up to local village and ate chips sitting on a wall ..... Haven't done that for a long time. Helped just getting out the house for a while.

foofooyeah Sat 05-Apr-14 18:42:37

TaDaah, yes friends have been very interesting. Got lovely practical help from people I hardly know, and nothing at all from someone I had felt was a good friend .... Don't count her as that now.

Also struck up some unusual friendships like a work colleagues partner (they are gay) who I regularly spend time with (he also has cancer).

BiggerBuns - for me in hosp ear plugs and an eye mask were essential if your want to get some sleep. It never gets totally dark and is never totally silent in hosp, so if you want to totally shut yourself off go plugs and mask!

Feline - I was awfully self-conscious in my wig to start with. And then you realise that no-one can actually tell its a wig, and it keeps your head warm, and it becomes part of your going out routine, and suddenly it's no big deal any more.

Oh and on the friend front, I must have been lucky as all mine have been fab. And then there have been people who I didn't know very well who have also been kind and wonderful. In fact I've learnt a valuable lesson about supporting others as I know how much I've appreciated kind gestures; I now go out of my way to support others when they need it. I think I'm a better person now.

Good to hear from you Tadaah, I was only thinking about you yesterday
thanks

Lilymaid Sat 05-Apr-14 20:56:52

Betsy you always seem to go on holiday to my favourite places! We are off to our favourite posh B & B in the Peak Districy next weekend so hope weather will be kind (twice we have had to wait for snow ploughs to arrive before being able to get out of the place)
I'm now taking high strength Vit B6 after my nasty blisters last weekend which were SEs of the oral chemo. Oncologist fairly cheery yesterday as my blood was normal.

On subject of wigs - no one seems to realise I have a wig - only ever had complimentary comments on my new hair style. My hair is now grown back enough to go out without a wig but until it is a bit longer, nicely styled and I have decided whether to admit to its greyness, I shall continue to wear the wig.

Speedypenguin Sat 05-Apr-14 20:58:08

Hi all
Foo- glad you feel better after getting out of the house.

Malt- are you still enjoying being back at work?

Thanks to everyone for such good advice on here. I had my sentinel node op yesterday and the v pillow is helping. Was a bit startled by vivid blue nipple. Unfortunately my MRI scan showed another small lump so had a biopsy before going to theatre (the local anaesthetic didn't work for the first core sample either!). Fingers crossed this one is ok but starting chemo on Monday anyway. A bit nervous about what to expect but it seems that it can be different for everyone.

Am very lucky with my friends and had a 'care package' including hats and scarves and foods that might help delivered. Have also had food delivered for my freezer.
Still deciding about a wig but have had appointment through.

lucsnowe Sat 05-Apr-14 23:26:40

Hi everyone. Zombie and malteserzz kindly invited me to join your thread. I'm currently waiting for a biopsy after a mammogram showed calcification in my right breast. I'm in a state of high anxiety, partly because that is my nature anyway, but also because I have two dcs, 3 and 7. I'm a single parent and I'm panicking about what would happen to them if i get really sick, either from treatment or from the disease. But it is amazing reading your thread and hearing your stories. Everyone is so incredibly supportive!

foofooyeah Sun 06-Apr-14 08:08:39

Welcome lucsnowe

Panic is very natural, you immediately think the worse, and to be honest those early days are some of the worst.

Once its clearer what you are dealing with then treatment just sort of swings into action.

You just cope.

ConsiderablyBiggerBuns Sun 06-Apr-14 08:09:40

Hello all, weather is very dull and drizzly down here in Cornwall, was hoping for a bit of warm spring sunshine for a few days while I am up and about. Thank you all for the hospital tips. V pillow sourced, ear plugs packed and new button up pjs purchased from M&S. Good idea about borrowing DH's tops. I'm not a button up top kind of girl, have desperately been looking for something I wouldn't mind wearing but that suggestion made me realise that it would be silly wasting money on something I would only wear for, hopefully, a short time.
Hospital stay still a mystery, I was original told one night for the BMX but when the node biopsy was positive was told it would be longer, but not sure if 2,3 or 4 nights. To be honest, I don't mind staying in for a couple of nights, my DH isn't quite as supportive as some and it will lessen the burden that will fall on DD1.
Welcome luc with any luck you won't need to hang around here for very long but whatever the outcome, believe me, this forum has restored my sleep and peace of mind. The waiting is awful, I was very lucky (?) that they made the decision to tell me they were 99% sure I had BC when I had my tests. I knew I had a lump but had not really expected anything other than a reassuring mammogram and so it was a bit of a shock and I was all by myself, however, I still think that was preferable to having to wait a week or longer for results stuck in some sort of limbo. Use the time to get some reassurance from the fabulous women on this forum that if it is unpleasant news, it is still manageable. There seems to several single parents on here who I am sure can be a particular source of wisdom and comfort.
sleepy lumps are pants! Hope your new one turns out to be nothing. I don't start my chemo until 10 weeks after my op, the differences in treatment plans are interesting.
tadaaah feel free to call me bigger buns (the name was chosen because I was in a production of calendar girls last year, thank god I got them out when I could!) might need to change to considerablysmallerbuns after Tuesday. Enjoy your Sunday everyone. I am off to buy some material to make my daughter a costume for her part as the White Witch in Narnia. Sounds lovely only I don't sew - have got carried away by the great British sewing bee. I will blame Claudia winkleman when I am sobbing at midnight the night before dress rehearsal!

malteserzz Sun 06-Apr-14 10:13:00

Morning all smile

Speedy I'm loving being back at work thank you,have a great class, job share partner and nursery nurse to work with who've been really supportive. My head is starting to pile the pressure on already though. Hope your new lump turns out to be nothing and of course good luck with the chemo

Luck glad you've come across, hope your stay will be short and sweet for the right reasons

Bigger buns I did buy button up tops and won't wear them again so that was a bit silly. Good luck with the costume as a fellow non sewer I think you're very brave !

Talking of being brave dd is having a flying lesson this afternoon, we bought it for her for Christmas. I'm not brave enough to go up in a 4 seater plane so dh and friend are going with her. I'm staying on the ground taking photos !

Hope everyone has a good day

weebarra Sun 06-Apr-14 10:25:05

I've still got some button up jammies from bfing DD so that saves me buying any. Currently still in bed with DS2 who has a tummy bug, just in time for easter holidays. Poor wee scone (really hope I don't get it!).

traviata Sun 06-Apr-14 10:43:26

biggerbuns, at the risk of repeating my earlier post, I also packed a cloth shoulder bag to tuck my drain into, and wore it in bed as well; and remember to take 'going home' clothes that will allow a drain to exit somewhere; my long sleeved dress was hopeless and I wore my PJs home.

I also had a shower on the ward the morning after surgery, so do take shampoo etc and a oldish towel.

greeneyedcat Sun 06-Apr-14 15:26:51

honey how many more rads for your DF now? Hope he's managing ok and he got the other issue sorted out. The pain of constipation is shocking, in view of where my radiotherapy was its something I dont want to think about ever again shock. Prune juice is my friend.

Waving to tadaaah good to see you back. Ive never had loads of friends but I seem to have found some really lovely people (particularly work colleagues) since my diagnosis and treatment last year. A couple of people who have had cancer themselves have been a huge support. Others have clearly not known what to say, so havent said anything and have just ignored me.

Sending hugs to all those having tests, treatment, or waiting for results, and to everyone feeling ill or scared. My check up is mid April, I can feel my anxiety levels creeping up already.

I got a very short free book on Kindle which reminds me - Now is all you've got, The past is memory, The future is wish, Now is real. It helps me to bring myself back to this moment right now and not dwell on what might happen.

Hi greeneyedcat DF has 8 more sessions left which seems amazing when you look at the list of dates at the 1st session and it seems endless,
I think he's much happier now he can see light at the end of the tunnel, we had a big family get together yesterday for his birthday which was lovely, although he couldn't eat any of the birthday goodiessad
The constipation is better,the oncologist prescribed a couple of things(can't remember what) but they seem to help thank goodness,
That must have been awful for you to suffer with that sad
Incidentally, what happens after the last rad session? Do they leave you a few weeks to recover before scans to check what's going on? Nobody has talked about afterwards.

lucsnowe Sun 06-Apr-14 19:47:45

Thank you to all of you for your good wishes and welcomes. Malteserzz, have you finished all of your treatment? Do you find it tiring being back at work? I am a teacher too, and can't imagine teaching while having therapy, as many of you on here seem to. Do you have the option not to go back, ie to be off on sick leave? I admire your energy and devotion. Bigger buns, very good luck with your ops. You sound very organised! Foofooyeah, I can imagine you are right that not knowing is one of the worst states. Green eyed cat, I like the message of the book you mention. I will try to bear it in mind. I hope everyone has a nice evening!

Speedypenguin Sun 06-Apr-14 20:15:18

Lucs- I am on my own with the children but have been so lucky with all offers of support and so many friends rallying around. The waiting for results is horrible, I feel more in control now I know what I am dealing with. The support on here is wonderful with many wise and knowing people :-).

I am a teacher and not allowed to work during treatment due to increase of risk with all the germs flying around with children. Am already missing my class but had a lovely card from them which cheered me up.

Fingers crossed for you.

malteserzz Sun 06-Apr-14 20:33:50

Lucs yes I've finished my treatment , just on tamoxifen now. I went back to work between being dx and my lumpectomy but then was off for 10 months while I had chemo, node clearance and rads. Full pay for 6 months then half. Like penguin was advised not to work because of the germs and then it would have been impossible during rads with having to travel to hospital every day. I only work part time so it's tiring being back but not too bad. I did miss work and the children especially so much.

greeneyedcat Sun 06-Apr-14 21:22:26

honey I had a slightly longer session of rads once a week and then again on the last day. I was told they were taking pictures to make sure treatment was working. I didnt realise the radiotherapy machine could do that. After the last session I was left for about a month to begin healing and then I had an MRI and blood test which confirmed the treatment had worked. I will have my fingers firmly crossed for your DF getting the same news. What a shame he couldnt manage his birthday goodies cake he'll have some catching up to do!

reallyreallyworried Mon 07-Apr-14 06:57:29

Morning all

I had a lovely weekend! Other than feeling a bit tired, I actually felt 'normal' and had some fun smile. Last night I only woke up twice grin best nights sleep, I have had in months!!

Back to Rads today sad thankfully I have a week of early appts. So fingers crossed they will run smoothly!

Hope everyone had a good weekend.

TaDaaah Mon 07-Apr-14 07:49:22

Speedy, the wait IS terrible, isn't it!
Glad you've lots of support.

Really, a good sleep... FANTASTIC! Hope Rads go smoothly this week!

ConsiderablyBiggerBuns Mon 07-Apr-14 07:55:32

So, last day with my own boobs. Have to say I am still quite upbeat about the whole thing, hope that doesn't mean it will hit me like a ton of bricks when I wake up after the op. After a month of knowing that I was hosting a ticking time bomb, just pleased to be starting the fight back. Have a lovely family day of distraction planned, although the first part has failed already, was going to take the dog for a yomp on Bodmin moor but if is completely foggy and pouring with rain - not ideal conditions! Also planning lunch out, hopefully at the pub newly taken over by one of the winners of last year's professional Masterchef, trip to hobby craft to buy some wool to keep me occupied for the next couple of weeks, muppet movie (yay!), fish and chips and then introduce the DDs to the Vicar of Dibley on DVD. That should keep me busy, must remember to find time to pack my hospital bag as have to leave tomorrow at 6.30. Hope you all enjoyed the weekend and best wishes for your treatment, days at work and everything else you are going through this week.
By the way, anybody else get bombarded by cancer diet books when they were diagnosed? Not sure what people are trying to say! Anybody on here firmly believe that anything they did or didn't eat helped?

malteserzz Mon 07-Apr-14 08:08:59

Morning all smile

Really I'm glad you had a good sleep and weekend, fingers crossed you get a good week of rads being on time

Bigger buns glad you're feeling upbeat about it, it is nice to get things started. Sounds like you've got a busy day ahead. I've just been trying to eat healthily but not really changed anything about my diet

Morning ta daah did you have a good weekend ?

Looking forward to my 2nd haircut after chemo today, it's getting bushy at the back hopefully she can make it look a bit better

harrietv Mon 07-Apr-14 08:45:59

Hi Biggerbuns - happy last day of your boobs. I too felt quite weirdly fine about losing mine and 3 weeks in, even when I look at my odd nipple-less mounds I don't feel any regret. And in clothes they look great.
I was in 2 nights for BMX and implant recon, but no node clearance so I guess that could add a night, though maybe not. Came out with 4 drains which - as everyone else said - were horrid, but really only became a pain once I started being more mobile and my DCs are young and found them completely freaky so I was trying to (unsuccessfully) hide them under dressing gowns. Mine came out in a week.
Still sleep with V pillow. Actually my wedge was really uncomfy but lots of pillows to sleep on incline (in hosp your bed goes up so no problem) important. Snacks (not a big fan of hosp food). And yes to everyone else's suggestions of ear plugs/eye mask, button up tops, post surgery bra (this was a must at my hosp). Baby wipes as showering was beyond me for at least 5 days. Thinking of you tomorrow.
Have had my own freak out of a weekend after finding an enlarged lymph node above my collar bone. Rational brain says it must be swollen due to swelling in new foob area. Irrational middle of night brain can only think of all the horrible things you find when you google superclavicular node swelling. Glad I can call the BCN soon.
The psych who saw me pre: op said things could be harder after treatment. I've had more tears/freakouts this past week since being 'discharged'. Everyone wants to celebrate. Think I'm experiencing some post traumatic stress stuff!

Wren48 Mon 07-Apr-14 08:52:23

bigger buns, I found that well meaning people gave me much unwanted dietary advice. This was usually along the lines of "give up all dairy", "give up all wheat". I hated it as I felt my life had fallen apart enough already, and I had no emotional space to radically overhaul my diet - and yet i was scared that there was something out there I should be doing. But there is absolutely no evidence behind this sort of radical advice, according to the nutritionist at the Haven breast cancer therapy centre. Her advice was simply to follow general healthy eating guidelines (including a big boost of vegetables - half the plate. Eek) and not to allow blood sugar crashes and surges - linked to inflammation in the gut, which is linked to some cancers (though not breast, I believe). I don't think there's evidence at the moment that once you have breast cancer that your diet can make a difference, but there's obviously quite a lot of research bubbling along trialling the impact of various food extracts (I've seen peaches, turmeric, broccoli cited).

Sorry, this is all a bit long winded, but I think it's a really interesting area because of the amount of misinformation out there making it hard to know what's real. I'm trying to eat more veg, but on chemo taste buds go topsy turvey so I am forgiving to myself for eating some really odd stuff.

Wren48 Mon 07-Apr-14 08:56:26

harriet, cross post with you. Enlarged lymph nodes are normal after surgery. Yes they can mean something else, but given you've just had surgery, that's the likely reason.

difficultpickle Mon 07-Apr-14 09:42:19

Morning all. I hope everyone had a good weekend. I've been poorly but can't really work out the cause. Couldn't stop being sick. I wondered if it was food poisoning but the last meal I had before I was ill was at a local pub with ds and we had exactly the same food. He was fine. I wonder if it was just too rich for my newly sensitive stomach?! I ended up losing 7.5lbs in 3 days which is really odd. I've now lost 2 stone since I started treatment in February.

Good luck Biggerbuns I found it a lot easier to cope with things once treatment actually started.

Good to see you back Tadaahsmile

Speedypenguin Mon 07-Apr-14 10:07:44

Good luck biggerbuns. Hope op goes well.

really sorry to hear you have been poorly.

I am counting down until I start my first chemo in 4hours! Getting a bit anxious and have eaten a bag of maltesers in case I don't want chocolate for a while! I am trying to drink plenty and just keeping everything crossed.

weebarra Mon 07-Apr-14 11:27:51

speedy, I'm sure you will be fine, it's good to get started. Drinking lots is important!

Wren48 Mon 07-Apr-14 13:41:21

Good luck, Speedy! And good luck tomorrow, Biggerbuns..

foofooyeah Mon 07-Apr-14 16:35:39

buns I had a bmx in feb and have not missed my old boobs at all, and there was 7 lbs of them. Similar to harriet I was in 2 days, and came out with 4 drains. Hope all goes well tomorrow.

speedy hope chemo going ok, late start for your first one, I was scheduled to go in at 12 but they said to come in at 9 as t was my first one.

weebarra Mon 07-Apr-14 16:59:19

Sorry buns, didn't realise your op was tomorrow, good luck! Mine is happening after chemo so in about a month - I will be picking your brains!

wineoclocktimeyet Mon 07-Apr-14 17:55:13

Goo luck tomorrow Buns. I'm also having a bmx on 20th May so will also be watching with interest.

Hope everyone has had a good first proper day of half term (assuming you are in England)

Speedypenguin Mon 07-Apr-14 18:12:58

Am home. The process was not as bad as I was expecting but feel like I am waiting to see what happens. My lovely friend is popping back in a minute and then we will do stuff so I don't overthink what my body is doing. When does nausea kick in?

Thanks greeneyedcat I really hope the treatment works for DF, he's suffered enough now, he's craving a pork pie hmm
Thanks for your good wishes thanks

malteserzz Mon 07-Apr-14 19:12:03

Speedy glad your first one is done and it wasn't too bad. You might not get nauseous, I came home and waited for it but it never came. I did feel woozy and hungover and that kicked in after a couple of days
Good luck for tomorrow buns, we'll be thinking about you x

Pleased with my haircut, impatient and want it to grow faster though !

Speedypenguin Mon 07-Apr-14 19:57:59

Feel sick now :-(

wineoclocktimeyet Mon 07-Apr-14 20:31:06

Oh Speedy, hope you're not feeling too bad - make sure you take all your antisickness meds.

malteserzz Mon 07-Apr-14 20:42:08

Poor speedy is there someone with you ? Take your meds and if they are not working call the chemo helpline as there's other things they can give you.

amberlight Mon 07-Apr-14 21:18:16

Yes, definitely take meds for sickness and ring unit if they aren't working. Do you have ginger beer to sip?

ConsiderablyBiggerBuns Mon 07-Apr-14 21:24:23

Hello everyone, thank you for all your good wishes and excellent advice. Bag now packed and includes all your suggestions. Still hasn't quite sunk in which is hopefully a good thing as I could do with a good night's sleep. Have to be at the hospital for 7.30 in the morning, I was hoping this would mean I was on an early list, but having read an old thread today where some of we're going through your ops with similar appointment times and late afternoon ops, I have braced myself to be patient. One very dear friend sent me an iPod shuffle preloaded with lots of upbeat songs and DD1 has done the same for my iPad. Have also been saving the last episode of Silk and some other tv progs that I will enjoy watching so shouldn't be short of entertainment. Saw the Muppet Movie today, I can thoroughly recommend as a great distraction technique. Didn't get to do most of the rest of my plans today for various reasons, I guess I need to get used to being a big flexible with how my days pan out. Anyway, will keep you all up to date with my progress. Thanks again for being there.

malteserzz Mon 07-Apr-14 21:55:04

At my hospital they asked everyone to get there for 730 which seemed a bit daft really, I didn't go down till 3 and was starving ! So my advice if you are nil by mouth after midnight have a snack before you go to bed ! Glad you've got things to keep you busy

reallyreallyworried Tue 08-Apr-14 07:10:01

Hi all

Good Luck today BiggerBuns hope they don't keep you waiting around too long! Nice to find another muppets fan! I'm off to see that movie at the weekend, I hope!

I hope all the anti sickness meds help you speedy

I had a REALLY bad nights sleep! But that could be because I have a scan today, and appt with oncologist and surgeon to see IF they think they need/can remove the tumour (or what's left of it) from my liver! I hadn't really thought about it for a while, as I have been busy with all the Rads stuff! I'm not sure what I want them to say, part of me is hoping they will say it's disappeared and all is fine! But think that really would be wishful thinking! But the thought of surgery on my liver really scares me! As does the thought of more Chemo!

I've just had enough of all this and just want to get to the end of the Rads and then get back to normal life! Is that too much to ask?! sad

Wren48 Tue 08-Apr-14 07:23:04

really, very best of luck with today. You must be so sick of treatment. I hope that they can offer you confident advice on the best way to go. I know it can be annoying to have other people quote anecdotes about friends and family, but my dad had secondary liver cancer (they never found the primary) which was treated with oral chemo. Not only did the oral chemo work like magic (recession of tumours that never reverted) but he felt well on it throughout.

malteserzz Tue 08-Apr-14 08:02:30

Good luck today really, I'm hoping it will be like when we were first diagnosed and once you have a plan and know what's going to happen you feel a bit better and more in control

Speedy how are you feeling today ?

Big buns good luck again

Morning wren how are you today ? smile

weebarra Tue 08-Apr-14 08:17:56

Good luck for today really and buns!

Wren48 Tue 08-Apr-14 08:48:11

Thanks for asking, malt! I'm in my cheerful 3rd week, having finished FEC (thank goodness) and onto my first tax on Thursday. I know that it is very very naive to think that tax might be an easier ride for me than FEC, but that's what I'm hoping for! Today my sister is visiting to help my 16 year old with biology revision (that's what she teaches), so it's a boring easter holidays for the other two, what with chemo and ds1's revision. My ambition today is to plant some plants before I'm out of action for the next chunk of time. smile