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.)

Can you get the eyebrow type stamps or stencils? My friend has very high eyebrow arches and gets more attention than any other woman I have ever met. Her eyebrows look like she is permanently in a state of shock. She is stunningly attractive. So on that basis I think it's impossible to go wrong. Unless they are different heights. But that might help with the cynical 'side eye' when things go TU. Maybe getting different heights would give a "do not mess with me vibe" which would also be new look to try out.

See, you can't go wrong!

I also had another friend with no eyebrows at all. One day she said 'what's different about me today?' I could not tell she had forgotten to draw them on.

I am using translucent highlighter for eyeshadow right now. I have a NARs one and you can just smear it over your lids with a finger to give a subtle sparkly effect. I don't really care what I look like as the day goes on as long as it looks OK when I leave the house.

Who'd have thought that I would be getting my first tattoos at my age? No, not my eyebrows - positioning dots for the radiotherapy.

Yesterday had a haematology appointment at Dewsbury. Total waste of time - they learned more from me than I learned from them. I won't be seeing them again until after the CAR-T. The only good thing was that my blood test results show that my red and white cells are looking good.

Today I've got tummy ache. I hope this isn't a sign that the tumour has grown so much that it's causing me pain again.

It is all such a muddle and saps one's confidence - I am sending so much sympathy.

I've just made all the necessary travel plans for a heart procedure at a centre of excellence about 70 miles away - day case they said. Just had a letter saying it is an overnighter. Rang department and they told me to ignore the letter! I am hoping that they are better at heart procedures than they are at admin!

I am sorry that it is all so muddled and tedious - you really don't need this. Stay strong.

It does not give you a feeling of confidence does it? Will you pack a bag anyway just in case? I member I had five days of every Dr on the ward saying I needed, then didn't need a lumber puncture and MRI. In the end I recovered while they was deciding and went home before they could agree.

I hope the pain is nothing sinister Joy. Sounds just as likely it's from all the tummy upsets. Maybe your gut biome is just very unhappy with being constantly sick and the runs.

@NotPerfectlyAdverage I haven't been sick for weeks, thank goodness, but the diarrhoea continues to be a problem from time to time.

I bet your poor insides are just incredibly unhappy from that alone. If it's then the tiniest thing will set pain off. Is there anyone you ask to see if could be the tumour? Hopefully that's very unlikely to have grown since the last scan.

The scan was 7 January. It had grown between October and January despite the chemo and will continue to grow, especially as I'm not on any chemo now. That's why I need radiotherapy, to try to keep it in check until I get the CAR-T.

Great re your bloods Joy. Sorry about Dewsbury. All this going here and there and waiting and talking and being talked to/ at can be knackering!
Understandable to be worried about your tummy ache. Could be many reasons but unless you have another scan you can't know for sure can you.
Do you have a 'link' nurse/ health care professional that you can talk to if you want to ask things or just talk?

Hope tummy ache settles for you.

You must be so fed up. I’m so sorry you’re going through all this. I hope your tummy settles soon x

Keep us updated re how your tummy is this week … maybe you should get some extra tattoos to add to the medical ones? If you’re allowed that is? I had my first tattoo ‘at my age’ last year, forgetting until the last minute that it’s actually done with a needle, a painful! Doh!

What appointments are on the cards this week?

Well, this is shit.

1. I didn't get the central line fitted last night which was the whole point of being admitted yesterday. It's still not been fitted now, and my apheresis is supposed to start first thing this morning.
2. I didn't get my tea (dinner for southern readers) although it had been pre-ordered in the morning when they rang me. Eventually they rustled up a cup-a-soup, a sandwich and a cupcake with custard. There's no sign of breakfast as yet.
3. The window blinds don't close. A nurse or HCA taped a bedsheet over the window but it fell down in the night, was taped back up and is half down again now.
4. There's a clock on the wall. It needs a new battery as it is stuck on 12.45 although the second hand twitches (minor irritant, although I do keep looking at it and going "What?" because I forget.
5. I was freezing during the night. Slightly better after the nurse brought two extra "blankets" at 02:30.

Oh ffs … this is all less than great, eh?

What are they saying about when they’re going to do the central line? Can you get some food delivered (my hospital has an M&S cafe downstairs which is a godsend tbh)? If you can’t leave your ward because of being hooked up to stuff, is there someone you can message to bring you something in?

You’d think basics like food and privacy would be prioritised 🤦🏼‍♀️!!

I asked this morning and I'm "on the list ". Not looking promising.

There is a cafe here but it shuts at 3pm so wasn't an option last night.

Yes tbh the one here on weekends shuts at 5 … I live opposite so come over and get the yellow sticker stuff if I remember.

Have they given a reason why your line wasn’t done?

Bloody heck. Basic stuff imo. Comfort,dignity,palatable food! Not too much to expect.
Any reason given re not fitting the central line?
Sorry it so crap Joy. Dosen't help when you may well be feeling trepidatious.

The shit show continues. Just started my breakfast and the porters came for me. A nurse brought me a theatre gown to put on, and off I went.

They took me to the lift, one porter asked the other which floor, he said 1. We came out at 0, then he looked at his handset and says "No, 3." Back up to floor 3, where we started, and they took me to the apheresis unit.

I said "I shouldn't be here yet, I need a line putting in first." Long story short, I need a line put in. So they took me back to my room. Said I would have time for a shower. Of course the doctor came to talk to me when I was in the shower.

In a nutshell, I'm on two theatre lists for line insertion but nobody knows when it will be. If it's not done by lunchtime, I won't have the apheresis today.

Oh - please insert head in hands icon here! Above all you need to feel confident about what is happening and this sort of shit show just chips away at it.

If it's any consolation I have found that in the midst of this nonsense the actual treatments are administered efficiently once you can get that far. Sending fellow feeling - I too have been on the receiving end of this sort of crap ... sigh ...

The conversation on the apheresis unit went something like this:
Me: "I shouldn't be here yet, I should be in theatre. I need a line putting in."
Nurse: "Just make yourself comfortable in the chair and we'll see what we can do."
Me, not getting out of wheelchair: "No, I need a line putting in."
"We might be able to do it through your arms."
"I had an assessment a couple of weeks ago. My arms aren't good enough."
"Ah, but did they use an ultrasound machine? We can use an ultrasound machine. "
"Yes, they did use an ultrasound machine and they said my veins aren't good enough."
Nurse, checking notes: "Oh yes, it says that here. You need a line in."

Centre of excellence my arse.

(Autocorrect changed arse to arsenal. Luckily I noticed.)

I'm down at theatre now, waiting to go in. The doc asked if I want it in my neck or groin. How do I decide that FFS? I've gone for neck.

Oh Joy..I have many words but am too polite to type them. Communication or rather lack of has always been an issue in the NHS. I have seen it from my perspective( when I used to be a nurse) and also from my perspective as a patient and as a relative! Thank goodness you are able to advocate for yourself. Sounds so knackering. Hopefully what @Mischance says will happen for you.

Nearly there Joy.Sending positive thoughts.

The line insertion wasn't easy. The local anaesthetic shot was so painful that I started sobbing and couldn't get my breathing back under control, so he couldn't start the procedure because my body was shaking too much. I don't think he had injected it in the right place, because he put some more in later, before starting the procedure.

They had to give me gas and air, which calmed me sufficiently to get my breathing under control, then he could go ahead. All the while, there was a nurse holding my hand and saying, over and over, "you're doing really well", when I knew full well that I wasn't.

Anyway, the line is in, and the apheresis has started. Less than half an hour in and the machine starts bleeping, my line has to be flushed and I don't know what, and we're off again.

I can't wait for today to be over.

Oh Joy. So sorry. You are doing really well..it is scary and painful.