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.)

Health wise, nothing new to report. Fed up of having no energy and little interest in doing anything. Probably need to push myself more, especially on doing chores and stuff round the house instead of leaving it all to DH.

I shocked DH tonight; he came home saying "I've learned something today... about upside down pineapples." Me: "What, that they're the new pampas grass?" DH: "No.. " Me (realising that he probably doesn't even know about pampas grass) "Swingers?" DH: "Yes - how do you know that?" Me: "Mumsnet. I learn everything from Mumsnet."

Now I won't be able to wear my trousers with a pineapple print any more or DH will think I'm sending messages.

New fridge freezer has been installed. DH dealt with everything (apart from paying for it!) We have to let it settle for a few hours before we can turn it on.

Glad to hear about the new fridge freezer. I learned about pampas grass from Mumsnet. Now I know about pineapples too!
I wouldn’t push yourself at all. I did, still do occasionally, and really pay for it if I am not careful.
Is a cleaner an option at all for the house stuff?

Great you got your fridge freezer :) I found really funny the conversation about pineapples 🍍 I do learn lots from mumsnet too! Please do not start doing chores. Save your energy for when it's worth it, something that is worth remembering like walking in a lovely place, go for a nice coffee or meeting a friend. Hoovering the floors is not worth remembering! Save that for when you are fully recovered xx

I had major abdominal surgery in January, I pushed it a bit when I came home and regretted it, now five months later I am tackling slowly all the stuff that dh missed and it really didn't matter as much as I thought it did.
I am now realising that maybe my new Summer dress ( Pineapple and tropical bird print) was maybe not the great success I imagined - ah well at least it will leave people guessing! Why am I the last to know about these things?

I'm a hoarder so the house is too cluttered to have a cleaner. This is part of the reason I need to be doing more.

DH learned about upside-down pineapples from friends who are going on a cruise for the first time and have been researching it. Apparently it originated or at least has become a big thing on cruise ships 🚢

Thanks for enabling me!

I had minor abdominal surgery years ago and when recovering, I suddenly decided I needed to wash the windows, when it had been several months and I hadn't been bothered. Mad!

Your new dress sounds lovely; enjoy wearing it. If you're married, maybe don't tell DH about upside-down pineapples.

Windows do though become important to you when you are stuck in recovering so I think there was a certain logic to your madness!
I've been married over 40 years, I shall just keep a discreet silence about upside down pineapples...........

Today's trousers

Just back from shopping. We hadn't done an online shop because we wanted to be sure the new fridge was working so had to go in person. Only to a small M&S food store, because I thought I could cope with that better than a big (but cheaper) supermarket. I hate shopping with DH because he has an awful tendency to disappear with the trolley. To be fair, he probably hates shopping with me too.

At least today I could hold on to the trolley as I needed it for support. Before we went, I had the notion that I could nip next door to Aldi afterwards but in the event I was exhausted after pottering round M&S and just wanted to get home. I'll have to bear that in mind when thinking of any future trips.

I love your trousers and their ambiguous pineapples!!!
Aldi prices are not so great these days so you didn't miss out on much, you did well to get round a small M&S, I think all supermarkets use up a surprising amount of energy.

Hope the cooler weather finds you well Joy. I genuinely saw an upside down pineapple outside a cabin door on the last night of a cruise we did recently. DH and I got the giggles big time - we’re very mature!

Sorry to hear you were exhausted in the shop. Maybe would be wise to send your husband with a list or maybe some online shopping. I do hate food shopping and also dissapears with the trolley! Mind yourslef. Love your trousers 😀

He doesn't drive. We went together yesterday so I could drive (now I'm allowed to again) but he could do the actual shopping if it got too much for me. Usually we do it online and have it delivered.

I used to do the supermarket shopping on my way home from work and I used to buy what I thought he would like, but he complained about it one too many times, so since then it's been his job. It took a while to transfer the mental load as well - for a long time I would have to remind him "We're running low on xyz, need to add it to the list" because he would wait for things to run out. I still do that occasionally (especially loo roll, because I really don't want to run out of that,) but mostly he's got it.

I was only going to look at toiletries in Aldi as I like some of their Lacura range.

So it is a real thing, not an urban myth? Was it a real pineapple or something like a sticker?

Sorry, I should also have said, I hope you are making a good recovery from the surgery.

Shopping wipes me out at the best of times - you did well!

Take it steadily and try not to be cast down if you feel overly tired. Last November I could barely walk a few steps to the emergency ambulance. Recently I did a very long walk. Knocked me out for days afterwards mind you. Yesterday I managed farm shop, supermarket, outdoor shop, B and Q and pet store, driving myself. Unthinkable a few months ago. I still suddenly get tired and if I do, I just go to bed.

Although I am very aware you are still in the midst of treatment, so it is very different. Thinking of you often. 🌺

My DH was very tired for the first 3 months after CAR T Cell and it gradually decreased over the next 3 months. He was pretty much back to normal after the six months (and he is in his late seventies).

@Ohjoyohbliss Obviously I’m missing something! Please explain the pineapples ?!?!!!
Leave out no details……I need to be educated
I’ve tried to quickly look up threads….. but to no avail…..

See my post 31/05/2026 00:46

Yesterday afternoon I saw the consultant. I asked if my IgG level could be tested to give me an idea of what precautions I still need to be taking wrt infection prevention, now my neutrophils are back to pretty much normal levels. (I was given a print-out of my last bloods but it didn't include IgG, so I assumed they didn't do it.)

She said that they did, in fact, test it last time (i.e. two weeks ago) and it was still low. I don't remember the exact number (my notebook is downstairs) but it's within the threshold to give IVIG, except they won't for me, because you have to have recurrent infections to qualify for IVIG and it has to be approved by a regional panel. I said I'm not asking for IVIG right now, I'm just wanting to judge my infection risk. She said it's high, especially for viral infections, and I still need to take every precaution.

Obviously getting rid of the cancer is top priority, but quality of life is a close second. I want to be able to go to the pub quiz and choir and watch the football World Cup in the club with other people. I want to eat in a restaurant and go to shows, exhibitions, travel a bit (in this country for starters.) It would be very dangerous to do any of those things right now.

It does seem a bit weird that I'm on a load of prophylactic medication to protect me against all sorts of things but they won't give me the immune system boost which might make some of the drugs unnecessary. And that to qualify for the treatment to prevent me from catching infections, I first have to catch some infections, which would most likely mean ending up in hospital on oxygen and IV antibiotics again. Of course there's also a risk that the infections could kill me.

So I'll continue risk assessing every situation, wearing masks in public and avoiding crowded places. On Friday afternoon I'm planning to visit an indoor craft fair. I'm hoping that will be the quietest time, compared with the evening and the weekend. I will wear a mask. (Hopefully my trip to Leeds for the blood test will be in the morning as usual and I will be home by lunch time.)

Link to NHS guidelines, for my future reference. It does say what the consultant said about needing to have caught infections, but it also says
"In patients developing hypogammaglobinaemia associated with B-cell aplasia as a consequence of Chimeric Antigen Receptor – T cell therapy (CAR-T cells) targeted against B cell or plasma cell antigens, the prophylactic use of Ig in the absence of a burden of severe infections and vaccine challenge may be appropriate"

and

"Use of Ig post CAR-T cell therapy in B-cell lymphoma:
The need for Ig replacement in patients receiving CAR-T cell therapy for B-cell lymphoma is variable ranging between 31% to 64% in published studies highlighting faster B-cell recovery in this group in contrast to patients with B-cell acute lymphoblastic leukaemia"

ccp-for-the-use-of-therapeutic-immunoglobulin-england-2025.pdf https://share.google/pUfwvbTUWtauPpulj