Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Oh flipssake, I don't know what I'm doing, but I'm posting rather than adding paragraph breaks somehow! SORRY!!! I've put the Christmas tree up, but I don't think I've ever felt less festive in my life. This time last year DP was in and out of hospital although we did manage to get one last Christmas together, which was as good as it could possibly be under the circumstances. This year, I just feel I want to run away from it all, although DS is still pretty excited.

Right, I'm going to stop before I screw up my post AGAIN, just noticed I managed to post something twice, I have no idea how! Thinking of you all and hope that everyone is doing as well as they can this weekend.

Sorry Flippy I'm a bit tired to suggest anything useful

I had complete different surgery so it's not really that helpful, but I wouldn't say I was in that much pain. Certainly not unbearable levels. I came to gradually. The worst pain was actually in my shoulders, where I had been tilted up on the table (bowel surgery). They hooked me up to a patient controlled morphine pump very quickly. I did also have an epidural, but it had already started to wear off.

I don't blame you for being scared, especially when the pain of your husband's illness and death must still be so raw. It's lovely that you are trying to get into the Christmas spirit for your DS. But don't feel bad if you need to hide too.

That's unhelpful about the psychologist. Is there any way you could afford a private session with someone beforehand, or do you have a Maggie's centre nearby? They do free counselling I think, though I don't know what the waiting time is like.

Sending a big hug I hope you manage to sleep tonight

Flippy, I had a bilateral mastectomy 2.5 years ago. I can honestly say that I had no pain in hospital. I woke up from the GA, felt a bit queasy, was injected with anti-emetics and put to bed. I had a morphine button, but the anaesthetist waltzed in in the morning and said I'd barely used it so took it away. I spent a couple of days in bed, then went to Glasgow to see my football team win the Scottish cup final. I'm not some sort of superhero, but the pain was easily manageable, just remember to do your exercises!

Flippy the anaesthetist for my mastectomy (without recon) did a paravertebral block before the anaesthetic. He said this was to reduce post op pain. When he came to see me before the op he gave me a bewildering array of choices, including having the surgery under local, which I politely declined. He did recommend the block, although my nurses said that was partly because it was his specialist area of research and not every anaesthetist at the hospital offers it.

I did have very little post op pain, and the pain after my axillary clearance was greater (no block) but also mild. I mainly had paracetamol and some codeine for pain relief after both operations and always declined morphine. Mastectomy is not an operation associated with significant pain. Ops such as knee replacement are worse for it. The drains can be a bit sore and there's no doubt you will be pleased to have them out, but they are not too painful.

Hello lacies. There have been a flurry of posts and I am trying to cach up!
Chewingthanks for the update re Tutti. I have no idea about the matter, so I can not comment. She is always welcome here as this thread is mainly for support. I hope she does decide to come back.
leslie thank you. My hair was never curly which is why it is such a nuisance now, but that is the least of my troubles
I hope you managed to get some rest las night?
Flippy, i feel for you . I hope this christmas brings much needed comfort and joy to you and yours.
Waving to everybody else.

Hi everyone

Feeling a little more human today and slept better last night. Trying to keep hydrated but sticking to water, squash and flat Coke (which is good for nausea apparently). No heartburn as yet but hiccups and keep burping! A mug of lemon and ginger tea in the morning works quite well, even though I don't like ginger. Managing to eat small meals and went for a 20 minute walk last night.

My chemo nurse said that if the sickness didn't abate by Tuesday they could try something else but as I feel OK today I guess it is working and I haven't actually been sick which must be positive.

leslie yes I'm on FEC-T (3 of each) and the other sickness drug I have is Granistrenton (not sure of spelling) but I was a bit wary about taking as it gives you constipation and I already am that way inclined. Luckily I got through last night without the need for that one but it's there as a back-up (as long as it doesn't back me up!)

The one thing is a terrible headache - feels like someone is sticking skewers in my eyes. Normal paracetamol doesn't even dent it. I took paracetamol and codeine this morning which has really helped but my DH said I should probably check this with them to make sure it is OK to take.

Anyway managed to do some ironing and sent DH out with a shopping list.

Hope everyone has a good a weekend as they can.

[b]Cookiepuss[/b] - I only thought of the chocolates because I am constantly in awe of how kind and attentive the NHS nurses and staff are given their terrible workloads. My doctors too are very nice.

[b]WWLKD[/b] - thanks for the pointers and links! All I could think of was parking when thinking about what disabled people have access to. Will get on to a benefits advisor after they let me out of hospital.

I haven't got a medical exemption card for free prescriptions. No one has mentioned anything about one to me, so will ask before I leave the ward.

[b]Flippy[/b], what type of recon is it? My recon was a DIEP free flap -- essentially the fat sliced out of my tummy and part of it used to replace the boob fat and skin taken out. Blood vessels are reconnected to keep the fat flap alive, which I understand is the tricky part.

It was done the same time as L mastectomy on Tuesday. Coming out of GA the day of the op wasn't so bad (7am check in at hospital, out of theatre at 6:30pm, ~8.5 hours of surgery). But the next day my blood pressure kept going down and I couldn't have the patient-controlled morphine or oral morphine cos my blood pressure as I kept feeling dizzy and like I was passing out. I was trying to 'stay ahead of the pain' as I had been advised by physio to use so I could get mobile. But I felt more and more like drowning down in the depths of hot pillows and swollen legs + arms (they took out a sentinel node on my L, and flushed loads of IV fluid down my R arm at one particularly low BP point). Quite fuzzy, headache-y and terrible back pain from being quite stiff and bent over to protect the tummy stitches until the start of day 4 post op. Unable to move much in bed too, which got pretty unbearable as I have to be in a very warm room to ensure the reconnected blood vessels in the flap don't seize up from being cold and stop working. Oh and had to get these under-skin injections under my R upper arm to prevent blood clots, and cannula very bruised and painful from IV antibiotics but nurses/docs tried to put a new one elsewhere and couldn't find any veins.

I wasn't very fit to begin with not overweight or anything but never took time to exercise or even go for a walk so in retrospect should have done more in that department.

The mastectomy bit doesn't hurt much as the transplanted tummy skin is numb, but the hip-to-hip tummy stitches hurt quite a bit. I'm now on oral codeine and ibuprofen, which maybe don't provide so much good pain relief but I can manage. I had two of three boob drains taken out last night and it was mega painful. Sorry it's all a bit graphic.

FWIW I don't think it will be the same for you, it will be better, and everyone will have a different experience

Minty, so glad to know you found DIEP worth it! Must keep telling myself as though I'm normally upbeat the surgery has knocked me back a lot.

And 7th chemo, wow that's a landmark! I'm steeling myself for start of chemo -- hoping January so I can have a nice Christmas with DH and DS 8 years. We have no other family in the UK as all scattered in Far East, Australia and US and too old/frail to travel here.

How many months from DIEP will the next recon be to balance them out, and then the nipple recon? You don't have to answer though. I'm just very keen to hear how it all went.

java I'm not sure what the timelines are for finishing off all the recon. I'm not seeing the plastics team again until beginning of Feb (they wanted me to get chemo finished first) and then that will be just a chat to see what, if anything, I want doing. If I do have more surgery (to make other breast smaller or new breast bigger) then I will be at the end of the queue as it's all cosmetic and women who need to have cancer removed (like I was in the summer) take priority.

At first I thought 6 months or more would be too long to wait but you need that time for the new breast to settle. As I say I'm really pleased so far and anyone from the hospital who has seen it has commented on what a good job the surgeon had done!

Sorry to hear you had such a tough time post surgery but hope things are getting better all the time

leslie I tried counselling last year but the woman kept talking about my upbringing- she was definitely a tell me about your childhood type person - and we always ended up with her saying I needed to make time to try and deal with things. I gave up 2 sessions short of my alloted time and I think she was cross with me! Will perhaps try some more through Haven in the new year

cookie it would be worth mentioning the headaches. I tend to feel quite toxic after treatment but not in enough pain to reach for pills. Just make sure you're drinking plenty

Thanks for all of the messages and reassurances about surgery. Leslie how are you doing? There are several places offering counselling, I had some at the hospice after DP died that I didn't find helpful at all, but might try somewhere else. I have sleeping pills from my GP which are really helping, because the middle of the night terrors are the worst.

weebarra and java - I'm having the LD flap recon - in Glasgow, weebarra, you must be near me I think - probably with ALNC, but going to have another chat with the surgeon about that. Java, sorry to hear that you had a tough time after surgery, hope you're feeling a bit better now, especially with the drains out. Mysillydog your anaesthetist sounds amazing - I will make sure to ask mine what they can do to help. You've certainly reassured me, so thank you .

How are you doing today cookie? Hope your headache has improved.

minty there's some total weirdos out there! I really wasn't keen on the idea of counselling for that sort of reason. I hope you can find someone more helpful

Cookie how are you? I take ondansetron, which is similar to granisetron. It's good stuff. Though any bowel slowing is beneficial for me. I hope you haven't needed to take it. And I hope the headache has eased off I always say it's like the lady who swallowed a fly. Chemo to kill the cancer, then drugs to ease the chemo effects, and then sometimes drugs to ease the effects of those too...

royal I hope your hair calms down a bit soon I was hoping mine will grow back more interesting, but so far it seems to be exactly the same. I'm not sure if it is planning to fall out again though, so who knows!

I'm feeling a bit delicate so I've had a sofa day. It's tricky to strike a balance between resting and completely giving up!

Sorry Flippy meant to send a big hug. Night terrors sound grim. I hope the sleeping pills help

Hi
I'm new to this thr

Evening all. to everyone going through treatment/surgery.
Lots of posts - I'm struggling to keep up with everything. Hope everyone is doing ok and resting where possible.
My PET scan results are now available but I can't find out more until I speak to a consultant next week which is very frustrating. I'll just keep busy and try to keep my mind off it for a little while.

Oops
Sorry I'm new to this thread! I have been lurking for a little bit as I've only just been diagnosed with breast cancer.
I'm 41 and a recent single parent to a 6 year old, who I have 50/50 shared parenting with my ex.
I know that after Christmas I will start Chemo, but don't know what type. At the moment other than the shock I feel physically ok.
So I am off work now, what can or should I do to prepare? Is there stuff you wish you'd sorted out? Or done? I need something to keep me busy and I like to plan ahead, although beginning to realise that plans and cancer don't really go together very well!

Welcome Halfbaked but sorry you need to join us

I'm struggling to think of much you can do to prepare. I guess making sure you have good stocks of things you might need in case you can't pop to shops easily (loo rolls, medication etc). Also if you have a big freezer you could do some batch cooking or stock up on ready meals?

Everyone copes differently and the side effects depend in the exact regime, but I suppose worst case scenario you could have a week or so of feeling too grim to do very much, so basically planning whatever you need to get through that!

Is your ex partner supportive?

That all sounds a bit negative. Chances are you won't need all of that, but I'm trying to get my practical hat on I like to be organised too and it's one of my biggest frustrations with this whole cancer lark

chewing how frustrating! I hope you have some good distractions

Hi Halfbaked, sorry to hear about your diagnosis.

I'll be finding out on Monday if I need chemo, so maybe we'll be starting together.

New to all this too with an 8-year-old, so below are what I did or am thinking of doing. Apologies if some are obvious or don't really apply.

• get cleaners to come in regularly?
• laundry service -- there is one that does pick up and delivery for our address; won't be using it but good to know there's an option, especially for duvets
• sign up for Look Good, Feel Better session near you
• I hate finance/bank/paperwork so I pushed myself to get my pensions from various jobs put together, tax filings, follow up critical illness insurance, scope out travel insurance options for cancer, etc.
• apply for a medical exemption card at my GP, to be able to get free NHS prescriptions (WWLKD thanks for this and all your tips)
• find a local salon that specialises in hair loss and set up an appointment to discuss wigs or other options
• lots of chemo kit lists online for chemo bag, chemo caddy at home, chemo clothes (some say a 'chemo uniform' of comfortable clothes that make you feel good is handy)

About child care:

• pre-set up play dates with friends you're comfortable with who can take on most or all of the child supervision?
• baby sitter on chemo or immediate post chemo day? or someone who can do the school run in your place on your days?
• inform school (can just be class teacher)?
• queue up DVDs or other distraction for your child for those days you just can't get out of bed?

My DS is signed up for the school shuttle for January so all I'll need to do is a 10-min walk with him to and from the pickup point, but he's a bit older than yours. His school teacher also knows and had been supportive saying not to worry about missed homework, uniform or PE kit wrong, me not attending school events, etc.

chewing, next week is ages, hope you can keep yourself occupied!

Flippy, cookie, minty, royal, everyone, hope you're all doing well

java did you get a form sorted for the exemption card? Sorry I completely forgot to reply

The process seems to vary anyway, but I had to get a form from the pharmacy and then my GP stamped/signed it for me.

That's quite a comprehensive list!

As well as Look Good, Feel Better (which is fab) it's worth looking to see if there are any Haven or Maggie's centres near you, also check local Macmillan listings. There are various groups, classes etc. available that may be of interest. Some places do free complementary therapies.

Hello Halfbaked,

I'm sorry about your news

I'm generally quite (totally) unorganized so you might already have these things ready but I found them great to have ready.

3 or 4 decent to go out in but very comfortable, pleasing outfits from top to toe, (complete with earnings and jewelry if you wear them)
Knickers, Bra, Tights and Dress or Trousers and Top , Jumper, Socks etc I only wear dresses so I cleared a bit of my closet on purpose ( actually a lovely friend did) with the dress hanging and a basket per dress of everything that went with it.

Might seem trivial but on some days when I was very tired it was great to be able to not even have to think about getting an outfit ready and having everything ready and in one place.

A stock of fluffy flannels
Great for a quick whores wash if you feel rotten or even just a warm flannel face wash.

Complete changes of bed sheets sorted by set
No rummaging round the cupboard after a sweaty night!

A stock of new toothbrushes
I usually use hard toothbrushes but chemo gave me very sensitive gums so I got soft cheap ones and quite a few of them, and I just chucked them after a couple of days.

Talking books
Because you're never too old to have a story read to you at bedtime

Comfy knickers and warm socks

I also got myself some of those weird menthol headache strips you stick on your forehead (these always make me think of sanitary towel ads )
Also I liked to have ice in everything I drank so maybe a couple of ice cube trays?

Best of luck.

Thank you WWLKD, pimmsyand javabean

That's really helpful and gives me something to focus on and some retail therapy to do!

Luckily my Ex is being great and will have our DD when Im not up to it. Also a great local support from friends. Although I do find it hard asking for help.

I've told the school so they are aware. I told my DD at the weekend using the book Mummy's Lump, which was really helpful. She knew something was up and heartbreaking as it is to discuss with her I feel that being open about it will be easier >she's so nosey<

I'm having a marker put in today so will check out the services at the cancer centre up at the hospital.

javabean hope you don't need the chemo and chewing you can distract yourself this week.

You guys are great, thanks

Wow! I'm impressed with everyone's organisation skills! I have to say i have none and can end up being quite slovenly at times during the worst points in chemo. But that too is OK, whatever gets you through ;-).

But I would second the Look good course, the Haven, filling the freezer and getting in a cleaner if you can afford it. You'll be spending a lot more time at home than usual. Other than that the only thing I'd say is chemo hits everyone differently. Some people are completely debilitated and yet others (like one of our members boobz) carried on with some pretty hard core training and I think ran a marathon within months of finishing! Most of us fell/fall somewhere in between.

halfbaked good luck with the marker, it's a very similar procedure to having a core biopsy done. My DD was 7 when I was first diagnosed (9 this time round) and i found that honesty was the best policy. She got most upset (heartbroken in fact) over the thought of losing my hair but I let her chose all my scarves and she would pick one out each day for me.

java have they let you out yet? Hope you're recovering well and not too sore. I expect you're still very much rocking the little old lady look being bent double?!

Afternoon everyone - just popping in for a quick update.

Didn't feel too bad on Sunday - managed to get the headache under control with some over the counter codeine and paracetamol (just a couple of tablets each morning seemed to work). Did some cooking, ironing, went for a walk and even cleaned the car (although it wasn't a full blown shiny valet that's for sure).

Worked on Monday (from home) but felt really tired afterwards and didn't sleep too well surprisingly. Have been into the office this morning but finished at lunchtime as felt a bit woozy and tired.

I just feel so bloody uncomfortable with what I assume is indigestion. I finished the Lanzasperole (not sure if that is the correct spelling as I CBA to refer to my list of medication but it's the one for stomach acid) and since then have been suffering somewhat. The local pharmacy are liaising with my GP to get some more but I won't have them until Friday - in the meantime I am taking Gaviscon which alleviates things slightly but has the downside of giving me very bad wind but at the same time I still have trapped wind in areas such as my shoulders etc. I'm currently sat on the sofa with a hot water bottle on my stomach to see if it will help.

Oh yes, and some parts of my skin are really tender to the touch.

And I have a craving for tomato ketchup - bizarre!

Halfbaked sorry to hear of your diagnosis too. I'm normally very organised so my best advice is to make lists as I seem to have so much on my mind that I keep forgetting things. I have various notebooks around the house and I write things down and between me and DH we try and make sure that everything is covered between us.

I also tried to buy in advance everything I might need such as soft toothbrushes, mouth wash, sleep caps etc as I didn't think I would have the patience when feeling crap.

I would also recommend that if you are thinking of having a wig to get it sorted whilst you are still feeling well.

That's all I can think of at the moment.

I love a list... and retail therapy. I've treated myself to new noise cancelling headphones. And many other things recently. Oh well...

Halfbaked I too find it difficult to ask for help, but so far my friends have been fantastic and I know want to and will help me and DS. I don't have any family nearby, so I am relying on them. They are happy to do it - I remind myself that I would do whatever they needed if this was the other way round. I am also getting a cleaner and will use a laundry service, taxis, etc, whatever. School have been brill, and I know will even help with ferrying DS there and back if I'm stuck.

Cookie you can get omeprazole over the counter now - it's a proton pump inhibitor like your prescribed medicine - can the pharmacy not give you that to see you through until you get your prescription? Rubbish that you have to wait until Friday for some relief. I have been taking various kinds of 'prazoles' for several years due to reflux, you can do without that. But all considered, it sounds like you're coping ok with chemo, I really hope you are and that carries on.

leslie and java thank you, I'm doing ok, mostly because this still feels most unreal. Until I go in for surgery, I don't think I'm going to quite get my head around it. I have been pottering about - I'm self employed and mostly work from home - and not doing much out of the ordinary, apart from the crap sleep and the hospital appts. It is a very weird limbo to be in!

Halfbaked, thank you and enjoy the shopping! I heard a pre-packed overnight bag is good to have as well, in case you need to go to hospital for fever, etc.

WWLKD, I got the form from my GP and filled it up, will give back to them today -- can't help feeling there's other things I can do, so will check out MacM and Maggies when I see the consultant next week re: pathology results and treatment plan

minty, they let me go home on Sunday. Pretty sore and the new foob swelling up like a grapefruit but think that's expected! Today I have a shampoo & blow dry booked so looking forward to feeling more human. Surgeon has told me no showers to keep wound sites dry; guess they all differ in approach. And yes to little old (smelly) granny look + walk.

cookie, glad Sunday was good, hope your digestive system calms down eventually. Odd about the ketchup!

Flippy, know what you mean by it all feeling unreal. I didn't need chemo before surgery so was doing everything all normal and working (from home; office work) right up to the day before surgery. After getting op done, it feels like I'm well and truly strapped into the roller coaster of cancer.

Have Harry Potter studios tour next Thursday -- we booked before my diagnosis but now I'm glad I have a goal in terms of building up strength plus something fun to do with DS before any chemo starts.

Main problem at home now is how to stop the cat walking on me when I'm in bed!

Oh yes, pimmsy thanks for all the good tips!

Mysillydog, taking note to discuss nerve block options if I do need another op

chewing, royal, weebarra, all, hope everything going ok waves