I was told by the Professor that I would be receiving my results on Tuesday the 2nd. He said we could make an appointment , but I preferred to hear over the phone. Much better to know sooner.
On Tuesday I got a text saying It would be delayed to Thursday. Ho hum.
The waiting was pretty tough. I just wanted to know what was wrong with me. It was obviously bad or they wouldn’t have rushed me in, given me the radiation dose, or done any of the testing. Would I find out that I had a year left to live? Or five years? Twenty? I tried to remain strong and largely managed it but at times I started planning what I would do if I had a year to live. I would transition out of the company I owned, giving Patrick my shares, but also making sure I did enough work to make it a smooth transition. Then I would go travelling. I would also get one of my books self-published and then put it out there. I have been sending my work off for years (7 books) and have never got a bite. The publishing industry is notoriously hard, but before I felt I could wait. Obviously my time scale would now be speeded up.
Thinking about death is very maudlin, but also quite strange. What are your real priorities, what actually matters to you? How would people remember you? Does it matter? What is the point of it all and once you and all the people you know have died what is there to say you have ever existed??
It’s a pretty tough thing to come to grips with. A month before I was thinking I would have kids in the next few years, move out of London, run a successful business. Retire, travel and die holding my grandkids at the age of 85. Well that probably isn’t going to happen now. Let’s just wait and see how this thing progresses before I make any other assumptions.
Patrick was pretty good about it. He was adamant I shouldn’t jump to conclusions. I had a director’s meeting for Nutbourne and started talking about exit plans, but he, quite rightly stopped me. With these things you can only wait and see.
I missed a call on Thursday as I was in a meeting. It was the professor. I called him back and missed him. Bugger, I had already had eight texts that morning.
I got him back on the phone and spoke in quiet tones in our meeting room. I didnt really want the staff to hear.
After all that research I didn’t have hairy cell leukaemia after all. The most likely diagnosis is that I have a disorder called Splenic Marginal Zone Lymphoma. A very catchy title for a non-Hodgkin’s lymphoma. I had no idea what this meant so we chatted for a bit and organised a meeting on Wednesday the 10th of July so he could go into more detail. I did get the following from him though.
It’s a low grade indolent lymphoma, which means its very slow growing. It’s not curable but can go into remission from chemotherapy. An option is to take out my spleen, which might or might not slow it (the jury is out on this one). It could take a number of years until I need therapy, as many as 7, but if not then the response rate to chemotherapy is about 90%.
The problem with all of the stats on the internet is that they are for people of a median age of 65. That means by the end of their 10 year outlook they are 75. Naturally they are more likely to die by that point. The odds of getting it at my age are approximately 3 in a million, so maybe I should start buying lottery tickets (FYI that’s 1 in 14 million, so even less likely).
Wikipedia said ‘Three-quarters of patients survive five or more years; more than half of patients with SMZL survive more than a decade after diagnosis’
Anyway I’m planning to live to 60, you see if I bloody don’t. I will publish a book, have kids, and retire from running a successful company. That’s the plan anyway.