Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

Sooo I've was discharged on an hb of 89. Can my body keep it up this time, or will I be back in next week for another bag of precious blood?
Watch this space!

@WrenNatsworthy How are you feeling today?

Do the medics have any idea why you keep needing transfusions?

Crap scan results, progression in liver and abdominal lymph nodes. Off nab-paclitaxel, onto Olaparib. Oncologist wanted to prescribe Talazoparib but apparently it is so hot off the press in terms of having been approved by the SMC (Scottish Medicines Consortium) that she cannot prescribe it yet.

Had bloods done so that I could get Olaparib on Friday, no go as my neutrophils are 0.94 and they have to be over 1.0. So next week it is. Not only has the stupid nab~Paclitaxel robbed me of my hair and it has led to progression, it has also meddled with neutrophils to stop me from my next treatment straight away.

Liquid biopsy I had done privately has shown ESR1 mutation. Of course I googled and it seems less responsive to treatment. Fuck.

I hate everything and everyone at the moment, I am SO angry & disappointed that my cancer just cannot fuck off even for a little bit (after the initial reduction).

Oncologist still has lots of options down her sleeve (both NHS, private & clinical trials). But all I could do all weekend is mentally plan my funeral.

On the plus side, there is no spread to bones or lungs. Small mercies.

Took me and my son to Peebles Hydro for the weekend distraction. It somehow worked. Except I am back home now and am feeling suffocated by it all.

I am gutted to read about @Tilllly. Can I join you all in the virtual bar in her honour? With my mocktail, due to my dickhead liver.

Off to read previous few pages, I don’t want to be a dick (like my liver) and not find out what has been happening with you all.

@balkanscot I don't know what to say. Sorry just doesn't cut it. Thinking of you x

@balkanscot that is so shit and I'm so sorry. Rant away. Sending positive vibes for next weeks chemo.

Fuck cancer. It is so fucking shit.

@balkanscot actually you can drink anything in this virtual bar, so I think a whole bottle of Jack and some incoherent shouting is absolutely in order.
What a fucking bunch of arse.

@SewingBees I had a lovely day yesterday, we took the camper to a local deer park, met up with a friend who has just bought her first van, and had a cuppa. I actually walked about a bit. It was great.

The anaemia thing is still a bit of a mystery. My Birmingham Onc (melanoma specialist), is trying to transfer me to a local Onc. GP is now also on the case.
New local onc has great credentials so I want him!
Recent CT scan showed no signs of internal bleeding. Total mystery.

I also have another Birmingham Onc who is in charge of cyberknife (scan in May to see if my brain met has gone).

I am happy today because no signs of anaemia yet.

@balkanscot I'm sorry to read what you are going through.
I don't really know what to say except except I hope things improve for you.

@WrenNatsworthy I'm glad you are feeling better.
Every bit of positivity is a win.

@balkanscot sorry to read your update,its just relentless shit and I hope they find a treatment for you that will give you a break.
I was sad to hear of @Tilllly death I'm sure she knew how loved she was and how missed she will be.
I think I might be having a Crohns flare the GPS are investigating. As miserable as Crohns can be I find myself hoping it is Crohns because it's not cancer!
The best thing about the virtual bar is its all the fun with no hangover or remorse!
I was thinking this morning about the fact that after cancer treatment you sometimes no longer care as much about what you say and how others take it. Will this happen to the Princess of Wales? It would make speeches different. I would like to hear her tell it as it is,
" thanks for coming cancer is SHIT".

Tantrums and tiaras next thread title?👸

That would be an appropriate thread title in memory of Tilllly too! The tiara bit anyway.

All I can think about is my upcoming scan results on Thursday. I'm so desperately hoping it shows the Ribociclib is working. I'm trying to do a critical task for work and my mind is constantly wandering, sometimes positive and I'm imagining myself in Australia in August, sometimes negative and I'm having the rest of my back attacked with rods and screws just to keep me walking. It's mentally exhausting and I'm not very present for anyone at the moment.

I was thinking of @Tilllly what about
Princesses, tiaras and daisy dog👸🌼🐕.

Hi all, am in hospital after a bad weekend, feeling better and being investigated by a million or so medical teams. I hope all of you who are struggling will feel a lot better soon and hugs all round. Have been very sad about @Tilllly .

@SewingBees I just want to wish you positive vibes for your scan results. It sounds like you are going through a lot and I hope you feel better soon.

@LuciaPillson I'm sorry you have found yourself in hospital. I'm glad you are feeling a bit better and hope you get to go home soon.

I saw my Oncologist yesterday.
It was basically just to ask how I'm feeling on the chemotherapy and to check I'm still tolerating it.
My appointment was straight after my chemo so most of the questions I had went straight out of the window as I was feeling a bit shit & just wanted to get home.
I did manage to ask a couple of questions.
I've had this weird lump like feeling at the top right hand side of my abdomen for a couple of months.
It's not really painful but can be very uncomfortable at times and feels quite large. Sometimes I can't feel it at all.
The other day I could actually feel it protruding through my stomach.
I wanted to know if the CT scan had picked it up and he said no so it's probably nothing sinister and more likely to be scar tissue from the surgeries. I'm not convinced but he's booking another scan for 2 months time so if it remains pain free but still bothers me I will ask them to look more specifically at that area.
The other thing I wanted to know was about my chemo.
In my chemo book it says I'm to receive 8 cycles. I've just started my 5th cycle so wondered what would happen after the 8th.
He said they will continue to monitor me and if my cancer remains stable they won't change anything but if it starts growing again they'll have to look at changing the treatment.
For some reason I have it in my head that you can only receive so much chemo then they can't give you anymore. I'll have to ask further questions next time but wondered if any of you know anything about how much chemotherapy someone can have before it's stopped?

I had my party on Saturday that my amazing children organised for me.
It was such a good night and I amazed myself by lasting the night and being on the dance floor for most of the night. I've paid for it since with fatigue and pain but it was worth it.
It's a night that I hope my children and grandchildren can look back on with happy memories.
Wishing you all a good day and hope those of you not doing so good right now feel better and get some improvement soon x

@GoldenDog1 i just googled, and Doxirubicin (I think it’s Doxon) is the one with a lifetime limit - because it can cause heart failure.
With other chemos it probably depends how your body is holding up to the treatment- maybe especially white cells

I had six chemo (and surgery) originally- the registrar said they stop at six to give your body a rest and a chance to recover.

I feel so much of what we do now is making memories for others. I do hate that phrase, but I know these are the things that will be precious in times to come. I find it bittersweet. Other people won’t realise till they are also in this position.

Hope you’re all coping (more or less) with cancer crappy land. I am just back from the Camino, I really enjoyed it - but glad to be home.

I am glad we heard about Tillly, and I’m so glad it was peaceful.
xx

@LuciaPillson - some kind of hernia? That could come and go, but sounds a bit weird. The GP might be more help.
I do have a femoral hernia (top of hip area) that doesn’t show on CT.

Thank you. I get a bit scared to Google things sometimes.
Hopefully the chemo continues to keep things stable for as long as possible.

You are right about the "making memories" for others.
That's exactly what I'm doing now.
People on Saturday were telling me to enjoy my night as it was all about me.
It wasn't all about me though.
I would never have had a party as I don't like being centre of attention.
For me it was definitely about giving my family some happy memories to cherish despite this shit show that's happening to us.
I did however bloody enjoy every moment of it and was touched by the people that came to celebrate with me and my family x

Echoing others thoughts here. Even when things are going reasonably well it feels bittersweet. I'm still reeling from how quickly Tilllly went downhill and it's really tough knowing that's going to happen to us all in time

I'd like it if Mowly were mentioned in the new thread title too.

I got upset with my BF yesterday and nobody I've talked to about it understands my outrage. Two of the hospice nurses came to visit yesterday. Talking about pain relief etc, sorting out my next blood test.

My friend's husband had a prostate cancer scare about 5 years ago. He's had no treatment and at some point he had a scan and the cells weren't there any more.

My friend announced to the nurses 'My husband's got cancer', and they were, as you'd expect, sympathetic.

I got furious. My friend's husband can work, move, drive, live a normal life, never even had one actual tumour.
I've got it fucking everywhere. It's not a competition that I want to win but you know, there it is.

I honestly don't know why on earth she said it, Am I being a biatch for being cross?

If I was in his position I would be putting that well behind me and skipping down the bloody road.

@WrenNatsworthy It's pretty poor of your friend to try to divert the nurses attention to her in that situation - very selfish and unwarranted. Did you talk to her about it? Does she understand your position?

My mum used to do similar - attention seeking behaviour trying to make everything about her. Now she uses my cancer for the same purpose. It's deeply frustrating.

I told her I was shocked that they still considered him to 'have cancer', present tense.

She suffers with health anxiety anyway, perhaps she felt awkward in the moment. I didn’t broach it with her at the time because I felt a bit pathetic- like 'my cancer is worse than yours', and that wasn't why I was cross.

We live with the shadow of me dying every day here, and her family doesn't- and that is wonderful for her. So why did she want attention from my nurses? Really odd.

She's been wonderful in many other ways but I think if the situation arises again I'll see my health professionals on my own.

@SewingBees I'm so sorry about your Mum. This is when you need the support of your family the absolute most.

Is there anyone else?
My DM died in 2021. I miss her daily. My Aunts, her two sisters, are my rocks. I hope you have some solid rocks too, lovely.

@WrenNatsworthy Things with my mum are fine really. My sister and I have long accepted the way she is, and there are lots of positives that outweigh the negative. She also has stage 4 breast cancer.

My rocks - my best friend who lives a little way away but would move heaven and earth for me if I asked her to. And my husband, who I'm supposed to be separating from but that's on hold now. We love and respect each other, but we're not 'in love', hence the decision to live apart. But my stage 4 diagnosis changed everything. He's been absolutely brilliant, I couldn't ask for better support. He was in floods of tears the other day because I was being all practical about trying to stay in work to get death in service benefit and not have to pay tax on my pension (which I would have to do if I took ill health retirement), and he said that no amount of money would compensate for me not being there and then cried his eyes out. He doesn't want to be a single parent, doesn't want to watch our daughter grow up without me, but appreciates me trying to leave enough money so that he doesn't have to worry about work as well.

It sounds as though your friend had a strange moment there. Do you think maybe she panicked a bit looking for a topic of conversation? Can you forgive her if it's a one off?

I can forgive her, yes. I wanted to share my frustration with folk that 'get it' though.
You might be right about her feeling awkward and reaching for a topic of conversation.

Your DH sounds ace, a proper support.

@WrenNatsworthy I get it, and I wasn't trying to excuse your friend either.

I have witnessed family and friends struggling with my illness. People don't know what to say generally, though some do. It's why I'm frustrated that I keep crying at work, it just makes people feel awkward and then that makes me feel awkward and we descend into silence with everyone feeling SO FUCKING AWKWARD. It's why this thread is such a lifeline in many ways.

I'm not going into the office this week, thank goodness.