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!

Well done your DH to stand up for you, I'm really happy they reconsider their attitude and you have your season ticket!
Sorry to hear re.dizzy spells. It's warm and maybe any strenuous activity even carrying bags from the supermarket is too much.
Happy wedding anniversary and apologies for the dealy. I am away on holiday and was wondering about you x

Wow a year? So much has happened but your still and fighting fit which is the main thing.

Good on dh for standing up for you. He is a good one. Your lucky there.

Thanks all. Yes, I'm very lucky with DH.

I've not been pushing myself enough lately; I've hardly been out of the village. Took DH to buy a football shirt the other day and after about 10 mins (maybe less) looking round the shop, I had to leave him there and sit down outside. Need to do more walking and more exercises.

For a week from next Tuesday I could have a full schedule; most of the things are optional. I don't think I'm going to be capable of going places day after day, but I'll be disappointed to miss out on some of them.

I also need to kick this online shopping habit; I've been buying lots of arts & crafts stuff but not making anything, and lots of beauty stuff but not bothering to use it.

If I know in advance that I'm expecting to meet the football club owner, I'll wear one of my chemo wigs, so I don't look like my normal self in any photos.

My hair, which always used to be fine and dead straight, has come back coarse and quite curly. I know that's common after chemo and I know it might not be permanent. I quite like having some natural root lift at the front, compared to it having always been completely flat to my head before, but I'm not so keen on the unruly curls at the back; I think it looks like an old lady perm. It's greyer than it was before.

Grey is very in right now. Plus you don't need to grow it out then worry about root blend. Give it time to get about 3 / 4 inches long. You might like it after all. Curls are low maintenance but easier with a bit of length to pull them down. I'd have a afro if mine was only a few inches long and would grow out and up short.

We had a little day out yesterday; well, a few hours anyway. I struggled to walk far, especially uphill. I am so unfit. After climbing a few steps (don't know how many but not like climbing up a big tower) I couldn't get my breath back and had to sit on the ground because I felt I would collapse otherwise. According to Strava I walked just a mile in total but not all in one go - we had cake and a drink in the cafe part way through.

I know I keep saying that I need to work on my strength and fitness but... I really need to work on my strength and fitness. I was hoping to go to football on Saturday but I don't think I'm fit enough. There are a lot of stairs to negotiate as well as the walk from the car park to the ground and back.

There's a trip to the races with DH's family on Sunday and I've already said I can't do that. I remember last time we went there, it was a long walk from the car park to the racetrack, and then there's no guarantee of being able to sit down. I could probably manage the walk (much slower than the rest of them) but would then need to sit and recover. I like to watch the horses in the parade ring, pick one I like the look of, dash to the bookies, then go to the stand or rails to watch the race. I wouldn't be able to do that.

I really need to work on my strength and fitness!!!

All the media coverage of the eclipse build up is making me feel sad. It's only a partial eclipse from the UK and honestly, even a 99% eclipse (which it isn't) is nothing compared with totality. I should be on a boat in the North Atlantic right now, getting ready to see my third total eclipse. But I'm not allowed to travel.

I did say yesterday that I definitely wouldn't cope with the cruise, having to climb from a moving ship into a small inflatable for shore excursions etc. Not sure I'm steady enough on my feet to cope with the boat rolling etc. (It was an expedition ship not a huge cruise ship.)

Still, at least I'm still here. I should stop feeling sorry for myself and count my blessings. I'm alive. I've got a (mostly) lovely DH. I hope to get back to travelling next year, if not this.