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.

I hope you manage to perk up in time for Christmas xx

I'll probably still be quite poorly by then, but we don't have any plans, so there's nothing to spoil.

My blood pressure is low (the top number didn't get over 95 today, and it was measured lots of times). Plus I have postural hypotension so it drops even lower when I stand and start to walk. Combine this with the anaemia and I'm not very mobile.

Well, I'm sending you hugs 🤗

Hang on in there - it is so awful knowing that you are just waiting to feel ill. Sending a handhold.

Sending a gentle hug x

Having gone through the cycle a few times now, I know that I'll probably get a sore throat on about Thursday for a few days and will feel mentally and physically down next weekend. But I also know that I will get through it and will start to feel better in week three (New Year week) and because there's no chemo at the end of that week, hopefully the feeling better will continue and build.

Just calculated my weight loss and I have lost 2 stone 4lb as at yesterday. I've been wanting to lose weight for years and never managed it, so it's not entirely a bad thing.

However, I have lost a lot of muscle mass through being so inactive, especially in September when I caught the infection and was bed bound on oxygen and IV antibiotics for ages and eating virtually nothing.

Now I have to build my strength but hopefully without putting all the weight back on. Not difficult at the moment as I am only eating small portions, but once the chemo is out of the way, we shall have to see what happens.

I love your positive attitude Joy. I'm sure you hate all those "battling cancer" stories but my friend many years ago was diagnosed with a cancer and was told there was a 10% chance of recovery. She was determined to be in that 10% and she was! All the very best to you.

I know from previous cycles that in a few days' time I will probably be all doom and gloom for a week or two. I'm trying to reinforce positive feelings as much as possible.

I don't tend to think of this as a battle, more a journey I'm on, but I do love to hear positive stories like your friend's. How wonderful for her. Thank you for sharing it.

Now this is what I needed to read!
Thanks for sharing and all best wishes to your friend.

It’s definitely a journey @Ohjoyohbliss with plenty of ups and downs, twists and turns. I’ve everything crossed that chemo has obliterated your cancer.

I’m in the “ rough” phase now. Hoping to feel better in a week or so.

Can you do something Joy for the next day or two? Something fun or relaxing before the rough bit kicks in? I hope it’s not as bad as previously, but I also hope the chemo has kicked the cancer’s butt, once and for all x

May I gently ask how old you are? If you don't want to answer it's not a problem.

I'm only asking out of human curiosity.

And I hope you're finding yourself perk up slowly every day.

Sending others on here in the same situation a gentle hug too. x

It's horrible knowing what is coming. But like having a second baby, you know it's something you have smashed before. Do stay on here Joy and let us cheer you up in the days the chemo kicks in. You never know, your body might be a bit more used to it this round and it might be slightly milder. Maybe have a think about some amazing chocolate or takeaway for new year that you can enjoy in week 3.

Try to park the muscle loss. I'm on WLI and there's no avoiding loosing muscle when the weight comes off. You can deal with that in 2026. I'm great Believer in parking things that are not urgent. Just park that. Have a Google of easy ways to do resistance or weights for future days but honestly that's a job for later.

My son is 18 and has dyspraxia. He has had swimming lessons all his life but can't swim still. He has just started adult evening swimming lessons. There are people in their 80's learning to swim. So there's nothing that can't wait for another day. Like the inspirational 80 year olds swimming up a storm, you can be lifting weights next year, or the next, or when your 80. Right now just get through this day and the next. If you can lift a cup of tea to your lips ( or a cup of gin!) Your winning this week!

Thank you everyone.

No gin for me yet - my liver and kidneys don't need any extra stress right now. I did ask the consultant on Monday if I can have a little tipple at Christmas and he said "Yes - but don't tell us!"

I'm thinking maybe a Bucks Fizz.

A Bucks Fizz sounds a good shout. I’ve a bottle of Prosecco in the fridge. Cheers! 🥂

I fell yesterday. Crouched to get something out of a box, lost balance when trying to stand up and just kind of rolled backwards onto the floor. Didn't hit my head, wasn't physically hurt but it was a shock and I was upset. This low blood pressure and anaemia combination is potentially dangerous and I need to be mindful and not take risks when DH isn't around.

This morning the District Nurse has instructed DH in what to do if I faint (basically, raise my legs above my head and then get me up very, very slowly.) I've been told to get up very slowly, but I'm in the part of the cycle when I sometimes need the loo urgently, so getting up slowly is a luxury I don't always have.

Hope you are ok. That sounds worrying.

Is the urgency to go o the loo, something you could discuss with the DN or Dr. Its actually a common reason for a fall or accident.

It's a side effect of the chemo; it gives me the runs for a few days. It will settle down by next week and then I'll probably get constipated. All good fun.

@NotPerfectlyAdverage
You never know, your body might be a bit more used to it this round and it might be slightly milder.

This was my expectation when I started, but the effects have been more cumulative, and each time has been as hard or worse in terms of weakness, blood pressure, anaemia etc.

The massive difference is that they give me Akynzeo (a strong anti sickness) now, which has been a huge help in the first few days after each chemo session.

That's a pain. Does the chemo build up or wear off fast? I guess the good thing is it shows it's working but still it's a bit crap. You'd think your brain at least would be 'oh this again, let's block the sickness off '.

My poor cousin was so ill the night of her first chemo. They almost had to consider stopping it. It's just a horrible disease and the treatment is brutal. You'd think you catch a break some how.

How are you feeling now? Are you feeling Christmassy?

So if you could have a Christmas tipple what would you drink? My friends say the Bombay sapphire alcohol free gin is very nice. I would need to find a alcohol free version of ginger wine. But things like ginger ale remind me of morning sickness. Then you associate that taste with feeling rough.

@NotPerfectlyAdverage
The worst point of each cycle is the 7-10 days period, which I'm just entering.

A bit of a sore throat today, which I expected, as it has happened the last two times. The expected diarrhoea has also materialised, which led to panic stations earlier (but I made it. ) Sorry for TMI.

Likely to get a bit of a temperature and lose my appetite over the next few days. Unless the temperature is sky high, I won't be ringing the emergency number or going to hospital.

Knowing what to expect does help me to get through it.

I've had a consultant appointment letter for early Jan but no date yet for the PET scan. Wondering how long to leave it before chasing the PET scan. The sequence is supposed to be scan, MDT, appointment.

Having said that, it will be difficult to get to Leeds for the scan until January, so it might be better to leave it for now. Of course, I do want to know ASAP whether the chemo has worked.

I'd be tempted to chase the scan now before Christmas. I'm not sure how much time office staff get off, but there must be an element of a Christmas wind down. I'm just cynical as we all know things get lost in the system at times.

I'm sorry to hear about the upset tummy. Feels very tempting to set up camp on the loo at times like that. The only worst thing is being sick when you're back and forth from bed to the loo. Big hugs, I hope this part passes quickly.