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.

And my blood pressure has dropped too much for them to increase the rate of the infusion. I've not had this before in previous cycles. They are making me drink lots of water to try to raise it. Of course, this will make me need the loo.

Yes indeed you will need the loo. Having to navigate the loo whilst attached to that machinery, is a task and a half.
You can do this @Ohjoyohbliss🤞

It's not as bad as when I had the infection and was on IV antibiotics plus oxygen, so I had to try not to get the oxygen line tangled up or compressed by the IV stand.

Many a time I’ve been tangled and just couldn’t move for wires round my body
( how I don’t know!!)

It’s a pity they can’t just sedate you while it’s being done, at least you’d get a good sleep out of it!

Yes, with the long Infusion they have to do obs every half hour, so I was just dozing off and get woken up to have blood pressure taken.

The rest of the chemo has gone well. Just having a saline flush and I'm done.

Well done, another week over. Do you have anything nice you can do or eat today? You deserve a treat x

Nearly done for today. Hope the blessed nausea leaves you be. Rest up now ...

I got stuck on the loo once trussed up with oxygen and IV lines. The bathroom floor slopes and the IV stand rolled down the slope and behind me, trapping me with one hand behind my back.

I pulled the red cord but it was a male HCA who responded. I asked him to get the female nurse to help me. He said he would, but in the meantime could I please press the button to reset the alarm so it didn't keep going off. If I could reach the button, (on the other side of the room,) I wouldn't have needed helping! No, I can't reach the button. No, you can't come in to do it, I need a female as I'm in a state of undress.

He did get the nurse eventually and the alarm continued until she came.

What a palaver!

Glad you got for rescued.

I remember being in a&e once awaiting admittance for a Crohn's flare up. Was connected up to a drip with no drip trolley. Had to do an urgent poo (Crohn's specialty) so DH ended up running behind me all the way through the busy department to the loo (bare ass on display through the hospital gown as I frantically sprinted) carrying the drip bags behind me as I ran. Poor guy had to hold the bags up while noisily shat in the loo once we made it . So alluring 😂. We are divorced now. Hospital dramas never show this stuff 😬

I had the blood test yesterday and they said I'm not anaemic enough to need a transfusion.

Overnight, I developed a sore / swollen throat which has persisted all day, and I have tummy ache, but the latter is normal at this point in the cycle. I had a sore throat one or two rounds ago and it took several days to go. I hope this one hurries up. I feel rough.

It [weather] was supposed to be mild today but I've needed the heating on all day. My temperature seems to be ok, though.

I've just read back my previous posts and the sore throat last cycle started on day 7, which is today, so it seems to be a regular feature now. One I could do without.

@Ohjoyohbliss still here, keeping a weather eye, and wishing you all the best. Hope the sore throat settles down soon. It's hard to put myself in your shoes, so i just think of you every day and send my positive thoughts through the ether, for what it's worth. Lots of hugs and hoping you nail this fucker. 💐❤️

That sounds really pants @Ohjoyohbliss keep on pushing through. FWIW I kept a diary through chemo, which helped me track side effects - sore throat at certain stages for me too. I look back at it and am in awe of anyone going through chemo.

I've been running hot over the weekend, starting Saturday afternoon. I'm supposed to ring the emergency number if my temperature goes over 37.5°C, but when you do that on a weekend, they just tell you to go to A&E, which I didn't fancy.

My O2 sat is ok (well, at least over 90, whereas it dropped to 70 when I had the bad infection in September.) So I have stayed at home and today it's back below the magic number (mostly.) Hope it stays that way. Also managed to eat a bit of proper dinner today, something I haven't been able to face for a while; I've got by just on toast.

Hopefully this means I'm over the hump from the latest chemo and will get stronger over the next week and a half.

That’s great news OP that the temperature regulated itself. Fingers crossed for a better next week! And good that you were able to eat some more. Eating is always a great sign. What is the next step? Do you know when your next round will be?

Yep, temperature is normal today.

Next (and hopefully last) chemo is on the 12th. Some time after that I will have a repeat PET scan to see if there is still any active cancer. I really hope not, because the treatments get more drastic from this point, and I've found this chemo regime difficult enough.

They won't scan for a couple of weeks after the final chemo, to give it chance to do its stuff, which takes us to Christmas, so realistically it's likely to be into the new year before I know.

I was scrolling back through my old social media posts and I chanced upon my "word of the year" for 2025. I'd picked one, then promptly forgotten about it.

BRAVE

Totally Go You @Ohjoyohbliss . So happy to hear that your temperature is behaving itself. And 'brave' is a great word. Can I beg to add 'hope' and 'love' for your experiences to come. All the positive vibes and hugs. 💐❤️

Consultant appointment yesterday. It's the first time I've seen the consultant since being discharged from hospital; it's been a junior doctor at my previous outpatient appointments.

He's happy for Friday's chemo to go ahead. This will be the last one. If the mid-point PET scan had been clear, they would leave it six weeks before doing the final one, but because mine wasn't, he said two weeks. I said "That will be Christmas!" so he said it will probably be early January, then they will discuss at MDT, so it will probably be mid Jan before I know whether I'm cancer free. Here's hoping! If not, the next step is likely to be radiotherapy rather than more chemo.

The waiting will be difficult. I've been quite unlucky with timings: diagnosis took longer than it should have done, because of summer holidays, and now the results are going to be delayed because of Christmas.

I'm an anxious worrier by nature so I'm going to work hard on being positive.

Sending you so many positive vibes 🌹

Yes sending positive vibes too x

The waiting must be just horrible @Ohjoyohbliss . Head down for what is hopefully the last chemo. Sending love and positive thoughts x

Forgot to set my alarm last night for this morning's early start, oops! I had already laid my clothes out last night so it wasn't too bad and I arrived just after the chemo unit door was unlocked.

Now I'm home again after my final 6 hour chemo session. All went well, as it usually does on chemo day, although I'm tired.

Now I just have to get through the next two weeks of feeling shitty and then try to build up my strength.