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.)

Sorry to post again with suggestion but ? Glucose tabs( like lucozade ones) was going to suggest something like Berocca but does involve dissolving in water.Hope dh home and you nearly sorted for tomoz.

Long term lurker briefly decloaking: may your admission be swift and straightforward and your doctors, nurses and fellow patients be nice and easygoing. I will be thinking of you.

Wishing you lots of luck Joy. Might be worth having a look at Jelly Drops. They are sweets that are designed to help you stay hydrated. My friend said they really helped her when going through chemo.

Best of luck in Tuesday and with your admission on Monday. It helped me to think that every day no matter how bad was one day closer to recovery. Take it easy. I wish I could help with the laundry and anything else. Will be thinking of you Joy x

Will be thinking of you Joy. x

I'll be in isolation so I won't see any fellow patients.

@Ohjoyohbliss good job you'll be in isolation with all of us lot crowding around and cheering you on ... We'll be a flipping noisy party!

Hope the admin goes smoothly for once and then you tolerate the procedures well. There's no pressure to update us, just know we all wish you the best.

I hate being in hospital and it's only day 1! At least it's not freezing cold like the last time I was here but it's too light in the room. Not too noisy until the banging around started at 6.

Ready for bed around 10.45 pm but they had to do obs first. Asleep some time after 11. Doc came just after midnight and I had to wake fully to answer all his questions. Then he prescribed the blood thinning injection which I had been asking for since I arrived at 7.30. The nurse came and did it at 12.30.

Obs this morning my blood pressure is too low so I'm sat here drinking water when I want to be sleeping. I've heard of white coat hypertension but I seem to have white coat hypotension.

Physically isolated you may be, but you will not be alone x

I hope the transfusion goes ok. I found it fascinating watching them prepare the cells. Hopefully you won't have too many side affects but they will be on hand with the medication straight away if you do.

Ach Joy! I do have to wonder why they are not organised when admission/ procedure is planned. Unless there was emergency elsewhere. Keep sipping!

Yesterday when the charge nurse phoned about my admission, he said I should have tea at home then arrive between 7 and 9 pm. His shift finished at 8 so if I got here at 7.30 he would settle me in. I got here at 7.30. The room wasn't ready.

Eventually got into the room and the rest of the evening was unpacking, going through the checklist of the personal items e.g. spectacles and valuables I've brought with me.

I had my weight, height, blood pressure (sitting and standing), pulse and oxygen saturation measured. Swabs for Covid, MRSA and something I've never heard of (the swab was of my anus. At least I was allowed to do it myself.) Finger prick for diabetes, my PICC line site checked, cleaned and re-dressed, bloods taken... basically it was all go.

The consultant has been to see me. She is very pleased with me, all blood results are where they should be, the poo sample was negative for infections, I was eating my porridge when she came in, so all systems are go. They are sending to Barnsley for the cells. I just need to get my blood pressure up.

I just need to get my blood pressure up ... you said @Ohjoyohbliss

Meanwhile most of us in your cheerleading squad get a rise in BP every time you update us on the admin and inefficiencies ...

Yeah, I had a shower no problem (although it's a lot more difficult to get the PICC line protection sleeve on by myself without DH to help.) Standing up for ages, all fine.

Then after sitting for a while, walked across the room to the bin, went light-headed and called the nurse. Blood pressure now is considerably better than this morning but still a bit low (98/60). Drink more fluids!

Positive feedback from the consultant and improved BP are good news Joy. You’re doing really well and there are lots of people here willing you on. x

Sigh. Blood pressure has dropped again. 89/54.

It could be from last week's chemo kicking in.

Oh, sorry to hear this. Hope they can manage it for you soon.
X

In the end they decided maybe the blood pressure cuff was faulty as my BP seemed to be fluctuating so wildly. Fetched a new cuff and hey presto, it stabilised.

So I got my CAR-T cells about an hour later than planned, but still within the cut-off time from them being defrosted. Earlier, I had chlorphenamine (antihistamine) and IV paracetamol to dampen down my response.

I feel absolutely fine but very sleepy. Insufficient sleep last night and the sedative effects of the antihistamine mean I'm struggling to stay awake. I'll probably go to bed very soon.

Thank you for updating us Joy … sleep now and let your body deal with everything. Sending all the strength and love and a quiet night. xx

Maybe it wasn't just the cuff. Still having low blood pressure issues.

Staff at bedtime: "We'll be back at 2 am to do your obs. Don't worry, you won't have to wake fully, just stick an arm out of the covers."

Staff at 2.30 am: "Your blood pressure is too low. Sit up and drink a glass of water."

Still too low. Put me on a saline drip. As soon as the nurse left the room, the alarm went off. This happened a couple of times and in the end I asked her to disconnect it so I could get some sleep. She was reluctant and said "hydration is important to your recovery." "So is sleep." "Yes, but..." "Do you think I have capacity?" "Yes, obviously you have capacity." "Well then, I want this disconnecting until the morning."

So now I'm THAT patient. And I'm on an 8 hour drip, which means I can't shower, get dressed or anything. If I'd persevered with it at 3 am, it would be almost finished by now. My bad.

Sorry to hear this, Joy. It's a lot to get through ... but get through it you will.

Oh that’s rubbish you got a broken nights sleep, after feeling so tired a before going to bed last night. You probably need to nap on and off today to catch up, so try to put today down to a ‘duvet day’ rather than a ‘get up showered, and ready for the day, day’. Can you watch a film? Listen to a podcast? I’m bad at ‘resting’ and am planning to watch the new Louis Theroux interviewing Stewart Lee (my cousin) podcast on Spotify or wherever it is.

Fingers crossed your bp sorts itself out … mine is always on the low side of things … then gets lower.

Hi Joy. It's great to hear you are assertive, don't lose that. I was that patient too :)
I hope your blood pressure will go up soon and that you are able to take naps. I agree sleep is very important. x

If you’re feeling strong enough to post Joy, how are you feeling tonight? Thinking of you x

Still sending thoughts along the motorway, Joy. Being assertive definitely works, when one has the strength.

I recently sent a complaint to PALS copied to the chief exec of my trust about my outpatient care which has been appalling. ( inpatient was v good, unlike some of your experiences.) Constantly cancelled clinic appointments and other failings. They are dealing with it very well actually. It has now been escalated to an investigator and within ten days of the letter, I had over an hour with another, competent consultant who will now take over my care.

For anyone else reading this, taking on the Leviathan of NHS bureaucracy can pay dividends.

Thinking of you frequently Ms Joy. All the best.