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.

@Ohjoyohbliss it might just be better than where you are. There will be more to see, people to chat to, hopefully better internet, and there will be less chance the staff will forget you.

@Ohjoyohbliss Have you heard anything from your gynaecology consultant from the MDT meeting yet? Have they added or made any changes to the plan or keeping the same till biopsy results and endoscopy? Hope your doing well and the bay is nicer for you. Not having Internet is sucks to be honest.

No. The haem consultant checked the system yesterday afternoon but there was nothing on there from gynae. I'm in a different hospital from the one where I saw the gynae consultant but he may work across both (it's the same Trust.)

A shared bay is never going to be better than a single room for an introvert and non-morning person like me.

At least the WiFi is working but there's no phone signal here either. I don't want people to chat to!

I'd arranged for my Financial Advisor to come and see me today. Would have been fine in a single room but I don't want to discuss my finances in a room full of strangers.

Can you get out of bed? If so sk if there is a private room you can use. Sometimes there is a family room that people,use

There is, and I've asked if I can book it but been told no, I just have to see if it's free at the time.

Let me put your mind at rest about a shared room.

27 years ago I was in hospital with placenta praevia from around 28 weeks with 3 other women, all of us due the around the same time, and all of us having pregnancy complications & on bed rest. We weren’t allowed our own rooms as we were all at risk. We are still friends years later.

We would get our partners to bring us evening takeaways, if we wanted a treat, had a shared tv and got into a little routine. Dh still says now that he could hear us all laughing as he’d be walking down the hallway.

What I’m saying is it may not be too bad!

I'm struggling to eat* at the best of times. While trying to eat my breakfast today, one patient was discussing her bowel incontinence with a nurse, then another used a commode. Behind a curtain, so at least I couldn't see, but only a curtain so nothing else was left to the imagination.

Wanna have another go at putting my mind to rest?

• A request was put in on Tuesday for the dieticians to see me. Apparently they normally come the next day. I'm still waiting. Don't get ill in August!

Could you pay for a room even though you’re in an NHS hospital? Not that I think you’d be happy anywhere right now given the circumstances but perhaps if you could put your mind to making the best of which ever kind of room or bed you're in for the sake of your mental health it would help you.

And your financial adviser - granted the bay isnt the place to chat to them. Can you go to a day room, a relatives room perhaps? Ask the nurse if theres a place you could have for half an hour. Or could you maybe cancel them coming until you can guarantee the privacy you want? At home probably even a couple of weeks from now.

@Weepixie
There is a "quiet room" and I've asked if I can book it but been told no, I just have to see if it's free at the time.

Joy - as an extreme introvert myself you have my utmost sympathy. People who are not in our tribe simply don't get it déspite the very best intentions. Shared space and no privacy is the last thing you need at the moment.

Oh bless you I was just trying to put a different spin on it to try and help. I wish you all the best x

Is there a cafe where you could meet your FA? At our new’ish hospital, there’s a large Costa with comfy seating in bays which would be quite private - and good wifi there too!

How is your DH coping Joy.?

In the event, the Quiet Room was available so all was well on that front.

He's trying to put on a brave face for me, but he's struggling. Especially when people come up to him and stroke/pat him and say 'I'm so sorry..." with a sympathetic head tilt.

With the financial adviser, I wanted to talk about worst case scenario but that upset him (DH, not FA.) I'll have to have that conversation another time.

I've given DH the day off tomorrow so he can have a normal Saturday of pub and football and hopefully take his mind off it a bit. I have other visitors lined up.

Oh bless you both.

It's pants, bless you both, and let's hope things get sorted for you soonest

I wish I knew what to say, but I don't, I hope they can sort your pain relief too

When I was last in hospital the person two beds away from me had the shits and being sick 24/7. There's no dignity and I knew her medical history inside out after two days.

Thank god I lost 100% taste and smell during covid that lasted for over a year ( never fully came back either).

The only distraction I had was a woman who screamed randomly and another two ladies in various degrees of dementia. Everytime one of them went to the loo she decided something had been stolen. I gave up reassuring her when she said someone had stolen her dressing table.

Yesterday afternoon there must have been lots of visitors to the men's bay because they took all our visitor chairs for them.

Today I've asked for them back and been told that there's infection in that bay so we won't be getting them back. So now our visitors have nowhere to sit.

Speaking of infection, the lady in the bed opposite me has pneumonia and the one to the side of me also has some kind of chest infection. If I develop an infection before Tuesday, they won't do the endoscopy and I NEED that endoscopy. I have a minor panic attack every time they take my temperature.

@NotPerfectlyAdverage

That sounds like an absolute nightmare. I know relatives have experienced similar in the past. Thankfully my fellow inmates aren't too bad, and the drugs I'm on help me to sleep through most of it.

You have my sympathy OP. To be honest the last place you need to be is somewhere you are being exposed to infection. Ask about the side room again. Pay if you need to. How are you feeling in yourself, ca. you get dressed and got and meet your friends in the coffee shop in the hospital, or go outside for a bit?

I’m so sorry you have this wait, seems cruel to me, even if it’s unavoidable.

Can you ask for a mask. We had to wear them.during covid. Really not great but it might help you feel like your doing something. They have probably come in with chest infections and not contagious.

You may remember me saying the best case scenario is that the armpit biopsy results give a definite diagnosis by early next week so I can start chemo sooner. However, that was thought to be unlikely.

Well, today the doctor on ward round told me that the first results indicate that the armpit samples are going to yield sufficient material for a diagnosis, after all. Several samples were taken during the biopsy, with some being analysed here and others being sent to Leeds. The local results are in and they are sufficient to confirm lymphoma, but not to pinpoint exactly which one - apparently there are over 60 types!

This is fantastic news as it means that there may be no need for the endoscopy on Tuesday, and treatment can begin a week earlier than if we were waiting for results from that. So, fingers crossed that the results come back from Leeds to confirm one way or another.

It's probably not often that the news "Hey, yes, you've definitely got lymphoma" is greeted with "Yay! It's lymphoma!"

I am pleased they now know what they are dealing with, even if they don't know which type.

Just knowing can bring a sense of relief, because you can plan, they can plan - and frankly that's a huge step forward.
Let's hope the next few days delivers an attack plan