Over 40,000 people are diagnosed with a blood cancer each year in the UK, and around 250,000 people are currently living with blood cancer. There are many different types of blood cancer and each have their own symptoms, treatments and prognoses.
Today is World Blood Cancer Day, so it felt fitting to share our story. This is definitely a "long story short" situation, and one from my perspective looking at our own personal circumstances.
October 2019 and life was pretty great! I had been putting lots of effort into growing Homespun Heath, my boys were happy at school and my husband was thriving at work. We were preparing for our annual jolly to Pembrokeshire for a half term break, before the Christmas craziness was due to set in. However, the jollies never really got started...
My husband, Lee, had been feeling unwell. A quick trip to the GP told us it was nothing concerning and so off we went. Within a couple of days, Lee deteriorated to the point of requiring urgent medical attention.
What started as some back pain was now life threatening, all within the space of a few hours. Doctors quickly identified his blood was continually clotting, and they couldn't stop it. The clots had dispersed throughout his body. He had clots throughout his legs and pelvis. Clots strangling his liver and kidneys, to the point his organs were failing. Clots on his lungs. Clots blocking the blood flow to his heart. His blood was literally killing him.
There aren't any words to convey the sheer terror as I watched my husband's chest pounding while his heart struggled to keep going. The helplessness as his skin turned all shades of black and yellow, and his ability to converse with me grounding to a halt. When the doctors came in with their concerned faces and no answers, I silently prepared his funeral in my head.
Eventually, after several days of treating his symptoms it finally started to work! Still without answers as to what the hell caused it all, after many weeks in hospital we got him home. He remained under close care because 37 year old men don't generally keel over like this, but the hospital consultants were confident he'd make a slow but good recovery.
2020 rolls round, and we have a running joke about how this year can't be any worse (ha-bloody-ha)... Lee's haematology team carry on testing his blood for every infection and disease going, while continuing to treat the aftermath of the trauma which has already occurred. Off we trot to his February appointment and BINGO, we've had a hit!
Now, through experience we've learned haematologists are incredibly intelligent people. Serious geek freaks when it comes to blood conditions and treatment. What they often lack is people skills. The haematologist reels off a very long medical sounding condition which i write down phonetically to Google later, common practice for us given the last few months! She explains there's lots of treatment options and a referral to the specialists will be made. We were told to visit a website for some helpful info in the meantime, and sent on our way. We get home, a bit bewildered and search Google...
What. The. Hell.
If you've ever had that word dangled in front of you, you'll understand the vast array of emotions which suffocate you almost immediately. It was a sucker punch right in the gut. A new problem. A new trauma. A new path of hell we now had to deal with, and with no warning.
After recovering from the initial shock, I began to research and read every morsel of information I could find. Myeloproliferative Neoplasm (MPN) is fairly rare, especially in the under 40's. What I quickly learnt is more often than not, it's unlikely to shorten your lifespan. There are different categories of this type of blood cancer, and most people can go about their lives as usual, some even without treatment. Others can progress quite quickly, and find themselves in need of regular blood transfusions or a stem cell transplant. There is often a trigger to cause the mutation which sets off this type of blood cancer. It's a very personal blood cancer, in that no two people will be the same.
At this point we were yet to find out which category Lee was. We naturally assumed he'd be bottom of the ladder and a "watch and wait" type scenario, given his age and previous general good health. In recent weeks we have learned that's not quite the case. Lee has been diagnosed with Polycythaemia Vera (PV), which means he produces too many red blood cells, and in his case, too many platelets. Close monitoring and treatment to begin immediately.
The kicker is MPN is a blood cancer which can often be easily managed, and those diagnosed through routine blood tests, will spend their lives preventing blood clots and other complications. That horse has well and truly bolted for Lee, and he now has to live with the repercussions of being ravaged by blood clots. The initial clots caused by something else altogether, but that's another story entirely. The blood cancer is just a side dish!
Further testing is needed to fully understand his current condition. A bone marrow biopsy will tell us whether there's any serious damage going on in there, but COVID is delaying such procedures.
Receiving his latest diagnosis did leave us feeling flat. The prospect of more medications, more hospital visits, and no reassurance of a normal lifespan given his current state and being diagnosed so young... No one is going to feel happy/relieved/content/ok about such prospects. Anyone living with, or supporting someone with a chronic condition will understand. Facing your own mortality is frightening. I'm not sure if facing the mortality of someone you love is worse, after all, it's you who'll be left behind.
It isn't all doom and gloom. Far from it! The trauma last year has changed us, for the better. 6 months of Lee at home 24/7, and overall I'm still fairly fond of the guy! The blood cancer diagnosis/treatment is just something to make room for. There'll be ups and downs, I'm sure. The process is much like grief. And like grief, it does get better, it does get easier, and life does go on....
If you haven't yet registered to become a stem cell donor, you can find out how to do so
The process is a simple cheek swab, which you send off in the post. In all likelihood, you'll never be called upon. But, you might just save a life!
Blood donation is also important, not just for blood cancer patients. Find out if you're eligible to donate here: https://my.blood.co.uk/preregister
I would like to thank each and every person who has taken the time to offer words of support and comfort over the last few months. You have got me through some truly dark days.
Clara (and Lee!) x