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.)

Are you doing ok now?

I'm ticking along thanks Joy. A few challenges and limitations and lots of drugs I would happily bin, but I guess you know what that is like .... !

I am glad to hear everything is going in the right direction Joy. Great you are enjoying your favorite drinks. Thinking if you.

How are things going now?

I decided that there's no point in having the IVIG if I'm just going to sit in the house all day every day. So I went to the pub quiz (we won but, to be fair, they have won a couple of times without me.) DH got there before me and saved me the seat next to the (open) door so I had as much fresh air as possible.

Then we went out for lunch for our wedding anniversary. It's been such an awful year, we didn't know if I would make it to this one, but here I am. Thought lunchtime would be quieter than evening and it was. The food and service were lovely.

Unfortunately, when I got home, I had dizzy spells almost every time I stood up. Maybe all my blood had gone to my stomach to help digest the meal? So we took my blood pressure and the systolic wasn't too bad (mostly just over 100) but the.diastolic was too low, in the 50s. I've been trying to drink lots of fluids and if it's still low on Monday I'll contact the hospital. If I ring over the weekend they are likely to tell me to go to A&E, and I really don't think that spending hours in the A&E waiting room will help much.

I'm feeling a bit better now but not great.

Congratulations on your wedding anniversary OP, I’m sorry it’s been such a hard year

Happy anniversary.

Happy Anniversary. I hope you are feeling somewhat better today.

I am so pleased that you were able to celebrate your anniversary and that you won the pub quiz - I am sure it was all down to you!

I can empathise with the post meal problem as I have a similar situation because I am pacemaker dependent and when I eat all the circulation goes to my digestive system, leaving my brain and legs with nothing - I have found that gentle grazing is the answer. Hope that you can sort this.

Happy anniversary.. and I hope you are feeling a bit better?

I am, thank you. Today I managed to go to M&S food AND ALDI. Last time I was shattered after just M&S. Only one mild dizzy spell and that's since I've been back home, when I was putting the shopping away. At first I didn't have the energy to put the yogurts into date order in the fridge but I've gone back and done it properly. Yay me!

I know this probably sounds pathetic, but it's an achievement for me. Admittedly I've left some heavy stuff (cans) in the car boot for DH to bring in when he gets home.

Today is the one year anniversary of finding out I had cancer, although it took until the end of August to determine what type and start treatment. My original thread is here:
https://www.mumsnet.com/talk/cancer/5382361-likely-ovarian-terrified-anyone-available-for-a-hand-hold

I've had several more dizzy spells in the last few days so I'm going to email the CNSs in Leeds. Also I've had a medication review with my GP surgery (by telephone) because they are supposed to take over the prescribing now, but they say they can't prescribe the antibiotic I'm on, as it's hospital only. That's going to be really inconvenient if I get two from the GP but have to go to hospital for the third.

Hi Joy. What an anniversary hey! Hopefully at the very least the hospital will be able to send prescription to GP or to wherever you collect your meds. Hope they listen re the dizzy.

It is often the on-the-ground logistics that are so frustrating, even when the actual treatment is state of the art! I hope you manage to get the drugs you need.

Thanks, @Boudy and @Mischance. I have enough antibiotics to last until the start of September, so it's not urgent.

The third thing in my email was IVIG transfusions, as the next one is due in under two weeks and I haven't had confirmation of whether it will be Leeds or Dewsbury.

TL; DR: DH has got me a free season ticket for football

A while ago, I mentioned that I hadn't renewed my football season ticket because I hadn't been able to go at all last season due to the cancer and they refused to "roll it over" to this season, because I hadn't let them know I wasn't using it, so they couldn't re-sell the seat. I was a bit sad but could see their point. However, it occurred to me afterwards that not one single game last season, even the local derby, sold out, so they had plenty of tickets to sell for every game, which kind of negates their argument.

Recently the club said that some randomly selected season ticket holders could win money (more than the season ticket cost) "as a thank you for their commitment". DH tweeted the club and the owner to the effect of "so you can afford to do this but not to..." actually I can't remember what he said, but the outcome was that the owner got in touch and has not only renewed my season ticket for free but also refunded DH's! The power of social media! DH also received some abuse from other fans for his post, including being called a twat. (Autocorrect doesn't like that; it's not in my usual vocabulary.)

The downside is that we might have to meet the owner at a game this season and I really, really don't want to be used for publicity. Well, specifically I don't want to be photographed.

Wow Joy..good and not so good there. I think club behaved poorly initially tbh. I know from the club dp supports that some of the fans are vile online( always the same ones).I wouldn't want to be used for publicity either!

They can’t use your photo for publicity without your permission. So glad you got the ticket - at last it has dawned on someone what appalling PR this would make if you had chosen to. Well done to your dh and how appalling that he was given abuse online.

so glad things are returning to a semblance of normality for you, and I hope they get those prescriptions sorted!