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

[Tilllly]

New thread
All welcome, reluctantly

Seen oncologist and palliative care consultants

Have got a mix of drugs that should manage this pain better, whilst minimising (if not eliminating) the risks. But worth the risk not to be in pain

Chest - 2 lots of antibiotics haven’t helped because they don’t now think it’s a chest infection. It’s fluid on the lung. Right in the middle where they can’t drain it. That’s why I’m so out of breath… I’m going to have some radiotherapy in the next week or two, which won’t instantly help but should reduce pain and might help with breathlessness
Trying to avoid oxygen cylinders, walking aids etc

Knee - there’s a tumour on the femur. That’s why it hurts…. Radio for that too so hopefully I can then walk normally

Travel - forget it. Nothing on a plane or overseas. And I wouldn’t get a fit to fly cert now anyway. Best recommendations for trips in UK please ☺️

Just waiting to see if the sotorasib is going to help at all

@Tilllly I agree about oxygen but all I can offer is my experience which is that walking aids are very very useful. I couldn't do a tenth of what I do nor be so independent without my wheeled walker (rollator). Obviously not good on stairs though and one per floor could work out pricey.

But honestly so good for balance, stability, helps so much if you are weak as you can sit down. Wonderful for any outings, using in hospitals etc. And they help your progress as you can walk more and so use your leg muscles more, and build yourself up even when weak and wobbly, and for fall avoidance.

Hope radiotherapy & sotorasib work

@SewingBees She (if I've got that right) is beautiful and knows what she likes.

Rollator?

@Tilllly the technical term for a walker with four wheels is a rollator, it's like trying to make fetch happen as nobody uses the word or understands it.

I have one like this. Great for outings as it folds up well, sorry about Canadian results. It's by Nexus.

Then this one, I also have a similar one which was bought in the UK and is by Homecraft. Not as good for outings as it doesn't fold well but the flat seat is brilliant for moving your plate of food, cup of tea etc into another room.

So I use the Nexus for hospitals, appointments and shopping and the Homecraft in the house when needed.

Ok @Tilllly , how far do you want to go? When and for how long? And what are the top three things you'd like to do whilst you are on holiday?

Thanks @LuciaPillson
Physio suggested it this morning too so will look into that

@TwigTheWonderKid
No idea, am open to any suggestion

@Tilllly have you ever been to Portmerion? We had a few nights there a couple of years ago and it was lovely. You can either stay in one of the two hotels or in the amazing buildings in the village but on a hotel basis. Hotel guests can use the fab outdoor pool which is as warm as a bath.

You could combine a couple of nights there with some other lovely places in north Wales to make a luxury tour?

Or what about hiring a boat on the Norfolk Broads? It's quite a sedate holiday but it's very relaxing and you can stop at all the lovely little waterside pubs for lunch and dinner.

Or what about the Scilly Isles?

Or a few days here?

We once had a lovely week in this cottage In Cornwall or what about Northumberland? Loads of beautiful, empty beaches.

I had a text today saying my PIP claim has been approved. Don't know how much I'll get yet - letter in the post - but I'm really pleased to be awarded it on my first go and with just a telephone consultation rather than a face to face assessment. The extra money is going to be so helpful - my petrol costs have rocketed now I can't walk anywhere more than 5 mins away, and all the hospital visits add up.

@WrenNatsworthy Portmerion looks beautiful - one to remember
@Tilllly where do you actually live? Might influence suggestions
Maybe you could do a tour of as much of UK as possible? I’m always amazed at how varied our small country is. I live in North Scotland- so very different from the South of England.
Maybe you can’t walk far, but could have an emphasis on lovely meals? Scotland is colder than England, but I do rate our produce. I’ve had some really tasty fresh meals in rural Scotland. Just bring a puffer coat!!

Come on @Tilllly , I am stuck in this hospital bed with nothing to do but research and suggest fab holiday options for you. Give me some feedback!!!

I asked DH to bring in some more flannels for me today and the only carrier bag he could apparently find was one which had their lunchtime fish and chips in. I cannot tell you how unpleasant it is to wash one's face with a flannel which reeks of haddock. 😭

@Tilllly I have been staying in Devon and Dorset. I really like Exmouth and we had a boat trip on the river Exe. We are staying in Poole for the weekend and yesterday we went to Brownsea island. I loved it it's National Trust run so all the usual N.T facilities and we saw some red squirrels!. It was a day of fresh air and exercise, today were going to Bournemouth and I'm planning a day of cake!

I'm sorry @TwigTheWonderKid
I'm a selfish 🐄

But I like the Welsh place and the burgh island one. Cute, bit different, not run of the mill

How are you @Tilllly ? You've been very quiet.

I'm struggling a bit breathing and pain wise

Sharp down turn in independent living

@Tilllly Sorry about the pain and breathing. I'm asthmatic, it's milder now but had some severe attacks in the past and not being able to breathe is no fun, at all.

@TwigTheWonderKid The haddock face flannel sounds both grim and vile (am learning MN terminology as you see). Can you maybe use wipes temporarily and meanwhile put pressure on the H to bring clean flannels in a non-stinked-out carrier? How are you?

I had an actual shower yesterday, that was very exciting. But back to the haddock-infused flannel this morning. Lucky me.

Temperature is still not normal but less abnormal than it was. But I've just lost my 3rd cannula and am waiting for someone who isn't too scared of my teeny tiny veins to have a go and put another in before I can have my next antibiotics.

@Tilllly, sending positive vibes your way.

@LuciaPillson how are you, my lovely?

3rd cannula? The NHS isn't made of money!

No end to the extravagances of some people! X

Hey, our Twig can't help having expensive small veins! It's not like she's gleefully rolling in a bed of cannulae whilst giggling maniacally thinking of the poor struggling taxpayer gone broke from her luxurious wallowing.

Or so I assume.

@TwigTheWonderKid No need to read the top bit of this post. I'm strugglingish, awful ostomy stuff, pain returned quite strongly so car rides got interesting with each bump in the road (the city could be doing a lot better at this I fear) eliciting small screams.

Yet now on day 2 of chemo regime with the oxaliplatin and immuno drug and helper drug given in hospital, and the other (infusion equivalent of Cape) infusing over 2 days at home, and already pain has diminished as well as some other symptoms, this happened with previous cycle as well.

I’m so sorry @LuciaPillson - I hope the new chemo really helps.

Remember when being extravagant was fun?
xxx

How're we all getting on? I've got some horrific immuno related symptoms that my crohns is going mental, I've also burned my thyroid out but I have no tumours at all now. It feels worth it :)

I was getting better then I ended up in a&e for 12 hours on Friday with arm pain. Hurts to text still but not as bad. Was crying as it hurt so much husband rubbing my back was the only relief. They thought (correctly) that it would only respond to neuropathic painkillers, then at the last minute worried i might have a dvt so sent me for an ultrasound. SDEC couldn't organise an ultrasound that late so injected me with a blood thinner and sent me home with a prescription..we left at 9pm. No pharmacies in Worcestershire are open beyond 9pm including the ones on the nhs website that said they were. DH was exhausted so i said not to drive to Birmingham.
I had a night of pain, upped my morphine slightly. DH went to nearest pharmacy. They couldn't fill the prescription because it had been written incorrectly, didn't say how many to start with and at what point to stop increasing the dose. So DH had to go back to hospital.
I finally got the drugs I needed at 1pm after 2 nights and a day of pain. They are definitely making a difference but dosage not quite right yet.
Back on higher morphine again, pain in ribs back, arghhhhhh.

@Tilllly we have booked a family holiday in June after DS last GCSE at some cottages in Devon, there is a hydropool there which I will take full advantage of, PM me if you think that sounds nice and I'll send you the link.

@TwigTheWonderKid Have you any women who can help you? DH does his best but often gets it wrong.

Bloody hell @WrenNatsworthy