Ken C
Posted by

First Blog

Ken C
Posted by
17 Jul 2015

Hi all, This is my first blog after being invited to join the community. Well why not? We all have something to say!

I was first diagnosed with chronic lymphocytic leukaemia 2 & 1/2 years ago which, I am sure like many of you, came as a great shock. I will say the way I was informed was not good; but being a strong person I had to start to take it all in before I decided to head off home and tell the wife and family.

However, on leaving the hospital I decided to take a little detour to my local pub and have a pint, a sit down by myself and read the information supplied to me. It was becoming clear all was not lost and life can go on with CLL. My family was great and we all accepted the illness and decided to get on with life and treat it with respect but also with contempt as if it was not there. This statement might seem strange to some but it was the only way I could accept it.

Right from the start I got on with life and only 2 days later after the diagnosis I was off with Maureen on the motorbike to the Isle Of Man TT week. We had a great holiday and it gave us time to put things into perspective. We decided to go and see my own GP who is a fellow sailor and a real down to earth chap to discuss my diagnosis. His first words were "well Ken, what have we done to deserve this, but if it's cancer we have to have this is the one we want". He then went on to explain my condition in greater detail, but more importantly he told me of some of his patients who have had CLL for 20 years.

To be qute truthful this gave me a lot of hope and focused my mind on aiming to be one of those people. His next comment was "are you still riding those motorbikes?" I said that I was and he "that's alright then, the bike will probably kill you first!". We had a laugh and I came away from Doc's feeling much better about myself and the prospects for the future.

At my diagnosis I was 62 years old and two weeks before had just completed a bicycle ride through France from the Channel to the Med with my son, 700 miles in 7 days. I don't know how long I had CLL before my diagnosis but I was going into it in good shape. I immediately signed up for the Leukaemia and Lymphoma London Bikeathon and raised over £1100 in sponsorship for the charity.

I am also a very active dinghy sailor and have competed in many World and European Championships and I'm currently UK Masters champion in my Class. I continue to cycle and sail in the summers and gym and swim in winters. My oncologist is a great chap and has a positive attitude equal to my own. Between us we have an understanding that I must continue to stay fit, eat healthy, maintain my weight and keep alcohol and other bad stuff to a minimum. 

I actually look forward to my appointments that used to be every 4 months and is now every 6 months and 2 & 1/2 years down the line my lymphocyte count has remained pretty stable. So things are still looking good and I can report that next week (20 July) I will be travelling to Poland with my dinghy and wife in tow to take part in the world championships.

Perhaps I should add a little bit about my symptoms, I have a constant silly cough and sore throat and I have to monitor my rest time to enable me to preserve energy for times when I need it. I also have to make sure that when sailing or cycling that I have enough nutrition for the duration of the race or ride. If I don't keep my nutrition level up I suffer slight dizzy spells and 'Hit the wall'. (It could also be being 64!). So I would just like to say, stay motivated and make the most of every day, Good luck to all fellow sufferers. I'll supply further blogs on my return from Poland. Regards, Ken.     

Comments

20.07.2015

Ken this blog is absolutely brilliant! Thank you so much for sharing!

It's great to hear that you're doing so well despite the CLL and that you have such a positive relationship with your consultant and GP. I have a similarly good relationship with my consultant and I must say it really does make a big difference.

Are you currently undergoing treatment for CLL or are you on watch and wait for the time being?

Anonymous
20.07.2015

Hi Andy, Thanks for your reply. I'm on watch and wait . Glad you also have a good relationship with your consultant. It certainly makes a difference. Stay positive buddy, together we will beat this. Advances in technology are being made every day. Ken

29.07.2015

        Hello ken how are you

 I was diagnosed a year ago with cll , and am on watch and wait. I have similar symptoms to you, energy loss dizziness etc.

So chin up mate, there's new treatments coming in all the time.

      Kind regards ,  Andy

I

Anonymous
30.07.2015

Hi, Andy yes as you say new treatment is always a good thing. I am happy being on the watch and wait, it means things are not so bad. That is how I look at it anyway. Nice to hear from you. I am in Poland right now sailing in a World Championships. Regards Ken.

Anonymous
30.07.2015

Good luck with the race Ken
Best wishes Andy

Anonymous
09.08.2015

Love reading peoples blogs thank you Ken for sharing. Might start my own. After 2yrs battling with my son and cancer I just thought I was suffering from exhaustion. Wasn't happy about how I was told I had CLL but heyho I've got it. It explains the tiredness and the odd lumps in my neck. To add to it I also now have fibromyalgia and they really are a great combination to make you feel crap. These blogs make me hopeful that you can live a normalish life with it . Thank you for sharing x

Anonymous
10.08.2015

Top Blog Ken. Stay strong. Sail through the storm. There is much life to be enjoyed after you send it to cancer.