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

[Tilllly]

New thread
All welcome, reluctantly

@Florsilvestredelcampo
It’s one of these Neilson holidays - to Messini in Greece. Really good for activities for my boys and husband - to keep them busy.
I won’t be active (through choice rather than necessity). I was hoping to be able to swim, but have been told my white cell count is on the low side again.

Does anyone take oramorph?

@TwigTheWonderKid Not at the moment but I took it a lot when my back first collapsed and then after surgery. Why do you ask?

Yes, when I get breakthrough pain. I have 2.5ml and find it works well with paracetamol.

@SewingBees I was prescribed some ages ago and have never needed it. I'm in a lot of pain at the moment but I've kind of got it into my head that taking morphine is somehow the beginning of the end, if that makes sense?

So it's good to hear that you and @WrenNatsworthy take it some times, if that makes sense?

I get morphine subcutaneously

I think whatever manages your pain is well worthwhile

Absolutely. The one thing we don't have to be is in pain.
Unfortunately sciatica is a bit of a bugger in that way.

I am also on slow release morphine (20mg 12 hours apart).
If I am taking oromorph more than 5 times a day for breakthrough pain then the zomorph will be increased.

@TwigTheWonderKid I haven't had any oramorph for months so it's definitely something you can take as you need it and then wean off it again if the pain eases.

I suspect it's probably more my fear of what this new pain means.

@TwigTheWonderKid It's awful isn't it, the worry. I am really concerned that my oncologist will tell me on Monday that the medication isn't working for me, or not as well as they'd hoped. I'm getting sciatic pain and stiffness again, and I'm convinced a tumour is growing to cause that. When do you next get to see your oncologist/get scan results?

@SewingBees have you found anything that helps the sciatic pain?
Only diazepam helps properly and I can't be taking that all the time. Grrrr.

I also think there's something going on, there has been talk of spinal scans, and pet scans but I've not heard yet.

Currently in hospital waiting for hb results to see if I can have blood.

@SewingBees have got my pre chemo telephone call with the oncologist this afternoon although the pain does seem to have finally eased off a bit now. I had an ultrasound 2 weeks ago when I developed the same pain but on the other side so I assume he'll have the report from that.

I do try not to worry as I find that I'm usually worrying about the wrong thing - I'll be fixated on one thing which turns out to not be an issue and then something else will be happening inside me that I haven't even thought about.

Sorry to gatecrash, but does anyone know if CT scans can pick up anything abnormal in or around a breast reconstruction site? I have metastatic BC to one lung and had a normal CT to other parts of the body in mid June.

These last few weeks, I've had pain under my reconstruction at night and around ribs and a dull ache where the lattisimus dorsi flap was created ( 12 years ago) I'm getting nowhere with the BCN's calling me back, so will have to likely wait until I speak to one of my team, later this month.

Totally convinced that things are spreading unknowingly!

Not sure @Enigma52 When I had BC I only had MRIs whereas with my current cancer I've only had CT scans. But I have no idea if that is to do with the type of cancer or something else.

For how long have you been trying to reach your BCN?

@TwigTheWonderKid I've sent a couple of emails and left 2 voicemails in the past 2 weeks. The pain isn't persistent during the day, but when I lie down in bed.

That's rubbish. Have you contacted PALS?

@WrenNatsworthy The sciatic pain was worst when I was in hospital immediately after my back operation. I was put on a nerve pain tablet that I hated because it made me so sleepy. I was on pretty heavy duty painkillers too - plenty of oramorph. Eventually when it didn't settle down at all I had a spinal block which has left weird foot numbness and tingling in my calf but did ease the pain a bit. I was under the care of the spinal surgeon then though, not sure how easy it is to get a nerve block done otherwise.

Naproxen and paracetamol are my go to painkillers now. I think the pain is getting worse again though so more radiotherapy to that tumour could be on the cards.

@Enigma52 I think a CT scan will show most things, and they are the go to scan for picking up cancer, I believe because they are faster than MRIs and are therefore clearer for parts of the body where you have to move, ie to breathe. MRIs are more detailed but take longer and you have to be really still otherwise you get a cloudy image.

BCN has just phoned! She reiterated the fact that the last CT was normal and suggested that I call the hospital where I had the reconstruction and request an U/S. Will do that I guess.

Yes the BCN did say that CT was good for picking up cancer. Maybe the implant is playing up, I don't know.

Ha! What did I say about "something else will be happening inside me that I haven't even thought about."?!

Currently in A&E with suspected pulmonary embolism. Yay!

@TwigTheWonderKid oh no, cancer related or just bad luck? My sister's had that and was in agony. I hope you are doing ok in the circumstances. I hardly dare ask if you're being looked after.

@SewingBees not sure, I think it's probably a potential chemo side effect but also because I've had awful cancer related abdominal pain I've been lying in bed, perfectly still for the last 2 days so that may be the reason.

I am actually being really well looked after. I called 111 as I wasn't sure if I needed to go to hospital and they sent an ambulance which arrived within 30 mins.

I was taken straight to my own en suite isolation room in A&E and the nurses and doctor were all lovely and very thorough. And excitingly all trained to take blood from my PICC. I've just been moved up to the Acute Assessment Unit where the staff are just as lovely. Have to have CT with special contrast in the morning. That's my only small complaint, it's a hospital where people are coming in 24 hours a day, surely it should be possible to get a CT scan after 6pm?!

Thanks @SewingBees that's great info.

@Enigma52 glad your BCN called and was a little reassuring.
@TwigTheWonderKid oh ffs. How many more things? It's like twisted bingo this. Hope you got your scan. Keep us posted lovely.

Did I already say I cried on a doctor and got a bag of blood yesterday even though my hb was 91? I do feel better today.

I need to slowly strengthen my core , I've no idea how. I am needing people to help me up from sitting down. Anyone know any gentle exercise classes on Youtube?