Hello, my name's Louize. I've got stage four follicular lymphoma.
I was diagnosed in June 2015 and I was 51 at the time.
At first I think they thought it was a parotid (salivary gland) tumour but it was unclear
so they took the whole lump out through a surgical procedure.
Even though I knew that it was a likely outcome
I was still very shocked on the day that it was confirmed for me.
Fortunately I had my husband there so he was listening and hearing things that I wasn't,
because I think I was just very shocked and very anxious.
So I can't really recall exactly what was said to me,
except two very conflicting things, in my memory, which were, 'you've got advanced stage follicular lymphoma,
but we're not going to offer you any treatment at the moment.'
At first, to be told I wasn't going to be offered any treatment was quite shocking
and I worried that that meant that I wasn't going to survive very long.
But I think during the consultation I did start to hear that because I was fit and well,
I was going to be on a watch and wait regime and I did understand the rationale for it pretty quickly.
I think because I'd spent a few weeks and I'd had surgery,
and the surgeon had told me that what he'd removed looked malignant,
it wasn't a surprise that it was a cancer.
I think I'd started to mentally prepare to go straight into chemotherapy
so the positives for me about being on watch and wait were that that wasn't going to happen immediately.
So I did feel when it was explained to me that because I didn't have any symptoms
and because I was well, I wouldn't have treatment yet,
but it would be at some point in my future.
I felt I'd got a bit of a reprieve if I'm honest.
My children were only 12 and 16 at the time.
I talked about it as a blood cancer, that the type I had was something I was going to have to live with.
I avoided using the words like 'not curable' because I think that's frightening, especially for my younger child
and I said that because I'm fit and well and I have no symptoms, I'm not being treated yet
but treatment will come at some point in the future and we'll talk about that when it comes.
My watch and wait period went on for 2 years and 9 months and I was probably pretty fit and well,
in fact I barely had a cold.
I didn't ever have any 'B symptoms'.
Once you get a diagnosis of lymphoma you are a bit hyper vigilant, I think,
about whether you have symptoms.
I'm also menopausal, so I'd get a bit hot from time to time
but I certainly didn't have any drenching night sweats, I didn't lose weight, I didn't have persistent infections
and I wasn't excessively fatigued.
I mean I'm 54 now. I'm a bit tired in the afternoon and as I say,
menopause is going on somewhere in the middle of it all.
What I did have though were quite visible lumps and so this one was the first one I noticed
but once I knew that there was some more around here, from the scans, they did get bigger.
In about February of this year, so we're now in July,
I started to get what I thought were migraine headaches.
I finally got around to taking my blood pressure and it was very high and my blood pressure isn't usually.
So I went to the GP at that point. They took some blood tests, noticed my kidneys weren't functioning very well.
So I involved the lymphoma team at that point.
They were saying it may well not be a lymphoma but we'll fast-track a scan for you,
which they did and although my disease hadn't really progressed,
I was just unlucky.
I had two lymph node tumours that had just arrived, sitting on the tubes between my kidneys and my bladder.
So my kidneys were failing really which was the crisis that got me into hospital and started the chemo.
When I was first told that I had a blood cancer, I was very frightened about chemotherapy.
I'd known people have cancer in my younger years and they'd really struggled with chemotherapy.
They'd spent a lot of time being unwell, so I think I thought that's what would be ahead of me
and it hasn't been like that.
I spent a lot of time ruminating about hair loss in my watch and wait years.
I had long, curly hair, always. It was the only thing that really upset me when I was in hospital.
I found out I was going to have chemotherapy imminently
and that the chances of hair loss were virtually 100%.
Because I knew chemo was coming, when it came there was some element of peacefulness about it, strangely,
that it was finally here.
I've been walking around for nearly three years with increasing lumps in my neck and wherever else,
wondering, will it be this year, will it be this month, will it be this holiday I cancel,
which bit of my life will it disrupt?
And so I suddenly had some certainty.
I'm delighted to have come to the end of my chemotherapy period
and the chemo hasn't been anywhere near as awful as my worst fears.
I'm hopeful of a complete remission, which means it disappears from all the scans
but of course it hangs around like an unwelcome guest, popping up at some point in the future.
I think the idea of going back on to watch and wait is... it's a different kind of watch and wait.
The last watch and wait, I was wondering around feeling these lumps and wondering what was going to happen.
I suppose the next watch and wait is, when does whatever kind of remission I've got come to an end
and what does the future hold but none of us know what the future holds really.
I've learned a lot about that in the last few years.
In the time I've had follicular lymphoma, people have been diagnosed with other cancers
that they didn't know they were going to have when I was diagnosed.
So how can anyone ever plan for anything?
Well, you just do and you keep your fingers crossed.
I've changed my job while I've had follicular lymphoma.
We've been all over the world; I have good travel insurance.
I'm kind of determined that it won't define me and it won't interfere with family life, particularly.
I think what I've really learned is that I need to speak to myself like I would speak to a friend
if they had this kind of thing going on, because I think I always expect too much of myself,
in a way I'd never expect it of somebody else.
I'd say of course you feel like that and of course, that's just normal.
So I've learnt to be a bit kinder to myself.
I think inevitably when you get a diagnosis of cancer you go through some kind of bereavement.
I recognised it as that.
I wish I joined support groups earlier. Just being in the room in the first five minutes
with everybody else who'd been told, 'you've got lymphoma', was so reassuring.
And the Facebook group which has really come into its own while I've been in treatment
but it was just good to have that, like a little comfort blanket, out there somewhere,
of other people that had walked in my shoes.
I found those things very, very reassuring.
But what I did notice, when I was preparing, thinking about what to say,
I now call it 'my lymphoma' and I used to call it 'the lymphoma'.
So at some point in the watch and wait period, I've actually accepted that it's become part of me
but it won't define me. I think that's been very important to me.