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 and hoping you get more rest tonight. x

Thanks, everyone.

Yesterday I was very restricted because I was on the first drip for eight hours and then another one for over six.

The first one finished while DH was here, so they disconnected me briefly and he helped me to shower and change. I had been unable to get dressed with the drip. (I don't need help with the actual shower, but I have to put a waterproof sleeve over my PICC line and it's so much easier with three hands than one.)

I can sense I'm waffling.

The drips and me drinking gallons meant that BP was high enough not to need the drip overnight. I slept much better although I had to wee lots of times. Every time I did, I drank a glass of water. Obviously it made me go more but kept my BP up, and it's remained ok all day.

The doc said that my red cells/haemoglobin are dropping day by day and I will need a blood transfusion tomorrow. (I think he wanted to do it today but I was reluctant.)

Other than that, I'm ok.

Thanks for the update Joy as I’ve been checking all day to see if you had x

Glad you managed to keep your BP up and all was ok through the night etc.

Have a good nights sleep tonight lovely x thinking of you x

Glad that this day's drip is done with - tick!

Reading all your updates @Ohjoyohbliss and following with love and positive thoughts. Hope you managed to get some good sleep last night x

I didn't sleep particularly well and feel extremely tired. My temperature is creeping up; it was under 37 for the first couple of days, low 37s yesterday and 37.8 just now. I don't think they do anything until it's over 38 here, unlike Pinderfields where 37.5 was the trigger for action.

No sign of breakfast yet; I think they have forgotten me.

Just after I wrote that, breakfast arrived. I had porridge.

Ridiculous questions: "Have you opened your bowels today?" "Yesterday morning." "But not today?"

"It's 6 am. Give me a * chance!"

Of course I haven't had a pooh, I've been waiting for my breakfast which is late!

Oh god, I think they ask questions without thinking in the hospital.
Hoping the temperature will go back to 37. Thinking of you every day Joy. I did have transfusions and went well. xx

Haemoglobin level has dropped further so I will be having a blood transfusion today.

I'm feeling tired so I hope it will boost my energy levels.

Come on now - no shilly-shallying over a poo! - unbelievable!

I hope the transfusion will help to improve your well-being. Good luck with all today's treatments. Each day is a step in the right direction although it may not feel that way.

It’s good they’re acting by doing a blood transfusion. Rather than ‘wait and see if it goes up’. You’ll feel brighter after that I would hope x
Have you been given a menu for today? Or do they just tell you options when they arrive? Can hubby bring you any ‘treats’ in?

I hope the transfusion helps you have more energy. How is your temp now? Well done on drinking all that water. I hope your feeling OK. First week almost ticked off now

As suspected, my haemoglobin had dropped further, so I had the blood transfusion at lunchtime today.

My temperature went over 38 this afternoon. This could be due to the CAR-T treatment, the blood infusion, or an infection. They can't take chances with immuno-compromised patients so I've had paracetamol, bloods taken for cultures, IV antibiotics, a chest X ray and now I'm on an 8 hour drip of fluids with vitamins and minerals in it. It'll finish at 3am. Sigh.

Oh Joy. I am sorry. It sounds exhausting .I hope the transfusion has helped

I also had to do a throat swab and a urine sample.

Here’s hoping the transfusion and drip, drip, drip helps xx

It’s good they’re being thorough but you must be shattered

Hi Joy, sorry to be out of the loop. My mum was admitted to hospital a couple of weeks ago with severe anaemia (not severe amnesia as was put in her NHS app 😂). They did a CT scan and it’s not good news. Massive tumour in her colon, liver mets and a lump in her breast. She’s already had a thorough work up in the breast clinic and strongly suspect it is cancerous but basically said “it’s the least of your problems”. So we’re on the treadmill of waiting now. I think the MDT team met yesterday, so assuming she was discussed then I guess we’ll hear from them in due course. Mum is coping very well but really struggling to eat as she has an unbearable taste in her mouth.

I’m so encouraged to hear your progress (the good bits anyway). Your PET scan results are so encouraging and hopefully the CAR T-cell will sort it out once and for all. Keep advocating for yourself, I think we were raised to just obey medical instructions but age and intolerance for nonsense empower us all. You have enough of a hill to climb without others making it more difficult. You’re doing brilliantly x

You will be nocturnal after this joy.

I'm so sorry to hear your news about your mum Gymnope.

@Ohjoyohbliss They’re nothing if not thorough. Feel better soon Joy. I’m hoping the IV fluids (with the vitamins, is the bag a bright yellow?:) and the blood products help you turn the corner.

Keeping my fingers crossed for you Joy. Hoping bloods and vitamins will start doing it's effect. I'll be thinking of you xxx

Hope you’re feeling a bit brighter this morning Joy x I’m still waiting with my next steps …

Hopefully you won’t feel as much of a pin cushion today, fingers crossed x

Thinking of you x

How’s your temp this morning Joy? Did you get any sleep?