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!

Terrified doesn’t come close.

How are you getting on @balkanscot?

My CT scan is on 1st April. Also absolutely petrified as this is the last treatment available on NHS or otherwise (would be prepared to dip into savings to pay to go private but I don’t think there is anything available even then). Feeling weepy all the time knowing I will not see DS grow up. Genuinely cannot look at teenage boys without choking on my own tears. I feel absolutely fine physically but when has that ever been accurate in my case? CT usually shows the opposite.

Still slightly sore in the ribs from the fall a week ago.

Yesterday was my stage IV “anniversary”. That phone call 3 years ago - “we have found something.”

@balkanscotsounds so agonising. Not claiming to know medical stuff but if you feel fine physically, that sounds like the cancer has not yet had a big effect on your system, your organs.... so there must be a bit of time left, I wonder if you could get more information on what actually will happen without treatment and how long the deterioration may take? Or do you already know this, forgive me if you have stated this before. I did a lot of work on trying to accept my imminent death a few years ago, but eventually realised that it wasn't achievable (or even desirable?) To do that when the body is actually functional. With CTs etc we know so much more about what is happening before it is actually symptomatic, don't we, and this is a strange feature of medicine now. Good if it means things can be treated / averted, but also so frightening. I hope this message does not seem jarring to you. I do really feel for you and resonate with that grief of having to leave a child who is not yet grown up or who is maybe young adult but vulnerable (like one of mine). Sending love and strength.

Can you self fund enhertu? I’ve heard good things about it. I think it’s free in Scotland ?

@sellotapechicken I was on Enhertu (yes, approved on NHS Scotland) last year, it worked for 8 months, was taken off it in October 2025 due to progression.

@sellotapechicken yup, waiting is the pits.

I'm going with "I feel fine...therefore I am". God help anyone who tells me I'm overdoing things! I'm fine, til I say "ok, done now". My colleagues who have become friends just do the things they see me side-eyeing now, before I get to them & wear myself out, and, well, the house won't organise itself, will it!

@balkanscot the leaving the girls part - that's what gets to me. Dd2 needs a prom dress. Very soon! I plan by milestones these days - prom ✔️...a levels ✔️...I'll just be sure to get to X life event. It's shit.

Im sorry everyone. Its true all i seem to do is watch telly as im still in hospital. Its unbearable. They cant get on top of the infection evertime they put me on oral I spike. Im on the iv. I have diabetes and i feel like thats making me nauseous i have to eat all this shitty hospital food when im not hungry. I cant start immuno until the infection markers come down. I have a hole that is leaking like mad clearly the source of infection. I have two tumours that have broke through my skin. Ive had such fucking bad luck from the minute i was diagnosed. My head is all over the place. My poor cats must be wondering where I am. I just want to go home.

@EachandEveryone don’t be sorry. You are having a fucking god awful time of things right now. Sometimes I just wonder how the fuck we are expected to keep going, when life seems unbearable. The ads all promote “ living well with cancer”, except some of us are not living well with cancer and we never seem to catch a break!

Do they know why you are spiking temps when put on oral antibiotics, or is it all to do with the tumours?

Are your family supporting you?

Sending you a hug and I hope with all my heart that you get out of hospital to your cats soon. X

Don’t be sorry. We just wanted to know you were ok! Sorry you’re having such a shitty time.

@balkanscot ah sorry I didn’t realise. Have you checked if there are any trials you’re eligible for?

It’s everytime they try to change them to oral.

@livingwith When I was in hospital in January/February and this question was raised (when I was almost certain I wanted to go to the hospice as my mucositis was unbearable) my consultant said a few weeks. It is so fucked up as liver processes everything: toxins, medicine, it has a function in coagulating blood… I mean, everything. When it stops working, I will be well and truly fucked. There are 2 issues with this weekly dose of Epirubicin: treatment not working and the other issue is that Epirubicin causes cardiac toxicity - it basically fucks up your heart. Can’t win..
But you are right, our bodies function pretty well even when things go pear shaped. And yes, I didn’t have any symptoms when I had what was supposed to be, a reassurance CT scan 3 years ago. So goodness knows how long I would be merrily going on my way completely oblivious that my liver has been invaded by the fucker. Apologies for swearing a lot, I just can’t find any better words.

@sellotapechicken My oncologist is totally on the ball with any possible clinical trials, she is the lead on so many of them and I will certainly ask her tomorrow what are the chances of hopping onto one.

@Enigma54 I hate it when that Cancer Research advert comes on TV, all full of people getting great news, “together we’ll beat cancer” stuff, I want to scream and smash the TV up.

@EachandEveryone This may be a really stupid question but are these tumours that are pushing through the skin operable in any way, just enough so that they are not breaking out and causing all these issues for you?

No I would bleed too much. I’ve seen the medical consultant. He said it’s bigger I doesn’t say significantly just that there is progression he wants me to have a head scan in case that’s what’s causing the temperature.

Stable scan result. Thank fuck! Chemo can’t go ahead tomorrow as neutrophils have tanked a bit; hoping next week they will be better and chemo goes ahead. My last chance saloon as they say! There’s nothing like watching your life dangle by a thread, whilst you try to clutch what you can!

How are you getting on @EachandEveryone? When will you have the head scan? Really hoping these spiking temperatures calm down soon.

@balkanscot hoping with all my might that the epirubicin works for you. How many cycles have you had now? Let’s hope your next scan result shows it’s working and kicks the fucker into touch.

@livingwith I agree. When the body is functional, it makes it all the harder to accept the bad stuff and to even think about death and dying. This is why I struggle so much with having to live a relatively “ normal “ life with all this shit
( apologies!) going on in the background. The expectation really annoys me. But then, what is the alternative? 🤷‍♀️

Glad to hear about the scan @Enigma54. A breathing space for a little while let's hope.

@Enigma54 So pleased for you! 💪 Being stable is my holy grail. I have only ever been stable once, usually my results are either shit or “impressive” reductions. I think I am going to have to take Lorazepam when getting my results in April.

@Enigma54 Really happy for you, good news at last.

I'm away for work for a few days and have come down to reality with a bump. The travel has really taken it out of me. I can barely walk without pain and I get so breathless I have to stop all the time. Today I couldn't walk from one side of the office to the other without resting.

I've been reading up on symptoms of kidney problems and it all fits. Breathlessness, fatigue, chronic muscle aches, not peeing as much. It seems to be reversible with a break from medication thank fuck. I'm going to have to really rest up when I get home tomorrow. I intend to drink shed loads of water and try and clear my system of toxins while I'm on this medication break.

@SewingBees Those symptoms sound unpleasant. I think sometimes as long as the meds are working, we can forget the other underlying issues they can cause. Definitely rest up when you get home and give yourself a bit of quality “ribociclib free” self care.

@Enigma54 thank you, it has all crept up on me gradually and I've only just realised how bad things have got.

Are any of you on the palliarive pathway? What does it look like? I have a meeting tomorrow. I either stay in hospital forever on antibiotics or go home on minimum antibiotics and no cancer treatment. Try to come off them and have immunotherapy if i dont spike. Incant beleive how something the size of a peactwo years ago could cause this heart break

@EachandEveryonewonder if you would be able to have IV antibiotics at home with nurse or hospice support?

My treatment is classed as 'palliative' as stage 4 is not curable, as I understand it. But also I think there is an 'end of life ' type pathway which is maybe hospice managed (even if you're at home) where no cancer treatment is given, just whatever is needed for comfort and pain relief etc. Do you have anyone to talk to @EachandEveryoneat your local hospice?

Think I'm heading for a blood transfusion this weekend. Blood test tomorrow morning to confirm low hemoglobin.

Never had this before, any tips? I'm packing a bag in case I'm kept in.

Charger, nice fluffy blanket, long phone cable, drinks
maybe some nice
snacks? An ipad or tablet with a program downloaded if the wifi is shit. Or a book

I echo everything @sellotapechicken has suggested. I’ve had one blood transfusion and all of those items came in useful.

Earplugs/ eye mask ( if you are kept in)
Handwipes/ cooling spray
Comfy shoes/ slippers

Good luck 🤞 x