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.)

Oh that's the kind of mostly good news with a but in it that takes the shine off things, I'm so sorry you still have bastard problems.....oh I thought I was a bit of a saint who didn't swear on line but clearly I'm not that went through my spell check most happily!

I don't know if it would help in terms of encouraging you with bucket list stuff but I follow a blogger on Facebook called Travelling Full Time, it's a husband and wife team, who sold their home to travel, and then he got anal cancer all kinds of complications and secondaries, has a colostomy and a urostomy, months in hospital but now they are travelling the world on a budget. Ignore if it's not your thing.

Will be continuing to watch this thread and keep you in my thoughts.

@Mischance
do hang on to the fact that the treatments you have had have done good things - not as much as you might have wished, not the whole story, but nevertheless effective

From late July onwards, I couldn't put my own socks on or tie my shoelaces or cut my toenails. I couldn't bend down to pick something up from the floor. I can do all of that now.

Until I got morphine, I was lying in bed just crying with the pain. I'm completely off morphine now. So yes, it has done a lot of good.

Like many, Joy, I have been reading your story and willing you on. Thank you so much for sharing, I hope it helps you to do so. I’m really sorry the treatment thus far didn’t quite kill all the bastarding cancer - it does sound positive that it killed so much though - onwards and upwards, we are all rooting for you (and your DH too).

I'm allowing myself today to grieve. I don't think it's unreasonable. Tomorrow I will try to get my positive head on and start making plans to live a little in the next two or three months. But today I am giving myself permission to wallow in self-pity and misery.

We are supposed to be meeting friends in the pub across the road this afternoon and I've said I will still go, as long as they will be comfortable with me possibly crying a lot. You never know, I might be all cried out by then.

I've got Radio 3 on today; don't think I can cope with world news. Some of the beautiful music is making me sad, though. Tried to find Radio 3 Unwind on my radio but it's not coming up.

It is absolutely not unreasonable to grieve !! with my first BC diagnosis ( as a young mum) a few well intentioned people said ‘I had to stay positive’ I’m actually naturally quite a positive person but I felt like screaming ffs sake I’m 35 with cancer can I please be allowed to cry/ feel depressed?
So sorry to hear the news wasn’t what you wanted. I’m glad you’re feeling better in the meantime though. The next treatment does sound a bit daunting but 95 percent of people get through it ok if I’ve understood correctly so..perhaps it’s an easier way to think of it, I really understand though.
When our mum could no longer drive we found a lady to drive her around ( she was elderly so it was also for company) Could that be an option ? Just so you can get out atm. Even if they sit in the car or go for a coffee close by while you do a bit of shopping or something? It would cost a bit obviously.but might be worth it for a bit of independence. Sorry if that’s a daft suggestion I’m sorry about your family people can be so strange can’t they? Sending big warm wishes xx

Currently listening to The Gallant Weaver by James MacMillan performed by the Gabrieli Consort. Just beautiful.

There's so much chat about staying strong and being positive around cancers...and it's just a crock of shite. You can't think a cancer out, and does that mean if someone isn't cured they didn't fight hard enough?! Definitely grieve. Be angry. And when you feel up to it, enjoy what you can. But please don't feel pressured to immediately get back on the horse and hit the ground running and all those clichés x

Yeah. I felt it added extra pressure as if if you weren’t positive it was going to make things worse . Later someone I was very close to who’d had alot of worry in her life and then a five year period with cancer taught me alot about staying in the present and enjoying the here and now, today is ok don’t think too much about the rest. It’s easier said than done but it helps me . Xnax has helped me this time around too !! I don’t know why I wasn’t given it before. It ´s taken the edge off for me and helped me hobble through the waiting for results period.

Music is a wonderful tonic isn’t it? Xx

Yes this is so true. Any choice that is made is brave and a fight. Even when that choice is to sat "I'm done with chemo. No more".

That's a real pita re not being able to drive. We are within a hour of the coast and I used to live closer. So nice to drive to the sea and just sit in the car not getting out or doing anything. But just seeing the water and listening.

I really don't belive in putting a brave face on and being positive all the time. Things are what they are and need processing in the here and now. It's crap. There's no point in saying it's OK. It is crap. It's not where you would choose to be.
Next week or tomorrow you might have come to some tiny peace the results. But you can't choose or force that.

Today you can go to the pub and cut your toenails. Tomorrow is for then. Feel whatever you feel.

I remember on day two of my induction with my third baby I told dh to take me home, I wasn't doing this and had charged my mind. Saying it out loud helped as the only voice of reason I needed to hear was my own inner voice. We like to have control. Not having control is horrible.

And... the liquid diarrhoea is back. Up about five times in the night. I've had about four hours' sleep.

The weather is cold, damp and foggy. It doesn't look as if it's going to be nice all week.

Sorry you are struggling again 😞

Agreed, the weather is miserable here now for the next week at least. It doesn’t make you want to do anything but equally, it’s perfect weather for hibernating.

I hope your skin isn't getting sore. If so buy Sudocream.

Soggy winter days call for lots of films in front of the TV in PJs. Don't get dressed. Then you go back to bed throughout the day. You might sleep better say at lunch time as the pressure to be asleep isn't there during the day

As the first step towards a positive mindset, I've started a gratitude journal today. Each day, or as many as I can manage, I'm going to write down something I'm grateful for, a happy thought, or a motivational quote.

No fears, negative thoughts etc - I'll save those for here.

That sounds like a good idea. Something you can look back over at the end of hard weeks.

That sounds like a great idea and one I may take on myself. I hope you are feeling a little better physically today x

Inspirational quote for today:

Your speed doesn't matter; forward is forward.

Just had two messages on the NHS App, both for appointments in Leeds, therefore presumably about the CAR-T. One is Thursday at 2.30 pm and the other is Friday at 9 am.

I would rather not have to get to Leeds for 9 am through the rush hour traffic so I have tried to call to ask if it can be a bit later, but they are not answering. After a certain number of rings, it cuts you off. I've tried six times and now it's gone 5 pm so I presume they've gone home for the day.

Frustrating.

Bloody frustrating. Are these appts back to back or spaced out?

I feel you about getting into Leeds at that time. My son had his cancer treatment in Leeds and his follow up clinics are always at 9am-10am on a Friday.

Hopefully you can get in touch and change it. Ours can't be changed unfortunately, it's a real pain!

I don't understand the question.

I've had PET scans in Leeds but no other appointments yet, so I don't know how they are structured nor why I have two on consecutive days.

Could you get a cheap hotel near the hospital? Sorry if that’s a silly idea and not appropriate. Don’t know how far away you are from the hospital.

How are you feeling today?

Sorry op. I was wondering if on 2 consecutive days( phrased it v badly!). I was thinking along the same lines as @ForLoveNotMoney if you were not able to change the 9am one this time. I imagine you have thought this yourself so prob unhelpful.

I am so sorry about your illness and hope that this new treatment is successful. Are you doing the RSPB garden birdwatch this weekend? You just fill a bird feeder and sit and count the birds who come into your garden for an hour at anytime this weekend.
Big Garden Birdwatch https://share.google/TKCFd4dRSPtGh22vW

Fwiw, iron tablets give me dreadful nausea and diarrhea. Like constant morning sickness. Would they consider an iron infusion instead? Might be worth a try.

I was going to also suggest this. Iron tablets can cause constipation. But in some others it goes the opposite way and causes the runs. My dd had a transfusion after reacting v badly with the tablets and this didn’t have the same issue. Worth an ask?