Yorkshire man
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The struggle

Yorkshire man
Posted by
17 Mar 2016

Having been given the devastation news of a disease I had heard of but knew nothing about, I read everything I could on the various aspect and medications given. I wrote about my thoughts and progress.

Having lead a reasonably healthy life for all of my life, it was quite a devastating blow to be informed that I had Chronic T cell Polylymphocytic Leukaemia. I am the kind of person who likes to know as much as I can about things which affect me, so I did loads of searching on the internet, rightly or wrongly, in order to find out as much as I could about this disease, side effects and treatment. Admittedly some of this is out of date and quite frightening, but I found it necessary to help me get through, so I realised very early that it was not going to be an easy ride. Research is progressing daily and one can but hope.

After about five weeks of tests and waiting, numerous blood and platelet transfusions later I began my treatment of Chemotherapy, a course of up to eighteen weeks, at three times a week, so I was in for a gruelling time.

There was no one whom I could ask what to expect so I was heading blindly into the future. 

Again being the sort of person I am I have written about my experiences, feelings and path through to the current day.

I now have been given the good news that I am in remission although my blood counts are still improving, I am constantly being reminded that the disease will come back, the question is when. I hope that when it does then science will have found this cure we all want. 

 

Comments

Eleanor Baggley
18.03.2016

Thank you for sharing this with us. I'm so sorry to hear of your diagnosis, though it's great that you're now in remission - long may that continue. It sounds like you've been through a really difficult time, but also that you knew quite early on the sort of things you could do to keep going - research and writing. If there is ever anything we can do to support you, either now or in the future, please do not hesitate to get in touch via our Support Line (0808 2080 888) or email (support@bloodwise.org.uk). We can certainly get some information together about research into the disease if that would be helpful. My best wishes, Eleanor

06.04.2016

Thank you. It was a great shock to the system both emotionally and physically. The course of chemo I was on took eighteen weeks at three times a week, so my life was going to the hospital and coming home, wondering if it was going to be the last time I did anything etc. I have quite a positive outlok and a very supportive close family and friends and together we have come through the first stage. I did not make if common news but that was and is my decision as I am a private person. I am to see my consultant again next week and hopefully the news will continue to be good, there is always the slight reservation though. I hardly think about the desease these days.

17.06.2017

I have now been in remission for nearly eighteen months and long may it last. My blood count is still holding and although my Platelet level is low it is improving since I came of the last Anti Biotic tablet. I have a couple of side effects which are still ongoing, one being a ringing in my ears which came on whilst I was on Chemo, the other is redness to my skin mainly on my torso and face, with a burning sensation in my face and ears, this started whilst I was still taking the Co-Trioxamazole tablets and I think that it couls be a side effect from that. I was taking those tablets for nearly eighteen moths twice a day three times each week. Since coming off those my Platelet count has increased slightly. I am on Watch and Wait with three monthly visits to my consultant who has just asked me to try an Anti Depressant tablet Duloxetine, which although I am not depressed it is said that it has other benefits and it is hoped that the redness will go. I think there is a slight improvment although it is early days yet. So all is still good.