Hello, my name is Kate. I'm 78 now but I was diagnosed in 1998 when I was 58 years of age.
I was misdiagnosed at first. I was told I had mantle cell lymphoma
and within three weeks of seeing the consultant, I started treatment with the chemotherapy CHOP,
which is pretty aggressive.
I had three months of CHOP and then a second bone marrow biopsy showed
that the bone marrow was still full of malignant cells.
So I asked for a second opinion and he actually phoned me up at home
and told me that I actually had small lymphocytic lymphoma.
Because I've had such good care and so much good support and kindness shown to me,
I think I've managed quite well to live with this cancer, although originally, when you're first diagnosed
- I don't know how it affected anyone else -
but I used to look at people walking past and think,
[gasps] 'gosh, how lucky they are, because they haven't got cancer.'
But it's something you deal with, isn't it.
I always say it's a bit like a special club, with a rather high joining fee, but you really meet good people there.
I did have one experience: after I'd been shown the slide of my bone marrow,
where the consultant said it was grossly infiltrated and the slide was full of purple cells with one or two yellow ones,
I couldn't get that image of that bone marrow out of my head. It just was there all the time.
I went to a cancer help clinic that offered visualization techniques,
because I was very into it shortly after diagnosis,
and I saw a lady and she said to me, 'what does it remind you of, that view of your slide?'
And straight away it reminded me of a night sky with stars, and that was it.
It worked on me like a charm, because I've always loved the night sky and stars.
I thought, 'well if that's what's going to kill me, fair enough really. I'm okay with that.
It's not frightening me anymore.' And it never did again.
Within two years I had chlorambucil, which was a lot easier than CHOP,
and then again two years later I had chlorambucil and rituximab, and then again two years later.
So I felt as if it wasn't worth planning anything because I was only going to get two years gap
before I had to start treatment again.
But then I had FMD chemotherapy and that gave me five years of remission.
Even though it was only a partial remission, I've never had a complete remission, it's always just been partial,
that five years allowed me to forget all about SLL, to put it on the back burner and just start enjoying life again.
Then five years after FMD, I then went on to bendamustine and rituximab again,
and that, well it was almost six years before last year,
when I started on ibrutinib and venetoclax with the CLARITY trial.
As I approach each check up appointment, I mentally don't feel too stressed
but I find I must be physically because my blood pressure is very high, whereas normally it's very low,
so I guess there is some underlying tension and anxiety.
It's always what the counts are doing and you have your blood taken
and you've got that anxious wait until the results come back.
My husband and I, and he comes every single time I go, we have found a nice little restaurant
and we go and we have lunch and we have wine and we celebrate.
When the counts are good or bad, it's worth celebrating - we've done another appointment and got that over with.
But when you find out that you need treatment again, and this is my sixth lot of treatment
so I have found that out quite a few times,
it is a bit... disturbing and it's how you cope with it.
I think what I used to try and do was improve my general health
so that I felt as if I was contributing something towards the effect of the chemotherapy.
It helps to try and eat well, sleep well, start listening to your body if it says you've done too much,
'no I don't want to do that' - don't do it.
Be more aware of what you can do and what you can't do.
It is difficult finding out you can't do what you usually could always do, but it's something you do get used to.
You lower your expectations a little bit, like I know I'm never going to go skiing or rock climbing [laughs]
but there again I've never been that ambitious to do those anyway.
I think I've had a great life and I'm more inclined for quality rather than quantity.
I think these 20 years of living with this blood cancer,
it really makes you appreciate every small thing about life and there are so many good things
that I wake up most every morning thinking, 'great what is today going to bring?'
I live with it, I'm not dying with it.
The best thing is to enjoy life and I just think 20 years, I didn't expect to get 20 years
and they've been good apart from the odd time [laughs] when you're not feeling so brilliant with chemotherapy
but that's a small price to pay, it really is.