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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

See all MNHQ comments on this thread

Likely ovarian. Terrified. Anyone available for a hand hold?

983 replies

Ohjoyohbliss · 29/07/2025 19:15

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.

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GRCP · 27/08/2025 16:29

Hand hold xx
I had OC and am fine now - in case it is that.

Ohjoyohbliss · 27/08/2025 18:09

chatgptsbestmate · 27/08/2025 15:52

You are my hero! Honestly, I think you're amazing 👏 💖

I am very, very far from amazing. I'm just trying to get through one day at a time, in the hope that eventually I can get some treatment which will make me feel vaguely human again.

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Ohjoyohbliss · 27/08/2025 18:10

GRCP · 27/08/2025 16:29

Hand hold xx
I had OC and am fine now - in case it is that.

It's turned out to be lymphoma.

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Ohjoyohbliss · 27/08/2025 18:23

Flinderskleepers · 27/08/2025 16:26

Rasburicase is the drug you've probably had!

That looks right. Thank you!

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NotPerfectlyAdverage · 27/08/2025 18:54

That's annoying about the pain meds and waiting. I'd be really tempted to ask how I should be looking and should I start screaming? But my dry humour has missed the mark before.

I remember when I was in labour I refused to do anything until I had my epidural ( it was my third birth and I was induced due to pre eclampsia and epidural reduces blood pressure). But it's easier when you have some power. I was like no I don't want to turn over until I know the epidural is coming, no I won't try for a wee, no I won't try some gas and air, no I'm not giving birth or moving until I get my epidural. End of. I think I asked the anesthetist if he wanted to marry me in the end as I wasn't in much pain until I finally moved after being curled in stubborn ball for hours.

It was the most assertive I had been in my life. I'd still be in labour 13 years later if I hadn't had the epidural 😄

Pain sucks as no one can see it and it's so hard to explain. When someone doesn't belive you, that then adds to the pain. I wish there was a way to hold it for you for a few hours so you can get a deep sleep. So all I can do I hope that's the case and you get some decent sleep.

Mischance · 27/08/2025 19:02

Ohjoyohbliss · 27/08/2025 18:10

It's turned out to be lymphoma.

Have they talked about a treatment plan?

Poodlelove · 27/08/2025 19:09

Thinking of you and so sorry that you have been having to fight for pain relief , I hope that they were able to go through a plan for you regarding treatment and that you are getting the answers you need.
Sending strength.

Yachtingaroundtheworldiwish · 27/08/2025 19:52

Thinking about you. My ex is living with lymphoma and he’s doing just fine.

Ohjoyohbliss · 27/08/2025 20:04

Mischance · 27/08/2025 19:02

Have they talked about a treatment plan?

Read my previous entries. Everything I know, I've written in this thread.

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Weepixie · 28/08/2025 00:02

@NotPerfectlyAdveragewish there was a way to hold it for you for a few hours so you can get a deep sleep

My darling mum used to say that about holding our pain. ❤️

Thank you 💐

Gymnopediegivesmethewillies · 28/08/2025 15:46

How are you today Joy? I hope they’re being more responsive with your morphine jabs, I can’t fathom leaving someone in pain or distress when it’s within their power to do something about it, especially commenting that you don’t seem to be in pain. Do they think you are in there to score drugs! It’s rude and demeaning and you’re going through enough. Unless you are otherwise being treated brilliantly I think a note to PALS when you feel able would be a good thing, it seems like a refresher in ‘how to treat your patients’ is called for.

Any news following your ultrasound? All the best.

Mischance · 28/08/2025 16:06

Hoping you are having a comfortable day.

Ohjoyohbliss · 28/08/2025 18:18

The waiting is over!!!

I have diffuse large B cell lymphoma. It is an aggressive cancer and, at the rate it has developed, I might not be long for this world without treatment. However, the good news is that it is usually very responsive to treatment, with a real possibility of a complete cure.

Treatment will consist of six cycles of chemo, spread three weeks apart. The first will start tomorrow and will be given in hospital over two days, with subsequent cycles done in a day as an outpatient.

The chemo consists of two monoclonal antibodies and two chemotherapy drugs. One of them can cause heart problems so I will have a heart scan before the second cycle. There isn't time to get one before the first session tomorrow, even though I was told days ago that one was being booked. They don't want to delay starting the treatment by even a single day, as the cancer is so aggressive.

This makes the long wait for the CT abdomen report even more frustrating. Can you tell I am still extremely angry about it?

The chemo can have some severe side effects and complications so I just have to hope that it goes smoothly. However bad, it's got to be better than the alternative.

Anyway, it's good news that I have a diagnosis and a treatment plan. I'm also feeling a lot better today, possibly from yesterday's IV steroids. Future steroids will be oral.

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Ohjoyohbliss · 28/08/2025 18:20

Wish me luck that tomorrow goes well.

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NewAgeNewMe · 28/08/2025 18:22

Oh what an awful rollercoaster you have been on
I wish you all the best going forward x

BeaLola · 28/08/2025 18:24

Anyway, it's good news that I have a diagnosis and a treatment plan. I'm also feeling a lot better today, possibly from yesterday's IV steroids. Future steroids will be oral.
Thank you for the update - so glad you have it & willing your treatment to go really well.

Whilst I have had cancer and radiotherapy mine was caught very early and whilst I'm very grateful and thankful for that despite find long lingering potential side effects I can only imagine how awful it has been for you.

Onwards and upwards please please for you and your DH.

Sunshineandrainbows23 · 28/08/2025 18:24

Hi @Ohjoyohbliss

I'm wishing you all the luck in the world for tomorrow and all your forthcoming treatment.

I'm so sorry you had to wait so long and totally get your anger

I'm so happy that you can now start your healing journey.

Love and hugs xxxxx

PermanentTemporary · 28/08/2025 18:35

All the luck thoughts to you. Hoping you get a break with the chaos factors.

Poodlelove · 28/08/2025 18:39

Wishing you lots of luck tomorrow and all of us here are going to watch you win this fight.
🙏🙏🙏

Mischance · 28/08/2025 18:46

I am pleased that things are now clear for you and the state of limbo is over. I am sue this is not the news you wanted but you now know what you are dealing with and can gather up your strength to face the treatment - it is good news that the this is responsive and that they are on it straight away with the first round. Wishing you luck for tomorrow.

Pennyplant19 · 28/08/2025 18:56

I’m so sorry, what a worrying time for you. Do try not to think the worst, I had a huge mass on my ovary, very high CA125 levels, literally in for surgery within days, and they found extensive endometriosis - the mass was an endometrial cyst - I’d never had any symptoms of endometriosis! Like you, I had immediately thought the worst, fingers crossed you have a similar result x

Ohjoyohbliss · 28/08/2025 19:09

@Gymnopediegivesmethewillies
I hope they’re being more responsive with your morphine

Still a struggle. Asked for some today early afternoon. Didn't come for a while so I had a quick wet wipe wash and got dressed (expecting a visitor later.) Emerged from behind the curtain to be told by my cellmates that someone had come with it but because the curtain was closed, they took it away again (without asking me if they could come in.) No nurses around by then and it took over an hour longer to get it.

I know that in my first few days here I complained about staff barging in to my room without asking so I guess I can't have it both ways.

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Ohjoyohbliss · 28/08/2025 19:11

@Pennyplant19 RTFT

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whatisforteamum · 28/08/2025 19:25

So glad you are getting answers and I hope the treatment is better tolerated than you expect x

Cattery · 28/08/2025 19:28

All best wishes to you ❤️