All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

pepper Glad you're feeling better today, there's so much to take in when you're first diagnosed and I remember feeling completely overwhelmed by it all. Shame the hospital lost your referral but hopefully your bcn will be able to push it a bit and get it all sorted for you. Mine seems to be able to get appointments sorted in minutes whereas I would be on the phone for ages. Good luck with the trampolining you're braver than me!

My Silly- I had two periods on FEC and then they gave up until 8 months after I stopped chemo when they started again. The chemo had started me on my journey to the menopause though as they were quite erratic until they stopped after surgery.

Fresta- I think you were asking about hair. Mine came back completely grey/white (the salt/n/pepper look). It didn't change back so I have it dyed but I had to wait for 6 months until my scalp could take it. My friend who had chemo had blonde hair and hers has come back the same colour as before. I think it just depends. I was brunette to start and did have some grey before.

Rover- I think pCR stands for pathological complete response or something like that. Am sure if that's wrong Amber can give you the correct terminology.

Pepper- glad you are more calm. Hopefully you can have that scan sorted.

Night all

pepper glad your feeling a bit better today, big was to everyone (sorry I find it difficult to keep up with the thread! ) sometimes.
Oncology appointment for chemo discussion tomorrow so twitching nicely, shallow, vain moo that I am decided to get botoxed to cheer myself up so toddled along today and had a lovely discussion about semi permanent eyebrow tattooing so uf if it is chemo that's what I'll be going for as it's on special offer and justified by the fact I won't be paying for cut and coloured every 7 weeks :).

Afternoon everyone, I hope your appointment went ok today helly.
I had a call to book my CT scan for Friday - they have someone coming in specially on the Bank Holiday to do it. So now I am going from thinking "hurray, they realise they messed up and are doing everything to get me my results as planned" to "OMG, they know something I don't and it's so terrible they're scanning me on a bank holiday". Deary me, shoot me now!! Pre cancer I was the woman in control, slightly scary by reputation, very decisive. Now I'm a jelly mountain
Had my work referred Occupational Health call this morning. Cried all the way through They are recommending I don't return to work until after the first chemo to see how I react (physically and mentally) so early May. I assume the drs make their own decision though?
Fascinated by botox and temporary eyebrow tattoos though - which bit do you have botoxed? lips? forehead?

Well not as borderline for chemo as I thought and start FEC-T 6th April (oh shit!).
Pepper, totally relate i am normally the slightly scary woman in control now I can't make a descion save myself in normal everyday life 😕. I love botox forehead, frownies between eyes and around, my guilty pleasure; ). Am going to seriously look at the semi permanent eyebrow tattoo just not sure if it can get done before chemo starts due to the time frame.

Hope everyone is ok ,big hugs and waves to all x

Morning everyone, hope you all have some Easter treats in the planning.

I've been riding out the side effects, feeling a bit rough but getting there now, just waiting for the weird fluttery heart thing to pass which I've had every time after the EC. No-one at the hospital seems too concerned about it so not bothered getting it checked this time.

Helly, I'd love to have my frown lines between my eyes erased, but don't think I can possibly take any more needles in my body right now! My eyebrows were the last thing to thin and they haven't fallen out completely so maybe you don't need to rush to get them done yet . The only problem can be remembering where they actually were for penciling or tattooing if they do fall out completely! Good luck with your chemo

Thanks for the info Amber, how are you doing with your skin issue?

Pepper it's easy to read more than you should into arranging scans quickly etc, I'm glad they've sorted it for you

Helly you'll be fine,we'll help you with the chemo. Stock up on gingery things, biscuits etc and easy meals for when you don't feel up to cooking. Accept people's help if they offer. After the first one you'll be able to see a pattern of this days you'll feel rough and the ones where you'll be ok and can go out and enjoy yourself. I was never sick it just felt like a bad hangover but definitely doable

Still thinking of sleepy if you're reading and hope you're ok x

helly Sorry you're joining the chemo gang. I've just finished 7 lots (3 fec and 4 docetaxol, herceptin and pertuzumab). Overall the side effects haven't been as bad as I feared and although its not great I managed more good days than bad. I felt sick for about 24 hours when I was having fec, but wasn't actually sick and with the docetaxol I didn't even feel sick which was good but had more aches (a bit like the start of a heavy cold). I haven't lost my eyebrows or eyelashes but they have thinned out so I hoping that now it's finished they won't get any worse.

I am sitting in hospital having a blood transfusion of red blood cells. Yesterday's blood test showed my Hb levels were at an all time low and that, if there had been any space, I should have been admitted then. Anyway, once this has gone in I should feel a lot livelier and be fit for travel to the Canaries on Sunday. Looking forward to a week in the warm!

Lily, hoping they get you up and about and back to maximum oomph, and you have a lovely time in the Canaries.
Waving to all.
pCR means all traces of the cancer are gone during chemo. Well, there's a few rival definitions of the word 'all'. But that's the summary.
Me - bit of an odd time. I've had the operation to remove the area of skin that had reacted badly to radiotherapy from five years ago. It was a great operation - full theatre and surgeon etc - but wide awake for it (I'd asked for it to be done under local). The geek in me enjoyed that.
But yesterday was results, and they still don't know, as they are still doing yet more tests. Punch biopsies are pretty accurate, but this is a rare thing - so they want to know as much about it as possible. Which is fair enough, but I'd braced myself for yesterday and results. And of course now have to wait until 6 April when they will all be back. Big scar and dent, to go with the other scars and dents. I burst into tears in the office today, which isn't like me at all. I will be fine after a few days break. Thank you for asking, Fresta x

amber in awe of you staying awake for the operation and sorry to hear the results weren't ready, very stressful when you've already been through so much
lily hope the refill of red blood cells has you up and running soon - have a lovely holiday
helly good to have a date to get going even if it's not what you hoped for?

I have received the headscarves I ordered (retail therapy and the need to be organised combined). I ordered 3 different fabrics/colours.
The (lighthearted) verdict: Blue - look like I've escaped from a nunnery. Brown - Bavarian peasant. Black - dodgy Mystic Meg look...

Other highlights today involve DS1 with about 8 nanoseconds to go before he had to leave to school "I haven't done my Science homework!".
Me - what do you have to do?
DS1 - Research contraceptives and techniques.
Me - (spits coffee from nose) techniques??
Turns out he meant methods of contraception like barrier and hormones, not techniques... (He's 11 and in Yr 7)

Amber I'm sorry you have waiting to do. We all have our down times but hopefully you will have a lovely Easter break. I was offered to have my mastectomy under local. I firmly declined
Lily sorry that you need yet more bloods but hopefully they will top you up for a lovely holiday in the warmth. I feel the cold so much, the thought of warm is enticing.
helly and pepper you will both manage chemo. Just take the anti sickness meds and accept that you will need to rest more than normal. Some people work through chemo but I couldn't. We are all different.
Good luck to everyone waiting for results and scans.

I saw my oncologist today. I have had a very calm and side effect free FEC2, so she's increasing my dose from 85% to 90% for my final cycle. She had decided to put me on weekly tax, but has now given me the choice of docetaxal or paclitaxel. I consented to paclitaxel but if I have an event free FEC3 I might ask for the 3 weekly docetaxal because it seems like less hassle. I hate it when doctors give you a choice!
My anticoagulation has been a little ropey this week so the nurse is going to check my results on Monday by email - on her day off. That's working over and above her duties. People are very kind.

pepper that's great that you feel better about the hair thing. I think that will worry me too, but you sound like you feel more in control again.

helly at least you have a treatment plan and know what's happening.

I am feeling better after having my op last Friday. The pain is much more manageable, but I feel really anxious and depressed about everything now. I got an appointment through for seeing my consultant to get results from the surgery and it's not until the 11th April which just feels like ages away. And I'm really struggling with not being a normal mummy for my 16mo DS. Next week we also have the council's autism services finally coming to see DS aged 4, and there is school for DD and nursery to fit in, and DH's boss is pressuring him to go back to work... it all feels like too much.

elmindarina it's good the pain is getting better, trying to get everything back under control for the family is tough when you're trying to recover yourself.
Can you break it down into chunks? Perhaps help to get DD to school, a neighbour or school mum that you can ask? People have been offering help constantly here and stepped up if I've asked.
Can DH go back on reduced hours, work from home at all and plan to have the day of DS's assessment off? Can he go in later and drop off at school and nursery?
If it makes you feel better, I forgot to go to DDs parents evening on Tuesday. Absolutely clean forgot despite planning for it. Felt so so awful when she asked me what her teacher had said and was she doing well? But everyone at school was lovely, no one (except me) seemed to think I was an awful parent and we're all just doing our best. One day at a time.

Thanks pepper. DH and I had a talk and he agrees with you - that he'll go in next week but not the day DS has his session - I also have an appointment to have my dressings off that day so I really need him around. We do have our DMs around to help but they have their own commitments, although I do have a couple of school mums I can ask to drop DD back etc.
I'm clearly just going to have to get used to asking for help, and accepting it when it's offered. Really didn't realise how much I liked being in control of everything!

Hope everyone here is having a better night's sleep than I am.

Good morning all. I am sorry .i havent managed ro catch up with all the posts, but I will eventuallt. My skin has now started to take the full brunt of the radiation. My boob is very res like sun burn, but the filds under ny breadt and in my arm out are quite inflamed and sore. I was quite depressed the oast few dys, not that the SE is anything like the chemo, but you know there come these times when you jutst feel you have had enough. Having to go everyday for the rads, the sore and hot skin, the extreme hot flushes due to the medically i duced menopause and finally the fact it will never be over for as soon as the rads are done i will have to move on to Tamoxifen and God knows what that will be like for me. The hot flushes are so tough. I just get so worked up and so etimes when I am having one of them and my DC are being difficult I just lose it and start shouting at them, only to then feel super guilty.
Apologies for this being all about me and me, but I really am having a long and difficult week and nobody here seems to notice and .i do not talk about it. I have this sort of thing where I wish those who care would ask and follow up and where I would absolutely never complain myself. I just expect those who know me to go tha extra mile, but it is not fair to ask for tha much .i guess if I do not tell them how I am feeling!
Anyways, happy easter in advance to those celebarting, and best wishes to everybody awaiting results or recovering from procedures. I am sorry for not mentioning people. Will try to catch up soon.
Take care all.

Hi Royal, you poor thing. Five weeks of rads was never going to be easy. Do you still have a week to go? I know it's not like chemo, but it is relentless and it does hurt and lying on that equipment everyday is so clinical and uncomfortable. For what it's worth I had a massive meltdown at dd1 right in the middle of my sessions for complaining that I didn't have time for her (she was 20 and being pain). It's tough and makes you feel vulnerable. Sometimes just a kind word from a loved one is all that's needed but if that's not coming it's easy to feel so miserable. I do understand and everything you've said is perfectly reasonable and normal. I was shocked and continue to be by the lack of support from certain people, it's really tough to acknowledge that.

As I've said before the tamoxifen is suiting me fine so don't panic yet, it could all be ok. Completing treatment is daunting and you have become used to being at the hospital everyday. It's a wonderful relief to stop but also very weird.

Maybe you should tell those around you how you're feeling, I had a bit of a breakdown at my own mum a few weeks ago because she has just switched off from it all, I've come to the sad conclusion that she doesn't understand or want to. But if it were my children behaving like that it would be far tougher. Please talk to someone who can give you a real hug.

We're not celebrating Easter as such, but hope to enjoy some family time. Best wishes to everyone else.

Morning Royal. You sound really stressed. Sending you a virtual cup of tea and a good long sit down. The rads does sound tough and you've had a long course of it, but it will soon be over and not having to go to the hospital every day will make things easier I'm sure. I've been having flushes a lot this week, especially in the night, they are horrible. I think they will be easier to deal with once you have finished the rads and life gets on a more even keel again. Tamoxifen might not be so bad, plenty of women tolerate it Ok, and apparently there are different types to try if you suffer too many side effects so try not to dwell on that at the moment. It's important to ask for help from those around you, my DH has been brilliant, I don't know what I'd do without him, but he's not psychic and I do have to say when I'm tired and need him to just step in and take over for a bit. That's the funny thing about cancer as it's physically not visible really, so people don't see the effect it has on you, from the outside you can appear the the same as ever.

Amber sending you the best wishes for your results, and hope you manage to not dwell on them too much over Easter.

Happy Easter to everyone else not mentioned, hope you all manage to plan some treats amongst the waiting and treatments.

Hi everyone, old and new! I haven't posted for a while; I'm not sure why but I just didn't want to do anything associated with cancer, if that makes sense.

For anyone new, I was diagnosed last September, had loads of scans as they thought i had secondary in my spine (i didn't) then had a mastectomy followed by 3 lots of EC, then 9 weekly paclitaxol and I'm now half way through 15 sessions of radiotherapy on my lymphs as my SLN came back positive. Like you, Pepper, I was given the option of full lymph removal or radiotherapy only. It's so hard to make a decision and you almost wish they'd decide for you! But, on balance, I decided to go for the radio only. I asked my surgeon and she didn't give me any good reason to choose full clearance over radio; she said that the only real advantage would be if they were deciding on a treatment plan as it would be useful to know how many nodes were affected but since I'd had full chemo anyway, it wasn't necessary to know. The recurrence rate for full clearance and radio are pretty much the same but there is more chance of lymphodaema after clearance although you can get that with the radiotherapy too. For me, it booked down to not wanting more surgery and the after effects of lymph clearance. My oncologist also said that if it were his wife he'd recommend the radiotherapy over the full clearance. I think that overall it's fairly even, there's no obvious right or wrong, which makes it so much harder. Ultimately it was my personal choice but when I asked my dh,df and good friend (who is a dr) they all said if it were them, they'd opt for the radiotherapy. I'll never know how many lymphs were affected but then it makes no difference to my treatment anyway. And, to be honest, I'm not sure that I wanted to know.

The radiotherapy so far has been fine - no real side effects but I've got 7 more to go yet so we'll see. When I went yesterday they have me a chocolate rabbit after my treatment (they were giving one to everbody) and for some reason it made me cry. I don't know why I felt so touched.

Royal, I can really sympathise with the hot flushes - they're awful and I'm due to start tamoxifen so I'm guessing they'll only get worse. They wake me up constantly throughout the night.

I'm trying not to eat loads of shit (sugar) but I'm falling miserably. And with Easter coming up that'll only get worse!

I'm sorry to see new faces on here but the beginning really is the worst bit - things will get better.

Congrats on finishing your chemo, Fresta, that's a real milestone.

Sorry you've been having a rough time, Lily, I hope you enjoy your holiday.

I'm also clearing things out. My dad gave me his old wardrobe a few months ago, probably when I was at my lowest point, waiting for the results of my back biopsy. Anyway, I've had to get rid of it, even though it for perfectly in my room, because I saw it as "the cancer wardrobe"; likewise, a nice cardigan that my MIL bought me last November. I couldn't even bear to look at it so it's gone to the charity shop. It's strange the way material things can come to symbolise a horrible feeling.

Anyway, the sun is shining here and spring is in the air. I hope you all have a lovely Easter break.

Thank you anna,frestaand mrs. I am hoping this dark cloud will subside soon. The hot flushes and sweats really are affecting me and making me irritable. I will defintely be asking my dictor when i start the .tamoxifen on ways to deal with them as I intend to go back to work in Septmeber and need to have some degree of control over this.
I have nine sessions left which means the end of the Easter break. Luckily the hospital is only half an hour drive, so I can be back ho e for the DC this holiday. I started to dust the affected area with cornflour which reallt has had an instantly calming affect so far( or is it all in my head i wonder!)
Anna, the decision you made with the consultation you had, seems rational. I wonder if the choice between rads and full node clearance will one day be offered to everybody. To be honest the Axillary Clearance I had was so much difficult for me than the lumpectomy and I still am numb in some areas as well as getting aches from time to time in the arm.
amber i do hope all comes back well for you.
Take care everybodg.

Happy Easter everyone, I wish you all lots of chocolate, lots of wine and good family time x

Happy Easter all,
I had my CT scan on Friday so am waiting till Wed for the results, in the meantime DH has made his famous white chocolate and raspberry cheesecake and we're off to my sister's for the day.
royal - I hope you have managed to get some rest over the weekend and are feeling a little brighter.
Waves to all.

Happy Easter to all who celebrate. Hope you are all indulging in loads of chocolate
Thanks pepper for your kind wishes and I hope your scan results are reassuring.
My skin reaction is getting worse (nurse told me it will get much worse till it gets better) but I am focusing on the fact I have only 8 more to go.

Hope everyone had a Happy Easter despite the weather! I've got my appointment to discuss my surgery which is hopefully wle and snb, is there anything I should ask or anything you wish you'd asked either about the surgery or afterwards. The letter says she will discuss surgery and the complications from surgery which I hope is just standard wording but currently if I could cancel the appopintment and pretend none of it is happening I would. My bcn gave me a booklet about lympodema and basically told me that although I'm right handed I'd have to get used to doing things with my left hand as even carrying a handbag can cause it. Where we live and how we live are all going to have to change if this is the reality of having surgery as I really can't see how I can do all the things I do now but with only one hand. Sorry for the rant but any comments or advice would be useful.

Hello rover I actually had full axillary clearance when I had my lumpectomy. It is my left side, but yes there are certain precuations to consider from hereafter, mainly avoiding extreme temperature on the affected arm, avoiding carrying heavy weights, avoiding having any procedures done on that arm ( so no needles, blood pressure sleeves, etc). I do not feel,although unlike you it is my left side, that my life has changed a lot because of this issue in particular( with cancer our lives are overturned enough as it is eh?) what I would stress rover is the exercises post surgery. There are various levels of them and they both help get your arm back into shape as well as helping to avoid lymphodema. So if there is one bit of advice I would give you with much conviction it is to stick to the exercises even when you think you do not need them anymore.
Best of luck.