Riks Story

The above video was compiled December 2011…

Riks story in his own words… (Nov2011)

“I was first diagnosed with Acute Myeloid Leukaemia (AML) in 2009; prior to the diagnosis I had always considered myself to be very fit and active, a regular gym goer and football player. The diagnosis was nothing short of devastating not just for me but also for my family. We went from a relatively busy “normal” life into a world of uncertainty about the future.

chemo early stagesI was thrown into five months of intensive chemotherapy followed by months of recovery, prior to this I hadn’t spent so much as a day in hospital. Following treatment and a period of rehabilitation I eventually returned to work and picked up the threads of my life… as you can imagine it was a case of looking over “our shoulder” in case the disease returned. I was closely monitored and the hospital appointments were as you can imagine extremely stressful. Statistically the likelihood of the AML returning diminished over time… with two years being a particularly significant milestone. We eventually reached this point and
we had dared to start to believe the nightmare was behind us. Unfortunately this was not to be the case…

I was re-tested in Autumn 2011 following what appeared to be a simple bout of flu; I went for routine blood tests which to cut a long story short culminated in receiving
the bombshell that the leukaemia had returned. I was readmitted to hospital once again to undergo further chemotherapy, however, this time there was a major difference, I was told that I required a bone marrow transplant, without one I could not survive!

Tests had already confirmed that  I did  not have a sibling match  I have three brothers non of whom were a match, so my only hope was an unrelated stem cell donor…a search of the database to find a suitable match was conducted however I was advised there are significantly fewer donors on the register from the Asian sub-continent, just 4% of the database.

My time in hospital as you would expect was extremely hard not just because of the treatment but also as a result of the frustration and anguish as we neared the end of that treatment, all without a stem cell donor in sight. The situation heaped additional stress on top of an already stressful situation… I was very much on a finite timeline and the clock was ticking… we all knew the doctors could only give me so much “chemo” much more and the cumulative affects of the drugs would kill me as surely as the cancer.

We were given the news fairly early on in the treatment that a search of the UK database for a stem cell donor had proved fruitless… I had little choice but to continue with the treatment and prepare as if I would have a donor at the end of the treatment cycle and just hope something “turned up” …so I got on with it.

I wondered why this was, given the vast numbers of “British Asians” (me included) living in the UK. I could guess at some of the possibilities… a lack of knowledge of blood cancers… little or no knowledge of the significance of stem cell donation… little or no knowledge of the shortage of donors and perhaps most significant a misplaced fear of the registration and donation process. The net effect for me was the same… no donor and only a very slim chance of finding one ; the irony is that medical advances have now made both the registration and donation process fantastically simple and straightforward. It was an extremely frustrating and to say the least scary time, i knew i was on borrowed time, the worst of it was that, things were no longer in my hands.

To cut a long story short…

We eventually got to within a couple of weeks of the end of my final chemotherapy cycle and had the dreaded meeting in the “family room” with the consultant. I knew it was not going to be good news when I saw the  consultant was accompanied by a nurse, experience had told me that was never good. Indeed the news wasn’t good, I’ll spare you the detail but taking the traffic light analogy we were on red! we were told we needed to “worry” and consider starting to make “arrangements”… anyway its not over till its over so we carried on preparing for the transplant but to say it was an anxious time is an understatement.

I mentioned earlier that I have a family; I have a wife and two daughters as well as my extended family and friends, I value them greatly and want to be around to help and support them. Take a good look around at your own family and friends and I’m sure you feel likewise. This is an awful disease, it can hit anyone, healthy, old, and young it does not discriminate… taking a little time out now to register (honestly it is so simple) will have minimal impact on your life but you can rest in the knowledge that if you become a donor you could save a life.

Rik 2 months after transplantAs it turned out… I was so lucky, literally at the “eleventh hour” a donor came up out of the blue from Germany, my hero was a community minded individual in Germany who not that long ago must have decided to go to the trouble of filling in a simple form and spitting into a tube… that’s all it took for them to register… no doubt a little time out perhaps a little inconvenience to them but absolutely life saving for me.

That person having registered came up as a match and thankfully they donated their stem cells and saved my life, my wife still has a husband and my kids still have a father and my friends still have to put up with my unfunny jokes (oh well can’t have everything), seriously though there simply aren’t the words to express my gratitude to that selfless person, my “donor” in real terms they will be a part of my life as long as I live.

I found a match …unfortunately there are many others that are not so fortunate…

Register on-line now (http://www.anthonynolan.org/register) or look out for a registration event and address the shortfall in donors, we should not need to conduct worldwide searches for donors when there are so many of us here, ultimately we will all benefit. Registering is an “investment” in our collective futures whether it is family friends or the wider community.”