I was at Oxford on Thursday it was nice to catch up with Dr Anna Schuh
My Bloods were ok but I am now early stage B still all that means is more fundraising and still a way to go,
Dr Schuh mentioned when I asked about the new treatments that in the next 2-3 years the will look to move away from FCR towards the new treatments immunotherapy
Good news but I feel a bit flat I didn't mind being stage A but early stage B anyway we are moving closer to a cure so I guess fundraising does make a difference, there are some good supporters here but if anyone can help then please do so.
7 years ago I was devastated to here I had CLL I thought that was it for me and I did think well if that was the case I would decide what happened to me, not Cancer I did consider being out on my bike speeding along just close my eyes and it could be all over but then I also thought why not try to do something about it so I started fundraising it gave me a focus meet loads of great people ok I realise I am never going to find a cure but at least I can try
Jules flying for us all
Thanks to those who have supported me past and present and if anyone else would like to help I have two pages one for the CLLSA and one for Bloodwise Leukaemia and Lymphoma research
I am Cycling from Daventry Northants to Paris in July this year
Sorry to hear the CLL is progressing, but the good side is slowly by the sound of it. The fundraising sure does make a difference, however, I suggest there is something more important in what you are doing in some ways. It is inspiring to others to see what is possible despite CLL. Your cycling and fundraising shows what I think - that it can be a symbiosis between person and CLL. Read - we learn to live together and get on with life.
Go slow on the progression, go faster on the cycling.
I think we all hope really that we're going to hang around in Stage A even if we don't admit it to ourselves. But hey, early stage B aint so bad. Keep those pedals going round Jules 😀
I think we would all feel as if someone had taken the wind out of our sails if we had your diagnosis. Many before you have been through this and understand, and many are the people who have come out the other side and are enjoying their new feelings of health.
We who have been in our community for a number of years feel we know you quite well by now. We recognise your spirit, your commitment to doing good and your upbeat attitude to adversity. So we know that once you come to grips with the diagnosis, you will once again be our own cheerleader moving onward and upwards and more than doing your bit for us all.
Never doubt that you are appreciated, and no matter what life throws at you, erase thoughts of riding into your last sunset, that would not be our flyer, riding for us all.
For your encouragement, I was diagnosed well into stage B at diagnosis but still waited 4 years before treatment was needed (though I know we are all different). So you may well have an array of options when your turn comes round - and often treatment isn't the end - but is the beginning of feeling better than you ever did in the previous months and years.
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Update
Update on Oxford...
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Webinar on CLL treatment - a Changing Landscape
Who's coming to the fatigue meeting in Oxford?
