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.)

So good that the wind has lightened....

😂 a relief for everyone I would think! Glad you’re doing so well x

I'm very happy to hear everything seem to be improving, even slightly but that's an improvement. Great news Joy. x

Hoping the weather has continued to improve!! Any word of when you can escape?

Doc has been. Haemoglobin over 80 but platelets are dropping. No infusion yet but keeping an eye on it. Neutrophils up to 0.2 - he seemed to think that's lower than it should be but I'm just happy that it's risen a bit.

Ordinarily, that would be soon, but because I'm doing the Aleta trial, I'm staying in. All being well, I will receive ALETA-001 on Thursday and will then have a couple more days monitoring.

Good re haemoglobin over 80 (mine drops below 80 at times and I’m meant to be healthy and am not receiving any treatments) … but definitely hopefully that neutrophil number goes up a bit before Thursday …

What day did you get the blood transfusion? How are you feeling today - getting a little less wobbly?

I’m going to call my consultant re cancellation slot after the long weekend, as can see him at 10/15 mins notice if needed.

You’ve got this Joy 👊🏻 and I’m hoping you mentally feel a bit less worried about the trial now you’re this far through it xx sending strength and thoughts through the ether ❤️

Fingerprick diabetes reading is 8.5. Apparently that's a bit high. Temperature has gone up to 37.8. I've asked for paracetamol.

Hello Joy. I remember your original thread and just came across this. I've read it all and it's grim but your sense of humour shines through, I feel like I know you.
I hope it's cathartic for you to be able to keep this thread going.

I'm doing well again today. DH helped me with the shower sleeve and once I was dressed, we went for a little walk along the corridors. I'm allowed out of my room now (masked up and avoiding busy areas, but it's Bank Holiday weekend so everywhere is quiet.) I even attempted some stairs, which I wouldn't on my own.

Hi Joy. I'm happy to hear you are out in the corridors and even trying the stairs (with some help). Hoping your temperature and sugar levels went down. Wishing you a peaceful Easter Sunday. Thinking of you xx

Still good. Haemoglobin and platelets are holding up, white cells rising nicely although neutrophils remain low.

They won't give me GCSF to stimulate the bone marrow to produce neutrophils (as I had after each round of chemo previously) because it can interfere with the CAR-T cells. I'm not sure how long that applies for. It may be affected by being on the ALETA trial - I've added it to my list of questions for Tuesday.

Had another walk off the ward and even onto the balcony but it was too cold and windy to stay there long. Blew some cobwebs away.

Steady progress ... perfect! Sending Easter/Spring wishes ...

Good to hear Joy x blow those cobwebs away! Can you get hubby to bring you any treats in now you can manage more? Is your next dose Thursday, and then that is it (once you’ve recovered)? Or do you have to have more after that?

I did a bit of research online today re my CBD (common bile duct) being dilated so I’m prepared for my next appointment in a few weeks. It looks like one option they sometimes do is an ERCP procedure which is a stent going in endoscopically (potentially just under sedation) to the struggling tube, while they take a sample at the same time of whatever is causing it to dilate to analyse what’s blocking it (ie gallstone sludge / cancer / other options??), so maybe that’s why the appt is with the endoscopic specialist surgeon, rather than general surgeon … etc etc, and maybe it’s to discuss that etc. Either now or in the future if things worsen 🤷🏼‍♀️🤞🏻. But having a faulty bile duct is a reason for the weight loss, blood results, even worsening of my itchy / dry / psoriasis skin, so even though I’m not in agony, I’d rather start fixing whatever is starting to go on, particularly if it’s nasty, than wait until I am! Calling his secretary Tuesday for cancellation appointment options just in case. 🤞🏻🤞🏻❤️❤️

Keep up the good work on keeping us up to date with you, even with random hospital food choices or communication breakdowns. All good to look back on for yourself xx Happy Easter 🐣❤️

@jjourneys

DH brings treats, as did a friend who came with him on (?) Wednesday.

Today I've been visited by a Hug on a Tray lady who brought a care package. Soap/flannel/toothbrush and paste/puzzle book/mini notebook and pen/knitted heart/Easter egg/Biscoff all in a fabric tote bag. How nice is that?

The CAR-T infusion was a one-off. What I'm getting Thursday is the ALETA-001, which is designed to boost the CAR-T. That will be given fortnightly for 12 doses so almost six months.

Do contact them Tuesday and don't take no for an answer! I'm getting stroppier as I get stronger; channel my energy!

Got it! Channel Joys stroppy energy 🤣!

Will let you know how I get on x

That Hug on a Tray sounds wonderful - someone has put thought into that. Simple things such as remembering to include a pen. Hope you scoffed the egg.

The Aleta trial specialist nurse has just been to see me and I'm going to the research unit at this afternoon for an ECG (and maybe other tests.)

I'm still eligible for the trial because I haven't had any ICANS (neurological side effects of CAR-T therapy) and my CRS (physical side effects) was grade 2.

My bloods are still where they expect them to be. Neutrophils are up to 0.5. They can't take me off the antifungal meds until they increase to above 1, and I can't switch the blood thinners from injections to pills until I am off the antifungals. So five or six days to climb to 1, or I will need District Nurses to come and do the daily jabs again. Sigh.

Food service is getting worse. Yesterday my main course should have come with garlic bread (it's the future!) It didn't.

For today, I had ordered pudding. It didn't come. When I asked for it, I was told "There's none left now."

I wonder if I'm being targeted for repeated complaints about the [lack of] cutlery hygiene?

I asked to see the alternative menus for tomorrow and I've ordered from the afro-caribbean menu. Fingers crossed 🤞

Joy I'm glad to heat everything is going well so far. Hoping you will be able to switch from injections to pills soon.
Dirty cutlery is not acceptable, even less in a hospital. Sorry to hear that. It's great you complain, you don't want any issue while immunocompromised.

This is getting ridiculous. Ordered an evening snack (ordered yesterday, for today.) It hasn't come.

I was weighed yesterday. I haven't gained any since admission, so why have they suddenly decided to starve me?

Crikey that is super frustrating. How can they expect you to get better if you don't get enough food?

Wth! Get hubby to bring M&S care package of foodie delights in! I feel this is what is needed as this stage of affairs! Bring out the big guns :) x

This looks ominous. I don't think I'm going to have any blood left!