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.

Good that they’ve boosted your appetite, but the side effects aren’t wonderful :(.

How are you feeling this morning after your first dose of chemo?

I found IV steroids a big help. They gave me an energy boost for a day afterwards which was repeated every cycle of chemo. No side effects that I recall, of course they do have side effects if used long term.

How are you today @Ohjoyohbliss

Thinking of you Joy and so pleased that you have started the treatment , it would be amazing for you to go home soon.I am glad you have today over with and you and your husband are together.Sometimes a little cry helps , especially if you have been holding it in for so long.
Big hugs

I've been sick several times today. It makes it very difficult to eat or drink anything or to take my meds because it all comes back again and I feel horrible.

Don't know if it's yesterday's chemo or some of the new meds that I'm on today. Whichever, it feels awful and I keep getting told off for not having taken my pills, but how can I?

@Ohjoyohbliss Ask for cyclizine, metoclopramide or ondansetron. All
are decent anti sickness. They can administer IV or syringe driver. Ondansetron can cause constipation
( be warned!)

Don't suffer, they can sort this for you.

That sounds horrible 😩 Can they give you anything to help with the sickness?

I am sorry you are having such problems with nausea .... it is so exhausting and deeply unpleasant. Please ask for something to relieve this ..... there are options. I am surprised you have not already been given these. It is so very hard to swallow pills when you are feeling sick. They must understand this.
I have so.much sympathy with you as I am on a raft of meds and have constant low-grade nausea and I hate it. My heart is with you.

Don't let them tell you off 😥 Point out it's not a choice your making to be sick.

Ask them what the solution is if it's as obvious as to stop being sick..how are they going to fix it? Big hugs ❤️

Anything nice to look forward to? That's what I do when I have something horrible going on. But granted that doesn't work when I'm sick, sick. That's one of the rare times I'm mindful and living in the moment unfortunately.

@Ohjoyohbliss really hoping they have given you some good anti sicknesses. If you are persistently vomiting, you may need it through the drip.

You poor thing, if the nurses aren’t responsive to you then mention it to the doctor when you see him. If I remember rightly you can have anti-sickness suppositories/pessaries and there may be alternative methods to your meds also. You shouldn’t have to suffer like this.

Sending a hand hold x

Wondering how things are going today - hoping very much that the nausea is being dealt with. x

Also wondering how you are@Ohjoyohbliss
Really hoping the sicknes is under control.

I was sick again yesterday evening despite having had it better controlled during the day. That was just after I had taken some medication, so it messes everything up.

Today I've been prescribed an anti-sickness drip to be run automatically three times per day, although I didn't get the 2pm one until almost 3pm despite asking twice, as I was feeling queasy, then it was another hour before I could get any morphine. The staff work really hard, they are under so much pressure but even though I know other patients are just as ill, I want the nurses to deal with MEEEEE!

This morning I refused to get out of bed, take any meds or eat until I had the anti sickness. I'm doing what I can.

Dietician gave me a big scare today, saying I'm eating nowhere near enough and that poor nutrition correlates with poor outcomes for this treatment, and that if I don't eat more, I will have to have a feeding tube up the nose and into the stomach. I really, really don't want that.

So hopefully the anti-sickness regime will help with the eating.

I'm sorry you're feeling so bad. It will get better.
Chemos are all different but most have similar side effects to different degrees. Often they come for a few days after the treatment then clear up until next time.
Any prospect of you going home? Because when you do they will give you all the drugs to take with you and at least you don't have to wait for staff to get round to you.

So sorry to hear how poorly you’ve been feeling, it sounds awful, especially when staff don’t get round to you when you need the medications to enable you to keep down the treatments and food. So frustrating and I’m sure the stress doesn’t help. Thinking of you and hope tomorrow is better for you 💐

I'm so sorry, Joy. That sounds awful and so frustrating xx

I don't know if you are up to reading it but I've attached a link to a web site of a woman called Kris Carr who has had in incurable form of cancer for 21 years. She's written a toolkit which includes things you can eat/take to help support chemo etc and may help with some of side effects.

I've no idea of it will be of use but thought I'd rather let you know than have you suffer in case it helps.

Sending love and support xx

kriscarr.com/chemo-radiation-side-effects/#scroll-here

Are you able to drink Huel drinks? Or heck, any sort of milkshake or smoothie?

I went through a phase when I was struggling to eat when I first started treatment, but I ideally needed to eat at certain times because I had to fast other parts of the day (my treatment is daily and I have to fast before). I started having a half of a Huel shake here and there when I could. It’s something rather than nothing.

I was addicted to Macdonalds shakes

Doc has just done ward round. More indignity in store for me (don't ask!) but if it works, looking at going home possibly as soon as tomorrow or Thursday.

Despite the indignity, about which I won’t ask, the doc must be pleased with you and confident of your progress. Keep going Joy. x

Yes, and it will be good not to have to wait for the drugs, but I won't be able to have them IV which has really been what has helped the most.

I'm not sure if I fancy it right now, but I will bear it in mind. Thank you.

I started on Huel & similar at home when I lost my appetite (part of the symptoms. ) Here I'm on Fresubin Energy but I've struggled even with that.