CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Leslie I hate hospital beds too - although my absolute nemesis are the tall, straight-backed chairs next to them. I find them murderously uncomfortable, and I also dislike the inflatable mattress toppers and seat cushions. I know they’re to prevent pressure sores but it’s impossible to find a comfy position Hope you’re home.

And Flying - thank you for your radiotherapy tips! That doesn’t sound as bad as I was imagining. I’ve been essentially told to expect sore skin and fatigue, and possibly diarrhoea (depends on the exact positioning of the beam - if it has to be near my bowel then 💩 💩 💩. Fun times).

Still don’t know if it’s going ahead yet - although I’m forcing myself to assume that it will. Don’t want to get my hopes up and be disappointed.

Sorry for the multiple posts - this thread is so busy!

Just got out of hospital and treatment begins 30th November. 5 weeks of chemo, once a week, 25 lots of radiation, 5 days a week. Then internal radiation which will likely cause issues with my bowels oh the glamour of it all

Leslie I hope you are feeling a little bit better today and have managed to get home.

purple I don't know anything about chemo or radiation but that sounds gruelling. Sending you good wishes

Miri fingers crossed for the scan

purple you're definitely being thrown in at the deep end. Keep in your head the fact that it is 'only' 5 weeks though. You can do this. Let everyone else do Christmas. Your job is to sit and rest.

Nicky they've given me a 2 week 'holiday' to establish whether it's a taxol and carbo hangover or is being made worse by the Bevacizumab. Keep everything crossed that it's the hangover, otherwise I'll have to come off the trial and off the Bev, which is not good news.

Leslie get your arse out of that hospital! We want you here

Purple, did they give you printed info about the possible side-effects of chemo? I remember being so daunted when I read mine. The side-effects they list are all real but most people get just some of them. For example, I was lucky and never had any nausea but I was very achy and tired. I noticed you mentioned losing nails, and that was one that frightened me. I followed the advice and made sure my nails were trimmed very short and kept 19 out of 20. One of my big toe nails lifted up a bit and two years later it was wiggly like a five-year-old's baby tooth. It finally came away but there was a fully-formed half-nail underneath, so not too traumatic. As for radiotherapy, it was quite draining having to turn up at the hospital every day for weeks on end but again, I was lucky, I didn't have any side effects worth mentioning. Once you get started, it's a bit rotten but definitely doable.

TwitterQueen, fingers very firmly crossed! And message to Leslie seconded!

Thanks Twitter, I’m a bit gutted that this is happening all over Xmas at it’s my favourite time of year and I love having everyone round and making a fuss of them. I even like making the Xmas dinner! I’m hoping I won’t lose my tastebuds too much

It’s been information overload today Patara although the information on side effects mainly focuses on the change of bowel habits and sore skin. She asked if I’d want a cold cap to try and save my hair but I think I’d rather go bald and get some cool hats/headscarves than sit with a freezing cap on my head for 8 hours. Hopefully it’ll grow back in better condition than it is now. 20 years of dying/straightening it has done it no favours. And on the plus side I won’t have to shave my legs. Every cloud and all that shit

purple for me, the effect took a long while to kick in so even though I was weekly too, if anything it delayed the side effect. eg I started chemo on 19th april but it wasn't until I was in hospital at the beginning of July that I totally lost all hair - eg eyelashes. So tbh I doubt you will lose your hair or tastebuds by Christmas.

Hair - meh. I do appreciate that some people find it very traumatic and you have all my sympathy and understanding and love. For me however, being an old git of 58 I couldn't give a toss. It's a badge of courage and honour. It's flippin' chilly round the neck. It makes life SO much easier in the shower and after. I've save ££££ on shampoo and conditioner. It grew back very quickly.

Seriously peeps, I wouldn't bother with the cold cap stuff. Either get a wig or wear bald loud and proud. Also, to have no underarm or leg or ladybits hair is fab...

Twitter Queen - really hope it's a Carbo/Taxol hangover and you can get back on the Avastin asap.

Sounds like you're getting the full monty Purple - agree about Xmas but if it's any consolation, my appetite and tastebuds have always been normal on chemo (but I am a bit of an oink, to be fair). On the every cloud front, I hope you enjoy your extra-smoothness and the fact that showers only take 1 minute.
Thinking of you Leslie - hope those sounds continue to rumble and you're close to coming home to a nice comfy bed. I looked up Black Books last night with the 'heat be gone' boots and it made me laugh - thank you x

I so wish I wasn't posting here! Last year, under another name I was here, having had a diagnosis of breast cancer, followed by a wide local excision, 3 weeks old radiotherapy and letrozole for the next forever.
This September I had a normal mammogram and really felt to back on track. But the past fortnight I've had swelling under my left armpit, but yesterday evening as I was getting ready for bed I realised my left breast looked reddish purple all over and is mottled.
I'm now going to the assessment unit tomorrow to be investigated for inflammatory breast cancer.
Please hold my hand tonight, as I can't bear the thought if sharing this with people I know other than my dh. I have 4 young adult children, and navigating last year's horrideness was bad enough as they had all just embarked on Uni, or with my eldest working abroad.
At least being on the open access service means I'll be dealt with faster than fast.

Here's my hand areyouready. Take it with a huge, blood numbing grip. I'm with you. Life is just fucking shit sometimes.

Another hand holding for you

Twitter I've also got my fingers crossed for you

Thank you Twitter, I'm a long term lurker and had been following your story. One of the hardest bits is protecting our young adults isn't it? Especially as they are just going out into the world.

Sorry - that was for you Areyouready

Thank you wombat,

Oh dear areyouready, yours is the sort of post I hate to see and I'm sorry you are facing further appointments and uncertainty. Consider your hand squeezed. I have young adults too, 21&24. It's very difficult to know how much to tell them sometimes.

I'm off to the oncologist in the morning to discuss my vague menopausal state and the recent zoladex injection. I've had a headache for ten days of so now, this can't be a long term option. No hot flushes yet though which I'm amazed about.

leslie how are you doing? I hope you're home and resting

Thank you MrsRhod, I need to read through the thread to see how all you lovely lot are doing, and where you are along your treatment plans.
Maybe I should devise a spreadsheet 😏

Another hand here for you are you ready. Fingers crossed for tomorrow. Good luck for your appointment too mrsrhod.

The one good thing is that I know how the assessement process will work, if it's the same as last year, with mammogram, ultrasound and biopsy, then into see the consultant for an initial overview. So by this time tomorrow I should know what's going on. My lymph nodes ar quite achy tonight and the breast purple. It's quite weird, but i don't feel ill.
Hand holds to everyone here too.

A spreadsheet sounds like a brilliant idea areyouready, I spent half my time trawling back through posts to make sure I’m replying to the correct person 😁

I'm quite convinced Leslie has a spreadsheet

One of my accomplishments this year was to learn how to create a pivot table! I surprised myself with that one 🤓

‘but i don't feel ill‘

I haven’t felt ill at any point. I seem to be getting on OK with the TKI inhibitor, and I’m assuming that my blood tests are all fine (they’d call me in if they weren’t). I don’t know when I’ll get the MRI results - I hope by the end of the week.

Positive thoughts to all those with investigations this week and test results.

Leslie I hope you are home and comfy in your own bed.