Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

Are you not in a side room @Ohjoyohbliss? They usually plonk chemo patients on their own, with separate bathroom.

I hope you get fed! How do sandwiches pose a risk? What’s the hair doing? Has it all come away now? ( reminder to self to buy warmer hats!)

I'm so sorry you are having such a tough time @Ohjoyohbliss

When my DH had Lymphoma, the first hospital had awful food, but the tea was lovely - made in a proper pot and served in cups and saucers. The food was awful though! The second hospital, their food was slightly better, but the tea was that awful, instant, yucky stuff 🤢

Most days, I ended up taking food in for him - it was just a case of what he fancied to eat at that moment. To be fair, the hospital staff were very accommodating, and they got used to me standing there with a cool bag and flask of tea in hand!

Anyway, I'm sending you lots of <<hugs>> - you really are such an amazing person, and you will get through this. 🤗

Oh no! Contaminated sandwiches! 😕
I am willing your nausea to go away.....

I'm in a bay of 4 beds. We're all on chemo. One has leukemia and the rest of us have lymphoma.

Sharing the bathroom is the worst.

Hair has been falling out for a couple of weeks and is getting really thin now and the top of my scalp is tender. Not let DH at me with the clippers yet.

Sandwiches apparently carry risk of listeria.

Have a gooogle for Nourish food replacement drinks by jayne Clark....I'm told they are quite nice

Heres a link:

Edited to say, link goes to unavailable product. Sorry.

https://www.amazon.co.uk/Nourish-Jane-Clarke-Alternative-Replacement/dp/B093CBVGTL#:~:text=Each%20drink%20provides%20a%20targeted,%2C%20chocolate%2C%20raspberry%20and%20mango.

Extract from my endoscopic ultrasound report:
"a large volume intra-abdominal disease with a large small bowel or mesenteric mass..."

I think this is what is blocking the small bowel and the food gets as far as my stomach but can't pass further so it sits there for a while then comes back.

This is only my theory but the doctors kept suggesting things like thrush in my oesophagus as causing the nausea but I've been on antifungals for ages so it can't be that.

The chemo does seem to be working on the abdomen. I've not needed extra morphine for ages (beyond the regular morning and night one) and I don't think my tummy is quite as swollen.

This is only my theory but..

I thought doctors were taught to listen to the patient - you end up doubting yourself and yet you know your body.

If you can feel a difference already that sounds like very positive news.

That’s great about the chemo feeling like it’s working already. I really hope a solution can be found for your vomiting, it must be so awful and you need the nutrition. Thinking of you 💐

Lots of love to you. I read all your updates and really hope a way for you to keep down food is found

Good that the chemo is kicking in ....

Technically I am a third of the way through the course of chemo (I've had two of six cycles) so it really ought to have started working. It's just this sickness that's causing me grief. So far, I've only been sick once today, at lunch time.

One of my cell mates has just been released. She had her first cycle of chemo and had no bad reactions, so hopefully she will continue to improve. It's encouraging to see others get better.

One of the ladies who was in this bay when i first arrived had an extremely bad reaction to the drugs or an infection or something. She had been moved to isolation by the time I got back here, and she died a couple of days ago. That was very upsetting.

Oh i can tell that was a shock. Whilst remembering her, let's celebrate that one other has gone home a step closer to being well x

That must be so upsetting - sad news.

Lost another 2kg. Who needs mounjaro?
Best diet ever.

Hello Joy. Sending warm wishes along the motorway.

Have you thought about involving PALS or asking your husband to do so?

I recently had an out patient issue and they were great. I was very surprised actually. A seemingly intractable bureaucratic computer says no issue was resolved in 24 hours.

I found Huel meal replacement drinks reasons palatable. You need nourishment you can tolerate!

*reasonably

@Words M1 or M62?

M62 :)

Poor you :( I hope the sickness stops soon if they find an anti sickness medication which you can tolerate. I also hope the food gets better and you get home soon. Sounds like a catalogue of errors from beginning to end for you. I don’t suppose it is easy for you to fight the system to make them accountable in your current condition either.

I hope you get home soon.

That really is such sad news.

@Ohjoyohbliss the death of a patient, I find truly upsetting. I do remember last year, a young woman, dying as she lay. I a closed my curtains and my ears, tears streaming.

Have they sorted your anti sickness yet? I do hope so. Have you managed to eat and drink today?

Right, let's have a third attempt at getting home from hospital. Several days ago, they told me that all my meds were on the ward ready to go home. Unfortunately, they switched one yesterday, so we are still having to wait for the TTOs.