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 no! You need your pain meds. I remember how hard it was for me last summer when my pain wasn't under control. How can the doctor refuse? Surely s/he could give just enough to tide you over until the regular one gets back?

Dose 2 of Aleta today. They didn't start it until about half an hour ago, so someone will be working overtime tonight to monitor me! Apparently whoever makes it up hadn't made it because they were so busy. The CNS said she kept telling them that it's a long day on this so they need to prioritise it over those for patients who will be in and out in an hour, but it didn't happen. I hope they have it organised better next time, when I'll be having it as an outpatient.

They brought my lunch from the ward and guess what? I had ordered jacket potato with tuna mayo and a side of coleslaw, but the coleslaw didn't come.

Last time I had a single room for this, but today I'm in a room with 5 places. Apparently because my neutrophils are now above 1, so I'm not as high risk for infection. Still at risk, mind you. But yay for neutrophils being over 1!

This morning the other four beds / chairs were all occupied by men. There's only one loo. Yeuch. Also, they were very noisy, shouting across the room to each other and the nurses. I didn't sleep well last night so was hoping to get some sleep but, even with noise-cancelling headphones, it was impossible. Thankfully three have gone home now, but it will probably start again after lunch time.

Oh crikey that sounds really tiring and tiresome @Ohjoyohbliss . Are you managing to get any rest this afternoon? How late will you be stuck there due to the late start?

They brought me back to the ward at 5pm for my tea, then the CNS came at 7pm to do the last bloods for today. More tomorrow, then hopefully home in the afternoon.

@Ohjoyohbliss Oh am I hoping you get to go home soon. I go in for frequent labs and UA’s and I just cringe when a man leaves with the toilet seat up and you know he hasn’t washed his hands (no time as he’s in and out so fast) UGH!!!

I'm back in my own room now, I was in the room with the men from 10 - 5.

@Ohjoyohbliss Oh am I breathing a big sigh of relief!!!

Keeping an eye and hoping you get home today x

Will be such a relief for you Joy x

It will be good to be in my own bed. Haven't slept well here.

Definitely going home today as I am fine and they want rid of me.

Received the sad news this morning that a friend died last night. He was diagnosed with stage 4 cancer and told it was incurable but has managed to keep going for two (?) years since then, on various chemo regimes. Since my diagnosis he has been a great support and encouragement to DH.

Aww that’s sad Joy, but amazing he got a couple of years extra with treatment to enjoy and appreciate the life we are all given, than he maybe would have had with that diagnosis 10 or 20 years ago. xx Sending a cyber hug over the ether ❤️

That's very true.

Hugs Joy on the sad news of your friend. I am reminded of a friend I worked with in my twenties who had young kids. A horrible ex and she passed away two weeks after being diagnosed with liver cancer. Two years is crap. But it's also an amazing gift to get things in order and grab life. Still it's a reminder that it's all very unfair. ❤️

Sad news about your friend, Joy. Hopefully you’re home now, in your own bed, with your own bathroom and have enjoyed the warmer weather this afternoon. x

That is sad. Sorry to hear this.

I hope you were allowed already to go home and get some sleep. You brought me some memories about the radioactive dye, I remember having a very bad reaction to it. I'm very sorry to hear the bad news about your friend, Joy. 💜It is never something nobofy fully expect or accept, even in stage 4. Hope you are OK.

After the scan, someone from the scan team came looking for me because they had forgotten to get my signature on the consent form! He was wearing a radiation detector badge and it started beeping like mad as he approached me to give me the form. He stepped back while I signed it, then as he took it from me, the badge went off again. No doubt whatsoever that I was very radioactive.

Today I've been for a blood test. Scan results aren't back yet. Apparently my neutrophils got as high as 1.4 at some point last week but the latest one (Friday) was 0.7, so I still need to take all precautions to avoid infections.

Hi OP.. I've been following your journey and I look for your posts and hopefully progress every day..
I'm wondering how you are these last few days..
Sending healing vibes over the t'internet..

Nothing much to report. No scan results yet; hopefully Friday but it may be next week. Hoping to meet a friend tomorrow in the pub beer garden.

The fatigue is awful. Just pottering around at home a little bit and I keep having to sit down and rest.

Hi Joy. I was wondering about you too. Sorry you are feeling so tired. I hope you have a lovely time with your friend tomorrow and keeping my fingers crossed for those results x

I did have a lovely time. We hadn't been there long when another friend turned up! She didn't know we were there, but had an unexpected free afternoon so decided to go sit in the beer garden with a book. So nice to see them both.

Little glimpses of normal life .... how precious they are!

Got my scan result today. The best possible news: no cancer showing up at all!!!!!!!

It's not all sunshine and roses: bloods are still low (haemoglobin, platelets and neutrophils) and I might need some injections/drugs to stimulate those. But I’ll take that over lymphoma any day.

Also, there's something in my bowel: not lymphoma, hopefully just a polyp, so I'll have a camera test (? colonoscopy, ? flexi sig) at some point, but that will be weeks away as it's a routine referral, not urgent.

I'm celebrating with a 0% G&T with fresh berries in it.

Fabulous news! So very pleased for you.