It wasn't ovarian, it was lymphoma

[Ohjoyohbliss]

My original thread is nearly full, hence starting this one.

I knew I probably had cancer in late July 2025 but it took until the end of August to get a definitive diagnosis: Diffuse Large B-cell Lymphoma, Stage 4.

I have had six rounds of chemo, the last of which was on 12 December. Had a lot of nausea and vomiting, plus an infection which left me hospitalised on oxygen and IV antibiotics for a while. I am extremely weak now, and waiting to find out whether the cancer is still active. (A scan at the half way point showed it was.)

Obviously things will be very different in 2026 and go one of two ways, depending on the scan result, which I will find out on Friday 16th January.

Previous thread:
https://www.mumsnet.com/talk/cancer/5382361-likely-ovarian-terrified-anyone-available-for-a-hand-hold

(Not sure why that takes you to the middle of the thread; sorry.)

Thinking of you Joy.

Thinking of you daily Joy … know we are here if you feel like sh*t in the coming days and no one else to talk to … and sending positive and healing vibes your way x

Are you doing anything today or tomorrow as its supposed to stay nice. The sun most definitely helps.

I'm so proud of you for saying no to the blood test. That's to make his life easier, not what's best for you. I had pre eclampsia and was swollen up like a hot air balloon when a midwife said to me "I don't think I will even try to find a vein. Shall I get a anesthetist?" I thought well actually no I don't want you to try and fail. Feels a bit weird saying no to those in power. But the anesthetist came, numbed my entire hand and I felt nothing at all.

Why have the line if it's not used? If everyone who says they don't know how to use it, prods you, that's an alfwul lot of proding over weeks. I had hourly blood draws with pre eclampsia. A midwife dropped and smashed a tube then asked if she could retake it. The urge to say "actually I'm not having this baby I'm going home now, let's forget it" was very high. Just one blood test too many sounds minor but it's actually the last straw. Stand firm. Your doing marvellously. Think of us sitting with arms crossed shaking our heads in approval.

Plus with doing the trial. Your doing your bit, they need to be eternally grateful I say 🤣

@NotPerfectlyAdverage
Are you doing anything today or tomorrow as its supposed to stay nice. The sun most definitely helps.

Erm... today: tests for the Aleta trial, followed by lymphodepletion chemo. Left home around 10:15 and got back some time after 4, after which I just rested. Tomorrow: lymphodepletion chemo. As stated earlier, Wednesday was my last day of freedom and now the having to avoid people due to infection risk begins.

Your experience sounds horrendous. It's similar in that pre-eclampsia is a life threatening condition so you know you can't afford to refuse the medical care, but all you want to do is say no to it all.

DH reminded me that when I was first in hospital last August, I rang him up saying come and get me, I want to go home. This morning I told him that I didn't want to go today. But in the end, I went.

Sending strength, Joy, and wishing you the very best for this next stage.
x

Today's chemo was fine, apart from starting nearly an hour late, with no explanation or apology. There are two components, the first an infusion from a bag via the pump, taking half an hour, and the second a bolus from a syringe, mixed into a saline drip. A great improvement on my previous Pola-R-CHP, which used to take six hours.

I had the Akynzeo (anti-sickness) well in advance and it's working so far. I managed to eat my tea without problems. I had a small episode of acid reflux this evening but I start taking Omeprazole tomorrow morning, so hopefully that will deal with it.

It's been nice not having too many pills to take for the last couple of months, but now I'm back to needing lots of them.

Your experience sounds horrendous. It's similar in that pre-eclampsia is a life threatening condition so you know you can't afford to refuse the medical care, but all you want to do is say no to it all.
DH reminded me that when I was first in hospital last August, I rang him up saying come and get me, I want to go home. This morning I told him that I didn't want to go today. But in the end, I went.

Do you know what? it made me feel better. Having my mini hissy fit. Dh was horrified when I said I'm off, where's the car parked?

But I think it's just a internal argument with yourself. Like you say it out loud. Your saying im done. I dont want to do this. I can't hack it.

Then the only voice you hear is your own saying "that's valid, but here we are. The alternative isn't a valid option right now, so let's crack on". Then I could be stewing against my better logic for the next few hours. Took my anger away from how unfair it was and it's better to be angry than scared for me. I was angry at logical thinking.

Plus I was secretly thinking that just buggering off was a solid plan B. i will have this injection then go home, give it a hour then i will go home. Have few contractions then go home.

Didn't think about the most likely outcome of giving birth in the car park....

Wishing you every positive outcome Joy. x

Day 2 of lymphodepletion chemo (which in the unit they call "CAR-T conditioning chemo") and I'm tired. Couldn't eat much tea. But at least I haven't been sick.

I bet you are tired Joy. Are you able to drink ok? I hope you can eat little bits of things you fancy.

Hope you can get some good rest.
Glad the anti-sick medicine seems to be working.
x

Thinking of you as you navigate this next step.

In theory, yes, but I'm struggling to drink as much water as I ought to, to clear the chemo from my system. I'm on Allopurinol to protect my kidneys.

You prob already know this but some people can manage jelly/ ice lollies which helps with fluid intake.

We have some ice lollies but I felt too cold (even with the heating on) to have one.

Hoping tomorrow will be a little bit easier xx

Sending you restful and healing thoughts this sunny Sunday Joy ❤️

I'm having an easy day at home today. I woke up early (for me) but it's lunch time and I'm still in bed. I don't feel too bad (bit of a headache and stomach ache) but I haven't tried to do anything as yet.

I need to do some washing and start packing my hospital bag ready for admission tomorrow.

Sending strength and the wish that everything will go well tomorrow.
X

Hope you are taking it slowly Joy. Don't forget to try fluids( in whatever form!). Sending positive vibes still.

Thanks. The CAR-T infusion is on Tuesday, but they are admitting me the day or more likely evening before. They may do some tests tomorrow but the scary stuff is on Tuesday.

Having said that, they said last week that the infusion itself is likely to be an anticlimax as it's just a couple of syringes stuck into my arm, contrasting with the T cell harvesting which involved hours connected to a high-tech whirring, vibrating machine.

Thanks. Still struggling to drink enough, but I'm definitely taking it easy. I do feel a bit weak.

I told DH yesterday that I wanted to do some washing today but he hasn't helped me with it and I don't know if I can manage to carry the laundry basket downstairs on my own. Maybe I can put it in a carrier bag and throw it down the stairs (hope it doesn't land on the cat.) Hopefully DH will be home by the time it finishes.

We’re all here sending love and strength over these next few crucial days Joy. If we could whizz round and do that washing for you we would! Get other half to do it when he gets in … and help pack the bag :). He would probably be annoyed if you tried to do it when he was out (I know this is something I would probably try to do myself, and my other half would be annoyed with me and give me a talking to!).

❤️X 🤗

@Ohjoyohbliss Thanks. The CAR-T infusion is on Tuesday, but they are admitting me the day or more likely evening before. They may do some tests tomorrow but the scary stuff is on Tuesday.

Yes, I realised after I wrote that of course there’s more to come after tomorrow. Sending wishes for a smooth admission process and that the infusion is as much of an 'anticlimax' as they've promised.
We're all thinking of you.
X

@Ohjoyohbliss I actually do that:) I haven’t hit a cat yet😍. Oh Joy, hoping and praying for the very best outcome.