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.)

This is ridiculous. When I went back to radiotherapy after the X ray, I told the lady at the desk that the doctor had messaged to say I would be late but I'd now had the X ray and was ready for radiotherapy. She seemed to find it on the computer and said take a seat.

Patient after patient was called in, but not me. I went back to the desk and was told that I was still showing as in the queue to see the doctor, therefore the radiographers didn't see me as available. 20 mins after that, I had my radiotherapy.

At the end, they said I had to go back to the doc for the X ray results. Back we went, checked in at the other reception desk. After a while the same nurse came over to say he had bleeped the doc and they hadn't forgotten me. Aaaaages later the nurse came back, said the X ray is clear and I can go home. Phone the emergency number if I get chest pain or the breathlessness gets much worse.

Arrived at the hospital around 11.20 for 11.30 nurse appt and 12.00 radiotherapy. Left at 3.10 pm. Almost four hours for pretty much nothing. Then of course the schools were out so the journey home took ages. Not been back long.

I don't have anything useful to add, I wish I had. I hope they find the root cause of the shortness of breath and the lump and hoping there is definitely not a clot.
Take one hour, one day, one week at the time. Thinking of you xx

What a crapola day Joy! Give yourself some ‘you’ time tonight, even if it’s a bubble bath with a lit candle, or some fresh cozy pyjamas, a film and slippers, if anything food or drink isn’t doing it for you because of the diarrhoea?? Currently drinking the ‘clear me out’ prep ready for further ‘clear me out’ prep about 3am (!), and then being in hospital at 0800 in the morning! Groan!

Thinking of you and sending a cyber hug (if they’re still a thing).

I hope it all goes well for you tomorrow and they don't find anything bad. What are they looking for?

I don’t know really … I’m on a ‘NHS 2 Week urgent cancer diagnostic pathway’ due to some dodgy blood results (which have been slowly getting worse over a few years, but can’t get to the bottom of - but now 3 more readings have gone into ‘too high’ parameters), and I have lost 10kg in weight in the last year without really realising, which has triggered me on to this further testing. I subsequently have done a negative FIT test (poo test for colon cancer). So we will see. Hopefully they’ll find nothing and it’s just ‘unexplained’. But will update either way. Thanks for asking, my issues are minimal compared to yours.

@Ohjoyohbliss One of the problems associated with diarrhea is an electrolyte imbalance particularly your potassium levels. You might want to ask your doctor about that (I ended up in the hospital on a monitor because of it. A 2 week nightmare).

oh Joy, you’re really in the trenches at the moment, no respite it seems. How is your husband now?

Having said all that, I'm still [relatively] well at the moment and able to enjoy life. I went to choir last night (sat at the back with a mask on) and I'm meeting my SIL for a meal out tonight.

DH is fine now (other than tiring easily) and he is with me today. We've been to the cancer support centre and I've joined the (months long) waiting list for acupuncture. I don't know whether I'll be able to have it when it comes up, but if I say no, they just offer it to the next person on the list.

Now we're in the Maggie's Centre. They offer various sessions and courses but the ones most suitable for me aren't at good dates and times, except for a Look Good Feel Better on 9th March, which I've booked. That's my last day of radiotherapy.

Now we need to go back to clinic where I have what I think is a Future Planning appointment, i.e. "You need to make a will before having the CAR-T."

Crikey, a busy day! But rubbish about the acupuncture. What’s the point of a big waiting list to someone going through cancer treatment now?

I hope the ‘future planning’ is less grim than you think. Good for you with getting on with life, I hope your meal out tonight is fab x

That sounds very busy, and it is absolutely great if you are up for it :) Just to say my local cancer support group was great. For me it was finding people who were in the same boat or have been in the same boat
That made me feel "normal" somehow. I remember those days as not feeling like a normal person but an outsider. After a few years I realised there is no "normal", we don't know everything that goes in people's lives. Whatever makes you feel go, do it. All the best OP xx

I hope the ‘future planning’ is less grim than you think.

Basically she had a list of questions for me to talk through. The last was "If it doesn't work and you don't have long left, do you want to be in at home or in a hospice?"

I said hospice. DH and I hadn't actually discussed this but end of life care at home is very hard for the partner. I think back to my DM, who deteriorated over a bank holiday weekend and I couldn't get anyone to come out to her, which was distressing for all of us.

It’s important you have whats best for you and having experienced personally an end of life situation, it’s good you were able to get that in writing at this stage. You can always change it if you change your mind as things process, or as you discuss it with your partner.

Sending much love and strength as always Joy.

How are you feeling now Joy? X

@Ohjoyohblisshow’s your stomach doing? And appointment schedule for the week? Thinking of you x

Great! Everything is going well. Saw the oncologist on Friday, which was basically just "How is the radiotherapy going for you?"

Answer: It’s fine. She said they had expected me to be sick (nausea and vomiting) but I haven't. Mentioned the diarrhoea and she said that the first Friday/Saturday was a bit early to get that as a side effect and it might just be something I had eaten (fish & chips?) or an infection - but I didn't have a raised temperature at all, unlike DH, who had a high fever with his illness.

She said not to expect the PET scan to show the cancer has completely gone. I never expected that - my understanding was that the radiotherapy is to shrink the tumour, or at least stop it growing, to give the CAR-T the best chance of working.

I'm driving myself to and from all my appointments (feels so good to have the freedom to drive, even if it is just to and from hospital.) And I'm trying to do as much as possible with the rest of my time. Yesterday I had a family meal at my aunt and uncle's. Today I went out for afternoon tea with a friend. I'm seeing other relatives next Sunday. We're taking MIL for a Mother's Day meal as a small thank you for everything she's done for me. I'm trying to arrange a Book Club meeting this week or next.

My hair is growing. Life is good right now. If only I didn't still have the cancer, and the scary CAR-T looming.

Thanks. Stomach much better. I've had one more day of diarrhoea but mostly it's been fine.

Radiotherapy five days this week (and the last one next Monday.) Psych/counselling on Thursday (telephone) and oncologist on Friday (in person) and that's all for this week.

I'm thinking of you too. I read your other thread and it sounds awful. I hope they can find some answers for you.

I’m so pleased you are handling the radiotherapy so well. You deserve a break. Glad your DH is on the mend too. X

It must feel good to know you are able to cope with the radiotherapy and get a bit if normality back.

I feel that I've got my life back, and life is worth living. But always at the back of my mind is the knowledge that in two weeks' time, my life will be on hold again for at least a few months and possibly years. I'm trying to make happy memories to keep me going through the difficult times to come.

I just read your latest updates OP. It sounds like you are making the most of your time. Hoping the improved weather conditions are also having a positive impact on you. Lovely to hear your driving yourself, meeting friends and family and doing things you enjoy. Just take one month at a time max. I know it's difficult not to think ahead but it's probably easier that way. Hoping the counselling will help too. The most helpful thing for me was to meet people in similar situations. Thinking of you xx

Had a little walk this afternoon. 1.38 miles according to Strava. The sun was shining, the birds were singing and the little lambs were frolicking.

That sounds lovely. And well done!

I'd like to go away for a night or two next week, because I won't be able to travel again for months. I've started a thread asking for hotel suggestions but I don't know if I will get any answers.

www.mumsnet.com/talk/uk/5499410-yorkshire-dales-or-peak-district-hotel-recommendations

Hi OP. I'm glad you are enjoying the sunshine. Good idea to go on a weekend away. I don't live in the UK but in Ireland, so I can't help. The sun is shining here too after two months of constant rain. I love watching the birds in my garden. I'll go for a walk when I finish work and will think of you. Well done on your long walk. Strava is amazing and a great motivator. x

I've been asked to join the Aleta trial for my CAR-T cell therapy. I'm not sure how much detail to go into on here. I explained CAR-T up thread and that the success rates are less than 50%. ALETA-001 is a biologic CAR T-cell engager, which means it somehow boosts the CAR-T to work better.

It was being given to patients whose 30-day scan after CAR-T still showed some cancer, then it gives the CAR-T a bit of a kick start to do its thing. But now they are giving it 10-18 days after the CAR-T infusion (I've been told I would have it on day 10 as long as I didn't have bad side effects.) So at that point I would have no idea how well the CAR-T was working and whether the boost might or might not be necessary.

The main thing that worries me about the trial is that Phase 1 is to determine the safe dose to give people. What if they give me an unsafe dose? I'd be ok signing up for Phase 2, which is giving people the safe dose ascertained from Phase 1, and measuring how well it works.

They've given me some information to read (I haven't yet) and, if I'm going to do it, I have to sign up a week on Monday. I know it's important for patients to do these trials, to benefit future patients. The chemo I had was relatively new, and the CAR-T even newer, and obviously someone trialled those, and I'm benefiting from that. Mind you, CAR-T was originally a "last resort" treatment when several others had failed, so a "this trial is the only option or you will die soon" is an easier decision to make. It's only very recently been approved as a second line treatment.

I'm already terrified of the CAR-T. The thought of being given what turns out to be an unsafe dose of Aleta makes it even more frightening. But part of my anxiety is "What if the CAR-T doesn't work?" and Aleta makes it more likely to work.

I'm so conflicted.