Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

Hi @sellotapechickenthanks for this, as fellow melanoma sufferer I feel for you. Good that the immuno is helping so far, but scary to have another kind of cancer as well, sorry about that. I am still in treatment every 4 weeks. It seems it can continue as long as it is effective. I have been told that if it progresses again, they can try the ipi/nivo combo again. I had that at the start and it reduced my tumours quite a bit. My tumours appeared in lower spine (reduced by radiotherapy), lung and liver.

The outcome of yesterday’s meeting: medical retirement! Wow, just as I think this bastard cancer can’t take much more from me. Un fucking believable. The anger and bitterness is immense!!! 🤬🤬🤬🤬🤬

will you get a good pay out? Do you get pip?

I have no idea if this nivo is working as I’m incredibly tired I can sleep anywhere any time. Does anyone else get that.

i am still leaking from my wound and now it’s popping out over granulated. I’m terrified the tumour will come through it.

Hardly a decent payout, but a few £££ I wouldn’t be getting, if I just resigned. It seems a bit of a long process, but the wheels have been set in motion now. Yes I claim pip.

When is your next scan to see if immunotherapy is working?

I’m having treatment every three weeks so after the next one I’m guessing

Went to my mums care home today, for a tea party as its her 90th birthday. She has Alzheimers, fairly advanced but can have a limited conversation. I've been thinking about some posts I saw either here or on the main cancer thread, where people mention how bitter and envious they are of old people. I feel very similar. A few years ago shortly after her diagnosis my mum said she hated having Alzheimers and would rather have cancer instead (she'd forgotten I had cancer). Nowadays I'm fine with whatever she says as she has no control, but my older sister was with us today and made some 'jokey' suggestions about us all seeing each other on our 90th birthdays.... I was thinking to myself, can't you remember about my cancer, I'll be lucky if I see 65 (62 now). I would love more sensitivity on her part. And my mum is saying 'oh, it's terrible being 90, it's so old', while I am gritting my teeth thinking how it's a privilege to grow old. Just rambling here maybe but it was quite an exhausting afternoon, I think partly because of my feelings about my own shortened lifespan.

I agree @livingwith I haven’t even told my parents (late seventies/early eighties) I think I only will if it becomes very noticeable and they aren’t going anywhere ! They know I have breast cancer and lymphangitis but I haven’t told them that lymphangitis is secondary and aggressive. I’m still hoping to get to 60 (50 now) but dr Google only gives me 30% chance of living 5 years so we shall see.

i hope you had a decent party with your mum at least. Your sister may be trying to block your cancer. I get that. It’s hard for you but I guess it’s her way of coping.

I’m sorry about your medical retirement @Enigma54thats really lousy. I know you’ve already done all this but can MacMillan or your union help fight your corner?

I hope the spinal block is working @SewingBees

I’m waiting for district nurse to come. Have hardly been able to stay awake for several days now and am really dizzy & wheezy so am worried my oxygen levels are plummeting. Plus anxiety is through the roof as have scan results tomorrow. Husband said “I was over thinking things”. I didn’t punch him.

@Sausagesforever presumably only because you didn't have the energy?

@Sausagesforever has the district nurse been? How are you feeling today?
Scan anxiety is real! Is this where you get to find what treatment they are going to put you on?

@livingwith growing old is certainly a privilege in my book. The very thing so many people take for granted. Whenever I think of my own shortened lifespan, I become enraged, bitter and irrational; can’t help It though! Maybe that is your sisters way of coping? It’s rather insensitive though.

@Ventressstay away from Dr Google if you can, the stats are largely out of date and will send you into a spiral.

I’ve been off work a year and have come to the end of the absence management procedure. It was either be dismissed on medical grounds, IHR or “ stay on the books” for death in service. I guess ill health retirement is the best option. If I just had the metastic BC, I would be in a totally different place. I would still be working and living my life. Since leiomysarcoma re appeared, life has taken a huge nose dive! Very scary.

I been back in hospital for since Tuesday long story short ca has become a lot more fast growing. And main issue is it is closing round my bowel so I'm unable to drain bile so have permanent Ng doing the job ( vile).
Hopefully home tomorrow with enhanced care pip etc you know your dying when that happens. So I have decided to bow out of the thread( and FB) gracefully Thanks for the virtual companionship and god luck with your own versions of hell xx

@Walkingnotrunning1 I wish you peace and comfort during this time and will keep you and your family, firmly in my thought’s. It’s all so unfair x

😂
apparently I have a virus - probably from all that over thinking.
Told DD that she needed to liaise with DH about being picked up today - they both texted and called me multiple times about their plans - WTF are they going to do when I’m gone? I pointed out to both of them that they could just call each other.

I will be thinking of you @Walkingnotrunning1and wishing you peaceful and pain free days ahead. Sending peaceful thoughts from an internet random xx

i know you are correct @Enigma54i did spiral . I think I’m back from it but still not ready for counselling. As you have all said, it’s difficult not to be bitter. My primary bc seemed to not stick around long enough to be found - it just ran off to my lungs and bones without bothering to stop. I’m a bit pissed off about that.

i am sorry to hear about your leiomysarcoma @Enigma54I can fully understand why returning to work isn’t an option.

You made me laugh as I have the same here @SausagesforeverWhy can’t my DS just talk to DH? No idea. I hope you are storing up that punch for when you are feeling better!

@Ventress you have every right to be pissed off, it’s an absolute headache all round. One day at a time ( well that’s life this end anyway!) My boy is 18 in March; the next milestone to focus on.

@Walkingnotrunning1 i wish you a peace & pain free transition & hope your coming days are full of love x

I went to oncology clinic this morning and I asked whether there is a lymphangitis specialist in the country (I’ve got private health insurance so it covers specialist treatment) only to be told that there isn’t anyone. Basically nobody expected me to come out of hospital on my feet and breathing! At the time I was admitted in early September I was categorised as the most ill person in the hospital and at the top of everyone’s lists (I’m not sure if this is something to be proud of!) Anyway, I’ve been told that I should just prioritise my life and my comfort (this was around the steroid use) because any significant flair up of the lymphangitis could be the end. The only known treatment is chemo and steroids.

I’m a bit in shock now. I guess I have to just carpe diem and “one day at a time” 😊

We still haven’t done anything for DS’s 18th which was in November @Enigma54. I wasn’t very well and I was moving my parents closer to my sister which took all my available headspace. We should organise something for DS now I’m feeling more myself. Do you have plans for your son’s birthday?

@Walkingnotrunning1 I'm so sorry to read your update. You've been on this thread from near the start, albeit under a different username.

I wish you peace xx

@Walkingnotrunning1 wishing you peaceful days ahead x

I am stressed to fuck.

I'll be out of meds by the weekend. I've been chasing and chasing for almost 4 weeks. Some knob has booked me a phone apt "at some point tomorrow morning". I'm at fucking work. We have mock fucking ofsted. No fucker answers their phone. No fucker rings back. Pals will take 5 fucking days to respond. Bcn is worse than useless. Appointments have noted my unavailability but can't help elsewhere. Chemo suite manager has tried her best but no fucking help really.

So I'll just slink away & fucking die because no-one's listening to what I'm saying about having no meds by the weekend.

Fucking knobs.

& did I mention mock ofsted? Brilliant.

I've tried ringing school to inconveniently ask for the day off to grumpily ring everyone...all gone fucking home.

Ffs.

Knobs all round.

Pass the 🍷

I'd like to come and join the party please?!
I had breast cancer diagnosed just over 2 years ago, followed by a lumpectomy, chemo and radiotherapy. In January last year I did a poo stick which came back with a positve primary rectal cancer. I saw the rectal surgeon, who wanted to operate, but she noticed a node, that had been marked, but not reported on, on the planning scan from my previous breast cancer. She felt i needed this checked on, before she carried out surgery, so 2 oncologists later and the whole of last summer, it was confirmed i had a lung cancer that had spread to a lymph node. August I had chemo and radiotherapy on the lungs, but just before christmas had a PET scan that discovered quite a few bony secondaries.
I'm 65, and still relatively well, and have just started a 3rd course of Chemotherapy, but trying to get my head around the future.
thanks for reading... CBA with proof reading as I've got Peripheral Neuropathy from the first Chemo!
xx

Hi @stokeymum39 🤚. Sorry to see you're also along for this shit show of a ride!

welcome new folks to the party no-one wants an invite to.
had scan results yesterday. Wasn’t as terrible as it could have been. Starting chemo asap. Then they’ll try & target some of the larger tumours individually. He said that it hasn’t grown as much as he’d expected and that the one tumour I had treated as it was blocking an airway had pretty much been obliterated.
so we’re taking the small wins & saddling up for chemo which terrifies me,

@Sausagesforevergood luck with the chemo 🤞 Here’s hoping it obliterates the rest of the tumours. Definitely take the small wins where you can!

More stress this end, had to call the hospital hotline as having trouble weeing ( caused by the sarcoma) Bottom line is I have to go to a&e if I can’t wee and get a bladder scan/ catheter put in to drain. Sitting in a&e with a full bladder and not being able to go, seems hellish! Kidney function so far is good, but for how long I ask myself! Not happy. ☹️

I can still wee! Thank fuck for that! 😌
What a head fuck of a “ journey” 🙈🙈