Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

Surgery went well, still on ward but hopefully going home today. Haven’t
Slept at all last night due to other patients and obs.

@MrsPnut glad to hear it went well, hopefully you will sleep when you get back in your own bed.

My surgery is on Monday I had my last appointment with the surgeon yesterday and Covid test on Saturday. Its at the local racecourse so that will be exciting almost like a day out!

Hello everyone, I posted on the last thread when i had just been diagnosed and was all over the place. AnotherFight huge sympathies it such a horrifying time waiting for scan results and a plan. The fear was immense. The GP prescribed all sorts of medications but the only thing that got me through those first three weeks was Insight timer's guided meditations. They are like magic.

Just to reintroduce myself - i am 44 and have stage III oesophageal-junction cancer. The statistics are horrible, so I am ignoring those and they are treating me as curative which I am thankful for.

I have just had my second round of FLOT chemo which has been completely manageable so far and nowhere near as bad as my last pregnancy, which my benchmark for shittiness. My hair has started to fall out now though which has been which far more emotional than i was expecting. I think its the loss of privacy and the effect it may have on my DC's (4&9) that bother me most.

On an practical note, for those that lost hair, did you just decide to shave it all off or see how it goes? I had the cold cap, as they said i would lose it all first round if not. My pubes have almost gone Currently my hair is just piled in a bun on top of my head and i'm not ready to deal with it yet but will need to wash and comb it at some point as it has been over a week.

Big thank you to all on this tread btw, i have found everyone's post really helpful and i have not felt so alone.

@Bloodybridget Hello & thanks for the name check. Sorry I’ve been missing for a while, I’ve been struggling with it all tbh, so put my iPad down and stepped away from online life. The house is very clean & the garden is looking good so it’s not all bad 😊

I missed my 2 final chemo sessions to give me extra Covid recovery time pre-surgery - very nice to leave the side effects behinds, but worried that those ones might have been the ones to make a difference. I realise this is daft & the oncologist knows what he is doing, but... but...

I had my mastectomy 2 weeks ago & all went well. I’m diligently doing my stretches now. I should find out the biopsy results next week which will inform the duration of radiotherapy & then the next 12 months of treatment. The tumours were large & they weren’t sure that they would be able to get all the cancer out, but hopefully the results will be good news & will help me cheer up a bit.

I’m sorry I’ve not caught up on the whole thread, but I hope everyone else is doing ok with the twists & turns of their diagnoses & treatments. Despite me disappearing for a while, this place really is a great place of support through it all.

Hi all. Sorry I haven't been keeping up very well with everyone's developments - my postponed final chemo sent me into a bit of a slump and I have been feeling quite low.

Just had a call from the nurse to say my liver function is still not where it needs to be (although it is getting better) so my final chemo is postponed again. If no better next week then I have an ultrasound on 19th which should give an idea of what's going on.

I am so fed up now. I think I am also suffering anxiety because my father died of liver failure (although his was alcohol-induced) so this is really hitting my emotional weak spot. I am also starting to feel like the chemo will never end.

Anyway, sorry for the moan! Sending lots of love to everyone.

@Bloodybridget glad your 2nd vaccine has been sorted out. I got a slip of paper with the date for my 2nd dose, 5th May, when I turned up for my 1st one.

@MrsPnut hurrah for the surgery gone well. I totally understand not being able to sleep at all due to constant obs and general ward noise. Hope you get to go home today and have a proper rest.

@quinin I decided to shave mine off once it got to the stage where I kept getting a handful of hair every time I tried to brush it. Just took the clippers out and it was all gone! I was upset for maybe 5 mins. afterwards but all in all I took it as well as I could under the circumstances. When I looked in the mirror I saw a complete stranger staring back at me. Cold capping was discouraged at my chemo ward due to COVID (you have to be in the ward a lot longer if you are cold capping and they wanted all the patients in and out straight away).

@AlbertCampion I totally hear you re: anxiety and ending up like a deceased parent. I am petrified of ending like my dad, too, who died of metastatic prostate cancer - I looked after him during his last week and I am haunted by what I saw and experienced, so this image of his last week is embedded in my brain, especially now, when I think what if I end up in the same way, urgh, absolutely petrifying thought).

I am waiting for my routine bone scan (due in May) after all the treatment & surgery have finished, so mentally at the moment I am in no man’s land. I have a habit of interpreting every twinge as a sign of rampant metastasis, it’s unreal! Every day I say to myself I am going to phone my onc. and beg her to bring my scan forward until DH talks some sense into me. And this “old sclerotic injury” that only showed up in the bone scan (not in CT) is festering in my brain. What if, what if....

Oh, and I caved in and Googled (again) this morning.

@AlbertCampion fingers and everything else crossed that your liver has got the memo and that your last chemo goes through.

@MrsPnut glad to hear surgery went well, and I hope you are heading home by now.
@FizzyOrange that's great re ESA!
@merlotbythefire good to hear from you, I can understand you feeling anxious about missing the last two chemo treatments, but honestly I don't think they'd do that if the benefits didn't outweigh the risks.
@KitchenFishCurry wishing you all the best for Monday.
@AlbertCampion so sorry your liver is still not working optimally. How hard for you being reminded of your father's death. Really hope you get some better news soon.
@balkanscot you and I can do the scanxiety together!
@quinin glad to hear you're not finding the chemo too bad atm. Re hair, I didn't cold cap when I had my first rounds in 2019, I knew hair would do and didn't really mind. Got my head shaved as soon as it started falling out. But I don't have DCs to be freaked out - that is hard.

After my vaccination rants yesterday, turns out there's a walk-in session near us Sunday morning so I'm planning to be there when they open!

Big excitement today is that we're having a new (very small) shed build in our (very small) garden. I might post a photo when it's finished!

@Bloodybridget what will you put in your Very Small Shed? I find in this messy house full of bicycles that the more storage I provide the more stuff gets accumulated so I am closing options rather than adding them. It is taking a lot of energy I don’t have to reclaim the house for people not bicycles. DH is a man with an obsession but quite amenable to being tidied up luckily.
I am feeling a lot better this week now the Zolendronic acid pain has gone. I’m sleeping well and not aching all the time. I’m just a bit more tired than usual.
The SafeFit lady is very positive but I shall be very sad when I get to the end of my twelve weeks of classes. That is such a brilliant scheme so if any of you haven’t heard of it go ahead and look it up. It’s Macmillan funded for all cancer patients and invaluable for helping you recover from treatment with a personal coach online. I have lost a stone of lard so far with another one to go.
My second Covid jab is at the end of April but the infection rate down here in the countryside is so low I’m not too worried.
Best wishes to all going through the mill. I look back in disbelief at the awfulness that was chemotherapy and even though I still have 9 Herceptin left I feel so relieved to be emerging from the black hole.
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@TopOfTheCliff it will just be garden tools, plant foods and all that, gloves, trugs, etc. There won't be room for anything else! We have a plastic storage box out there too which holds cushions, umbrella and clothes pegs. Our garden is just a courtyard really, no grass, so we obviously don't need a mower! DP could do with a much larger canvas, she gets frustrated with the lack of space, but she does wonders with it.

Pleased to hear you are having less pain.

I’m home and have dozed all afternoon. It feels wonderful to be home and in my own pj’s and bed.

Hello all, I'm also back in hospital for round 3 of my 5 day inpatient chemo. I've got my own room this time which is a huge relief. I can deal with my own company very easily, but find it really emotionally hard dealing with other people's pain and illness and distress on the ward as it's impossible not to absorb it.

Re the hair loss, my concerns were very similar - loss of privacy eg everyone can see you have cancer, and the effect on my kids who are 7 and 4. My daughter (7) was sad about it for a few days but now mainly finds it funny. My son didn't really show much reaction. I cut mine into a short semi Mohican when it started coming out in handfuls, and loved it - but it only lasted less than a week as I couldn't stand the shedding and it coming away when I touched it. So I buzz cut it, which made me sob for a day bit now I'm totally used to it and have a strong scarf game. I've similarly lost all my body hair but my eyebrows and eye lashes are hanging on in there.

@quinin There's a charity called www.cancerhaircare.co.uk/ who provide support for hair loss. They send out free items which can help with the transition. I was sent a cap which I use in bed to keep my head warm, and also a very sweet hand-made knitted hair loss doll for each of my children - they are reversible so have one bald head and one with hair. My children really liked them and I wonder if your 4 year old might. They are a good prop to talk to them about how it falls out - and then hopefully grows back! My kids have taken to calling me Mumpty Dumpty now I look like an egg but I don't mind as long as we can find a way to laugh about it.

@Bloodybridget scanxiety sisters!

@MrsPnut so happy that you are back home and can rest properly.

@Babamamananarama having your own room is brilliant! I had it for my mastectomy/reconstruction and it was just great! Although it didn’t help gray it was right next to the nurses’ station, so I could hear every discussion/phone call - it was very unnerving.

I just read about Tracey Emin’s cancer all-clear and a quote of hers is now embedded in my head:

“I never realised how much I wanted to live until I thought I was going to die.”

Totally sums me up.

I saw my actual surgeon this morning and got my surgery date - April 22nd. Lumpectomy and total clearance. I declined a bilateral reduction to both breasts even though it's something I think most women in my position would have wanted. I just have such a focus on keeping the surgery to a minimum. Dh clearly thought I was a bit mad - he doesn't get my problem with surgery at all.

@FizzyOrange so we are on a similar count down. Everyone assured me that surgery is a walk in the park compared to chemo. Not sure that's reassuring comparison though.

@AlbertCampion I can well imagine how fed up you must be with your unco-operative liver. Liver function can changes quickly so let's hope it gets sorted out soon. There does seem to be some overkill in chemo though - and I suspect the last 2-3 sessions are there because no-one really knows when to stop.

@quinin I cut me hair in a short pixie quite early on (following a youtube video tutorial) then shaved it all off when I was moulting everywhere. I've been wearing beannie hats for 5 months over winter but suddenly I just don't want to do that all the time and I just ordered my third wig (all different styles and colours)!

Afternoon all, I survived the night and am actually quite mobile and chipper. My left armpit is the most sore place and is quite swollen but I am doing my exercises gently and trying to use that arm a bit too. The buzzing of the drains from my pico dressings are the most annoying things and it was fiddly emptying the drains this morning and measuring them.
I did manage to carry my own coffee up this morning and I have just been having paracetamol for pain relief.
I did ask my GP this morning for a prescription for movicol though because that has ground to a halt with all the morphine.

I ended up after the surgery in the next bay to the other breast cancer patient that had been operated on before me. During the course of our conversations, it turned out she was part of the team that did my colposcopy back in November. She remembered having to go and get the consultant and my diagnosis. We are both at the same stage of BC treatment as well and will probably run into one another again. Small world and all that!

Hope everyone else is ok and that waits for surgery aren’t too onerous.

@Acinonyx2 April 22 is my husband’s birthday - a lucky day! Glad to hear you know when surgery will be happening now.

I had my last chemo on Monday and am feeling as expected for day five, though perhaps not quite as bad as previously. The thought of not having to do it again (🤞) is what’s getting me through. Next step is MRI on the 30th, then surgery.

Have been trying to get a covid appointment for a few days now but the roll out here is very slow. All rather stressful and depressing at the moment! I’m ready for life to go back to normal now, please...

Hair loss:I also went for the shave and found it not as traumatic as expected. Biggest concern was definitely the kids, but they’ve been pretty good about it. That said, I’m hating the way I look now - bald and bloated from the steroids, like a potato, eyelashes and brows mostly gone. I keep reminding myself of some advice I read recently (“You are not the bad thing”) but it’s hard not to see a stranger in the mirror whose been completely absorbed by the C-beast. When I’m feeling a bit better I’ll get back to doing my brows and makeup, which will help...

@Acinonyx2 I'm pleased you have your date, that must be a relief. Yes, we can count down together. I lurch between wishing it were today and also wishing it will never happen, I am so worried and frightened. I had a call from the hospital to book me in for a telephone appointment with a colorectal surgeon next week in case there is involvement with my bowel. It makes me wonder why this appointment was missed before my previous booking date of the 6th?

Glad you have the surgery date @Acinonyx2. I got an appointment for my scan today: 24th April.
@backformore hope you feel better soon.
@FizzyOrange waiting for the surgery is horrible - you will be pleased to have it behind you, I'm sure. I was really lucky in that it was only 11 days from diagnosis to hysterectomy!
@MrsPnut wishing you a good recovery, and cooperative bowels!

@Bloodybridget were you being seen privately? I have had mine hanging over me since I first saw the gynaecologist last October.

@MrsPnut you have my sympathy with your constipation, i get it with the chemo and it is miserable. Have you taken Movicol before? If you haven't, it is revolting so glug it down in one go.

When my hair started to shed in handfuls, DD gave me a really short cut all over which I thought looked quite nice in the circumstances. This fell out over the next couple of weeks and now 3 months later, I still have white wispy bits all over. I still haven't been brave enough to shave it. My eyelashes have completely gone but the innermost parts of my eyebrows, about a centimetre in length, are hanging on. I need to practise with my new eyebrow pencil. @backformore I normally wear a reasonable amount of make-up but without eyelashes I can't seem to get it right.

@FizzyOrange no, I've only ever had NHS treatment. I was very impressed with how fast everything happened after I had the ultrasound that showed the growth, although I think the ultrasound should have happened sooner (but I don't expect it made any difference).

@Bloodybridget gosh 11 days is really fast then! I had to have 3 cycles of chemo before surgery, which then became 4 cycles, so I feel I have been waiting ages.

Hi - room for 1 more? Diagnosed yesterday with hormone -ve, her2 +ve BC. I think! Was so in shock I couldn’t write it down although I have leaflets etc. I only went for a check on Tuesday so things have moved very quickly. I had definite suspicions based on how they were earlier this week though. I know the biopsy of my lymph node was positive too. I am having further scans this week to check if it’s spread. It’s not been to the MDT yet but Chemo starts a week on Tuesday and then a mastectomy in approx 6 months.

I and 51 with lovely DH and 2 gorgeous DD’s 12 and 14. It is them I feel most worried about. We will tell them on Sunday. I feel oddly detached - shock?- although know it’s going to be a tough few months.

I have tried to absorb as much of this thread as possible in the past few days but it’s like learning a new language. It has calmed me though and I find you all truly inspirational.

Hi @JeanLannes sorry you've found yourself here but it is a very supportive group of pretty great people.

I don't have BC, mine is gynae, but I do completely understand your worries (doesn't seem like a strong enough word tbh) about telling your family.
I felt like I exploded a bomb in everyone's lives and I don't honestly think I'll ever get over that. It's pretty overwhelming.

Once you get to MDT and have a plan in place things will get moving quickly and you will feel a little bit more in control.
In the meantime step away from Dr Google- a lot of it is very outdated. Stick to cancer research, NHS and Macmillan sites for info.

Cry if you need to, rant if you need to coz god knows it's fecking unfair, go easy on yourself and we'll all be here to help with the burden if you need.