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.)

Cripes Joy. They are being greedy!!

Very nearly an armful!

Blimmin heck!

I'm about to receive the trial drug for the first time. I'm a bit scared.

Oh Joy. I can imagine that you are and it is not surprising. You have already been through loads. I am sending extreme positive vibes!

I hope all goes well today.
I have been thinking about you but lost your thread. You sound like you might be in a hospital near me

DH's record just before CAR T Cell was 30. The results kept arriving for me to print out and file for days. It was useful to know he didn't have rabies.... 🤔
Glad to hear you have been feeling a bit better. DH sends his best wishes.

I'm in Jimmy's.

That's definitely more than an armful of blood.
You should be being tempted with delicious food instead of "no pudding"!
When I was in hospital I was impressed by the efforts to put decent meals in front of patients but it went wrong so often!

Record of what? Test tubes of blood taken? I didn't have anything like this many before CAR-T, at least not in a single day.

It's frustrating here because I don't get to see any results whereas at Mid Yorks I could see them on the NHS app; not immediately but a couple of days later.

Yesterday I had a lamb curry with rice and peas off the Afro Caribbean menu and really enjoyed it. I'll be ordering it again if I get chance.

Had to demand my evening snack (cake of the day) yesterday. "There is no cake." "Well, I ordered cake, so there should be." I felt like I was in the Matrix - there is no spoon.

Turns out she had parkin, but didn't count that as cake.

That is a mega lot of blood letting!

I am sorry to hear about the food situation. In my many hospital sojourns the food has been bland but plentiful. And as for the dirty cutlery ....... hmm ...

Hoping all goes well for you today.

30 little pots. That is France though.

I must have had 30 in total yesterday:

2+ at 6am (didn't pay much attention but it's always between 2 and 4)
20 before the Aleta
1 straight after the Aleta (well, after the flush)
4 about an hour later
4 more another couple of hours later.

That's a lot of blood taken. Wishing you all the best with the treatment.
Delighted to hear you found food you enjoy. It's the small things, specially in the hospital. Wishing you all the best xx

Fun & games on the ward:

Drug trial CNS: You won't be having your early morning bloods tomorrow; one of the trials team will come and do them later in the morning.

Me: Oh, that means I 'll have to be awake enough to refuse.

CNS: No, they know about it, don't worry.

Ward nurse at bedtime: You won't be having bloods at 6am

Same ward nurse at 6am: Good morning, I've come to do your bloods...

More fun & games:

"Good morning, what do you want for breakfast?" "Porridge, orange juice and a milky coffee, please."

I came out of the bathroom to find an orange juice, a milky coffee and what looked like two slabs of cardboard and some milk.

Porridge and Weetabix don't sound remotely alike, do they?

I worked in the NHS for many years and the medical things are state of the art and excellent; but the communication is and always has been very poor. It is so frustrating. But I have to say that your hospital seems to be in a league of its own!

I haven't even mentioned the worst thing. Yesterday evening the ward nurse came in with a big bag of pills: my TTOs for Monday, from the Trials team. I had a quick look and one was an antibiotic to which I am seriously allergic! Are they trying to sabotage the trial by killing me?

Before they gave me the Aleta, when they were doing all the double checking, I was asked the usual questions: full name, date of birth, first line of address and WHAT ARE YOU ALLERGIC TO?

It is ridiculous Joy. You have to be so on the ball with absolutely everything. There is absolutely no excuse for some of the things that have happened. Communication is obviously pretty much non existent.

I received a phone call this morning, from nuclear medicine, about my PET scan. Do I know why they have been asked to move it from 09:30 to 1pm? No, I have no idea. Yesterday the trial nurse asked me for the scan time, I told him, he seemed happy. Oh well, I'll leave it as it is, then.

Saw my CNS this afternoon and asked her. Oh, that's because you have a clinic appointment that day, and you can't come to clinic once you're radioactive.

I tried to ring the nuclear medicine unit back but of course, the number they rang me from doesn't accept incoming calls. Eventually I got through to an adjacent team and left a message.

Someone rang me back, clearly knew nothing about it... upshot is, it's being moved to 1. That means I have to fast from 7am until the scan is completed (likely to be 2.30 or later) whereas it would only have been 10.30 or so with the earlier time.

Ward nurse just came in to see me. "We still haven't got your blood results from this morning. Did you have them done?

No, the trial team said I wasn't to have them this morning and they would do them later. They came only about an hour ago. I asked if the results would be shared with the ward and was told yes - the general ones. Not the trial-specific ones.

I'm getting very frustrated with all this nonsense.

Not good....AT ALL

So frustrating. You really have to be your own advocate. What the heck would happen if you were not very bright or a bit forgetful? It is not good enough. Medical marvels and new treatments really do need to be backed up with good organisation and communication.

I have to have a treatment every 6 months which involves a process of blood tests... blood results... order the drugs ... book the appointment. There is no system for a computer flashing this up and making it happen. I have to diary it all and set it all in motion myself. I have asked what happens if I become forgetful .... no answer.

Sorry to digress but these are the things that need sorting.

Hope things go well for you tomorrow.

I'm not sure whether I've been tested for rabies, but I was definitely tested for HIV, syphilis, hepatitis and several other STDs.