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Bobbing about in MMR


Hi everyone

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All the best to you with your recovery.


Trying to understand and work out what’s the point of your comment, from the start of your illness to the position you’re in now you should be showing nothing but gratitude, to the fantastic care you have been given, and now you’re in MMR Don’t want you taking this the wrong way, but what else could you wish, more than the second chance to life you’ve been given!

No point I guess... was trying to share some thoughts. Sorry if I've seemed ungrateful - I removed the offending comment and will think twice about posting my thoughts again!

Dear, I see that he is a man of numbers, me too, but I realized that not everything is a matter of numbers, statistics, percentages, answers, surveys and studies. The cure is in ourselves and how we face the diagnosis. You do not have a serious illness, you have a diagnosis and you will have to live with it, you will see obvious gray days but it depends on each one that is done with it. I am very happy that after reaching the desired response, and considering that it will have a long and prosperous life, you should feel grateful. Do not worry so much friend, and continue doing your treatment as before, if there is something I learned with this diagnosis is that you have to live HERE AND NOW, be grateful and put all of my, is a challenge and much learning. Sometimes life is unfair dear friend, WELCOME TO HER. if there is something that we are not going to win is death. So less fear and more action that everything is to come. Living with fear is not an option, choosing the life I want to live if it is. My best wishes to all of us who cross this path, trust in God, the universe, science and in us. In the future, wonderful things will come, we are on the right track, GREETINGS. Sorry for my English

That is such a great response. Thank you so much for making me feel better and bringing some support to this support forum! Don't we all have bad days?!

Came in late here and never saw the deleted post.  Am guessing, but I suspect there was some understandable venting of despair and anger.  Whenever you hear the word "leukemia" and it is directed at YOU, the result is a step into a whirlwind.  All bets are off and all - any and ALL - feelings are legit.  If I can offer something from my own 9-year experience, it is that I found the gratitude thing didn't kick in until later - MUCH later!  We're all on our own timetables with this stuff.  This is a forum where all feelings should be supported.  I've been angry, self-pitying, obsessed, selfish, ungrateful, whining - the whole schmear.  I have sat, figuratively, in the middle of the grass field and howled, WHY ME??!!!!  It takes time -  and a little success in the CML fight - to bring about mental and emotional (and philosophical) stability.  Hang in there, Martin.

I’m still waiting to feel grateful but I am not there yet. I was only diagnosed 3 months ago and at the time it didn’t really sink in and I just took the meds as I was told and carried on with my life albeit in shock. I had significant bone pain in my head from the Nilotinib and exhaustive fatigue. I then got a stress fracture in my sacrum after returning to running, possibly due to a weakened pelvis after the bone marrow biopsy with severe pain on weightbearing . I also had a fall onto a marble floor and sustained a wrist pain with inflammation. I had sudddenly gone from being a runner, golfer and generally very active hyper person to  being an exhausted  grumpy inactive couch potatoe who was not allowed to run and had to have a sleep every afternoon 

It wasn’t until I came to the UK this week for a break in a new environment and went to see the CML specialists at Hammersmith and saw patients  struggling to move and breathe that i can see how lucky I am to have a treatment that can manage my illness. This doesn’t mean I don’t have bad days and probably will many times yet. One thing that has gotten me through is this forum where there is support  for whatever stage you are at from other people who understand fully what it is like to live with CML so Thank You to all of you. For that I am very grateful.