I was first diagnosed in January 2003. I had been suffering from an infection, which had caused a rash to my stomach, back in 2002. I had gone to the doctors about it and kept going back and having blood tests, which showed my white cell count was not going down as it should. A doctor, after a few months of this, decided to refer me. I saw a consultant at my local hospital, who said it could be numerous things, including chronic lymphocytic leukaemia (CLL), but that I was too young for that, being 38.
Well, I came back in the January with my wife to find it was CLL and I was the consultants third youngest patient. I would say my feelings at the time were one of nothing, as it did not really hit me and the consultant was very positive about the future. I was given booklets and Watch and Wait was explained.
I would say nothing really hit me until things went downhill a number of years later, and as the consultant was positive, this helped me a lot. The only times things really hit in were when I was coming up to treatment, as probably reality was hitting then.
Before diagnosis, I knew nothing of CLL. All I knew was that there was cancer, but did not realise it had many faces. I would say to anyone, don’t look anything up on the internet, as this frightened the life out of my wife. If you want anything explained, speak to the hospital staff, as I cannot praise them enough, or speak to organisations like Leukaemia Care, or Macmillan.
My wife was there from the start. My parents didn’t really understand, but telling the children was the hardest. As they were so young, five, one and unborn at the start, as years went by and I was attending hospital and then in 2007 having my first lot of chemo, we told them dad had funny blood. We found this was the best way to tell them, so we were not keeping them out the picture. As they got older, they were told exactly what was happening. My two oldest, the boys, eventually went for a session of counselling with our local hospice, which they say helped a lot.
Friends were told over a period of time. We found that some kept contact; others have said since, especially after transplant, that they didn’t know what to say and kept their distance, but have come back saying this and that they felt they shouldn’t have. Others ignored what was going on and have not been back as a friend since. It was hard, but we are all human and at times like this in life you find out who are true friends.
With my job, I told my mangers and they were really good and kept it in confidence. Work colleagues were told as things worsened. I must say, after being ill long-term with an injury and with no support before this, I could not fault them with the help and support with the cancer diagnosis, especially when I was off for so long with chemo that didn’t work and then transplant. This may have something to do with being employed by a Government department and not a company, as I have heard horror stories from others.
I was on Watch and Wait for four years before treatment in 2007. This reduced my cell count, until 2010, when it started to rise again. In 2011, it got to over 100, so chemo was given again. This did not work and after three goes it was stopped and I started the process of transplant.
I can understand why they use Watch and Wait; why give treatment when it’s not needed. I knew the times I had to be treated, as my white cell count went “mad” and got so high that without treatment, I would not have been in a good place. I remember before one of my treatments telling my consultant that when I was walking upstairs I was out of breath, but this was not happening when exercising. She discovered that my tonsils were extremely enlarged thanks to CLL and was operated on and had them removed.
At first, I wanted something to get rid of the leukaemia, but looking back now Watch and Wait is the best thing, as why interfere when there is potentially no need? When I went to see a CLL specialist in Leeds, he had people who had been on Watch and Wait for years, some without needing treatment, whilst others had been on Watch and Wait for 15 years plus after treatment; I was obviously one of the unlucky ones.
I am sure I was offered support, but when you are waiting and feeling fine, do you really need it? And I was plodding along happily. As I have said previously, things did not hit me until appointment or treatment. Was this because I was in denial? I don’t think so, I just got along with life in between. Keeping busy and having hope that everything was under control helped me through, but it was always there in the back of my mind.
I cannot remember doing anything specific to prepare for chemo, I was just feeling so rotten that this was taking all of my time. The first lot of chemo was a new thing, so I was not prepared for what was going to happen. I was on six days of tablets. After the first three days and no reaction, I was thinking well this is okay, but then it hit and the last cycle was so hard to take. Knowing I was feeling bad, this lot of tablets was going to make me feel worse. Even writing this is bringing back a retch! You had to drop the tablets in a pot, there was something like 15 of the little monsters, and then you had to pick them out with a spoon as they could not be touched. It is only in the last few years that I can now drink apple and blackcurrant again. Why this I do not know, as I used many different flavoured drinks to take the tablets. I used to think, why I can’t have it through a drip, but speaking to a friend who had her treatment for another cancer like this, you have the trouble of pushing yourself to get to hospital.
After day three the after effects came, feeling so bad and sick and tired. The bucket next to the bed was a constant and complete loss of appetite, pushing myself to get washed.
With my job being a police officer, I was under the health care officer. Before my first treatment was going to start, I had an appointment with her. She said a good idea is to shave your hair as short as you can, so when hair starts to drop out, it’s not as much on your pillow or in the shower. I thought this was a good idea, and as my wife was shaving it to grade one the tears were coming down her face.
I went to see the consultant to confirm everything and mentioned why my hair was short, to be told that with this treatment, hair loss doesn’t happen. It has always been an incident which always gives a smile to my face. The health care officer was so apologetic, but came round to see the funny side.
The support I got from the hospital was great, as I have said before, and work were good as well. I cannot fault either. The only think I would say, that as I was susceptible to infection, hardly anyone came to see me during chemo, and this made me feel so lonely. I would say to anyone, unless you have an infection, just half an hour a couple of times a week when someone is at their worst, or good old Skype or Facetime, would have been so nice.
Transplant was something which at the start of my diagnosis was to be avoided, but as I have found out during the years that treatments progress and the longer you can hang on, the better the treatment there is for you. I saw a CLL specialist in Leeds and he told me to use a certain drug. This was passed to my consultant at home, and this treatment has now come as a norm for my hospital. I remember being on forums before transplant with the majority of people saying no to transplant. Yes, the risk is great, but if chemo is not working as with me on my second cycle which was stopped, what else is there for you, as I was told I had two years left if I didn’t take it. With a young family, it was a no brainer.
Waiting to see if I had a match was nerve racking, but to go and find out I had five was unbelievable. It would have been better if my chest had behaved itself, as I went into hospital and it was then cancelled because of a chest infection, but a week or so later, they decided I had to have it. I thought chemo was bad, but the tiredness and lethargy was awful. Then it was in and out of hospital after six weeks, with infection after infection, but after never thinking I was going to get better, it is now six years later and I am so unbelievably different, healthy and back to running and being able to fight off infection.
Apart from the infections already mentioned, I have been hospitalised twice for cellulitis in my left foot. I have not had to manage any symptoms post-transplant, as luckily I have had none of the increased white cell count to cope with. I was always worried about what would happen if this did start up again, but having since being diagnosed with and undergoing treatment for bladder cancer, I feel I should be able to cope well, I hope!
I am currently fit as a fiddle. I still remember the phone call from the consultant saying after the biopsy I was in remission. I can remember giving no reaction, as I thought that day would never come. She has moved to another hospital now, as I tried for ages to speak with her to say how stunned I was.
At present, I go back to the hospital I received my transplant at once a year, and so my previous hospital has an input, I go their once a year, so it works out I see someone every six months. With me being so well, I have no problems as I approach them, and I know if I started to feel that things were not going well, I could be seen before the appointment.
Apart from having to go through a different cancer diagnosis, I feel proud to say I am back at work full time, doing what a non-cancer sufferer is doing. My wife keeps saying I should do a half marathon again, but it has always been a lifelong goal to do a full marathon. Whether my body could cope, as I have started to get a few niggling strains, is another matter, but watch this space.
Don’t worry about the what ifs. I know it isn’t easy, as treatment is not fun and really hard. Having that time where the count is behaving itself or only steadily rising is a good thing. Just keep remembering that the more time you have before treatment starts, the more chance they have of finding something that will be a better treatment. As already said, there have been numerous improvements since I was diagnosed 15 years ago, so take heart.