Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Afternoon all

Quick visit to say I've got my oncology appointment for the 18th January. Things are moving.

Just chilling and building up my Lego Advent Calendar bits as I've not felt like it since the biopsy on the 9th.

Big wave 👋

Hello all,

Just popping in to say Merry Christmas! Wishing all of you a peaceful, pain/ side effects/ accident free time and hope that we will all have a much healthier 2021...

@44TopOfTheCliff the lymph node clearance took out 22 nodes, 3 of which had cancer. It left me numb from armpit almost to elbow on the underside of my arm. The feeling is coming back, but veeeery slowly (op was June). I'm not sure if it was fluid from the lymph nodes, or post mastectomy (all all whipped off and out at the same time) but I could feel it dripping inside (major eye roll from husband) and ended up being aspirated (after drain had been in for a week) for 3-4 weeks, 2-3 times a week. At the most they took 1L in a week! It didn't hurt, yes the swelling was uncomfortable but neither that, or the aspiration hurt once. They tried syringing it out, but in the end they had to insert a needle (again, no pain) and hold a jug underneath for about 30 minutes. It slowed/found its new way out or absorbed into my body eventually. To date, no lymphodema. I did my exercises religiously and still tend to sit on a night with my arm above my head.

Does that give you enough information, or do you have anything specific you're worried about? Please ask and if I can shed any light, I will.

I just wanted to share the madness. My transplant coordinator called me today to say congratulations and goodbye. Which has left me a little bereft. For the last 20 weeks I've spoken to her nearly daily. She's listened and never judged me or told me I'm being irrational. She's sorted meds out, appointments, and breaks in treatment when I've needed it.

I've been very lucky with my team all the way through. I'm being handed back to my local hospital (also excellent). I should probably start 2021 by working on my attachment to healthcare professionals.

I started writing a post at 6am but steroid brain failed to post.

@MollyButton hope today went well, and you are home on a painkiller haze.
@InOtterNews such amazing news I am so pleased for you. It’s difficult changing medical teams, I know I felt bereft when my favourite gastroenterologist left.

@BitOfFun Sounds rubbish but I am imagining grumpy skeletor when I read it.

@AlbertCampion That is just a bugger all round, I struggle with the poor direction and laissez faire approach from some medical professionals. It definitely makes a hard time even harder.

I have had a good day today, even though I was awake at 3am. I have three days off radio and have turned off my alarm. Christmas is as organised as it needs to be and we have had Chinese and wine tonight. I’ve halved my steroids to breakfast only in the hope that helps the early waking.

I forgot to say, have a happy Christmas you bunch of wonderful women.

@InOtterNews I can understand you feeling bereft. When someone has been such an important person every day for all that time, you are bound to feel a loss. She sounds wonderful.

Wishing all you lovely ladies a happy Christmas xxx

Just popping in to say happy Christmas to everyone, and big congratulations to @InOtterNews, commiserations to @BitOfFun re horrible dental work, good luck to everyone coping with treatment, investigations and general hard times. Sorry I haven't caught up properly for a while but I'm still feeling pretty rubbish after Monday's chemo. I'm hoping to get better in a couple of days - also that we all have some happier times in 2021.

Hope everyone had a good Christmas. I must admit I found it more boring than usual, nothing on telly! Glad Ive got one dog still for company.
Had last chemo on Wednesday for OC, got to wait for consultants appointment to see way forward. No hope of remission, as very large ovarian tumours that are inoperable, so expect it will be a PARP next.
Was sent a copy of last CT scan report as have been trying to google what it means, with not much luck !

Thanks @Icantfindanewname that’s helpful although it sounds like you had quite a stormy time. My drain kept disconnecting so on Christmas Eve the nurse took it out and so far all has been well. No swelling yet
My main problem is I am allergic to lots of dressings and I am covered in a fine itchy rash round the wounds. I think it might be the remaining skin glue as everything else has been removed. I have taken antihistamines and it’s not getting any worse.
Christmas has been very quiet as I am recovering slowly. We had the Zoom chats and a takeaway Christmas Dinner from our local pub but apart from the excitement of my next Herceptin injection there is nothing on the calendar until Results day in January.

@thereisonlyoneofme don’t Google if you help it. It doesn’t often help and can scare you. We can maybe help you here. I’m sorry you had a boring time and I can hear your distress. I hope you and your dog can enjoy some nice walks together.

Best wishes to everybody else. May the treatments be uneventful and the results good.
Top

Happy Christmas from me. I'm home and the surgeon was totally right, pain is not much but tiredness is debilitating. I walked around the garden (not very big) and needed a 2 hour nap.
Surgery itself was fine, but I had to be whipped back in as I had a small tear still bleeding afterwards. But I got home on Christmas day.

Hey all, Merry Christmas. Have my MRI tomorrow morning. Have tried to forget my diagnosis for a couple of days. Watched Eastenders and Jean has found a lump in the same place as mine.

I'm all sorted with my chemo bag with blankets, PJ's and slippers. Just want to move the days on.

@InOtterNews that's really wonderful news - delighted to hear that. :)

Things here pretty much as expected yet also a bit unpredictable. Half-way through the 'bad week' and counting. Just trying to be quiet and reasonably uncomplaining til NY when I should turn the corner (just counting the hours and binging netflix...). Nausea has been a lot worse this time - wasn't expecting that. I usually only take domperidone maybe 3-4 days but I'm taking it all the time now and still feeling sick. Anyone else got worse nausea in later cycles?

Hope everyone's surgeries recover smoothly.

Hope you all had a good a Christmas as you were able.
So sorry that some of you are in pain. And pleased that some have received good news.
Went for my covid test today and received notification that it's negative.
Operation is on Tuesday wish that part was over then I will know what treatment
I'll be having.

Happy Christmas all - glad to hear that some of us managed to have a reasonable day. So sorry for those who have had a pants one.

I feel incredibly lucky to have missed chemo on Christmas Eve but I am already starting to feel nervous about having it on New Year's Eve. The anticipation is worse than the actual chemo for me at this stage.

Had my hair shaved off to a number two last Saturday, and o am now shedding fine hairs absolutely everywhere. I think DH is going to have to have another go with the clippers cos small hairs keep sticking to my face and driving me mad. I also seem to be losing hair on other parts of my body... 😳

Reading this thread has opened my eyes.

I feel silly, tonight 2 days before my op I have read my provisional diagnosis properly.
It says left breast.
Ductal cancer.
Grade 2.
Ostrogen positive.
Progesterone positive.
Her2 negative.

I'm having a wide local excision and sentinel node biopsy. Had the magaseed put in last Monday.

Everyone keeps asking how I feel. I want to scream I'm not ill.
Even now I don't think it's sunk in that I have cancer. Mum has me down as a goner.
Still can't think what questions I need to ask. I have written down the ones advised on here.
I don't even know if I'll be having radiotherapy etc.

Sorry to be a bore. As I'm sure you are all having you own worries.

I didn’t know that much either (same +/- and grade as you) about my treatment, and still don’t. It seems to change with every consultation I have. I think it helps me being sketchy on the details, as I can’t fret and obsess.

@Bitoffun I think I'll live upto my user name. Maybe it is best to just go with the flow.

@25Noidea2114 you should never feel you are silly or a bore, you definitely aren't. You are going through something horrendous which is out of your control. Ask any questions of your breast care nurse, honestly they've heard it all before (quite a few from me!). It may be they can't tell you about radiotherapy until they have the results of your sentinel biopsy.

As for getting your head around it, I'm 8.5 months in and I still haven't dealt with it but when I do the breast care nurses, macmillan, and my work all have counselling available if I need to. My mum had a similar reaction to yours, is she elderly by any chance? My mum is of the generation that cancer means game over and doesn't realise that's not necessarily the case these days. You have a grade 2, but otherwise similar to my diagnosis and there is SO MUCH hope, so many treatment options.

I get the wanting to scream I'm not ill too. I didn't feel ill throughout treatment (inc chemo and radio), just tired. I think that hasn't helped me get my head round it - my brain seems not to compute me feeling OK and having cancer. It will happen one day, for both of us, and there's a lot of lovely people on hear to listen too.

Wishing you luck and a quick recovery for tomorrow.

Sorry, that was for @Noidea2114, no idea where the 25 came from

@Noidea2114 one step at a time. Just get through your surgery for now. Much as I loathe enforced positivity your mum is definitely being a bit pessimistic! Probably her generation saw much poorer outcomes than today's. They will be treating you as curable.

I don't have a definite plan on radiotherapy - I gather that is often a final decision taken after the pathology report form the surgery. I'm expecting it though.

For me - my mental attitude is absolutely pegged to how ill I actually feel. I don't struggle with the diagnosis after 2 months to absorb that, but I really struggle when I actually feel ill (it makes me feel more negative about my diagnosis and just everything really). Today I woke up and feel qualitatively better - I'm not reaching for pills as my first action and I just feel like I can move more normally and freely (instead of just trying to keep still and quiet and endure). It makes all the difference. I need to talk to the nurses again and see if we can tweak my meds some more for the 'bad week'.

I have cancer and although it's more likely I will survive the chance that I won't is not small (although most people around me refuse to acknowledge that). I can deal with that and be fairly stoic about it (shit happens, basically) - but the physicality of the treatment I really struggle with and I cannot always be cheerful about it. My difficulties are actually quite ordinary - I don't like feeling ill and being poked about.

So I have tremendous sympathies with those of you anxious about what may seem to others as the small things - the cannulas etc, the side effects, the surgeries. It's all doable - but I hope it's not compulsory to do it cheerfully.

@InOtterNews Just saw your comment on attachment to your dr. I can totally relate to that - it's such a big sudden shift - is there a counsellor you can check in with?

@icantfindanewname @Acinonyx2 @Bitoffun thank you for your support. I'm glad I have found this thread.
If I can be as brave as everyone on this site I'll smash it.
I feel a bit better today, even though she is off work my nurse Katy has just phoned to reassure me that she will see me tomorrow after my surgery.
DH is waiting on me hand and foot today. I know he's scared I've heard him have a cry when he's in the shower.
I've given him a list of jobs for tomorrow to keep busy.
Take care everyone.

I agree with @icantfindanewme I'm not sure that have ever truly got my head around the enormity of diagnosis. Maybe that is some kind of self protection and allows me to keep putting one foot in front of the other. I was also very lucky with side effects and straight forward recovery from surgery which increased my disbelief that I was ill.
I'm finding the end of treatment difficult, the routine of chemo allows you to keep putting one foot in front of the other and without it I'm floundering a bit.

@Noidea2114 my mum is completely the other way to yours and refuses to think that this night not have a positive outcome. Which is hard because she shuts me down when I want to talk about my fears,sometimes you need to be able to say your scared. Luckily I have a DH who listens and accepts it all.
I hope everyone managed to get though Christmas and those of you that had chemo or surgery are emerging from the fog
.
I paid my professional fees today so hopefully in 2021 I will be able to go back to work.
I'm the meantime I will be tackling the knitting project I was given. Beautiful yarn but I asked for an easy pattern it's not easy! it's a jumper knitted in the round. I'm going to be on YouTube a lot it will be a challenge 😱

@Lizdeflores Most people around me cannot consider a possible negative outcome and indeed it means you cannot address the concerns and fears that anyone in this situation could have.

It sometimes seems that positivity is a bargain we make with those around us - it is the price of their 'support'. Then they can assume the positivity runs all the way through, like a stick of rock, and maybe for some it does. But realistically, it probably doesn't.

And if one person is superly positive, and the next person goes through the same experience and finds the reality very different - where does that leave them? Why can't we just call a spade a spade, no more no less.

Hello all, late check in here to the new thread! Hello to all newbies! Sorry you find yourself here. I've been busy with DD, christmas and end of treatment. Plus trying to switch off from various forums/groups for a while in a vague effort to be normal.

Brief intro: diagnosed at the start of March this year with stage 1 TNBC. Had a lumpectomy first then chemo (4x AC, 1x carbo, 12x paclitaxel) then rads (15 normal and 5 boosters). Rads finished mid November. In the grand scheme of things I had minimal side effects during chemo and rads just made my boob a bit pink at the booster site. Currently enduring the effects of a chemo induced menopause (lovely) ie aching joints. The fatigue is also very real! Hair started growing again while I was on paclitaxel so now sporting a fluffy badger look (my hair was very long and dark brown pre chemo). Eyelashes and eyebrows are better than ever.

Anyway enough of my radiant beauty banter . If anyone needs advice on any part of the treatment shit show then please ask.