Nearly two years ago when I had begun to get a handle on living with chronic lymphocytic leukaemia I wrote to a friend who was also back behind the wheel. Little did I know of another positive development and a car connection that may change our future.
I’m glad to hear that you are back behind the wheel again, perhaps life is a little like driving our car. When behind the wheel I am more in control of my destiny, as a passenger I am an observer and have to rely on the skills of someone else’s driving. (Yes I can still get side swiped or be distracted by a cat crossing the road) But it is me who has to react to the situation at hand.
Maybe living with CLL is like driving a new car? This one’s a manual, not an automatic. So now I have to learn how to use the clutch and select a gear that suits my abilities at the time. If I’m driving it is me who can put the brakes on or throttle up, to suit my own speed. So the speed limits are set by the disease at times, but like on the road, if I break the limits, I choose to take the risks.
When driving I can decide where I want to go, when, what route, and at what speed. I can ignore the signs on the road, but I’m sure if I follow the signs, I will have a better chance of getting to where I’m going. But what if you’re someone who’s never driven a car before? You have the operation manual to learn, the Highway Code and you have to be taught the correct way to drive, if you want to get a licence.
I think I’ve learnt enough from the new vehicle manual, learnt the new Highway Code and with the help of my friends learnt how to drive this new beast. So am back on the road, behind the wheel. Driving to decisions made with the help of specialists of my choice. Where this new car will take me I don’t know. But when living life do you expect to know what’s in the future?
Probably not, but when I take the map out of the glove box (or use sat nav), test tyre pressure, test oil levels, test windscreen water levels and make sure the correct fuel’s in the tank. I know I have a better chance of completing a long journey. The pleasure of achieving along the way is one of the rewards of living.
I am now Living with CLL and may one day drive it away in a CART..
Chimeric Antigen Receptors (CAR) have been making news in CLL research for two years. In this video Professor John Gribben, from the London School of Medicine, explained last year a breakthrough in immune therapy that may lead to a cure in the future.
You can watch this interview from this link:
There is a general feeling of optimism within the clinical research community that has accelerated over the past few years new avenues of research and novel small molecule therapies and CART are suggesting we may be close to a breakthrough and the discovery of a true management solution even the word Cure within time frames of 8 to 12 years with confidence. Some of these novel therapies are now coming into trial in the UK and early data is suggesting that even the hardest to treat CLL types are showing a positive responses.
Leukaemia and Lymphoma research hosted a Cardiff CLL Open Day at the University Hospital of Wales last month when much of the reason for this optimism and the new research where explained to the CLL patient community you can access audio broadcasts with power points of these exciting talks below:
Professor Chris Bunce - How we're beating CLL
Professor Chris Fegan - What are the problems faced by CLL patients
Dr Guy Pratt - The Leukaemia & Lymphoma Research Trials Acceleration Programme