Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@dotty2 i'm going through chemo at the moment, and I have had some days out to nature reserves, and I like going into town to the café that my daughter used to work at, and I have also spent more money on clothes, and perhaps I should've done! I also had a few days away in the UK, I booked it at the last minute having planned to take the time out of work in case I was able to go.

I've just got back from the consultant, they sent me in to see the registrar to begin with, but he couldn't answer my questions. I am having one maybe two more rounds of chemo, but only the carboplatin and not the paclitaxel. This was my choice, based on the research, and my worry that they are now over-treating me. I also had some tentative good news in that the consultant thought he'd signed off my BRCA results and they were negative, but he couldn't find them and he'd let me know next time (as if it's not that important and it's news I could take out leave) so I'm feeling a bit more positive but not out of the woods yet. Maybe I'm edging out of the low odds bin!

@dotty2 i am similar. Always like having something to look forward to. We were due to fly to Mexico, having had it cancelled 3 times during covid and instead I had surgery and lost all the thousands of pounds from the holiday. It was crushing.

I’ve planned small things through chemo for my good weekends, a meal out or a cinema trip. I’ve been planning a once in a lifetime holiday for next year which has kept me busy as I’ve browsed TUI 482920 times in recent months “choosing” different hotels and destinations. I also treated myself to a chemo kitten which cheered me up enormously and added a lot of joy to what has been a dark time.

I agree @dotty2 it’s good to have things to look forward to. Last time round the cancer carousel I bought a bigger boat and refurbished her from my sick bed then sailed her round the UK when I finished treatment. This time I’m not being as ambitious. We have been given a few vouchers for interesting experiences by our DC so I am trying to book them up before they expire. A night in a shepherds hut, a Land-rover driving day, and a gin tasting for starters. Also I have lots of Credit with British Airways for flights cancelled during the pandemic that need inspiration to use. I just wish I was well enough to enjoy them now. I am still poleaxed by the Paclitaxel but hopefully it will improve soon. It’s all a bit dark wet and bleak here at the moment.
Regards to all
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Indeed. Dark wet and bleak sums up both the weather and my mood at the moment! But it's encouraging to hear that some of you have managed nights away and cinema trips etc during chemo. So perhaps I will make some tentative plans. And a chemo kitten sounds lovely. Hope you see some improvement on the pacx pains, @TopOfTheCliff

Oh I didn’t quite get chemo kittens, but did get pre surgery kits who have undoubtedly made this whole shit trip much better.
They are pretty much grown now, but here is one relaxing with my previous life cat!
@Silkierabbit thankyou. ❤️
@mowly77 and thank you, I needed a bit of perspective, wish you didn’t have to be in the position that shows it❤️.
wishing everyone love and light whatever stage of this crappy journey we have been gifted.

I appreciate this is probably impossible to answer, but at what point are the nerve pains following my sentinel lobe biopsy likely to stop? I'm getting lots of nasty pains in my arm and occasionally into my neck. I'm three weeks post op.

@MrsMontyD I had the total axillary node clearance which is more drastic than sentinel node removal but gives similar nerve pains and numbness due to nerve damage. I found I needed a small dose of amitriptyline at night to suppress the pain which has slowly faded over two years. It flares up occasionally and needs paracetamol or a heat pack to settle it. I still take the amitriptyline because it also helps with anxiety and insomnia and I decided now is not the time to wean off it.
Today I am cautiously optimistic that I am pain free after five days of torment. Phew!
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@TopOfTheCliff I'm so thankful I don't need more surgery, this has been bad enough, I can't imagine what further more drastic surgery is like. I'll keep going with paracetamol and heat and hope it fades.

Just seen your message about Bridget @chyra . I'm so very sorry. Comforting to hear she had the opportunity to go home, and was able to have a peaceful death.

I know what you mean @dotty2 . My therapist asked me what I was looking forward to the other week & literally nothing, nada, zilch came to mind. "Going to bed" was my eventual answer. But in fact about midway through IV chemo in the summer I had a few days away in Folkestone, just DD and me. Rented a cheap AirBNB & it was doable and very much a tonic.

My new drugs are kicking my arse, so although I yearn for a big proper holiday, or even a night or two in a posh hotel, I dare not commit just yet ... but I've just booked tickets to go to a lovely looking kiddies theatre production just before Christmas with a friend and her DD.

And in astounding news (for me!) and a huge positive .... I have just been swimming — for the first time in almost a year. I AM SO BLOODY CHUFFED WITH MYSELF. I absolutely could fall asleep at my computer right now however, but I BLOODY DID IT. & I wasn't as unfit as I thought I was. So I am now also looking forward to going swimming again next week if I've got the energy again. Hardcore cardio might be a bit much during chemo @dotty2 but what about a lovely relaxing yoga class? Either online or in person? Yoga with Adrienne on YouTube is my go-to.

@chyra , I am so sorry to hear the news about Bridget. I was on the 2019 thread with her as 'catnidge'.
I remember Bridget with her spreadsheet! She replied to all and was incredibly considerate and kind. She would post about her partner, her partner's children and small things such as watching the birds outside her window.
We had our virtual pub 'The Patience Inn' and enjoyed many a drink, cake and chat there.
I'm pleased she got home to say her goodbyes before moving to the hospice.
Sending love and sympathy to you, her partner and those who loved her.
Bridget will be remembered.

Does anyone have any insight into the implications of the nursing strike? I see my cancer hospital trust and my local hospital trust are both on the strike list (Sky has it on their page). And while I have never attended my local hospital, just knowing it could potentially be really bad in A&E in case of an emergency worries me. I support their right to strike and the strike action, but its a bit tough when you have to deal with ongoing cancer treatment!

Yikes @HerbalRefreshment just seen that list. The Marsden are on it & I have appointment there soon to discuss transfer of care … & yet my current piss poor hospital trust are not on the list. Go figure, as they say.

I don’t have any particular insight, but a friend who is an ED registrar said they will bring in agency nurses to cover. They simply can’t leave the ED and other essential departments, which surely must include oncology, without nursing staff. I’m sure there will be other threads where better informed posters/NHS staff might be able to elaborate.

I also support the right of any profession to strike, & there is no doubt nurses deserve much, much better pay and working conditions but fuck, it does strike fear into the heart of anyone with a serious health condition. I’ve landed in hospital twice via the ED since April (once I never made it out of the ED - 4 days, lovely). It was a horrific experience even with the regular staff.

My cancer centre and hospital are on the list too. I wonder what’ll happen. I totally agree with them taking action, they’ve been seriously mistreated for so long. I just don’t want it to impact on us all. Selfish.

My hospital isn't on the list surprisingly as it's a big city one. Things crap here for other reasons, I got home from chemotherapy last night and my mum called me because she was unwell, she called an ambulance and was taken into A&E, I went round there, I didn't go into hospital with her as I was just starting to feel sick from chemo and knackered because of lack of sleep from the steroids the night before. I called her this morning and they still don't know what's wrong with her so they're admitting her. At the same time I've got some vaginal bleeding, I'm hoping it's just a tear or something but obviously really worried it's a recurrence. I'm going to call the GP to see if I can get an appointment today before calling clinical nurse specialist. Crap.

Hope you get an appointment ASAP @SierraSapphire & that you can get the rest you need after all that. Have ☕️ & 🍰if you can manage it!

I am writing on behalf of my civil partner Bloodybridget.

After her last update she was able to come home from hospital for a short period, before spending her final days in a local hospice. She received such wonderful care there, before dying peacefully on 6.11.22.

She asked me to post here after her death to let her thread friends know, as she had received much support from you all.

Thank you,

P

Thanks Haunted I have an oncologist's appointment on Tuesday. In the meantime I had a good conversation in the pharmacy with the assistant about her vaginal atrophy and ovarian cancer when I went for vaginal moisturiser, made me feel quite normal! Now just about to visit my mum.

Thank you so much for finding it in your day to let us know about Bridget. She was a much loved and appreciated poster on these threads and will be very much missed.

With best wishes to you and all who loved her.

@Bloodybridget hello P. Bridget used to talk about you with such affection. I remember when you broke your ankle at the same time as me and she was remodelling the garden. Such a trying time for you both! I am so sorry you have lost such a wonderful person and send all my best wishes to you.

@mowly77 I think the plan is that the strike will be managed to leave enough staff to cover the ED and urgent treatment and cancer care while cancelling routine work. Surely Agency staff wouldn’t cross a picket line? It would be seen as being a scab or black leg wouldn’t it? Certainly in the seventies strikes that was totally unacceptable. I am all set to go and support my local nurses on the picket line. I am retired now and quite prepared to cause trouble in a good cause. Things are reaching such a pitch in the hospitals that something needs to change to make it possible to retain staff and attract youngsters into health care. We are in big trouble otherwise.

I am relieved to say that after five days of agony my joint pains have settled leaving just a bit of neuropathy. I’m having to psych myself up to do it all over again next week. Yikes.

Sending love to all
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Big condolences , P @Bloodybridget .Very happy to hear she made it home for a few days and died peacefully. Thank you for letting us all know.

I was on strike in a local authority for nine months in the 90s and there were plenty of agency staff who covered.

I know right? (agency workers = SCAB!) @TopOfTheCliff. I did not think to question friend more at the time, but I briefly wondered what sort of agency workers would cross a picket line. Anyway, after all that ... her hospital isn't on the list anyway. Which is surprising as big London one. Your understanding of it makes sense & I always take what you say as gospel given your & your daughter's medical credentials! I'm all for strikes. & people are dying & receiving sub-standard care as it is, so something needs to change. But I do wonder what it means for cancer care & urgent stuff, as surely it will be bound to have some sort of impact.

Good news about your aches & pains. Although psyching yourself up for the next massive dose of toxic poison is awful ennit. When I had FEC the first time around the build up was almost the worst bit. All good thoughts to you, and my fellow cancer-havers.

ah cross-post @SierraSapphire . Well, I guess we will all find out. Such a tough one. I really feel for nurses ... but also for patients. But it must be shite to be in a job where you're not expected to strike, given the moral & ethical reasons. As it means you get taken advantage of.

Perhaps the awful prospect of nurses striking will be enough to bring about a proper negotiation and some changes to avert it. Isn't it time to scrap the nurses tuition fees when they are expected to work on the wards unpaid during their training? I can't see any government wanting to be held liable for at the first nursing strike in the NHS.
It is unnerving to realise our treatment might be delayed by the strike but how many times have we had delays due to lack of staff? That is only going to get worse unless things change.
@mowly77 you are very kind but I would encourage you always to question what you hear. Doctors aren't always right as we know only too well here.