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 Joy..goodness me. Sounds so positive! I don't think you should feel pathetic..administering an injection slowly on oneself would be hard I think. I have quick ones I adninister myself for migraines( that's bad enough!). Onwards and upwards Joy x

Glad things are going well Joy. DH will be one year post CAR T Cell next week and is looking forward to losing the anti-fungal medication. The first six months were tough, but since January, (despite moving countries), he has recovered and I would say that in himself, he is as well as he was before the lymphoma started in 2023. He is looking forward to his 80th birthday later in the year. I hope things continue to go well for you. It is a truly amazing treatment.

I've had a couple more dizzy spells in this heat (on standing.) Probably just dehydration; I'm trying to drink more.

I enjoy watching live sports. This post is a long, boring whinge from me about it, and DH's attitude, so please feel free to scroll past.

I've not renewed my football season ticket because last year I bought one but couldn't go to a single game. In the month or so before CAR-T therapy, I thought I might be able to manage it, but DH persuaded me that I couldn't. I asked the club if I could roll it over to this season and they said no. Disappointing but not entirely unreasonable, but I've not renewed, in protest.

The next village to ours has a non-league team and I'll probably go to some of their games. I haven't bought a season ticket because, by the time I thought of it, I had missed out on the early bird price and don't want to pay full price when I'm unlikely to get to all the games, and it's not "my" team anyway (although might become it!)

I thought maybe I could go to cricket at Headingley. Suggested to DH we could get tickets to the Hundred (late July/early August.) He's being extremely negative about it. How will I get there and home? I've suggested maybe train there and Uber home, because fewer people go for the start of the women's game and travel times are more staggered, whereas afterwards everyone leaves at once and trains are a nightmare. Also at the end of the day I would be tired so easier to just get in a taxi. I can't even remember the rest of his objections but there were several others.

I really thought he would be more positive and try to find ways to make it work, rather than reasons not to try. He did say maybe I should consider going to Yorkshire Women games instead of the Hundred, on the assumption that crowds will be smaller, and I'm considering it... several possible games are before the football World Cup has ended, though, so I will wait until tomorrow when we know England's route through the knock-outs. I won't want to be up all night watching England and then have to go out. Also I won't be strong enough to go in the next couple of weeks but have four weeks to get fit before the first Hundred home game.

I also suggested we buy tickets for England men's football autumn home games, and he was very negative about that too. We have fallen down the caps rankings so there are now thousands of people ahead of us, so DH says there's no point and we just have to accept that our days of following England are over. I say, the next Euros are in UK and Ireland and, while we will no longer qualify for the cheapest tickets, if we go to as many games we can, we should still qualify for SOME tickets, so it's worth doing.

Basically I just want something to look forward to and work towards, but DH is discouraging me from planning anything. I can see his point to a certain extent, having been burned by the World Cup, but we're not talking thousands of pounds here, so if I'm not well enough on the day, I'll just take the financial hit. He's normally quite encouraging. Of course it hasn't helped that I haven't been exercising in this heatwave, in fact I would say I've lost some condition - see also previous post re. dizzy spells.

It sounds like your DH might be nervous for you. Has he spoken to anyone about how he's feeling since your diagnosis?

I know my own DH was wonderful while I was ill, he really stepped up with running the household, dealing with the DC and supporting me, but it came at a cost to him. I was offered a course for "ITU survivors" and one of the sessions was specifically for partners of the patients. DH was reluctant, but did go in the end. When he came out he had clearly been crying (I'd only seen him cry twice in more than 20 years at that point!), and he said it was helpful to discuss the impact it had had on him.

I'm not saying this is definitely the case with you and your DH, but I know that supporting your spouse through a serious illness can take a huge toll on the partner, which is not always recognised as everyone is so focused on the patient.

I would explain to your DH what you've told us here; that you need something to look forward to and if you're not well enough on the day, you'll take the financial hit. I hope you manage to get to some games!

@QuayshhLawrain
He has been brilliant at looking after me and doing everything single-handed since I've been ill. It has certainly taken a toll on him. Only recently he has said that when I was seriously ill with the neutropaenic sepsis last year, he believed that I was dying.

He is not interested in professional help (therapy/counselling) for himself; he prefers to talk to one or two close friends down the pub. It seems to work for him. He did feel able to cry in front of them. I've encouraged him to take time out for himself throughout my treatment but inevitably his life has been limited by my needs.

I'm going to leave it until tomorrow and then approach the subject again in line with your last paragraph.

I think it was awful of the club not to help out. They are all about the money it seems. I probably don’t get it as I am as far from a sports fan as you can possibly imagine! 😂Your DH is probably being over-anxious - his cortisol must be through the roof - and maybe not a sports fan either ?

Is there anything else you could plan instead? It’s so important to have something to look forward to, I agree. I was going to suggest a night or two in the Dales again, but don’t think you are driving at the moment. What about one of those chef at home services where they cook you both whatever you like in your own kitchen? That is if your appetite is ok. Maybe they could create something tempting, like dim sum type things? Or prepare it elsewhere and bring to you?

@Words DH is very much a sports fan; in fact, it's how we met.

The club's point was that I didn't let them know I wasn't using the season ticket [because I was so ill and it wasn't a priority for me] so they couldn't re-sell the seat. But season tickets didn't sell out - it's not like the Premier League clubs with a waiting list, and AFAIK none of the games were sold out either. Next season is very far from a sell out too.

I have started driving again but only short distances so far. I can't eat in restaurants so a hotel or B&B isn't appropriate right now and an airb&b would leave us having to cater for ourselves, which wouldn't be much of a break.

I have booked a craft class for September. If still necessary by then, I can wear a mask.

Sorry Joy. Far too many assumptions on my part!

No problem, you were trying to help and I appreciate the suggestions.

I've learned a bit more about the tests for MRD (minimal residual disease) and you need to have "banked" a sample of the tumour tissue from biopsy so they can identify its DNA and look for that in the blood. Without that, they can't do the test.

My biopsy samples were barely sufficient for identifying lymphoma type so there's no way there will be any available.

It's definitely something I will ask if I relapse.

(I think I wrote about this before. Basically, my question is how will I know if I relapse, given that my original symptoms were so vague and non-specific? They certainly won't send me for a PET scan every time I have a tummy ache. A blood test is available which can detect the cancer cells circulating in the blood, well before enough has accumulated in a single location to show up on a scan.

It's like an early warning system. But I didn't know about it prior to my biopsy, so no tissue has been banked. It's not available on the NHS anyway, for my cancer type.)

I'm still listening Joy..

I hope you can ask a medical professional the questions you have Joy and that they answer you!

@Ohjoyohbliss thats definitely a huge worry for people with lymphoma- that there isn’t really a standard test for it. I know I was quite naively thinking that my blood tests in my 3 monthly post chemo/radio checks were “checking” for lymphoma but no, they just help build a picture of your “normal” so anything out of the ordinary might flag. But it is a real fear and you’re not alone with that worry. You will have follow up and you will have times you think you may have relapsed and have to get tests etc and hopefully it will all be fine. But it’s a bugger.

@Isadora2007 so you've been on this roller coaster too? How are you doing now?

(Apologies if you've posted previously; I find it hard to remember everyone who has commented.)

Today I will mostly be radioactive. I had my PET scan this morning. Trying to drink lots to flush it out of my system.

Thankfully my lymphoma was a common or garden Diffuse Large B-cell Non Hodgkin’s lymphoma. Successfully treated with RCHOP and radiotherapy more than 15 years ago. So I am very grateful to be doing well. I have yearly mammograms due to the area radiated
but no haematology input any more! Freedom.

I remember my hubby having the pet scan, I was more annoyed about the parking prices at Jimmys!

thought of you yesterday when I drove through Thornhill Lees x

@Ohjoyohbliss I know how that goes. Had one recently and I do the same. I was told it would be flushed out by evening but I still felt like I was “glowing”!

That's the same as mine, but my Pola-R-CHP chemo didn't fully get rid of it. It was very hard, after being told "It's one of the most treatable cancers, the aim of this chemo is cure" to get the news back in January that "Most of it has gone, but one bit has grown since the mid way scan so is resistant to the chemo." When the first treatment doesn't work, survival rates drop considerably.

It's great that yours was so successful, though.

I'm not confident to drive to Leeds yet (since the post-CAR-T driving ban) so got taxis, which is even more expensive than the parking!

Previously my MIL has driven me to some appointments and we had her number plate registered so she doesn't have to pay.

I'll be going through Thornhill Lees tomorrow on my way to Dewsbury Hospital for PICC line maintenance.

Yes they say it should be gone within eight hours so I should be ok now. It just shocked me last time when someone wearing a radiation monitoring badge approached me, and the badge started beeping like mad.

Hi Joy. Sorry I have been away for a few days.
It's great you found someone here with the same type of cancer so you are able to share knowledge and experiences.

It's important to get to understand the types of tests in the near future and how exactly they can detect there is no relapse.

I have an annual blood test (this is after 10 years, of my cancer but at the start it used to be twice a year). The bloods can tell if there are cells from growing tissue, there are specific markers linked to some type of cells. If there is tissue growing, they can tell by the presence of these markers (and the numbers). They can also detect through blood if the immune system is making antibodies to bind these specific markers, that's another way to know there is presence of the wrong tissue.
I would personally ask these questions. I think you are are person who wants to understand everything too,
That gives you some sense of control.

Best of luck tomorrow x

Had my last set of observations and bloods taken for the trial today and saw the consultant this afternoon.

The scan result from Thursday is good. No hot spots from tumours taking up the radioactive sugar solution. There is still some kind of mass at the porta hepatis but hopefully it's just scar tissue.

The bowel polyp is still there but smaller than on the previous scan, so they're not going ahead with the colonoscopy.

The abdominal lump I first noticed back in February did show up, but they're not worried about it. Typically, I couldn't find it today to let the doctor feel it. She said maybe it's from one of the subcutaneous injections, but at the time I discovered it, I hadn't had any of those for over a month.

Immunoglobulin: I've been approved, but for the subcutaneous form, i.e. injections. However, they can't find anyone to do the injections. It's not as straightforward as the blood thinners and bone marrow stimulants that I've had before. So unless I can do them myself (after training), I can't have them. I can't, I just can't.

So back to considering the IV type. I said could they just do one dose through the PICC line then, if I have a good response, future doses could be through a cannula? That's what she's going to try for.

It is amazing how quickly we can become experts on specialist niche medical treatments that only a short while ago would have been a closed book to us. Not knowledge we really want to be learning of course.
Hope you manage to organise the right treatment route for you.