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

[Tilllly]

New thread
All welcome, reluctantly

I'm here, doing ok. Feel stable, no better no worse. Still waiting for the radiologist to compare my most recent CT scan with the previous one, rather than the one before that, so I still don't know if my medication is working. I've given up chasing, I'll be due another scan in a month so I figure I'll just wait it out. No news is good news and all that.

I'm getting ridiculously excited about the holiday to Australia in August, tempered with worry that I'll struggle to parent alone for 2 weeks. I've had two practice travel days in the last week - one to Manchester and one to Edinburgh, both train journeys with multiple changes. Seemed to go ok though I've been tired afterwards. I think I might need to go into training by walking further every day and finally taking the plunge and going swimming (no pun intended). That doesn't appeal, every day feels like a training day already.

I'm here.

Finally saw oncologist last Thursday. Starting second line chemo (Folfiri) next Monday.

Having PICC line put on Friday. I have asked for it to be changed to a port (the wait for these is much longer)

Just hoping bloods will be ok. Am currently on antibiotics for a chest infection plus it's been ages since I've had any bloods done in general and the cancer has spread so who knows what's been happening.

@WrenNatsworthy thanks for asking! Nope, no answers this seems to be befuddling everyone, and she took a photo for my records. Does not believe it to be PICC related. I need to keep an eye on my reconstructed side because there is some redness there but otherwise the bruising looks to be healing.

I got a pass on chemo this week due to low blood pressure (I think the cuff was on loose but Ill take it) and the timing works better for working around a holiday planned in late July. I did get my Phesgo, and I got an extra trip to ultrasound to check for blood clot in my leg (none) to explain the right leg swelling and check a box for the lymphedema team. Now been referred thankfully, Want this sorted!

Potassium still crap so still supplementing and having to eat bananas which Im so bored of. There was a bright spot though - I seriously cannot take another goddamn Uber and London traffic so I told hubs I thought I could make the walk to the Tube station and Tube home. We did with a few short pit stops but I made it and once this leg is drained and Im not dragging around an extra 10 lbs of uselessness then itll be even better. Was really happy but so tired!

Hope you feel better soon - I got a bag last Thursday, but my Hgb didn't come up as much as she was hoping, likely due to ongoing diarrhea issues. But we swapped around some anti-sickness pills causing it and hopefully this week I can get some food in me in larger quantities AND keep it in 👊

I'm still here, currently in hospital at the moment with a bitch of a kidney infection, I've got a biopsy tomorrow to rule out mets to the kidney / also get some of the abscess fluid out of my kidney to see what flipping antibiotics it's actually susceptible to as my urine is growing nothing but the pus cells in it are increasing with every sample and I've been here for 3 weeks with no let up.

Hope everyone is okay

Good morning everyone.
I'm still here but needed a little break as last week was quite an emotional week for me.
It was my friends funeral which thankfully I was well enough to attend.
She had a beautiful service but it hit me hard knowing I'll never see her again and also knowing my family are going to have to go through the same thing.

I also had a final case review meeting with work and my contract was terminated there and then.
I knew it had to happen to complete my ill health retirement but I wasn't expecting it to happen on that day.
I admit I cried about it because I miss work, I miss my colleagues and I miss the routine.
Later in the week I will pop into work to collect my personal belongings which is also going to be emotional.
I could have popped in today after my chemo but usually don't feel great afterwards and just want to get home.
So I now no longer work for the NHS and I am officially unemployed.

I'm sorry for those of you having a difficult time right now.
I hope if you are in hospital you can get home ASAP.
I hope if you are in pain or discomfort you can get some relief.
I hope if you are feeling anxious or stressed right now that you find some comfort and find some peace.

Tough times all round by the sound of it. Hugs and best wishes to everyone xx

I'm impressed by everyone who is feeling shitty but still planning holidays. I just feel like if I plan anything nice something always comes along to spoil it, and I'd also feel really anxious about being too far away from my hospital and medical team if I suddenly got sick.

But I soooooo want to go somewhere and feel guilty the kids aren't getting a holiday. Should I change my mindset and if so, how?

Oh @GoldenDog1 what a tough week. I am so very sorry about your friend. I'm glad you got to go to her funeral.

You are totally allowed to cry about leaving work - it's a massive change, part of letting go of who we used to be until life threw us a curveball.

@TwigTheWonderKid I totally understand the fear of booking anything nice. I've resold so many concert tickets. I say no to most invitations.
We have a family holiday booked in a few weeks after DS finishes his exams, and I'm going to ask for a short course of steroids so I can actually enjoy myself instead of flopping about all over the place.

@TwigTheWonderKid could you get someone from your medical team to chat to the hospital closest to where you stay?
We have got other family members coming to support. We chose UK as flying is not a great idea. We chose the place we are staying very carefully, made sure it was appropriate for our needs.
I'm sure with careful planning you could still go on holiday.

@WrenNatsworthy think I'm worried about getting ill and being hospitalised far from home.

@TwigTheWonderKid where do you actually live? Can you look at places up to two hours away? You don’t need to go far to feel like you’re on holiday. It definitely feels good, and would be nice for you all xx

We live in south west London so yes, you are right; there are lots of places we could go to. A complicating factor is that I'm no longer driving and DH can't drive so it would need to be somewhere accessible by train. Everything just feels overwhelming and insurmountable right now. I'm sorry to be such a moaner.

Don't apologise for feeling overwhelmed my dear Twig, I can't even do an online shopping order without having a meltdown beforehand.

@TwigTheWonderKid Genuinely, you’re not moaning and even if you were - you have every right.
i don’t know your full story, but can’t your DH search for possible destinations? Use UBER at both ends or ordinary taxis.
I wonder about booking a house on Air BNB, one of the high end hosts (that sounds dodgy), so you don’t have to worry about needing to be seen by others in a hotel - if you’re exhausted
Maybe factor in proximity to a hospital- I’m sure you would then be transferred to your own.
You can usually get food deliveries to these places too.
In lockdown we visited friends (when allowed to) in Milford on Sea and also had a few days in the New Forest. It’s being away from home that really matters - you don’t have to go far.

I’m just back from a holiday with DH, and we honestly really needed that break from reality

Any news on your kidneys @ShalommJackie ? Hope hospital isn't too grim.

I'm currently having a blood transfusion and I can't stop farting!

Hey! Yes actually! It's definitely an abscess and not mets thank fuck but the treatment im on to stop progression has dampened my immune system and im so sick.

Ive got bilateral pleural effusions, my liver and spleen are really big, plus my kidneys are stressed out and my creatinine is high and the abscess was about the size of a golf ball. They think all of the above is caused by the infection

At the moment they're having an mdt about whether i need to come off the targeted therapy whilst i recover from my sickness but the risk of recurrence is so high that its a balance between stopping recurrence/ progression of a cancer that is really aggressive and trying to kill me or the impact of the infection I have. If I progress / have recurrence on the treatment I have to come off it immediately and my cancer before the targeted therapy was very aggressive.

Anyway! I've had a drain put in to drain the abscess and they've sent some fluid to the lab to grow whatever bacteria it is! I'll be here for at least another 2 weeks.

I asked my lovely husband to bring me some more pants and pjs, plus some leggings and a couple more tops.

I have received 26 pairs of pants, 2 bras, 4 tops, Halloween mr men gym leggings and Christmas pjs 🤣 I mean I guess he did as I asked! He also brought a single duvet, with a nice cover on it and my pillow from home as I'm in a side room and I've already been here a while

He was a bit upset when he saw me as I was still out of it from the anaesthetic and on oxygen which made me feel bad, he didn't stay long but left me with a giant bag of Percy pigs and 2 bottles of coke. 🥰

Hope everyone is plodding on ok. I'll go catch up now!

Oh @ShalommJackie that sounds really tough, but you sound quite upbeat?

I used to work in this hospital and on this ward so I know all the staff on the ward. I guess Ive accepted I'm here for the long haul. I've got an iPad and my own pillow now, I can reset the pump when it beeps which makes a massive difference! I've got visitors, everyone wants to come and see me at the moment!

I feel less sick than I did when I first came in, and I know my consultant is going to advocate for me today. It makes a huge difference to your mental health if you know the people who are treating you.

Yes, being on the receiving end of an oncologist who has zero empathy I know how not even being treated as a person can affect you so really knowing your team like that must be really comforting.

I'm so sorry your oncologist is utter dross. Is this the one who dropped results on you in the corridor? Some people really shouldn't work with the public and just do research!

No, she's his boss...

The lovely chemo nurses make up for the heartlessness of the oncologists but I've been off chemo for 6 months. Start again on Monday ( assuming bloods ok which is a big assumption at the moment) so I'll at least be looked after by them.

@ShalommJackie I had to laugh at your husband's clothing drop. He probably brought all that juuuussssstttt in case he grabbed either the wrong thing or not enough, though let me guess, was one of the bras wrong? :P When I was stuck in the H and I had husband bringing me clean clothes I requested a bra and he managed to bring a ratty old sports bra from the back of the drawer, bypassing all the normal, nice bras. How I have no idea. And there is nothing better than some Coke when you are in hospital! I hope you feel better soon though, that sounds like a real rough ride.

@TwigTheWonderKid Im pretty desperate to get home, but not going to lie, it does scare me to be far from the health care I 'know'. That being said, Mowly went to the US when she was in all that pain last summer and if she can manage it I can. I figure Ill just keep an eye on where the closest H is and what to do if I have a common issue. But thats all you can do really, short of never go anywhere again. We also book everything refundable these days after getting burned too many times the past year with this leg and post covid with concert tickets. Now most of the time I buy concert tickets last minute, when I know Im capable of going, from a resale site. There are ALWAYS tickets available and usually for better prices than when originally sold!

Ive swapped my potassium fruit of choice to watermelon, which is very refreshing. I got the rest of my bloods back and sodium is low again too so... I dont know. I was researching supplements and there is a salt/magnesium pill that they make for Graves sufferers who cannot eat enough table salt in the day for their condition, Im kinda tempted to get them. But my appetite switched on today and Ive managed to not have diarrhea for 24 hours so Im REALLY hoping I can start retaining. I just plowed through a dinner a 5 year old would love- 7 chicken dippers, a big old sloppy joe sandwich, and this bowl of watermelon. Oh well, sometimes needs must and all :)

Had my PICC line fitted this morning. Guy doing it was nowhere near as good as the nurse who did it last time (she was supervising him) and it took forever, with lots of tugging and stuff. Last time I was so smooth it was done before I realised. And it's sore.

And as predicted, my first round of new chemo has been delayed due to my crap bloods. White cell count rubbish, which I was kind of expecting as I'm still on antibiotics for this chest infection but haemoglobin also low 😭

How's everyone else?

Sorry to hear that @TwigTheWonderKid I'm still here waiting to hear when my chemo will start.
The waiting is frustrating I tried to get in touch with the cancer nurses and appts today with no luck. The appts line have an automated msg which informs you that due to understaffing in the dept you might only get a couple of days notice before an appointment😱 which makes planning very difficult. I will try again on Monday

I’ve been told niraparib is not working for my Fallopian tube cancer - so going on letrozole
I almost laughed when the Oncologist said GP would prescribe next week
Do they know how crap GP land actually is!
will be on the phone Monday morning - chasing the prescription

Also referred to MacMillan/ palliative care. How can I be this well and this unwell simultaneously?
Schrödinger’s cancer!!