Who would know what could've been?

As someone who used to have a form of Leukaemia I receive a periodical quarterly called Journey, which is about all new treatments and stories about patients who have gone through one of the many varied forms of blood cancers.

I don't wish to be mean about it but they regard the stories as inspirational whereas I just find them to be saccharine sweet tales of how some family got through their own particular battle with their disease. They are usually double page spreads that simply don't allow for any in depth analysis of what happened to them and how they came through it, which I feel would be genuinely beneficial to other sufferers. The last thing patients need to be is patronised in my opinion and these pointless couple of hundred words can only really convey the message 'Look, this person didn't die so you might not too' and while that is an important and inspirational message it's quite simply not enough. 

What you also get in the magazine which I do like are updates on treatments that have been developed for individual types of blood cancer. This month it happens to mention my own type, Chronic Myeloid Leukaemia (CML) and the real progress being made in rendering that a disease that can be eradicated from the body. Back when I was first diagnosed there was a drug in trials called ST-571 that later became known as Imatinib (or Glivec) which was showing great results to that end. Over the decade or so in between some problems with taking that have been found and so the drug has been modified accordingly and the latest trial is using Diatinib and the results so far have been startling, showing large numbers of patients going into what is called major molecular remission, where the leukaemia cannot be detected.

Now part of me reads that with glee and another part wishes that it was me that was able to get such a treatment. Now that doesn't last very long as I'm crucially aware that we made all the right choices with the tools we had available at the time but my current condition is a bi-product of the treatment I underwent to cure me. There's no way of knowing what path my life would have taken if I had taken Imatinib rather than taking the Bone Marrow Transplant, especially bearing in mind that some patients who did take it then had to go on the Bone Marrow Registry so they could get a transplant because the Imatinib was no longer working for them. I was astronomically lucky to have a willing donor already and I regarded it as being a real kick in the teeth to those other patients who were waiting on a match if I didn't take my chance to be cured. I know you're meant to make decisions on your own health based only on what affects you but I wouldn't have been able to talk to the other patients again if I hadn't taken the plunge. I wish nothing but the best for the patients who are now receiving Diatinib and hope that it does prove to be the success it's currently looking like, but I'm man enough to admit I'm jealous of them.

These past couple of weeks I've been reading a lot about what my big operation would entail. The best information I have found is in patients' blogs. It's not something I'll talk about here as I know there are some who read this who don't want to read all the gory details but I will provide a link to one such blog of a recent transplantee who kept a tremendous record of what went on during the whole thing.

Tor's Transplant

You need to scroll down a bit past the latest posts about her life post transplant as it's in chronological order from the newest down like mine but the posts entitled Transplant 1 and Transplant 2 are what you're looking for if you're so inclined. It's far from easy reading so if you don't want to know all the grisly details then perhaps you're better not reading it. You will of course get all that stuff when it's me going through it but remember I am a different patient to the Cystic Fibrosis ones so there will be differences in the treatment during and post transplant.