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

[Tilllly]

New thread
All welcome, reluctantly

Feeling frustrated and worried today. I was due to meet my oncologist on Thursday and find out whether the drugs are holding the metastases at bay. However the CT scan was scheduled for when I was on holiday, and the letter informing me of this arrived after I'd left. So CT scan is now rescheduled for 2 weeks time, and because it takes two weeks to be written up I'm now not seeing my oncologist until a month from now.

In the meantime I need to manage the uncertainty and worry for longer and it's really getting to me. Luckily I have counselling at Maggie's tomorrow and I'm sure that will help.

@SewingBees - would contacting oncologist help to bring scan forward?

@SewingBees that's tough. Definitely worth contacting someone to see if it can be moved forward or if you can be considered for a cancellation. Could be worth calling scanning department directly, and explaining the circumstances. Presumably your oncologist knew that you were away?

I've spoken to the CT team today and my oncologist's secretary - the dates I have are the best they can do.

@SewingBees that's rubbish. I'm really sorry.

@TwigTheWonderKid Thanks for the kind words. It is a bit rubbish but it does mean I can continue with optimistic denial for another month! If only my back would stop popping and cracking. It's probably just from sleeping in hotel beds for 2 weeks but the other night it cracked and shifted so violently I was scared to move. It's probably nothing serious, but because my lower spine is fully supported with rods and pins it could actually have been a bone breaking and I wouldn't necessarily feel any pain. And of course your mind goes to worse case scenario...

Denial (optimistic or otherwise) is my major tool.

How is everyone?

@Tilllly , how are you doing, petal? We are all thinking of you and sending you so much love.

@TwigTheWonderKid I've got an urgent colonoscopy on Friday and the prep is filling me with dread 🤦‍♀️ how're you?

@Tilllly still thinking of you from afar 🌺

Does anyone have any contact with our @Tilllly irl?
Thinking of her lots.

@ShalommJackie I think often the anticipation of these things is sometimes worse than the reality. Maybe? Certainly when I had to swallow the oral contrast for my last MRI I'd got myself worked up into quite a state but it was anywhere near as bad as I imagined it would be (until the rampant diarrhoea they had failed to warn me about began...) But I can totally understand why you are dreading it.

Have pm'd you @WrenNatsworthy

@SewingBees I'm sorry about your poor back. Hopefully the counselling today will help your head.

@TwigTheWonderKid you ok love?

@ShalommJackie colonoscopy is one treat I'm yet to have, wishing you a quick procedure.

In me news my bastard hb had fallen. Distict nurse yesterday couldn't get blood out of me so phlebotomist on their team is coming tomorrow. I suspect I have blood transfusions ahead and maybe another ablation. Joy joy joy.

But no, I don't.

Also thinking of Tilllly and all of us on the dull and unexciting threads sending our love. I don't think any of us there had PM type contact. It might be worth someone sending a PM if no-one has heard as its unlike Tilllly to be quiet.

Unfortunately for me my cancer marker Ca125 keeps going up. Now over 800 (nr 0-35).
So I assume it’s coming back - fallopian tube cancer.
Nurse was trying to be positive- that it can go up for other reasons, but mostly other reasons are still gynae reasons, and I have none of that left. Ghostly gynae organs raising my cancer marker??

Joy. I’m not sure what’s next, but been told to wait for my next scan (Mid May) to see what that says.

We’re in an endless waiting game aren’t we? Trying to live a life whilst walking along a cliff edge.

I hope @Tilllly is ok. It is worrying. Hard on this thread not knowing about people.

Perhaps we need to indicate to each other if we wish to stay completely anonymous or be contacted by pm. Personally I'm happy to be contacted.

Maggie's centres are just so brilliant. Counselling today was so helpful, just to share my thoughts in a space where no-one is trying to find solutions, just coping strategies. I filled in a questionnaire about how the centre has helped me, I think it will be used in a bid to get extra funding. Which reminds me to start making a list of legacies I want to put in my will when I rewrite it.

I did make my counsellor cry a bit though. Such a difficult job.

I think it's more that I'm nervous about the prep 🤣🤣 I've got the sexy low fibre diet of white toast tonight. I'm kind of looking forward to the sedation

I don’t mind being contacted

I’m thinking , maybe as I get more unwell, I may ask DH to post on my behalf
We are such a support to each other on this thread, but sadly we also have to face reality.

I'm from the other cancer thread. I recognise some of your names.

I think of Tilly many times a day. I miss seeing her posts.

She is supportive to me and I wish I could be to her.

I'm happy to be contacted. I've just connected with @TwigTheWonderKid on SM, I probably post once a day and my family will definitely announce there.

Ohhh @Tilllly .

Good morning.
I'm just trying to catch up with what's going on with everyone.

@Tilllly I hope the hospice team are on top of your symptoms and you are just having a well earned rest.

I hope everyone who is in hospital and/or suffering right now is able to get home and/or get some relief.

There are not really any updates for myself since my last update.
The side effects from the chemo seem to be hitting a bit harder each time but I'm still plodding along doing day to day things including lots of form filling and team meetings for my ill health retirement.
As my wages have now stopped I'm also trying to navigate the benefits system which involves more form filling.

Sending positive vibes to you all.xxx

I wouldn't mind being contacted and I would ask a family member or friend to update the thread.

It's always very difficult being on this thread, we are all so supportive of each other but the very nature of the thread means we will lose our loved thread mates.
I take comfort in the fact that Tilly knew how loved she was on this thread and even if she is unable to post she knows that we are all with her.
I'm her own words IT'S JUST NOT FAIR x

I'd be happy to be contacted. I've asked my DH to update the thread