Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I was told before starting chemo and cold capping to go shoulder length. Like a longish bob.

@Littlecaf

My oncologist berated me about the cost of my treatment. I thought it was completely inappropriate.

@drivinmecrazy

Paxman who make the cold cap machines have the percentage chances of keeping hair on their website. You'd need to know which chemo drugs you'd be having.

Think this was actually intended for @aodirjjd

@tothelefttotheleft thanks for this. I have almost waist length hair and will have it cut before chemo, possibly even before mastectomy to make things easier. I was wondering about a really short style but shoulder sounds more doable.

odd question, but does the amount / length of hair make cold capping more or less comfortable - as in a cushion of hair whilst there is skme
left?

I’ve just seen this thank you. I don’t know my dosages but I do know the drugs. Unfortunately I couldn’t find all of them them on paxman website list. Maybe I am missing something because im taking epirubicin and cyclophosphamide for 3 cycles then 3 cycles of docetaxel which I think is a common combination?

@tothelefttotheleft thank you! Just found mine - wish I’d known that before - coldcap.com - very useful website. Mines 50% of 50% chance. (Docetaxil & carboplatin). Explains why I’ve lost quite a lot.

In hindsight I also found the cost conversation awkward - but I think he brought it up to show how much the NHS/govt used to place on cost and how that has changed. 🤔

I said it out loud for the first time today that I have cancer.
Was in a CBD shop to get something to help me sleep and the lady asked why I wasn't able to sleep through the night.

So I told her I have breast cancer, awaiting a treatment plan.
She was lovely.

I felt it a watershed moment to say those words out loud to anyone outside my immediate circle.

Strangely it felt quite empowering in the moment.

DH was with me and I could suddenly see the sadness in his eyes.

It is what it is but I fucking hate that I've become someone with cancer.
I feel such a victim.

I just want to go to sleep and wake up as someone else living another life.

It's only been a couple of weeks since I had my first appointment but already I feel overwhelmed.

I've always been in awe of these threads, how much strength and resilience people show.
I feel I'm already failing cos I don't want to do this anymore

@drivinmecrazy that sounds a totally sane and reasonable way to feel. None of us want to be here at all. We all had other plans. Being angry sad or mad is all okay. We have a Virtual Rage room somewhere nearby where you can smash up imaginary crockery. Eventually you will brace up and get on with what needs to be done. Because you want your own life back.
sending hugs x Top

@drivinmecrazy You are not failing. There is no failure in this shit show. It’s just rotten luck that you have cancer.

It took me ages to say ‘I have cancer’. I could say that I’d been diagnosed, that I was being treated, but not that I ‘have cancer’. Not me, oh no! I’m not a victim. I fucking hated it too. Feeling overwhelmed is all part of it, as is wanting another life. I spent quite a lot of time wanting my old one back.

it might not feel like it at the moment, but you will get through what the next months hold for you don’t need to be heroically brave or noble. And with luck, one day you’ll be able to say I had cancer, now there is no evidence of it, and I have had a full response to treatment. Hugs from me too, and to Mr Crazy

@drivinmecrazy It's weird, isn't it. Somehow saying it out loud makes it seem real in a new way. Sending you strength and solidarity! Just FYI, I felt so much better psychologically once treatment had actually begun and something practical was happening - it was much easier than the waiting.

@aodirjjd I'm sorry you've had such confusing communication from your team - that doesn't sound very joined up. Is there any way to give feedback at your hospital? It might help them to realise how confusing it can be from a patient perspective.

With that said - it's also just kind of confusing. There are a lot of different stats and research out there and they don't always agree.

Is anyone else having chemotherapy right now, or starting soon?

I should be starting 12 weeks of Paclitaxel plus Trastuzumab tomorrow. I say should because DD11 has been quite poorly with an unidentified something unpleasant - the GP just put her on antibiotics for possible tonsillitis and we're hoping it helps in time for me to feel comfortable leaving her to have the first chemo session.

I'm quite nervous. I'm anxious about having a bad allergic reaction - two of my friends had awful initial reactions to taxane based chemo. I keep trying to remind myself that statistically it's unlikely. I'm also feeling quite unprepared as my focus has been on poorly DD.

Does anyone have any last minute tips to prep for chemo, or essentials that I should pack?

@londondragonite Hello - yes I’m on my 2nd cycle of Trastuzumab plus Docadexil and carbonation chemo (similar I think) drugs. For me the cycle is once every 21 days x 6. The first one knocked me out for 10 days, then the next 10 days were fine - then back at it. Days 4-7 were a write off - do make sure you have childcare if you need it and someone close by if you need them in an emergency i.e temperature or reaction etc. But once the first cycle is over you should be able to know what days are good and bad.

Hair is currently failing out despite cold cap but I can’t do anything about that. It’s miserable, I’ll be honest, but this too shall pass.

Both of my actual chemo days have overrun in hospital - so do make sure you have someone to look after children if you need them (eg suppose to finish at 5, didn’t leave until 7.30 due to delays with initial chemo delivery). Unexpected side effects have been UTI and pins and needles in hands.

Pack snacks - small things you can nibble on - a book, iPad/phone etc. it’s long and can be boring.

My Trastuzumab is given via a long injection in my leg - wear loose trousers you can roll up. A lady lent me her small hot water bottle for my arm as the chemo hurt my veins.

Im so sorry you are going through this. Sending hugs

@londondragonite Ill be starting a few weeks after my mastectomy so I guess possibly October. I get a mastectomy date soon. Tbh I’m really anxious about the impact of chemo although trying to keep a lid on it. Not unusual I’m sure.

I hope yours goes as well as possible.
I hope your dd is soon better.

@Littlecaf thanks for sharing and with gentleness. Gawd uti s as well what a gift eh? Can you have headphones with cold cap? I like to listen to music so wondering what I could use.

all the best tomorrow @londondragonite a load of compassionate strangers in your phone will be rooting for you.

@londondragonite I have fed back a couple of times but not on a formal basis.
I’ve recieved apologies each time but I don’t really know what good it does. I don’t want to make a fuss and have any formal procedures but I am tired of having to be switched on and constantly advocating for myself when the treatment is stressful enough. I just want to be looked after.

@dancingwhilstfacingthemusic hey - they cold cap has to be on really tightly, even with AirPods I couldn’t get comfortable - it goes over your ears - so it wasn’t successful for me. You can’t hear anything either with it on, so a book is probably best! Do try though. I had a really lovely set of other patients in both my chemo “pods” (section of a ward) so we just chatted, but it depends on how sociable you and they feel. I’ve found that people do want to chat and share, for a moment these people are your people and it’s given me hope and encouragement every time.

No treatment plan yet, hopefully next Tuesday.

I'm trying to get my head around every scenario.

A really stupid question, would it be feasible to drive home after a chemo session?

I have people who would gladly take me and pick me up but feel so uncomfortable putting anyone else out if I don't need to.

TBH that's one of the hardest things, accepting help!!

@drivinmecrazy My husband drove me to my first one, thereafter I mostly drove myself. It was an easy, pleasant drive and I liked the quiet time. However, as I came to the end of 12x Placitaxel guidance changed to not driving after as it apparently has alcohol in it.

Maybe be driven first time or two? See how you react to the treatment, what parking is like etc.

Radiotherapy was a horrible drive away, with highly stressful parking. I was also v tired by then and v pleased to be driven for 50% of my appointments.

Empathise re difficulty in asking for help, you will quickly find who you can truly rely on for support. I will forever grateful to a few v kind friends and neighbours. And family too

I think I’m a bit of an outlier, but I feel so sick on chemo days I wouldn’t be able to drive. The nurses all seem surprised and no amount of anti-sickness meds has helped for the 3 EC chemos I’ve had so far.
Kind of hoping to skip the nausea for docotaxel - although I do wonder if it is partly cold cap related.
i haven’t really had much joy with cold cap either, have less than half my hair left with a massive bald area on my crown. But my son is very attached to the bits of hair I have left so I guess I need to plough on regardless.

Can't thank you enough to you lovely people, even though I don't always respond.
You are my 'safe' version of googling.

I'm so sorry we're all living this life but it's a wonderful resource for information and comfort

@drivinmecrazy agree 100% with you. 💐

For Dancing, Crazy, London and others who are facing the prospect of chemotherapy:

I dreaded it, was very resistant and imagined spending 6 months with my head down the lavatory, vomiting. I really, truly wanted to run away. I was frightened and cranky. My head swirled. I was not brave.

I was very open with the oncology nurses. Cried quite a bit, not generally a crier. Had a couple of panic attacks during treatment.

This time last year I was in the thick of it, mid way through 16 sessions of EC paclitaxel.

And I want you to know that it was not as bad as I feared it would be.

I did loose my hair, I had some (well controlled) nausea, had v little appetite, I was tired, I had aches in my bones, found the steroids ‘interesting’ at times. But it was all doable. I kept walking, gardening, doing yoga, doing a bit of office work. Went way for a night or two during the better times, and you figure out when they will fall quite quickly.

Last session was October 23. Now, my abiding memories of that weird and challenging time are of the extraordinary care I received from the wonderful team at the oncology unit. Kind, expert, professional. And of the love and support from family and friends.

Everyone responds differently, physically and emotionally. @Nomorebear sorry to hear it’s being so grim for you. For me it was shit but doable.

@GrannyGoggles thank you, I needed to hear that.

@londondragonite I hope things have gone as well as possible.

Those who have had chemo, are you able to get away to places like hotels, or go to concerts, or do you need to employ "lockdown rules" in social distancing and staying in self-contained rentals? In terms of office work, is this remote, or with other people? Thanks.

@GrannyGoggles i do find the day itself awful, but aside from that I’m managing to work part-time, get fresh air with the dog, etc. Even get in the odd gym visit. Some days (typically day 5-7) involve a lot of napping! But other than that, I am managing ok. So some days are rough, but more are fine and that is probably better than I thought it would be.
I’m on day 8 today so starting to feel normal again, if a bit tired.
I don’t want to scare anyone, it isn’t very nice at times, but my team have tried me on different meds to try and combat side effects which always helps me think the next round will be better.