Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@Tillly Daisy is the sweetest dog 💜Thank goodness the nurse you've got today is more reliable with the pain meds. I'm so sorry to hear about the spread to the bones. Thinking of you and hoping you can get home soon with really good support for the pain x

@lucysmam I agree with @tothelefttotheleft can you show us a photo of the jacket? I'm a bit envious of your amazing talent for making things 😍😃✨🎉

@Catunderling any thoughts yet about who you can ask - is your radiologist contactable? I really liked my radiologist when I had my appointment with her before radiotherapy, she was kind and knowledgeable. I hope you get to speak with someone like that because you need to be able to get your questions answered, it's only fair. Let us know how you get on.

@NoodlesandDoodles How did the colonoscopy go yesterday? I imagine it must be a relief to have got it done.

Aw no @Tilllly thats rubbish.

Thanks so much all for your responses and advice on radiotherapy. That was reassuring. It has also helped a lot to feel less alone. Not decided who to contact yet but I think it'll be the specialist nurse. She's the only one I have contacts for. I oddly feel quite happy to wait until I go in person to ask. That might change and I might feel more keen to look for clarity before then. The last week or so has just been a lot as it is.

@Tilllly what a beautiful little pup. Hope you're feeling more comfortable this afternoon xx

Hey @Catunderling, I haven't had radiotherapy to the brain, but considering proton beam to the base of the skull. However, it would have to pass through the temporal lobe to get to the right area, so there's a relatively high risk of damage. Temporal lobe necrosis sounds like the scariest one. For the moment, I'm delaying the rads because my surgeon might have got all of the tumour (will know more after next scan in April), and it's very slow growing, so there isn't a huge rush. ... So this probably isn't very helpful, but I'm also worried about brain damage, so you're not alone!

@Tilllly, I'm thinking of you. Wishing you a relatively pain free night with very punctual nurses.

@NoodlesandDoodles
You alright?
Colonoscopy go ok?

I've slept 4 hours uninterrupted by pain

4 hours... I was getting 1-2 before
I looked on my Fitbit app...can't believe how little I got

Hey @Tilllly so happy you got a little more sleep & I hope that means they’re starting to get on top of your pain control.

I’m just over here with my steroid/chemo related insomnia.

@Yorkshiregold
Yumyum 🐈‍⬛ is purring next to me and sends sleepy dust to you

I don't mind being awake, (if I'm not in pain!) if I'm reading, on my phone

It's when you're desperately tired that it's awful
I'm impressed you haven't been lured in to online shopping...

@Tilllly I’ve just been reading a book but I’ve no idea on what’s going on. It is not a difficult book but my concentration is scrambled.

Need to get up soon to drive in for my radiotherapy. I’ve had enough rest to be safe.

So far, no internet shopping but I have read your warnings!

How are you feeling now? If you need some more rest I can send some snoring dog vibes from over here.

Got another hour @Yorkshiregold and think I might nod off again 🥹😀🙃

Pain is so so wearing

Posted too soon @Yorkshiregold

My mother-in-law invariably buys me a couple of books at Christmas and birthdays, and they are really not my kind of read. You know stuff set in the 50s really poor chicklit type of things. They're ideal when you can't concentrate

Or I like reading my old childhood books, did you like st Clare's or famous fives? Get some

Liane Moriarty & Marian Keys are my go to authors when I want to read something gripping but not too taxing.
Love to all today I hope the day brings some joy amongst the rest of the shit.
I'm going to get James Bond ready for World book day now xx

@Tilllly
You’re right, pain is really wearing. I’m so sorry that you’re in so much pain & I wish I could take it away for you.

That is a fantastic suggestion about reading childhood books. I will see if I can download some Nancy Drew to my kindle. I also loved those choose your own adventure books, off to google whether you can still get them.

I hope you can find some small joys today in amongst the pain.

Well I haven't succumbed to the 3am shopping but I am up and heading to the shops in half an hour. Dunelm for new towels and bathmat. Next for a new top and hopefully a pair of shoes, trainers if I still can't fit my stupid swollen lymphodema foot into shoes and a look in TKMaxx. Home for back of 12 ideally with a lunch snack from M&S then 2pm line flush and bloods then probably a snooze. First I've done myself for ages, gotta love 100mg steroids! Have a good/half decent/ restful day all x

I definitely did more housework on steroid days, and perhaps a bit of online shopping too. I'm a few weeks post chemo now and starting to feel slightly less tired, am going to try a yoga class this morning. I hope everyone has a good day (as much as is possible).

Enjoy... I have worked my way through the five find outers and the Magic faraway tree in recent weeks. And I am hankering after Milly Molly Mandy now

Bloody hell @Whatevershallidowithmylife
Don't overdo it

I’m on my way to Yoga at Maggies. First one in nearly a year. It was very cliquey last time and put me off. It will be nice to see the new building though.

Hi everyone hope everyone is good. Got my three month scan for my mass on my chest area. So no change thank goodness. I’m on the watch and wait. I think it’s called. The consultant wanted the next scan to be done in another six months , but I asked for three months. He was ok at that. He thinks it’s been there a long long time, so it must be very slow growing? he also thinks it’s a thymic cancer. Which I thought of knew myself, thanks to dr Google.
I know it’s got to come out eventually, the consultant thinks it can be done by keyhole which is positive. I’m just feeling so unlucky, just getting over colon cancer, then discovering this. Both are totally unrelated. I couldn’t even look at my scan pictures. I did come out the appointment quite positive for the moment.

Sorry for not responding @demivolte and @lucysmam
Hope @Tilllly they've got your pain under better control
I'm finding the disconnect between brain and pain interesting, following Matt and clearance Tuesday, and home that evening. All ok, doing exercises, pain but brain is weird and numb. I've topped up as Dhc 30 four times a day would not have been enough, even with paracetamol.. realised this quickly when woke due to pain at night, and I'm not doing it.
Keep on forgetting I have a bag with drains but haven't pulled them hard so ok!
It's just all a bit surreal..... And looking down I realised that Boob was quite good at hiding my rather rotund stomach, amongst other things which I've written in my" notebook" to remind me of how I felt etc

Oh and I would deffo recommend a large heart shaped cushion with pocket, I bought 10 gel packs on Amazon which I also put one in the Asda compression bra which has been very useful

Good to see you're home @nappybrained ! Weird how quickly you get used to the drain, isn't it! How do you feel?

Our office lady's given me a self cert form for the 3 days off - but I have a sick note that they've had a copy of 🤔 I've half filled in the self cert but then, am not sure whether the sick note should suffice - I don't know enough about these things, and not sure who would either.

@lucysmam If my memory serves me at all, self cert is used for first 7 days and is fine.
Maybe they haven't realised they already have one?
Doing ok, just pretty sore , and feeling a bit tired today.. And trying to micromanage my lot from the couch!!

No, they realise - she commented that she didn't need another copy since I sent pictures at the weekend 🤷‍♀️ in which case, I don't think they should need the self cert form since the dental hospital dentist did it already.

I hope they're taking good care of you!

I've seen the oncologist today

The bone cancer is moving very fast, I already have a fractured rib from one tumour. (No wonder it bloody hurt!) He describes it as a significant setback as the cancer is uncontrolled in several areas

The chemo and immunotherapy are not working, so will stop. (I thought with the lymph nodes only changing in a tiny way, the chemo would continue. And I also thought the mention of radiotherapy was to treat the bone cancer, but it's for pain relief)

The last line of defence is a new tablet called sotorasib, which targets the “Death Star” mutation I have and can slow it down but by a few months at best.

The focus now is on pain relief and the amitriptyline is, I think working - I see the consultant at the hospice in a few days to review the pain plan and confirm my DNR.

This was not the plan at all