High Grade Diffuse large B-cell Lymphoma: Carole's story
Being in my 50s, I thought, I'm going through the change, going through menopause. You get tired, sleepless, hot flushes, blah blah blah. But the thing that made me go to the doctors, was that I found black in my poo. I thought, that's not right, I need to go to the doctor.
I went and she said, 'okay, need to send you for an urgent gastroscopy'. Even then it didn't occur to me that it'd be anything serious at all. We were brought into the doctor's office afterwards and he said, 'found something and it's quite serious. I think you've got stomach cancer.' Which was like, 'wow, didn't expect that.' From then on, it got better, as it wasn't stomach cancer and I was diagnosed with Non-Hodgkin lymphoma. When you're diagnosed, it's like a juggernaut that hits you and you think of your mortality and what about the kids. I had a daughter at university, but we waited to pick her up from university and we told both of them together. It was awful, awful telling them, but we got through it and we ended up managing to be really positive.
I'm a woman, losing my hair. Oh my god, how stupid was I to worry about losing my hair. When it's falling out and you're looking bald, you're thinking, 'oh god, this is awful'. But once it's fallen out, well so what? There's nothing you can do about it, and losing your hair is a tiny part of it really. Please don't worry about losing your hair! (Laughs) I had a chemotherapy called R-CHOP. I went in, I had to room to myself luckily, and nurses came in and told me what was going to happen, hooked me up to the drugs and by two o'clock, three o'clock, I was free.
I'd have lunch there. It was interesting for the first couple. As it went on, they got harder and harder. The fourth one was horrible but the fifth and sixth one, I just felt awful they were my worst times. I had a thing on my phone that said, 'how are you today?' So every day I would just fill in how I was feeling. I looked back last night and went through all my days and actually I felt sorry for myself. I look back on my chemo and think how positive we were and it was a horrible, horrible thing to go through.
But it was fine, a bit like childbirth, it's almost like you forget about it afterwards. But reading my day-to-day diary was really sad last night, because I was really sick and you try and remain positive all the time. Generally I was, but there were a few times I'd written that I'd cried, sat on the sofa and cried for no reason. I'd got a red face, dry mouth, couldn't taste anything. My taste buds were shot. Paul was great though. We got a chemo cookbook. That was quite interesting, to cook different things and to see what I fancied eating because I didn't fancy eating a lot of the time.
I had the gastroscopy after my third chemo and they said there was no more cancer in my stomach. The rest of the chemos were belt and braces. Then, in the December, I had a PET scan that told me I had no cancer. That was huge and I will forever celebrate that. Then we had a lovely Christmas, and at school it was our end of term night out and I said, 'well, if I've got no cancer, I'm coming and if I have (shakes head)'. So I walked in to the party and everybody was like 'yay', so they all knew.
That was a really nice celebration of it as well. Afterwards, all the side effects, they stay with you. The inside of my body felt rusty. It was hard to move things.
That's why I think maybe I should've done more exercise, maybe a bit more walking for my legs particularly. In the February, I went back to work and actually I shouldn't have gone back to work. You're feeling better and I was a little bit bored and I enjoy my job. I had a phased return. But, I realise, I was still an old woman walking down the corridors and going about my normal job, because you know how you feel in an environment. I remember walking down the corridor to one of the classrooms, thinking, 'yeah this is wrong'.
Anyway, I soldiered on and eventually I got better and better. I don't know how many gastroscopies I've had now and every time I see the same consultants and it's quite nice, we have a laugh, he says, 'oh, you here again'. I love having the gastroscopies. You have the sedation anyway, so it doesn't hurt, it's not a problem, but it means there's nothing in there. I do get a bit nervous before every one, and now I just have them once a year. I wanted to be open and talk about it.
That would be my advice I suppose: talk to other people about it. I had a couple of friends who came round and talked to me about going through it and we had a bit of a cry. It's a hard thing to go through, but we were very positive throughout the whole thing. I don't want to paint it as awful awful, because I look back at it and I was amazed it was so awful. So you forget about it and now, next week on the 31st of May, it will be four years since I've been diagnosed.
So, on Tuesday it will have been four years. Then in December it will be four years that I'm in remission. So, yay for me.
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