It was just this weekend when a young man, upon telling him I had leukaemia, held his hands up in horror, backed away and said, panic stricken, "I can't catch it can I?"
It's been nearly five years since my diagnosis of chronic myeloid leukaemia and thankfully I'm in major molecular remission now. I take my dasatinib tablets daily, follow my consultant's advice and get on with my blessed life.
I decided to tell people about my condition almost immediately upon diagnosis, aged 32. It felt honest and open and I knew I was going to do some serious charity fundraising so I desperately needed that sympathy vote. I wanted people to understand the disease, ask questions, I was happy to talk. In a way it was therapy for me and still is.
The reaction I mentioned previously really shook me but it was the extreme rather than the norm. Some people, including family, still don't know what to say. This is OK too, they will come around. I realise it's hard for everyone who knows the patient, they wonder how we cope. They don't realise the inner-strength we receive via whatever belief system you hold true, I took a little bit of all of them!
There are bad days, but everyone has these and there isn't a day that goes by that I'm not thankful I'm still here. That's the game changer. It's like seeing in colour after living in a monotone world. It's odd to have your health taken away, it makes you live for the moment and appreciate things more...especially Italian red wines, in moderation of course.
My life changed again around a year ago. My son, Luca, was born. This was another challenge. I banked sperm on diagnosis and 2 years ago my wife Kelly and I made the positive decision to go through IVF treatment. Of course it was worth it, even at the 2am feed. I'm looking forward to being Dad for a very long time.
International Chronic Myeloid Leukaemia (CML) Awareness Day on September 22nd is very important to me. It is a day when patient organisations across the world will unite to raise awareness of the needs of patients living with CML. 22/9 represents the genetic change of Chromosomes 9 and 22 that causes CML.
Last year patient organisations across the world collaborated on September 22 to raise awareness of the needs of patients living with CML. Patients provided more than 150 photos of CML patients and more than 2200 individuals signed the proclamation to declare International CML Awareness Day.
The CML Advocates Network has set up a committee, headed by LMC France, to support the activities this year. So far there are activities in Ukraine (OSANNA) , Slovenian L&L Association, Morocco (AMAL), Germany (Leukämie-Online), the Israeli CML patient association, the Croatian Leukemia and Lymphoma Society, and The Max Foundation. You can find full details here.
The day is important because CML is a relatively rare disease, only around 650 of us are diagnosed each year in the UK. It is, however, a disease that is being treated successfully with anti-cancer drugs. My hope is that similar drugs will be used to treat other cancers in the future. By raising awareness for CML we will attract more funds for research and clinical trials. It also informs people that changes in their body need checking out by a doctor. In the majority of cases there is nothing to worry about, in my case, sadly, there was. It also means that politicians and governments globally know about CML making the battles we constantly fight to access the life-saving drugs a little easier.
You've probably guessed that I'm not one to feel sorry for myself, I'm very happy with my lot. I'm lucky, even though I don't have a lot of choice in the path set for me. If I smile and treat people well and show them the respect they deserve that path can be one of enlightenment. If we can educate someone like that young man to understand what leukaemia is then another patient won't have to face a potentially hurtful comment. A comment made innocently, without malice or anger. Just fear. But it cut deep.
Please support International CML Awareness Day.
What can you do:
Download posters that show “Faces of CML”, taken of more than 150 submissions from patients from all continents in 2011 here.
Submit additional “Faces of CML” – the gallery of photos and their testimonies are very impressive and the gallery can grow further still. The gallery can be found here. New photos can be submitted here.
Sign the proclamation of International CML Awareness Day. Last year, more than 2200 individuals, including patients and health professionals, signed the proclamation. By doing so, it helps us to demonstrate broad support for the day. Sign up here.
You can read more of Kris' blogs here.