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!

@balkanscotthank you!! Oh no, I’m sorry you fell,
it really is quite scary as an adult!! Are the dreams a side effect from meds ?

@Enigma54or @lucysmamim not friends with @eachandeveryoneon Facebook but I think maybe you guys might be? Could one of you tag her in th group ? I’m really worried.

@lucysmam how’re you doing ?

I’ve asked @eachandeveryonehow she is, on our FB page and also sent her a little message on messenger. No reply as of yet. Just hoping she’s cracking on with her immunotherapy.

My head is all over the place. CT on Thursday. Saw oncologist yesterday and he basically said that if the damm tumour has grown ( it will have!) then he will stop my treatment ( of which I’ve had 2) and that will be it. Death sentence. I’m terrified. I wish euthanasia was legal in the UK!

@Enigma54yes that sounds so frightening, I feel for you. I am also a supporter of assisted dying and feel gutted and angry that if it ever comes in here, it will be too late for me. I hope you have people around you to support you. That level of fear can be so dominating and overwhelming.

@livingwith the fear is horrendous. How are we meant to get on with
“ normal life” with this hanging round our neck? Nothing makes sense or matters any longer. Just one day at a time now.

My therapist recommended a series called Dying For Sex, which is available on Disney+. It's based on the real blog of a woman with breast cancer and follows her journey from Stage 4 diagnosis to death. The main précis is about her decision to explore her sexuality before she dies, so it's pretty graphic on that score, but it's also a very touching and real depiction of facing death by cancer, both for the patient and their family/friends. The final two episodes are less about sex and more about her cancer becoming untreatable and her death.

I found it a difficult watch, but also very real and relatable. The hospice nurse's reassurance that the body knows how to die, and her talking through the stages, was informative and somehow comforting.

It won't be for everyone, but for me it was helpful.

Hi, please forgive me for jumping in as I’m not a member on this thread, but EachandEveryone has been posting on Telly Addicts recently (this week). She’s a regular there. Just wanted to say something as I can see you’re all concerned about her.

Best wishes everyone 😊

@Enigma54yes, it can seem bizarre and unreal to have to carry on with mundane things when time is so short. We all have our own ways of trying to find peace of mind. For me, I spent a lot of time reflecting on my life, and letting go of my assumption I would live to 80+. Realising that was just a fantasy. And if I died at 58 or whatever, that would turn out to be the natural length of my life, complete in itself without a missing piece off the end of it. I contacted a few people I had always wanted to say thank you to and met up with a couple of them. To tell them how much their help had meant to me, etc. I bought a woodland burial plot. I wrote some things down about how I wanted my death to go, as much as possible. I did some of the death admin paperwork eg will, letter of wishes, advance directive. I started to rationalise my admin such as bank accounts, etc to make things easier. I started writing letters to my kids but found this too painful so opted for making sure I had expressed ny hopes and feelings to them face to face, and still do this regularly. I read many books about death and dying to explore my own beliefs about it all. I attended a lot of grief events, webinars,.retreats. I have been lucky for some years now to remain stable but I also know that a negative scan result will get me back into the fear and I hope that all this work I have done in the meantime will mean it feels a bit different? Don't know.

@livingwith you seem to have taken a a proactive approach to it all; I admire you. This will sound bizarre, but I wish I wasn’t leaving anyone behind, as it makes it all the more painful. Having living parents, a partner and two young adult kids in the mix, hurts beyond belief. But what can I do? I’m not afraid of dying, but how I die. If I was guaranteed a pain free death, I wouldn’t feel so bad. I need to start thinking about this. Sorting funeral out etc, Is very important.

@Enigma54that doesn't sound bizarre at all, my biggest grief is not losing my life but leaving my 3 adult kids without me, especially as the dad of the younger 2 is estranged from us all. And I also worry about my partner, but less so, as when we got together I already had stage 4 and he understood the risks. And he has grown up kids who will help him. And yes, the actual dying process, especially pain. Maybe you could try speaking to your specialist nurse or your hospice (my local one has a helpline) about what actually happens and different ways of approaching it? Get better informed? Such a nightmare I wish we were not all going through it.

That’s actually really kind of you to tell us thank you!

Man I’m so sorry that you need to deal with this. Your experience at that hospital has been absolutely atrocious. I’m really sorry they have been so shite. When do you get your results?

Im really struggling with colitis/ my Crohn’s disease (immunotherapy forces your body to deal with the cancer via the immune system and it can either cause autoimmune issues or make ones you already had worse).

With me it caused thyroid issues, made my crohns insane and gave me Addison’s disease where my body doesn’t make cortisol anymore so I need to take daily prednisone but If I get sick I need to take more and I need to have a sexy card with me at all times that says I might need rescue steroids..

However I know it’s working so it’s not really an issue, it just feels like because my hair is growing back and I’ve not lost a load of weight this time round, people are treating me like I’m absolutely perfect because I choose to share good things on social media.

It’s almost like you don’t want to focus on the shitty bits of cancer.. funny that!! Most of my posts are about my dogs to be fair, but my feed would be so depressing if I chose to share the good, the bad and the ugly!

Im sorry I didn’t see this post. How was your trip? Are you feeling any better?

That’s so good!! How’re you doing now?

Thank you for reaching out to @eachandeveryone

That sounds absolutely amazing, I will have a look 🥰

If you want a really really amazing book about palliative care and hospice experience.

I can whole heartedly recommend ‘with the end in mind’ by Kathryn Mannix. I did my hospice and palliative care placement for 12 months with her and if I ever can’t do surgery any more I will go into palliative care, entirely because of her.

I found the audiobook was far more accessible than the book as you can turn it off and take a break. It really demystifies the dying process (not that anyone is going to die anytime soon)!!

@sellotapechicken I’m from the US so I know things are maybe a bit different 🤷🏻‍♀️but I’ve never had a Ca125. Idk if it’s due to my type of cancer (esophageal) or that it’s not curable or who knows what. Things are ok I guess. PETscan in June. On cyramza and taxol since last June (which is my third treatment regimen since being diagnosed in 9/23). I saw my oncologist today and I should have asked I guess. I see her again in July so will write it down to ask her then. I’m so very grateful to you all and marvel at your strength and support for all. (Also have noticed that people get mris and that’s another thing I’ve never had 🤷🏻‍♀️? I’ll put it on my list 😂.

@SbmppCA125 is a tumour marker in the blood only produced by certain tumours (mostly ovarian I think, that’s what I have and it’s the standard monitoring tool). MRIs are also something that are better in certain types of cancer va others, as are CTs. I’ve only ever had CTs.

I saw my oncologist yesterday. My latest CT hadn't been written up but he doesn't think it is showing anything new or growing.

He's giving me a 3 week break from ribociclib because of the side effects I'm experiencing - breathlessness, extreme fatigue, muscle aches and spasms. If that doesn't change anything then he'll give me an alternative to letrozole to try. He also took some blood yesterday to see how it is at the end of a 3 week meds cycle. Apparently I may have some kidney or liver function issues (one of them, I can't remember now which he said it was).

I'm looking forward to the break from the meds and hopefully an increase in energy for the Easter weekend and week afterwards when I'm off work.

@sellotapechicken I'm ok, thanks for asking! Just on my way for Denosumab injection. Had a CT on Tuesday...loving the wait 🙄 . I've overdone the unpacking/moving things after work & am quite sore though. Good job half term's soon...definitely in need of some down time.

@PrettyLies thanks for letting us know!

I've been in contact with PALS again. My previous complaint about having to chase my meds constantly seems to have been brushed off as "appointment issues". It's so much more than that. It's being railroaded into unsuitable appointments in unsuitable spaces at work because all the rooms that may be free were taken. It's receiving no response from the secretaries when I left a pretty desperate message on their answer machine. It's having to beg every time I'm due for meds, to be given them.

And the latest...a phone call at work today from a chemo suite nurse. Doesn't want to give me takeaway meds because I haven't been reviewed. Excuse me? They've been prescribed & approved so presumably I should be given them!? If she doesn't, it'll also leave me short by 2 weeks before my next appointment. Or I'll have to make an extra trip across town, after work. Which is, of course, fucking fabulous!! Because I'm not knackered from work & sorting the house 🙄🙄🙄

@AGreatUsername Thank you so much. I’ll scratch those off my list!

Echoing what @AGreatUsername said, I had bloods tested for CA125 at the outset, because the GP suspected a gynae cancer. It was somewhat elevated, but that can be due to inflammation. When it turned out to be lymphoma, they haven't tested for it since.

Similarly, I've not had an MRI. I had CT scans at first and now I'm having PET scans, because they show up lymphoma activity the best. Different tests for different cancers.

Please forgive me for interrupting this thread; I'm not qualified to be on it yet. My first line treatment (Pola-R-CHP chemo) didn't work but I'm having CAR-T therapy this coming week with the hope that I will achieve remission.

@Ohjoyohbliss Nope, you have cancer so I think (imho) you’re qualified to go to any cancer related thread that helps. I’m on another cancer support thread even though I’m terminal. I feel answers to prayers and help for the 360 degree turn our lives took comes from any and all places. Hoping you don’t need this site ever.

@Enigma54when do you get your results? @lucysmamthe waiting is the worst bit
@Ohjoyohblissi hope car T goes well

@sellotapechicken results tomorrow if they have been reported in.

@Enigma54 🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞