Survival

Hello

i really would not worry.  If you have been cancer free for 15 years and are up to date with all your checks and attend all your health care appointments then you’ve got lots of sunny days ahead.

Just keep living your best life. 
Sylv

Hi Ofy, I am so sorry to hear about all the anxiety and fears you are living with, firstly can I suggest you ignore what is said in medical papers,  they are all out of date, using statistics years old and don't take into account the enormous progress in modern testing and treatments.

My story is similar to yours, I was born with serious heart issues, my parents were told, I d be lucky to make 5years old. Fortunately a new treatment was developed just in time for me, though it was 50/50 as to whether I would survive. I was subsequently told I might live to 18, then 30 then 35, Ofy, I will be 60yo next year and doing ok.

I can understand your fears, I too would worry about dying at times, and remember what an awful place it was to be in, but it's no way to live your life sweetheart, there's a very good chance you may never get cancer again, or if you should what amazing new treatments will be available, 

I too was lucky to find love at an early age, and  decided I would focus on that and all the good things in life and make the most of our time together, and here we are 40 years later, 4 wonderful kids and 10 wonderful grandkids, and who's to say you can't have a life like this, you have many years ahead of you, a life to live and enjoy to share with the person you love, I know your still young, but I also know you know living your life,  enjoying your time, and getting on with living and who knows starting a family, is so much better than a life of fear and worry, best wishes to you both

Eddie xx 

Hi OFy and a very warm welcome to the Macmillan Community but sorry to hear about your concerns.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of Non Hodgkins Lymphoma…. eventually reaching Stage 4a in late 2013 when a second, also rare but very aggressive Non Hodgkins Lymphoma was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

The bottom line is, that like me, you are a statistic of one…… if I was to investigate and study medical papers and journals about my types of NHL I should have been dead many years ago…… but the medical world moves very very quickly and the information available to us mortals does not keep up to date….. but the medical profession has far more up to date info so your first stop to talk this through would be your medical professionals.

Back in late 2013 when my condition became very aggressive to the point that I only had a few years on the click and only a successful Allo (donor) Stem Cell Transplant was going to stop this…… so in reality this was my last role of the dice…. I actually had 2 as my first did not work……… but 9 years on I am living a great life at 69…… The most important thing is that over these past 9 years a few new drugs have come on line for my types of NHL of Lymphoma so I now have a fall back should my Lymphoma kick off again.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….

     Acute lymphoblastic leukaemia

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with ALL in it so worth checking out and more importantly this hers was first diagnosed in their mid 20s……. they are now in their mid 60s

Always around to help more or just to chat.