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.)

Yes all of those! Everyone in French hospitals says Bon Courage, so will send that to you. 😊

Today's food farce: I ordered aloo saag (potato with spinach). I got aloo gobi (potato with cauliflower. ) I love spinach. I hate cauliflower. When I mentioned it, the catering staff said that's what they sent, maybe they didn't have the other. Surely then they should have told me and given me alternative options? After all, I ordered it yesterday.

The lovely student nurse who was in my room at the time said he could get me a toastie? I said I tried one of those, it was two slices of toast with a slice of cold cheese, not what I would call a toastie. He said they have a proper toastie machine in the staff room. I thanked him (autocorrect offered "shanked him!!!???) but declined as I ate the potato, the daal, the naan and a bit of rice, and I didn't want him getting in trouble.

Oh and I had to chase the ice cream I had ordered, but I got it eventually.

Proper nourishment is a pretty basic thing to be getting wrong.....

Nurse just came to do my blood thinner injection. She said that I might not have one tomorrow because my platelets have dropped so much that there's a risk my blood might not clot at all. So I might need a platelet transfusion or I might be off blood thinners for a while. I hope it won't affect my discharge on Monday.

Platelet level today: 55. Normal range 150-400. Not low enough to need a transfusion today. Blood thinners are under review.

Neutrophils 0.45. Not going up.

Sorry to hear blood cells count isn't great. Hope you aren't feeling too bad Joy xx

Sorry to hear blood results a bit off. Hopefully they might improve tomorrow.

Sorry to hear that the bloods aren't behaving themselves @Ohjoyohbliss . Hopefully you can still be discharged as planned - you musr be desperate for your own food and your own bed.

This does not surprise me re the antibiotic. A relative of mine is really allergic to penicillin- really severe rash:itching etc. it says it clearly in her notes.
Last year she was jn hospital and they gave it to her twice ffs. She’s an elderly lady who was quite unwell so probably didn’t think to check etc.

Sorry I haven’t posted in a few days … but you’ve still been in my thoughts Joy. Hoping the bloods have gone up a bit today so they can look at discharging and some normalty coming back for you. Given how worried you were pre-trial, do you feel any sense of relief yet that that bit is done? Sending healing vibes and will check in later in case we have any positive bloods news. x

I thought I'd updated but apparently not; sorry.

Yesterday my platelets were still above the line (just) but my haemoglobin had dropped again, so I had to have a second blood transfusion.

After that, I was allowed home. Yes, i came home last night. So nice. DH threatened to wake me at 2 and 6 am for obs, just to keep me in the routine, but thankfully he was joking.

I have a telephone check-up tomorrow, then back on Friday for bloods, line maintenance and a check-up in clinic

Next week will be busier. But right now, I'm relaxing at home.

Home .... just enjoy.

Great news you’re home Joy! Another hurdle, well, hurdled (with aplomb!).

Hopefully soon the crappy food (and cutlery) will be a distant memory :).

Karate kicked that Cart-T to the curb!

Rest up and relax now until next week. xx

That is lovely to hear. I hope you can enjoy some quiet spring sunshine and proper food in peace.

Enjoy the R&R at home and some peace from the obs (despite your DH’s humorous threat!) xx

Just catching up Joy. I’m glad you’re home. I hope the transfusion made you feel better? I’ll remember the tip about the Afro-Caribbean food, sounds much nicer than the beige nonsense mum was given in hospital a couple of weeks ago!

I bet it's blissful. Hope you slept well in the quiet of your own bed.

I'm glad to hear you are enjoying your own bed. Have a nice few days at home Joy. You so deserve it xx

Hope your time at home has been restful and restorative Joy

Hospital today. Bloods taken for the trial and saw the CAR-T consultant. She said that everything is progressing as expected. My neutrophils are still very low, so I still have to take a lot of care to avoid infections. She also said sometimes that's impossible, because we can have bacteria in our own bodies which can suddenly become a source of infection when our immunity is low, no matter how hygienic and careful we are.

She also said not to expect the PET scan (which is next Tuesday) to show no activity. It might, but the effects of the CAR-T can cause inflammation, which would show on the scan as activity, so don't panic.

My PICC line, which hasn't been used since Monday, had a couple of small clots in it. That's a bit worrying because I am hoping to keep it for months. I asked if they could put some hep lock in to hopefully stop it clotting over the weekend, which they did.

It's amazing the things I've learned since getting ill.

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.

You are the expert now!

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