Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

That's really sweet, thank you. DH has pointed out that the nurse would have told me if they'd seen something suspicious on the mammogram, and they would be getting me back in for a biopsy etc.

I hope you're doing okay?

Thanks for the warm welcome. Am feeling a bit tearful today which isn’t me at all. It’s so good to be able to talk with people who actually understand.
One well meaning colleague told me to take all the time off I needed, to enjoy the break and to rest and relax during my time off 😕

@tothelefttotheleft I’m not really sure what type I have. To be honest this time round I’m being very avoidant. Partly because it seemed to take so long for treatment to start and I didn’t want to think too much about it while they dithered and delayed and more and more lumps popped up.
The consultant I first saw this time originally said it’s a recurrence in the mastectomy flap. So from that I assumed it was the same as before even though it feels nothing like before. And that’s all it says re diagnosis 2 on my consultant letters.
However the further biopsies say grade 3 NST, ER positive, PR negative and then grade 2 IDC, ER positive, PR negative. I don’t actually know what most of that means. I should probably ask. All that really mattered at the time was they said the treatment is curative rather than palliative so that’s what I focussed on really. That and trying to stay calm while waiting for an oncology appointment.

Thanks for the comments re going flat and prosthetics etc. no one has said anything to me about that as an option. Should I speak to my bc nurse or is it something you just have to sort for yourself?

gillybean2 it's such a bitter process, but keep focusing on the fact they have told you this treatment is curative. It's curative, not palliative.

I didn't have chemo when I had early BC, but I found it easier to concentrate on just one day at a time when going through RT. Wishing you lots of strength as you go through this, and you will get through this.

@gillybean2

Absolutely the right thing to focus on.

Time seems to slow down while you wait for things sometime. Glad you are here and getting support.

@Arraminta I can reassure you that after my first mammogram years ago I was recalled for further views because my shoulder was in the wrong position and they couldn't see everywhere the wanted to. Once they redid it all was fine. Try not to panic and start planning your funeral! We all understand the agony of waiting. Sending courage x

Thank you so much, I remember chatting with you back when I was first diagnosed. How are you doing nowadays?

The nurse thinks that when my boob was compressed between the plates, some tissue overlapped causing an area to look distorted.

Don't know if it's just coincidence, but there was a trainee helping to position my boob at the mammogram? Also, it felt like my boob wasn't compressed as tightly as it usually is (normally find it actually painful, but it was just uncomfortable this time).

Thanks @Arraminta I am the definition of resilience having been through two courses of treatment with chemo both times for two different breast cancers (triple positive and triple negative). I am now off all treatment except my last year of hormone blockers. I am getting fitter and slimmer slowly, mostly enjoying life as a pensioner and grasping every opportunity for fun. After cancer you never take health and happiness for granted.

Oh well done. You've had some battles but looks like you're winning the war.

Eugh I am so sick of my drain! She is annoying. Cannot get comfy!

Ah pity post, 3rd round of chemo done, 2 more blood transfusions. Not yet 3 weeks post diagnosis and I completely lost it yesterday over something trivial that happened at home.
I know it’s all due to stress and was due to come out at some stage, I’m now neutropenic, the consultant wanted me readmitting but unfortunately there wasn’t a bed suitable and I would have ended up on a receiving ward with lots of infections floating around so it’s deemed safer for me to be home where I can isolate.
Im having spinal chemo this week as well as my normal chemo and then another bone marrow biopsy the following week, I’m sure it’s the thought of the biopsy that’s unsettling Ne as it was so painful last time.
After this induction phase which finishes in a couple of weeks I move onto induction phase 2 which is tougher than this round.
sorry but I can’t really vent anywhere else and everyone keeps saying how well I’m coping. Argghh!!!!!

@hennipenni Flippin eck. Your treatment is very tough. Vent away..sounds like a bag of crap. The only upside is you are not being admitted. My experience of the last few months (not me but witnessing others) is going into hospital as a neutropenic chemo patient.. you don't always get the gold standard care. Sometimes they don't seem to know what to do with you and isolating you seems difficult. Try not to fear what comes next I have never followed the expected path in terms of side effects. Sometimes I was worse than they thought I'd be..Sometimes loads better. Distraction of the mind is the only way I could deal with it as the sofa was the furthest I got.... Vinted shopping. Crime podcasts. Binge tele until I nodded off was how I got through the worst times.
Sending love for brighter times. @ememem84 I had two bottle drains. I felt like feckin ermintrude the cow. I had no seromas though so short term pain was worth the longer gain. Sorry its rubbish x

@hennipenni agree - your treatment sounds crapballs.

im doing ok with the drain. Just keep forgetting she’s there. She’s so annoying. Like a tag along friend no one likes.

@hennipenni vent away. Sounds shit. It’s all shit. But you will get through this. (I hate the phrase “you’ve got this” - yes I fucking have, I know). None of us have a choice but to look forward, but in the meantime, it’s pants. My way of getting through the really shit bits was to watch cruise reviews on you tube. No idea why, escapism probably. I bet that’s not helpful but maybe will make you laugh. I hate the idea of a cruise holiday, was just fascinated with another world other than the four walls I was in!

My lastest rant is I’ve got a cold. It’s about 20% worse than it should be because I’m still not completely recovered from chemo & I think the Phesgo injections are keeping my RBC low - not low low, just on the lower end of acceptable. So I just feel a bit “off” all the time. Because I had a migraine when they gave me tamoxifen, my oncologist refered me for a brain MRI. I had a brain CT when I was diagnosed last year - it was clear - but this has still sent me into scanxiety, even though I don’t have a headache since I stopped taking evil tamoxifen. Grrrr. It never ends.

I’ve just seen an advert on Facebook for a port/picc line etc accessible clothing range - looks good quality. Thought I’d share:

https://portoandbello.com

I’ve looked at these, they are so expensive but look really good, I’ve found a company through a friend who will adapt a couple of my own hoodies for my picc line.

@hennipenni your treatment sounds arduous beyond belief. Well done for hanging in there (realise you have no choice and also a hater of the "you got this/you're tough remarks.)

I went for an infusion of biologics (for Crohn's) last week, only my second one as it took a cancer diagnosis for gastro to decide that some actually effective treatment was necessary after 10 yrs of buggering about on the cheap stuff.

Bizarrely different experience from chemo (only had one EC so far so not a veteran's perspective.) Hard upright chair (no recliner) and a nurse who spent 20 mins trying to flush/draw my picc line all the time announcing it seemed blocked, before realising she'd not taken the stopper off (because "we use different coloured ones from oncology.") Luckily I'd got a facemask, noise cancelling headphones and my flask as everyone else had brought a pal with a cough or cold and all were conversing at full volume.

While being disconnected from the drip another nurse asked me - full volume with ten other people in the bay within earshot, how I feel about having chemotherapy - I told her that as I want to continue living it seemed like a good idea, which surprised her and drew my neighbour's attention.

Then I had to coach the nurse on how to wrap the trailing picc line in gauze and tape it down to stop it tugging - to be fair she seemed thrilled to learn something new.

Back for second wig fitting tomorrow - turns out "mousy with a hint of grey" isn't available so I'm likely to end up looking like Clare Balding. I admire her as a broadcaster - not entirely convinced her coiffure is my aesthetic!

@SuboptimalSitu I am wincing for you. What an uncomfortable experience! There were definite advantages to going through chemo during Covid lockdown as everybody was tested for temperature and cold symptoms before they set foot in the Oncology unit. I was quite happy going by myself too. My DH loathes hospitals while I was a HCP so very relaxed by myself.
The PICC lines baffled almost everybody outside the Oncology ward. Radiology wouldn't use it, nor would orthopaedics. In fact when I broke my ankle (!) I woke up after surgery with the line hanging two foot out of my arm 😰You need a nurse who has her PICC certificate and they are far and few between.
I do hope you get huge benefit from the biologics without too many side effects. Having EC will mask whatever else is happening now which may or may not be a good thing!
As to the hair, my mousy with grey changed as all the grey has fallen out and not grown back so I have finer hair but no grey. With highlights it looks fab now, and I have always been a tomboy so happy to channel my inner CB 😂
Good luck with the next round.

@TopOfTheCliff mine is growing back 100% grey! It’s so unfair! I managed to hang onto 50% of my hair through cold capping so currently look like a badger with old blondish highlights and light grey. My hairdresser said give it 6 months PFC then she’ll dye it. It’s all different lengths so looks ridiculous. Like old lady hair who doesnt want to admit she’s going bald. 😂

I know there’s a moving on thread but I’m not quite there yet. Feel caught in limbo between finishing active treatment but not in the next stage yet of recovery or treatment or whatever comes next. Weird.

@Littlecaf there is no urgency in recovery. It’s all about taking your time and being gentle on yourself. You might find some of the links helpful to read before you take the plunge and join us!
https://www.mumsnet.com/talk/general_health/5270506-the-great-recovery-part-4?reply=142210838

And I’m sure the Badger look is in this year.

Hello all, @hennipenni you share away, it’s particularly rotten that this is all so bloody crap, to say the least. I can understand how you wouldn’t want to be admitted and hope that you can be at home for as much of the time as possible.

Bloomin heck @SuboptimalSitu - your user name really fits the type of care (?!) you received. Doesn’t fill one with confidence.

@ememem84 I hope you’re finding some way to be comfortable. It’s not the best experience eh?

I have what I hope will be my last chemo of 16 this coming Wednesday. Bloods tomorrow 🤞🏼

We are just back from our weekend away (myself, dh and ds2). I hadn’t believed I would be able to go but had permission a few days before from my specialist. It was everything we needed after these months of cancer treatment and the loss of dad. Gives me a lot of hope for the future, however I manage to shape it for myself and the family. It also makes me realise how utterly exhausted I am and still in freefall in dealing with all of this. I’ll look into the moving on thread in the coming weeks.

A week post surgery. How’d that happen?!

been to see bcn today. It’s all healing nicely. Hooray!!!

still uncomfy with the drain but it’s doing the job.

@dancingwhilstfacingthemusic & @TopOfTheCliff thanks for your encouragement.
@hennipenni I hope this week is less arduous than it sounds - you seem to have got the pointy end of the stick in terms of treatment plans.
@ememem84 great to hear that you are healing well, hopefully you will be more comfortable soon.

I'm pleased to report that the brilliant wig lady produced a different model when I went back for a second fitting which, to quote my husband "looks like your hair but better, just a bit lighter." So, unlikely to be mistaken for the excellent Clare Balding. Just need to hang onto my own for a couple of weeks until the wig is ready.

Ten days after returning from winter sun in Lanzarote my mum phoned yesterday to see how I am and was highly miffed I declined a visit (as she snuffled and coughed through the call.) I also told my parents not to drive by my house to talk to me from the garden - they've never understood WFH and the last thing I need is my mother putting on a pantomime for the neighbours (as it's fairly important to me that the next door neighbour, who knows everyone in the entire postcode, doesn't blab to all her pals.) My sister, on the other hand (who can be a right PITA at times) has been a godsend. Families, eh?

Round 3 of EC completely floored me last week, and over a week on I'm still struggling with it. I can't believe how awful I felt - currently I have the most awful stomach upset with cramps enough to make me cry, and I'm so weak it's pitiful. Every day I think I'll feel better, then I get up and don't, it's so depressing. And I'm sick of everyone, however well meaning, asking "are you better today?".

I am better than I was, but not even close to where I thought I would be and the realisation that I still have 3 more is pretty daunting.

Well done with the wig @SuboptimalSitu , they couldn't get what I wanted colourwise either so the one I have is much greyer/lighter than I am, but I like the style so I've gone with it. So far, I'm doing ok hair wise but I keep expecting to find it in clumps on my pillow every morning. @hennipenni What you are going through sounds incredibly tough, vent away as much as you want. @ememem84 how are you doing a week post surgery, hopefully you'll gradually feel more comfortable.

I can't decide whether I'm glad the sun is shining (I am really) or frustrated that I can't get out and do the gardening! Sometimes if you're stuck inside horrible weather makes it easier to bear!!

@frostyfingers really sorry that it’s even tougher than it should be. Could you talk to your team again? Sorry, chemo brain means I can’t recall if they’ve offered a dose reduction or enhanced drugs for side effects.

I’m doing ok! Solo parenting for the next few days as DH is in London. Because my movement is still limited me and the dc have moved in with dparents.

currently in my bed in childhood bedroom. It’s quite nice.

drain is still pissing me off. I keep forgetting I have it and getting it caught on stuff. But hopefully it’ll be out soon.

was chatting to a school mum today about how I haven’t been able to wash my hair etc. she suggested just going to my hairdressers for a wash and blow dry. Apparently I looked at her like she was mental. But I honestly hadn’t thought of that!