Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Hi fudgesmummy - sorry you find yourself here, but welcome. It drives me mad when people say “stay positive!” “Be strong!” (And they are both on the “things to avoid saying” page of the Macmillan website!). I think people just don’t know what to say and try to pretend it’s not happening.

Hope you find some support in real life but there are lots of us here at various stages in treatment, so rant or ask questions as necessary!

Hope the appointment goes ok tomorrow. I find it helpful to write down my questions before I go in because I find it hard to concentrate in appointments (I write down the answers for the same reason!)

Hi everyone, haven't been up to posting here much and apologies for not catching up with the thread, I will over the weekend, finishing rads tomorrow and I won't be sorry, the radiation burns are bloody awful, under my breast is now weeping cracked and bloody sore, but last one tomorrow so hopefully the heeling can begin. I honestly don't think I've ever been so uncomfortable in my life.

Sending my best to everyone and I will catch up soon.

ellennora Sorry to hear that. Have they given you anything to put on it. MY only sore bit was in the under breast fold and it is a bad place to be sore as it rubs all the time. I found aloevera helped but they may have better ideas. I hope it heals quickly for you.

Great that it is your last rads session tomorrow.

Hi everyone, haven't posted for a couple of days as my anxiety has been horrendous and I've fallen to pieces a bit! Picked myself up a bit today and went to the Maggie's relaxation session (which I cried through!). Actually feeling a bit better now - I think the session gave me some time to just think about the fact that I have cancer, and that it's real and is happening to me. So far, I've been going to work, making sure I'm not upset in front of my 6 year old or husband, and generally just trying to carry on as normal and ignore it. Having time to just sit and think about it opened the floodgates, but I do feel quite a bit better.
Got my heart scan on 30th, then back to oncologist on 6th Nov, so likely to start chemo on 7th. Have decided that I'm going to work from home from now on, as everyone at work seems to have a cough or cold, and I've been told to try to avoid getting anything in case it delays treatment. Feel weirdly very sad that today was probably my last day physically at work until after chemo, etc.so won't be back until June(ish) next year.
I was wondering when anyone else stopped going to work? Did you work from home? I'm hoping to be able to wfh as much as possible, but judging by comments on here and from the nurse/doctor, am guessing I might not manage to do much work.

wtf and snows I hope you both see improvements in your skin sensitivity.

butoffun you certainly are prepared. Hopefully this will balance either end of the poo spectrum

fudges sorry to see you here. What an enormous shock for you. The work situation is very tricky as I'm guessing you work from home.
It is a major operation there is a long thread in womens health titled hysterectomy which may give you some useful tips. I've just had everything out for endometrial cancer and am waiting on histology.
People mean to reassure but sometimes say the wrong things. It really doesn't help so maybe point them to the mcmillian page.
Good luck for the appointment tomorrow

bridget, so pleased to hear you and your dp have had the talk together.
When I got my diagnosis the first question dh asked was 'is this life limiting? ' . Me, the consultant and nurse all just looked open mouthed at him. They assured him that there would be treatment for what ever they found. I then had to say I'm a one step at at a time kind of person.. Although I can laugh about it now (maybe he wants me bumped off) it did make me realise the importance of discussion before appointments.
You now have a freedom pass hairdo thanks to your neighbour!

skap hope that good sleep continues to keep you refreshed, with plenty more of it to come.

ellanora good luck with theast rads tomorrow. Boob sounds very painful. 1

zorg I'm not surprised your feeling weepy. You've had so much going on.
I imagine it's hard putting on a front with your 6 year old and that probably adds to the stress you feel.
I think you've made a sensible choice re work. I guess take advice fron your team and see what you can cope with.

I've got a fair amount of back pain still mostly on the haemorrhage site. I'm holding myself awkwardly so now have upper backache!
The best position is just to stand (bum still bruised) upright but I can't do that 24/7.
On the positives, I think I'm getting on top of the thrush I've had and I have a physio appt booked.

Hi @zorgothslugofdoom I'm doing chemo at the moment. I think working from home is a good idea because you can never quite tell what the day will bring, you might be tired or feel funny, it is nice not to have to leave the house!
Do you think you will lose your hair? I warned my children about that and told them I might need them to be a good team, sometimes they might have to miss stuff, do more chores etc So far they have been very good. My 7yo in particular enjoys rubbing my bald head and we have a good laugh. I think children take lots of things in their stride, they just deal one day at a time, which I find useful. I mean, dwelling on what ifs is the WORST, right!
.

Oh I just saw your posts on the cold cap! Good luck with everything. Actually having the chemo didn't turn out as bad as I expecting, it was just managing the after effects and trying to Mum at the same time. Good luck

Just popping in to the Patience Inn to say, Skap glad you are feeling better today; Ellen so sorry about your poor sore skin, it sounds awful.
Zorgoth I hope the anxiety calms down a bit - it's good that you can use the Maggie's centre to let out some emotions, it must be hard trying to keep yourself together with your DC and DP.
catnidge that certainly sounds like an eye-popping question from your DH! Sorry you are having back pain, can you take pain relief?
Sending good wishes to all for a peaceful night or an easy day depending on time zones!

Oh @catnidge, that's made me glad that I went alone to my early appointments! My first question was "Is it still worth me getting new double-glazing?"

Oh emperor it's such a lovely thought your 7 year old giving you a head rub

Bridget taking paracetamol for pain and had an upper back rub with deep heat. Everything now smells of deep heat. I took a sleeping tablet last night and feel as if I've had a better night.

Bitoffun what did they say to your double glazing question!
DH now has his questions pre approved by me. I took one of my adult children to my last appt as they seem better at retaining info

Good morning all Good Night to snow. . Best Wishes to all at appointments today.
Lots of Friday Specials in the Patience Inn. I fancy a bacon sandwich and a black tea this morning.

Morning everyone and welcome to Fudge. I’m very sorry to hear about your diagnosis - ladies like Bridget are definitely the authority on OC so do ask away and I wish you luck for your appointment today.

Sorry to hear you’ve had so many niggling issues and discomfort I hope you are turning a corner and feeling stronger. Also Ellen* your sore skin sounds wretched. Would Bepanthen be any good? I’m thinking that anything that works on nappy rash/broken skin might be nice and healing for you.

We are just back from our few nights away and had a lovely time. Today I’m catching up with a colleague but not much else planned. Next week I have my surgery (lumpectomy) with the pre-op dye injection happening on Weds. Have any of you got pearls of wisdom for what I should wear/expect/take for this? Is it right that I might turn blue?!

Tomorrow we are going to a Halloween party and I have decided to make the most of my current look by painting my face and bald head white and going as a skeleton...should scare small children alright!

Have a good day everyone

Brassica. Loving the sound of your Halloween look🎃

Yes you can expect a blue patch depending exactly where they inject. My patch is still blue since surgery in late March but fading

For me the worst part of surgery by far was the under arm site where they took sentinel nodes. Oh and the dressings can be uncomfortable.

Morning. I'll have beans on toast and tea please. Had a glass of wine last night, the first in ages. It was not a good idea .

@Brassica I had a sentinal lymph node biopsy and wire guided local excision (lumpectomy) in August.
The dye was for SLN biopsy? I am guessing that you had a pin put into the tumour before you started chemotherapy? If not they may insert a wire as well as the dye. They send most people home the same day but I stayed overnight. If you're having the pre-op stuff done the day before I guess you will be early on the list.
The dye injection doesn't hurt and I don't know how long it stays blue but I still have a blue nipple. Wear easy clothes to pull on and a button up top. Take button through pyjamas if you have them but if not some with a soft stretchy top. This is because it's a bit painful to move your arm up after surgery. Not a nightie as your dressings need inspection and it's just easier with pjs. Comfy slippers. A sleep mask is the absolute essential for overnight in hospital because you can't always turn off the lights. I imagine you will go home that night though.
As to bras well I am flat chested so you may be different (when I was breastfeeding I couldn't find a nursing bra with small enough cups). I bought cheap Matalan crop top bra thingys in a larger size than I would normally wear. The best thing about these was that you can step into them and pull them up so you don't need to raise that sore arm. I actually ended up just going bra less for a while but then discovered I needed one for nipple rub.
Afterwards as meercat23 says the armpit is worse than the breast.
Do the exercises from day 1. What no one warned me about was the numbness. The back of my arm down to the elbow was numb, no sensation at all due to surgeon tweaking nerves. The sensation started to return after a few days and that hurt. It hasn't fully returned though. You could stick a pin in my arm in places and I wouldn't feel it.

For the first few nights at home you might want lots of soft pillows to hold you in a comfortable position. I can only just after 9 weeks, sleep on my surgery side.

Hi brassica
As others have said, you will get a blue patch on your boob which lasts ages. My latest surgery was May 1st and the blue patch is very much still there. You will also be peeing blue dye for a day or two, and your skin will take on a bluish grey tint until it's all flushed through....it's a great Halloween look...shame the timing doesn't quite work for you
Are you having node bioosy or clearance? I would imagine clearance has a bit more in the way of potential issues. People here seem to have quite a few difficulties with axilla survery. I've had sentinel lymph nodes sampled 3 times now and my experience has been that it is more sore than a lumpectomy, or even than the mastectomy and simple recons that I've had, but Ive never had any healing issues. Thats been straightforward for me on all 3 occasions. Most of the soreness has been from the cording i got one time out of the 3. That responded well to the post op exercises, so make sure you do them without fail. Oedema can also be an issue but didn't feature much for me., not in my armpit anyway though I recall I did have to have some fluid drained from the breast area after one of my mastectomies, and the mastectomies needed the dreaded drains of course.
I hope it all goes straightforwardly for you.

I'm out and about today, trying yo restore some normality to my life. Sore bits are gradually improving and I ate some proper food last night, though have paid for it with a return of dire rear....think it's gonna be a while before my poor innards recover.

zorgo i hope you're feeling better today. Working from home is a great option. I managed that for 2 months or so when I was on the FEC chemo as felt relatively well on that for half the cycle. I had to admit defeat once on the docetaxel so went off sick at the beginning of August which was 2 months into my chemo.

Hope everyone else is doing ok.

meercat my itchy rash is much improved with a dab of hydrocortisone cream. And no difficulties keeping covered today as it's decidedly autumnal in my neck of the woods.

WTF So glad to hear that. I know what you mean about the autumnal weather but still be wary because as I found out it doesn't need direct sun to cause the itch. Even too much daylight can do it. Although at the moment it is so murky there is not even that much daylight!

I'll bear that in mind meercat thank you. I'm going out for the afternoon tomorrow so may have to find the sunscreen....don't want a rashy face!

Morning all. Unfortunately my neutrophils had plummeted yesterday morning so no chemo. It was a shattering disappointment because when I went up to the ward and checked in at reception, a nurse came to take me through to a bay immediately, so I assumed it was going ahead, and she obviously did too, I was burbling on about it being my last treatment and how pleased I was, and then just as I was arranging all my clobber around the couch (DP was down sorting something out at the oncology clinic reception) another nurse came over to say no go. I did cry, I admit. The nurses were very kind. They contacted my consultant to ask what would happen so we had to wait a while for her to respond, and eventually I was sent away with more Zarzio injections (which boost WBC production) and a new appointment for Tuesday.

So that's not too long to wait - I thought they might delay a whole week - but of course I'll be fretting that the bloody neutrophils will still be low on Tuesday.

On the positive side, we're having a day out tomorrow, and I've finished knitting a hat for myself, here's a pic!
Ellen congratulations on finishing rads, hope your poor skin starts to improve soon.
Zorgoth anxiety is very hard to cope with. Are you sleeping ok?
WTF glad to hear you the cream is helping with your rash.
Brassica that's great you enjoyed your little break! Hope all goes well for you over the next week or so with surgery etc.
Skap is your nose still bleeding? Hope the dizziness and nausea are holding off anyway.
Waving at Piggles, minou and ALemonyPea, and everyone else here. Wishing you all an easy weekend.

Bridget that's a real let down. Worse somehow because it was the last one. With the injections though it should be OK for Tuesday.

I love the colours of your hat.

bridget sorry to hear that you've had to delay treatment- waiting is awful! Hope the injections work and you get to complete your chemo on Tuesday. Do you have any plans of how to celebrate finishing?

I have sleeping tablets to get some sleep - they knock me out for a while! I do an awful lot of worrying in the dark (and a fair bit of mumsnet!).

Take care over the weekend everyone- it is chucking it down here, so we are going to ikea!

Pressed post too soon - my 6 year old thinks a trip to ikea is a fantastic adventure, so it's a cheap, fun activity for him!

Thank you for the welcome 🙂
@Bloodybridget My DH is going to start doing the school runs once I’m home from hospital, they will only be in the house for 30 mins in the morning and jut over 2 hours in the afternoon. He can make their tea while I supervise from bed or the sofa!
I’m hoping I will be well enough to have all our little ones back after 5/6 weeks.
Any further treatment depends on what they find in the biopsy, our business can just about cope with me being off for this time but we would be fucked if I can’t work long term
@Skap I’m lucky to have a DH and a large family. DH and I have done nothing but bicker and argue over the last few weeks, he doesn’t cope very well with stress, and I can’t cope with not being in control ☹️
@Toofaroutallmylife my other bugbear is being told “you are so brave”
No. No I’m not. I’m fucking terrified

Had my appointment with the surgeon yesterday.
I've got to be at the hospital for 7-15 Monday morning. I'm first on the list as it will take 5 + hours and my bed is already booked on the ICU.
She said they think it will be very difficult as they think everything is stuck together with lots of scar tissue from previous surgeries that I’ve had. Everything is coming out, my overies, fallopian tubes, womb, cervix and possibly my appendix and some of my bowel as well.
They are estimating that the cysts weigh about 20lb!! 😳

I’m so sorry to read about all your battles, my very best wishes to you all

Fudgesmummy that sounds like a lot to be facing. All very best wishes for Monday.

About things people say that grate on you. At the moment I am hearing "You must have finished all your treatment by now" as if I have taken too much time over it!

Fudges I'm glad you and DP have decided on how he can carry on working with the school age children once you're out of hospital. I hope you can find a way to cope with the stress, between you. Sounds like the surgery will be very complicated. Have you had the pre-op assessment, if so did they introduce you to a stoma nurse who talked you through the possibilities of coming round with either a temporary or permanent colostomy or ileostomy? If so don't panic - I had a bit of bowel removed with my hysterectomy, but they were able to reattach it immediately. Hope it all works out fine for you.
Zorgoth I will feel really crap for quite some time after chemo, so celebrations will be postponed but we have an overnight trip planned for late November, at this rate I'll be just about able to enjoy eating by then!
Thanks meercat I like the hat too! I made a baby hat with the yarn first, then I thought I'd need another ball to do a hat for myself but I haven't even started it so will have to think of something else to knit. WTF how's your sweater coming along? And who was it who was knitting a bunny?

Bridget...what a pain that your last chemo was delayed...it's so disappointing...was that based in a blood test from a day or two ago? Chances are neutrophils have already started to recover since you had the blood test but I'm sure you'll be fine for next week with the booster meds as well. And it'll be the last one....yay!
Hat looks great! I'm on the 2nd sleeve of my jumper and then finished. I'll post a pic when it's done.
I have to admit I haven't felt very much up to celebrating end if chemo as yet....though today I have been out for tapas and wine with 2 good mates who are celebrating a zero birthday and a house completion...so I added in my end of chemo....2 glasses of wine and most normal I've felt in ages.
I would be due chemo on Monday....but it'll just be herceptin now...woop!!...really hoping I don't get any side effects.

fudges good luck for Monday....that sounds like a lot of surgery but did you say they'd said stage 1? Generally this very good news....so fingers crossed that the surgery does a good job in seeing it all off.

Sending everyone happy weekend vibes