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

[Tilllly]

New thread
All welcome, reluctantly

I really resisted coming over to the stage 4 thread when they split but now I find it much easier to be here (no offense if rather not be!)
I guess we always find our people as humans and that's our strength.
I'm not sure if i've just written a load of clap trap or a beautiful sentiment! 5 days on from chemo and I feel like hell, just so numb emotionally and physically I don't remember it being this hard😢although I guess it was

@TwigTheWonderKid I'm so glad you said that as I also find myself taking comfort from celebrities that have died relatively young from cancer. I think as you say it it's because it shows me that even with money this bloody awful disease can't always be cured. Cancer doesn't discriminate.

@Florsilvestredelcampo I'm sorry you are feeling so awful.
I hope those side effects ease for you soon.

I've just had a visit from my sister and we were talking about my CT scan yesterday (which I'm happy to report that apart from it taking them a few attempts to get the cannula in it was relatively drama free this time).
I was telling her that I won't get the results for at least 3 weeks and how I can't get my head around the fact I've got to go through another 3 rounds of chemo which potentially might not even be doing anything except giving me shitty side effects while I wait for those results.
I told her I think my stomach tumour has grown.
This is the first time I've voiced that out loud.
I'm experiencing a lot of discomfort in my stomach, a full heavy uncomfortable feeling. It's similar to some of the symptoms I was having before they operated to bypass the tumour that was causing my stomach blockage.

I'm praying that my feelings are wrong and it's just because I'm plumbed differently now.

@GoldenDog1 I hope you are wrong too. And I hope your sister is was sympathetic and didn't dismiss your feelings.

Although I have been totally shocked by how much my state of mind has been affecting how I have been feeling physically. Whilst waiting for my team to pull their fingers out re my treatment, I've barely been able to drag myself out of bed for many weeks and last week I would have happily ended it all.

I had chemo on Monday. There is no way it could have had any effect on the cancer but I feel entirely different. Last week walking to the GP surgery was a major mission and I felt like I had a bowling ball in my tummy, this week I'm fine. I hope your symptoms are also as a result of worry. But if course one day it won't be, will it? It's all such a head fuck

Sweet peas for all of us who need some beauty in our lives.
(Auto correct changed that to swear peas which would also work at certain times!😂)

Oh they are glorious!

Definitely need a bit of beauty and cheer here today. Have crashed off the steroids and am feeling dreadful again. I know it was inevitable but after 2 months of feeling awful, 5 days of energy was amazing.

I'd like to share that I am in the garden hammock for the first time this year. The swimming is doing me a lot of good and I feel stronger and more confident that my back will survive a few minutes here. Of course I may be crawling into the house crying out for painkillers in a little while, but also I may not, so I thought I'd give it a go.

Oh, and we told our daughter about the Australia holiday and she's thrilled.

And if anyone needs more beauty and cheer, here's a field full of daisies 😁

How fab @SewingBees !

My amazing and lovely friends clubbed together and bought me a swing seat for our garden last week. Luckily, being a total short arse means I can lie out along its length and I had very lovey 2 hour nap on it this afternoon. Our garden is much more urban than yours but was still filled with bird song this afternoon.

@TwigTheWonderKid I'm very lucky to live where I do, though it does mean that deliveroo isn't an option, and a trip to the cinema is a long way. It was a beautiful day today, but no wind so the midges were out early so we didn't get to enjoy the full outdoor experience. Neighbours were attempting a BBQ but I think they gave up in the end!

Here is a lily from the pond outside our holiday cottage. 'Tis lovely.

I have a new symptom - edema. Am having to get DH to massage the fluid back to my heart, it's driving me crazy. I've been walking around more lately than I have in ages.
Really annoyed as will have to go to the GP next week.
No other symptoms to suggest heart failure.

Oh arse @WrenNatsworthy that's not bloody fair. I hope you can manage the symptoms whilst you are away enough to enjoy your holiday properly.

Ugh, got a c.diff infection. I KNEW this was going to happen after those three weeks of incessant antibiotics in the Hospital in April. Now more antibiotics to clear this up. At least it got me off chemo for an extra week. Once Im done with this course its on to a probiotic stat to get that gut flora back in alignment, I dont care what my team say. Why do doctors do one thing and then once its past dont consider the potential knock on effects? I feel like everything I am dealing with now is a side effect of some procedure or other and Ive been left by the side of road to deal with it myself.

@WrenNatsworthy oh we can be fluid collectors together now too! I gave a giant knitted sock on one leg to reduce my lymph swelling and its hot and awful but seems to be working. Good luck managing the edema, any chance to cycle or a different exercise?

I hope everyone is enjoying the sun!

Has anyone got a wheelchair?

I'm finding walking really uncomfortable this week and can barely make it round the house.

Guess I'll have to buy a folding type one but no idea which to buy or how much I'll need up spend to not piss off the person pushing me! Any suggestions?

I can't advise I'm afraid, but it would be worth a new general post as other MNers will have advice. There was a great one about mobility scooters recently that I read with interest.

Hi everyone.
Sorry to hear about those of you having a difficult time. I hope things improve.

I've been in a bit of a bad place.
My stomach discomfort got worse to the point I could barely eat without pain and feeling sick.
I broke down in Oncology on Monday as these are similar symptoms that I was getting way back in the beginning and I have been scared the cancer has grown & caused another blockage and terrified I would need the feeding tube put back into my intestines.
I had my CT scan on Friday and told my specialist nurse that 3 weeks is a long time to wait for the results as I know from experience the damage that can be done in 3 weeks.
She said she was going to request my results as a priority.

She's just called me to let me know the good news, my cancer is still stable and there is no change since my last scan in March.
I am crying with relief.

They think as I've been suffering really badly with constipation this has maybe caused a blockage somewhere that has led to my symptoms.
I've got to up the laxatives but if things don't improve or get worse I've got to tell them as soon as possible.
For now though I'm just so relieved the CT scan results are showing stable.

Just shows aswell there is no need to be making people wait weeks for their CT results.
It's took them only 2 days since I had my meltdown.
I'm very very grateful though.

@GoldenDog1 So pleased you got good news, and quickly. You must be so relieved. Living with this disease is so hard xx

I've got one! We asked my GP to make a priority referral to the OTs, I had a wheelchair within 2 weeks. I have it to save energy with regard to my anaemia. So don't pay for one!

@Goldendog1 I am so relieved with you. Hand squeezes.

After 4 glorious days of holiday I am in hospital with severe sciatica. I can't sit down. This is going to have a serious affect on tomorrow's planned cream tea.

Oh @WrenNatsworthy no! So you're in hospital in Devon? Are they actually keeping you in?

@SewingBees thank you. It really is hard.
I'm so thankful my nurse called me straight away with the news as I've been so sick with worry.

@WrenNatsworthy oh no. Are you in hospital in Devon?

Does anyone have any experience of PICC line leakage?
My new PICC has been leaking blood and fluid.
I rang Oncology yesterday about it and had to go up to have it cleaned and the dressing changed.
It started leaking again but my district nurse was here yesterday afternoon so she cleaned and dressed it again while she was here.
However it is still leaking.
It's not a lot but it seems to be continuous.
This is my 4th PICC and it's never happened before.

@GoldenDog1 how much leaking are you getting?

Had my second one put in a month or so ago and it's been quite crusty on several occasions, which I never had with my first one but I was told when this one was "installed" that if there is leakage or blood I should contact The Marsden pretty immediately as I think it's an infection risk .

Sorry, that's absolutely no help at all!

Thank you that is helpful.
There's not loads of leakage but it seems to be continuous.
I'll ring Oncology when they open.
I expect they'll want me to go up again.

I chased again today for information about the missing CT scan report and information about whether I need to be scanned again before I see my oncologist in mid July. I'm not joking when I say this is the 19th time I've chased and it seems no-one on my 'team' (and I use that word in the loosest sense) is able to pick up the phone and tell me what the fuck is going on. I've chased via my oncologist's secretary, via my oncology unit, via Maggie's.

I'd say I'm losing the will to live, but funnily enough my will to live is what's keeping me going in the face such utter incompetence.

This is just not acceptable. I have had a shedload of issues with my treatment and have formally complained to PALS twice already. Funnily enough the complaints seem to put a rocket up the team and things seem to get resolved very quickly afterwards (at least in my area).
I fully recommend a phone call to PALS, they have really helped me.
Feeling very down today, I am on 3 monthly bloods at the moment as my cancer was stable but I can feel that my white count is too low as I've got to know the symptoms. Not due back in clinic until August so not sure what to do. I've only just started week 2 of my 3 week Palbociclib cycle. I feel constantly sick and shaky and the hot flushes are every few mins day and night. I'm just exhausted from not sleeping due to the flushes and I can't concentrate on anything so work is a nightmare.

Sorry for the whining. Sending you all hugs.

@Englishrosegarden Can you call your oncology unit and tell them your symptoms? They might flag it to your oncologist and get some advice for you. If you're feeling that rough I don't think you should wait for an appointment.

I'm loathe to contact PALS. I've already asked for a change in oncologist and only met this one twice. I'm a bit worried I'll get a reputation for being difficult, and therefore poorer care. I found out today he's semi retired which might explain why he's so hard to get hold of. When I meet him in July I'll ask about whether I should change again if he's spread too thinly across his patients.

I do feel well, still recovering from my back operation but getting better every day, so I'm not fretting or anything, but it would be good to get some reassurance that the drugs are working.