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Cancer

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

It wasn't ovarian, it was lymphoma

670 replies

Ohjoyohbliss · 06/01/2026 15:47

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.)

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8
Boudy · 18/04/2026 19:31

Agree with other posters. You are advocating extremely well. But you shouldn't have to.

Ohjoyohbliss · 18/04/2026 20:00

Notmycircusnotmydonkeys · 18/04/2026 11:02

you are a fabulous advocate for yourself, Joy, but it gives me a moderate amount of rage that you (and everybody else navigating complex treatment and conditions) need to be.

It does worry me that at least two doctors have tried to give me an antibiotic to which I am seriously allergic. Also I'm very glad that I was prescribed it quite a few years ago so was able to find out I was allergic as it was the only thing I was on.

With the cancer treatment, I was given a whole load of new (to me) drugs all at once, plus the chemo-immunotherapy, so how would we have known what was making me ill if I had an allergic reaction?

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Ohjoyohbliss · 18/04/2026 21:04

Manyredpoppies · 18/04/2026 11:46

Agree with the comment that you are a great advocate. You are now possibly going through the worse part of it. Will keep thinking of you and a steady recovery xx

The chemo I had last year was far harder, physically, than what I'm going through now. Admittedly it has weakened me again, but I'm still on my feet and can go upstairs in one go, whereas I had to go to appointments in a wheelchair and needed a sit down half way up the stairs a few months ago.

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Manyredpoppies · 19/04/2026 23:37

It is good you can feel the difference and feel stronger compared to last year. You are strong, both physically and mentally. I am really hopeful you will start to see this end of this, Joy.

Ohjoyohbliss · 20/04/2026 14:45

Doctor just called for a telephone check-up and she had my blood results from Friday. They are all good.

LFTs (liver function tests) - one shows slight inflammation, but that's not unusual after CAR-T. Others are in normal range. Kidneys excellent.

Haemoglobin is over 100 so is maintaining well since the transfusion a week ago. Platelets still a bit on the low side but still ok.

Best of all, the neutrophils are over 0.7, the highest yet. Once it reaches 1, they can start to reduce the amount of medication. 💊 It’s brilliant news that it's increasing by itself.

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Boudy · 20/04/2026 14:51

Fantastic!

Ohjoyohbliss · 20/04/2026 14:54

I'm staying off alcohol to give my liver a chance to recover. Lovely DH has bought me a bottle of Tanqueray 0% (it's on offer at the mo,) so I can enjoy a G&T.

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Boudy · 20/04/2026 14:58

Lovely Joy. Enjoy...chinchin

ElleBelleLou · 20/04/2026 16:41

Hi Joy

I’ve been following your posts from the beginning and wanted to let you know how inspiring I’ve found you throughout. Your resilience and the way you’ve advocated for yourself has me in awe, it's something I'd love to have myself.

My mother‑in‑law has recently undergone cancer treatment at Jimmy’s for a different diagnosis, and my twin sister receives outstanding care there on an ongoing basis due to cystic fibrosis - sometimes it has really shown me the best of the NHS, and I hope that's something you get to see & benefit from.

I’m just round the corner if you ever need anything from an internet stranger - thank you for keeping coming back and keeping us updated. X

Mischance · 20/04/2026 16:47

Progress!!!

Budsonthetrees · 20/04/2026 19:11

That's great news 😁x

Showdogworkingdog · 20/04/2026 22:18

So pleased to read this, brilliant xx

Ohjoyohbliss · 20/04/2026 23:38

@ElleBelleLou
I’m just round the corner if you ever need anything from an internet stranger

Just round the corner from Jimmy's?

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Strollingalong · 21/04/2026 00:24

Really pleased to read this Joy. x

ElleBelleLou · 21/04/2026 11:43

Ohjoyohbliss · 20/04/2026 23:38

@ElleBelleLou
I’m just round the corner if you ever need anything from an internet stranger

Just round the corner from Jimmy's?

Work round the corner from Jimmy's but I live in Wakefield - close to Pinders so v familiar with everywhere you've been gracing!

jjourneys · 21/04/2026 20:27

Ohjoyohbliss · 20/04/2026 14:45

Doctor just called for a telephone check-up and she had my blood results from Friday. They are all good.

LFTs (liver function tests) - one shows slight inflammation, but that's not unusual after CAR-T. Others are in normal range. Kidneys excellent.

Haemoglobin is over 100 so is maintaining well since the transfusion a week ago. Platelets still a bit on the low side but still ok.

Best of all, the neutrophils are over 0.7, the highest yet. Once it reaches 1, they can start to reduce the amount of medication. 💊 It’s brilliant news that it's increasing by itself.

Amazing news on the blood results Joy x sending positive vibes that all continues in that direction! Remember back when you were so worried about the negative consequences of the Car-T and yet now, well, you’ve smashed it.

You deserve some treats me thinks!

Two weeks until my appointment 🤞🏻❤️. It will fly by. xx

Manyredpoppies · 21/04/2026 22:21

Hi Joy, I just read your update and I am so so happy for you! I'll have a little celebration in your behalf tomorrow. Had a rubbish day at work, this really made my day.

You deserve this, you are strong and amazing.

Ohjoyohbliss · 21/04/2026 22:38

Well, today was very stressful.

TL;DR: I had bloods taken and my PET scan but didn't get to see the doctor. And I might have a UTI.

Schedule:
11:30 Trials unit for bloods
12:15 Haem outpatient dept to see the doctor
13:00 Nuclear medicine dept for PET scan - I had to fast all morning for this

Taxi arrived promptly and got us there in plenty of time. Bloods were taken, the only slight delay was that they wanted a urine sample and it took ages for me to produce one.

Nevertheless, we got round to outpatients just after 12, to be told that the doctor wasn't there yet and it would be around 12.30. I went out on the balcony because I feel safer there than in the waiting room, but DH stayed in the waiting room so he could hear if I was called.

Around 12.30, the CNS from the trials unit came and found me on the balcony to say the urine sample showed signs of infection. Lovely. I don't have any symptoms. She said she would let the doctor know, although the doctor still wasn't there.

By 12:55, still hadn't been called, so we let the receptionist know I was going for my scan. (The scan was originally booked for 09:20. I asked if it could be later and was told no, but when the trials team asked them to make it later, they somehow squeezed me in at lunch time. So I knew the scan dept was full and I couldn't afford to miss the slot.)

We were still waiting for the lift when the CAR-T CNS came chasing after us and said we really needed to see the doctor and she would phone the scan people to ok it with them. She also said that they called my name once but I wasn't there. DH is adamant that when I was on the balcony, he was listening out for my name and it definitely wasn't called.

So back we went to sit in the waiting room. Time passed. I wasn't called. My phone rang - the scan team to say am I in the building because if I didn't get there straight away, I would miss my slot.

Went down to the scan dept. The CNS then phoned me but I was receiving the radioactive dye by then, so DH took the call. The message was that the doctor will order the Aleta etc for Thursday and will see me on the ward after my admission tomorrow. I don't think she will - normally the ward ask me to arrive in the evening and I doubt that the consultant will be working at 8pm.

Honestly, they don't seem remotely able to coordinate between the departments and I found it incredibly stressful being told different things by different departments and not knowing whether I was coming or going. Added to which, I hadn't had anything to eat all day because you have to fast for at least six hours before the scan.

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Boudy · 21/04/2026 22:46

Blimmin heck Joy. Sounds exhausting. Why,just why, can't they be flipping organised?

Boudy · 21/04/2026 22:47

Have you looked into those Jelly Drops a pp mentioned a while ago? Am sorry it has been so disjointed and muddled

Ohjoyohbliss · 22/04/2026 00:11

What were the jelly drops for? I wasn't allowed anything other than plain water until after my scan - not even chewing gum.

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Boudy · 22/04/2026 08:15

Ah..they are for hydration Joy. For when people have difficulty keeping up fluids. Not sure if they have just plain water ones.

Gymnopediegivesmethewillies · 22/04/2026 15:30

Joy, I’m so pleased you’re doing so well (UTI aside).

Hospitals can be the most frustrating, inefficient places. Not inspiring when your life is literally in their hands. It’s often not the individual staff, they’re very often great and dedicated, it’s the ‘machine’ as a whole that is so grindingly slow and baffling.

And don’t get me started on parking or navigating the hospital itself!

Mischance · 22/04/2026 15:47

Head in hands! - just head in hands! It is extraordinary how the same service can encompass medical and scientific miracles alongside the most crass inefficiencies in organization. Grrr ........

Sbmpp · 22/04/2026 19:56

@Ohjoyohbliss So sorry to hear about all the red tape you’ve been put through. I’m wishing you better coordination. I’m sitting here having my 23rd dose of chemo. So tired of it. To top it off my palliative care doctor is on vacation and the doctor covering refuses to refill my pain medication. I think that I’m going to be going through withdrawals 🤷🏻‍♀️. I’m putting you on the prayer list (from across the Atlantic). I hope you receive all the comfort you deserve. In a timely manner too!