Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

I am on anastrozole as my cancer is hormone positive and also low grade which is different to high grade. I think the others will back me up here when I say that we live in quarters now, between check ups!

How is everyone?

I’ve just had chemo this week and feeling pretty rough. 🥴

Hello @Enigma54 Sorry you are feeling rough and Hello everyone
I have stage 4 cancer. Primary was melanoma but had spread to lymph nodes and both lungs. I had immunotherapy for about 18 months which didn't work. I have been accepted on a clinical trial and am now in Charing x hospital (140 miles from home) because the lung biopsy they wanted has caused a lung collapse and I now have a drain. Fingers crossed the biopsy results will prove I have the right type for the trial.

@Enigma54 Sooo pleased for your stable scan results. I had my CT scan last Monday, official results on 29th bloody July - 7-week wait. I am hoping for a phone call beforehand, although I really don’t want to receive it in the middle of our mid-end July holiday. I have been telling DS where I keep family photo albums, things like that. Like, preparing. But I really want to live for another 12 weeks. Please, please… 🙏

I had my Covid booster yesterday, it made me sooo tired. And I couldn’t sleep last night because I was terrified I would develop post-booster fever which would mean phoning the chemo helpline, which would mean what do I do with DS. And so the spiral began.

@SewingBees How are things with you now? Do you have a plan in place to deal with brain mets? Will it be radiation? Cyberknife? Whole brain radiotherapy? Thinking of you.

@balkanscotyes got take the small wins with this bloody sarcoma, mainly due to the fact that there aren’t many! A 7 week wait for scan results? You are joking? That’s just plain cruel ( and torturous!) I hope you get the result sooner and it’s positive for you 🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞

I have been thinking of you @SewingBees and hope a plan is in place for tackling your brain mets. How are you feeling in yourself!

@saveforthathello 😊
I’m sorry you find yourself here and to hear of your diagnosis. 140 miles is certainly a long way from home. Are you in hospital now? I really do hope the biopsy and trial work together for you🤞
Feel free to rant or share as much or as little as you want, on this thread,
we all “ get it”.

Still in hospital lung back to normal today. Drain removed and 2 hour wait until final xray to confirm lung Still stable. Fingers crossed I will be going home today.

@saveforthat I hope you managed to get home from hospital?

Yes thanks. Finally got home at 10.30 last night. So glad to be back in my own bed and have absolutely nothing to do today.

That’s great news 😊 enjoy being back in your own bed! 🛌

I’ve been released from NHS jail too. Feel lousy still though. Waiting for the district nurse to change my dressing and drain the chest drain then I’ll probably sleep.

I’m pretty much bed bound now so my sister is bringing my parents over this weekend. We’ve been treating my parents a bit like mushrooms! It’s too late to do this now though, they have to know the full details 🙁

I seem to spiral downwards every 4 months or so, next spiral may be the one which leaves me incompetent and without use of my brain! Luckily I’ve sorted my will, LPAs, work pension and insurances!

I hope those still in hospital are out soon 💐

Safeforthat - I’m sorry you are here 💐

@Ventress the whole thing is utter shit isn’t it? How do you think your parents will react? How is DS? Has he finished his exams now?

Still wallowing in self pity here. It’s a lovely day but I’m seething with rage about being forced to take early medical retirement. Colleagues have long stopped messaging me ( think they expected me to die months ago!) and I’m a bore now. urrgh.

It really is crap @Enigma54! Not sure about the parents, could go different ways. My main concern was that my mum hadn’t even told dad that I had spiralled and been hospitalised 🙄 my sister was stunned too. He has now been told so that’s something. I am going to be frank when I speak to them. Wish me luck !

I’m sorry you’re having a wallow. Sometimes it’s good for you though. Be selfish and do as suits you. I’ve got a colleague coming on Wednesday. I’ve found her very useful for hr type things so I’m not putting her off. Do you get a decent financial package for early medical retirement? (apologies if I’m being too invasive) I suspect they might try that with me. I will resist as long as possible. Are you public sector? I’m private sector so maybe different.

DS is good thanks for remembering: well he has horrible hay fever and a frankly disgusting room but is happy the exams are over. Prom on Friday…

you aren’t a bore 😊 and you should rant as you wish!

@Ventress I wish you lots of luck with your parents; these conversations are never easy.

No, my financial package will be rubbish sadly. I’m public sector education. I quit teaching many years ago and never returned. The pension will be a small monthly one, in addition to ESA and PIP. It’s weird as since I hit my 50’s and certainly since being dumped in cancer land, I keep going over all my life choices and how I would do things differently.

I’m guessing your DS is around the same age as mine (17/18?) I empathise with the grim room! DS is 18 and currently on a foreign holiday with pals. I took one look at said “ room” and thought “ that can wait”! There’s a thread in AIBU re: a mum who wants to wear matching coloured mum and son clothes for prom photos. It does make an amusing read! Will your DS go to uni in September? Or perhaps a different pathway?

Well done on sorting finances. I’ve a will in place, but no life insurance. DS had some money via a trust fund so that will have to suffice!

Have the district nurses been to change dressings etc?

I’m sorry about the financial package- I must say I thought public sector would be better than private. I have applied for PIP and filled in the work insurance forms. It seems that work cover 13 weeks, plus my holiday time (4 weeks) then the insurance (75%} kicks in. I’m lucky, my salary is decent and the PIP pretty much covers the 25% so we’ll see…

yes, again well remembered! My son is 18 now and has just finished his exams. He plans to go to uni, if he gets the grades of course. You son’s holiday sounds great 😊 my son and his friends couldnt decide what to do and have ended up doing nothing!

Thank you for wishing me luck. I do need it. I’ve never found my parents particularly easy to talk to (my sister is way better at this sort of thing than me!) but they need to know, it’s been 10 months since my diagnosis,

I guess you must have had this conversation? I hope it went okay. I can’t deny that it’s the conversation I’ve dreaded most.

sod finances- you will be okay 😊and your choices were what you wanted and needed at the time. I must say, despite working for my employer for 25 years, I still had no idea about my contract terms!

yep, district nurses have been and changed the dressing and drained off the fluid- looks like lucozade 😀. The drain itself is welcome. I was really having trouble breathing before I had it fitted.

I will read that thread , sounds funny !

@Ventress Hang tough. Your work sounds wonderfully supportive. I hope you spiral up. Your family sounds lovely. Yes do read the mum/son prom. You might giggle a bit when pics start. I have three daughters. They would have left home.

Thanks lovely! It must be nice to have daughters @Sbmpp. Having DS is wonderful of course, but I do think it’d be nice to have a daughter 😊

I read the thread about mum and son prom - very funny 😂

How are you doing?

@Ventress Thanks for your reassuring reply. I have never been known to make good life choices, so I’ve made my bed, now I must lie in it, as they say.

Yes finances will be fine. We are mortgage/ rent free so we will cut out cloth accordingly. DS works and is financially independent ( for now) He opted out of the college/ uni pathway and wanted to earn. He’s happy, so I’m happy.

Having these conversations with parents is tough. Mine are very much “ well nobody knows what will happen/ the experts don’t know it all/ let’s just wait and see “ etc . We live a good distance from each other so many conversations take place via WhatsApp. I imagine they are worried sick and I feel guilty for even having these cancers and being so far away.

I must say @VentressI will never look at lucozade in the same way again! 🤣

ypur life choices don’t sound so bad to me 😊 wonderful that you are mortgage/rent free. Wish I was! I’m pleased for your son. Earning is such a good choice for young people- gives them independence.

ah, I feel the same. My parents are only about 40 minutes drive but I’m not driving at the moment and my parents don’t drive any more so it relies on my sister, who has a full time job. So doI feel guilty, I’ve also left it up to her about what to tell them 🙁 I can imagine I will get the same from my parents about “new treatments”. I feel so guilty for causing so much distress 🙁

sorry 😂 but honestly it looks like lucozade!

Hello all.
7 weeks for a scan result?. Torture. I wait 4 weeks although the onc does mutter about phoning if anything urgent is seen..
Ill health retirement is such a blow in many ways. You lose a job you have worked so hard at. Not by choice but by poor health. Its wrenching.
Wishing everyone the best day. This spinning votex is not great.
I think Im an actual certified bore.

My 3 long standing friends told me they never ask me to coffee, meet them etc because they know I probably cant go. So they have decided just not to ask me. They of course always need my support when a family member is sick. Thing is who actually wants a friend who cant plan much, is shockingly fatigued with no apetite anyway. So thats that. And of course I have my mum to look after who has dementia.
My platelets are up and down like a yoyo due to bone marrow infiltration. I feel ok tho so going with it..

@Middleageddreameresawsss no I get the certificate for being a first class bore! 🤣 My new “ life” in cancer world, well it isn’t suiting me. It’s like I’m on the outside of life, looking in. I swing from trying to cram as much into the day as possible, to not giving two f*s!!

No one asks me to do anything either. I find it a bit sad, as I’m not a bad person. And I can’t get over my brother, who has succeeded in staying away from a GP, let alone a hospital, in 47 years. I mean, how unfair is that? 😩😩😩

@Middleageddreameresawsss. I agree, Ill health retirement is very hard. I’m on sick leave but dread the call saying I need to give my notice.
You are not a bore. I am very boring as I’m bed bound so not getting anywhere’ I had a friend come round to see me this afternoon which was nice 😊 she is very chatty and fillls time excellently 😊 DH is great too of course.

your three friends sound a bit rubbish though @Middleageddreameresawssssomeone who doesn’t have an appetite is fine , I’m not sure why that’s a problem: they have an enormous carbonara and you have a glass of water! I’m sorry to hear about your mum 🤗

You aren’t a bore either @Enigma54you sound really frustrated and in no way a bad person! They aren’t asking you to do things because they are worried about making you poorly.

well wish me luck because DH and DS are making pizza in the garden. DH has bought bases, tomato sauce , mozzarella and basil. Should be okay 😊 although I can’t really eat carbs at the moment because they form into a big bolus that I can’t swallow.

@Ventress oooh I do love a good pizza 🍕 Hope it goes well 😋

Hi all, an update from me. Thanks for all your good wishes and asking after me.

I'm at the end of 2 weeks of radiotherapy on the brain and on day 17 of a palliative care hospital stay. Hopefully going home on Monday.

My symptoms progressed to not being able to eat or drink, severe double vision, utter fatigue. I'm now tube fed but still to see the full effects of the radio so hoping for further improvement. I see my oncologist next week to discuss chemo options.

The last few weeks have been hard. I'll write more and have capacity to ask about others over the next week or so xx