Hi ALL
I Was On "watch and wait" now "watch and live", much has changed since diagnosis, many symptoms and side effects, but many more friends than those, who have helped me learn about the disease and how to live again. I have met many of us far and wide, young and old, pretreatment "watch and wait", first treatment, "watch and wait/remission", in further treatments and sadly have lost a few. All are friends who affect my life in one shape or form and allowed me to grow as a person. Realising now that this dreadful disease has opened as many doors as it has and may close.
I also realise that although rare we have perhaps one of the most common leukaemia's diagnosed within the adult population. Where are we all then? 3,300 of us are diagnosed every year. Add that to existing patients then we become a much larger picture. When we are dismissed as "chronic" because of peoples perception or belief that the name we are given will allow treatment as if we have a truly manageable condition, is so wrong!!!!
"Although this categorization no longer distinguishes these diseases as indolent or aggressive, the low-grade B-cell disorders are still evaluated along these lines.3These disorders are often considered chronic diseases of the elderly, and patients are thought likely to die of unrelated causes. These assumptions are incorrect and, to a certain extent, have hampered progress in this field."
Even though this paper is old, in cll terms, 2004/5 it is for the most part are as valid today as it was then (if not more so). With a few tweaks, the 'new science' has done very little to change the way patients are approached
today
CLL, SLL, HCL are serious cancers that will cause much heart ache, torturous waiting during periods of apparent disease inactivity, while overcoming and living with a compromised immunity accompanied by many side effects/symptoms. To be interrupted by moments of panic as intervention with Chemo a combination or an antibody therapy are required, to then be returned to the torturous wait with a potentially reduced quality of life until the next time,(hopefully a long way off) Is it fortunate to be told in time we may find you have an indolent form, are you really one of the fortunate to be told at diagnosis your version of incurable cancer may not require treatment? How do you know at this stage what may happen? As overtime as your disease follows it's course and through learning and testing you to wait for what can feel like an eternity to find out which cards have been dealt!! Is the gift of a longer survival without the chance of swift intervention a blessing? I THINK NOT
Add this to some of the rest and it's tantamount to abuse, we have to carry on in a limbo world, dismissing the wait and worry element and pretend we can carry on as before. Well we can't we need to make adjustments in a world without understanding, living with the conflicts caused by even the closest to us not understanding what the normal looking person in front of them is experiencing physically and mentally. We are under supported and without a voice, perhaps if we can use our minority volume we can create a space where we can find each other and speak openly about the specifics of our plight.
Part of the reason I have come back to Macmillan's is to find the few of us who are here and hope to make friends in a space others can come to and share their CLL, SLL, HCL experiences, fears, hopes, joys and needs. I know there are a few die hard core members holding the flag and a developing HCL community. But I know many of us just come and go as we also have some very specific care short comings and many cannot relate and even feel guilty when their friends are going through what can be a very visible, hasty phase of treating an aggressive cancer and all that comes with it. Chinese water torture gets there in the end it's constant and over time can drive you mad. Like, when you may wish to treat and cant treat and have to adjust to letting your cancer grow and saturate your system, whilst meddling with the apparatus along the way, then you can treat!
Your friends don't understand why nothing is happening, therefor it can't be serious, oops they get bored, time to move on!!! Thank god for these facilities.
My return rant over, I hope we can meet and share and make new friends helping us grow as we travel with this disease. So thought I'd start a space here at Macmillan's where some of us could come together if we wish.Many are working towards us recieving a fair shake and new therapies are on the horizon. only today Canadian scientists have announced they have isolated a human blood stem cell in its purest form - as a single stem cell capable of regenerating the entire blood system.
http://medicalxpress.com/news/2011-07-pure-human-blood-stem-cell-discovery.html
Abstract: http://www.sciencemag.org/content/333/6039/218
Nick (:
