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.

No problem, Joy. Just a thought :) XX

All suggestions gratefully appreciated.

There's a good possibility of being paroled on licence today (home!!!)

They need to arrange District Nurses to do the daily injections - neither DH not I feel able to do them ourselves; sorry if that seems pathetic.

Over the 2.5 weeks I've been in, I've accumulated so much stuff that DH might have to bring a suitcase to get it home. My little overnight bag won't cope.

I do understand the unease with daily injections, being on the fertility preservation means daily injections at the moment which I was genuinely terrified of doing.
We have managed it between my husband and I, a very sad bedtime routine now of cleaning my feeding tube and the fertility injections!
Maybe, and it's just a thought, but the pen I use isn't like a typical syringe and the needle bit is only about 1.5cm that goes into my thigh.
Is it worth asking what self injections would entail? Maybe even practice in the hospital?
Anything to secure your release IF the district nurses can't be put in place straight away?

Good news Joy.
If you can get the district nurse involved that's great. You may need them for other things. I'm not sure what chemo you're having but sometimes they put a picc line or port in your arm. It saves a lot of cannulas but needs dressing by a district nurse regularly.

I will keep my fingers crossed for you being granted parole!

You don't sound pathetic at all. Id be rubbish doing my own injections too!

How are you coping with the awful nausea now?

You don't sound at all pathetic. What usually comes to mind when we think about injections is a long needle that has to go into a muscle and unless you're a trained phlebotomist or you've had a diagnosis of DT1 since you were a child, you might well find it intimidating.

I'm not medically trained, but I've given a lot of injections in two very specific situations that didn't involve muscles. The first lot were retrovirals for our cat. These went into the subcutaneous tissue, the loose skin at the scruff of the neck and he hardly seemed aware of it at all. The second lot were Clexane injections for my DH after his cancer op. These were quick-stabby things, a bit like Epi-pens, into fatty tissue on his belly. He found them uncomfortable, but said that it was because the solution stung rather than the needle. I admit that I was quite ruthless about it, on the basis that it's better to pull the plaster off quickly. We were both pleased once they were done with, him because the jabs hurt, me because I was frightened of missing one and putting poor DH back in hospital with a DVT. He'd already had so much to put up with. Clexane injections came pre-loaded (IIRC, the ones for the cat did too) which made things much easier and I was given a little sharps bin for the used needles.

In your case, you're likely to need a lot more than just Clexane, so it might make things simpler if the nurse dealt with it for you, alongside everything else. I hope you get home today and your treatment progresses smoothly.

I have everything crossed that you will be let out on licence!

I did loads of needles in myself in the course of the years and I say 100% get the nurse in and go easy on yourself.

The nausea has been extremely well controlled for the last couple of days, but the drug they are using has very bad side effects over a longer period so I have to switch to a different one.

Adequate pain and sickness relief has really changed everything as I've been better able to eat, take meds, move around a bit... it's really transformative.

I'm just hoping it can still be effective once I get home on the different regime.

@Tortielady
I think I could manage epi pen clicky type jabs, but not actual visible needles. I can't even watch when the nurses do it. DH is even worse; we'd probably need to get the paramedics to him!

IIRC, Clexane has a retractable needle that retracts as soon as it's delivered the dose. It's very easy in itself; the problem is getting over the psychological barrier. I did it by reminding myself that DVT is horrible and very dangerous and that we'd get our lives back faster if we didn't have to be available for a month of daily nurses' visits. Of course, this might be a bit moot for you if you have to see the nurse anyway.

Hoping that you are released today to go home x

What antiemetic have they been using? And what one are they switching to? I'm glad the meds are helping, just being to eat and move around makes a huge difference.

I'm really glad it's been well managed the last few days. I can totally imagine what a difference it has made

I will keep my fingers and toes crossed that the new drugs will help just as much and it all continues to work once you are back in your own home xx

Hoping you are back at home now Joy, with no bureaucratic or medication snarl ups. You're going through such a hideous whirlwind at the moment.

How are things going? 🥰 Thinking of you

Hope all is okay @Ohjoyohbliss

Joy's DH here
Joy picked up an infection and was readmitted Saturday night. On IV antibiotics and fluids, slowly improving but still very poorly.

Am so sorry to hear that, hoping she improves as soon as possible.

Oh goodness! Thankyou so much for updating us here on MN. Wishing Joy all very best wishes for a fast recovery. 🌺🌻

Wishing Joy all the best nd the same to you Joy's DH.

❤️

Thanks for your update. All the best to Joy and to you. 💐

I’m really sorry to hear that. Sending much love to her. Thank you for the update Mr. Joy.