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.)

I've been following your journey and I'm sending healing vibes through the airwaves.

Oh, I'm so sorry. What a day.

Communication is bloody awful in hospitals. Those conversations took me back to my son's hospital stay.

Tomorrow is a new day. I hope it is a much better one for you xx

Flipping heck @Ohjoyohbliss talk about kick a woman when she is already low. May things improve. I am sending you imaginary pack of googly eyes to stick on random bits of equipment to give you a giggle when you spot them

Oh no - Joy you’re near me I think - if you need anything just shout

Bloody nightmare, Joy. As if being poorly isn’t enough, cak handed treatment is a giant kick in the [insert whatever suits].
Many people in the internet who have never met you are rooting for you.

Just to add insult to injury, the woman opposite me was admitted this morning, had a line inserted straight away and was already on the unit being done when I made my first (abortive because I had no line) visit here this morning. Looks like she's all done now, having her line removed and will be good to go. Why couldn't that have been me?

Instead, I had a pointless night on the ward with very little sleep, shit food, messed about repeatedly this morning, and stuck here until goodness knows what time tonight. I've been told at least 2 more hours on the machine, then transfer back to the ward to get the line removed (normally they do it here but presumably they want to go home ASAP.) Then it's up to the ward what time they discharge me.

I really feel like a second class citizen.

Oh Joy, massive hugs to you. This is just totally crap. Hand hold and fingers crossed this bit is over soon.

I have been following your updates OP. I'm furious for you and the lack of competence from the medical staff. Hoping the issue with the line will be sorted soon.
I had cancer (a different type) 10 years ago and suffered from a lot of inconpetence in the hospital too. I'm sorry this is so shit. But you are strong. I'm keeping my fingers crossed for you. x

Wouldn't you just know it, I got a clot in the line not long before the end. They couldn't draw it out, so they had to cut the procedure short. So now I'm worried that they won't have got enough and I'll have to go through this all again in future.

Oh Joy. I am sorry. Have they given any indication about whether or not enough or do you have to wait for them to tell you? And if so would it be soon or in a few days? You must be exhausted.

I am so sorry ... what a difficult time you have had. Hope you are able to rest now.

Yea I've looked after many a patient, you can't drag the setup like an infusion but the actual removal/return blood lines are relatively long so you dont have to be super still either xx

Oh Joy, just reading what you went through yesterday. It sounds awful and maybe you could email PALs or similar. It’s hard enough share going through already, but to then receive substandard care is just insult to injury. Thinking of you 🌟and giving you a gold star! You are doing great just putting one foot in front of the other!

Hi @Ohjoyohbliss I really hope today is a better day for you . Gentle hugs and empathy coming your way.,

I was considering PALS yesterday but I still have a lot more very scary treatment to get through and I don't want to be flagged as "that trouble-causing patient".

I've documented it all here and I may revisit my decision afterwards, if I survive the treatment.

Do you have a 'link' person/ nurse? I think they are rare as hen's teeth but do exist in some places. Someone you can talk to/ ask questions and explain what has happened etc.

Your treatment was chaotic and not satisfactory for sure, but maybe park the PALS idea for the minute and give yourself time to get stuck into the new treatment. You will worry about becoming "that patient" as you say. I do not think that is a serious worry from my own experience, but it is about focussing your energy on moving you forward in your treatment rather than adding a new worry! Take care.

I do, at Leeds. I messaged her yesterday but she wasn't working. She didn't suggest anyone else to contact.

She has previously been really good about answering questions and helping me with things.

The one time I used PALS, it was more of an appeal for help as I was feeling too awful to sort it out myself. I basically emailed late one night not really expecting an answer, and a nice person called me back the next day, had a chat, went away and untangled some bureaucratic knots and came back with an update and a sensible plan.

If you do have the energy, then maybe it’s worth telling them what happened and how worried you are, and asking for their help in making things go more smoothly?

I am sorry she wasn't around Joy. Perhaps when she is you will be able to explain what has happened and she may be able to advocate for you if you don't have the energy.

Oh gosh is that like a port thing? I had one done years ago and whole experience was a nightmare. Really really awful !! You have my total sympathy I sobbed through the whole thing too xxBut once you’ve got it they are brilliant for treatments they really really are and very easy to take out when you’re finished . I had another one done years later and that was really easy, but the first time was blood awful cx

Have you heard yet whether they got enough because of the clot in the line towards the end?

I’m waiting for a test result to come back before GP sends off 2WW Urgent Cancer referral form to hospital for further investigation - so far has been a week and no sign of the test result as yet. Drumming fingers stage now … I don’t understand why the 2WW referral can’t go off without the test result, given it will go off whether the result is positive or negative … seems unnecessary duplication of waiting but hey ho, there must be a reason lol!

How’s it all going @Ohjoyohbliss?

@ohjoyohblisshave the said yet whether they collected enough the other day? How are you feeling?

Tonight I drove the car for the first time since August. Not far, only to the other end of the village and back, but it's a start. It feels like a big achievement.

I passed my driving test first time at 17 and I was so confident in my driving ability. Now I'm really timid and doubt myself. Another way in which I have aged 20 years in the last six months.