It’s a very peculiar experience being told you have something seriously wrong with you. At the age of 30 you have got over the invincible stage that we have as teenagers and early 20’s. During that period you never think about risks of what you do or the chances there might be something wrong with you.
Don’t get me wrong, we all get ill, it’s just that at the time you see it as transitory and passing and to a large degree you are right.
By thirty you are more aware of the risks around you. People say you could get hit by a bus tomorrow. Even so you are still sure that death is a long way off and you have so much to do looking after kids and/or having a career.
Things can change for you very quickly indeed.
I’m a runner and so am used to running long distances, having run a marathon and a handful of half’s. My training was going very badly and I was feeling a little tired after 6 miles in my runs. I also had a small pain in my left side. Nothing serious and it came and went, I thought it might be acid reflux or something.
Still I know men are awful for going to the doctor, waiting until they fall over, so I wanted to buck the stereotype. So I made an appointment for Friday the 7th of June 2013.
My doctor is a lovely lady called Dr Patel. She’s very proactive and was keen to talk me through some of my previous details, such as slightly high cholesterol (although actually cholesterol is a ratio between bad and good types. So the number is actually bad cholesterol divided by good cholesterol. It’s difficult to grasp but you can have high cholesterol because you have too much bad, or too little good.)
If you switched off for that I don’t blame you, it’s not easy to follow.
Anyway I went in and had some blood tests the next week on Thursday the 13th of June. Procedure and routine, just to check things out. Meanwhile I felt fine.
On Tuesday June 18th I had a meeting with a friend called Burhan and missed a call. I picked up the voicemail and it was from Dr Patel, telling me to call in as soon as I could. I was on the underground and lost signal after that, so it was pretty worrying. You know something is wrong when the doctor calls you and leaves a voicemail. Eventually I got back to the office and called back. The surgery told me they were going to interrupt her session and put me through.
To be completely honest, by this point I was pretty worried. This is not normal procedure. I kept it together though as I was in the office of a company I part own and didn’t want to appear off with the staff.
The doctor answered and asked if I could come straight to the surgery that afternoon. As it was 3:30 already I headed straight down there and met her at 4pm after her last meeting. My business partner and best friend, Patrick, was in the office so I gave him a quick overview, and then headed down.
Dr Patel told me that my results showed I had a high level of white blood cells in my report. Seems a normal level is 1.5-4, and I had 11, she pointed out that this would suggest a blood disorder. She asked if I knew what that was. I said “do you mean like Leukaemia?” She said like that or something similar and I need to get another blood test immediately and she was going to refer me to St Bartholomew’s hospital so I could get checked. The other thing my blood was showing was traces of things that might be hairy cells. I had no idea what these were.
All GPs have a thing called a two week wait, which means the clock is ticking as soon as the request comes in, so I knew I was being fast tracked. They put me in for a blood test at 8am the next day, double booking me with someone else.
I went home in a daze. One minute I had been feeling fine, a little tired when I ran 6 miles, but wouldn’t most people? It was only because I am used to being further along in training that I noticed, and went to get checked. Things were moving really fast.
I, went home after the appointment, it was about 4:45pm. I was home alone. I tried to read a book, or focus on something else, but it wasn’t happening.
How could I be ill? I felt fine!
It is so easy to jump to conclusions. ] When you know something is amiss you panic and search for any information you can find. Mostly you get it wrong.
I checked out Hairy cells online. Whilst this sounds funny they actually only come from something called Hairy cell leukaemia, so that’s pretty rough. I Googled it and read all the results.
I knew I shouldn’t but I just couldn’t resist, what did I have and what did it all mean?
I found out that ‘Hairy cell leukemia is an uncommon hematological malignancy characterized by an accumulation of abnormal B lymphocytes.’ Which to you and me means a lot of white blood cells, the ones that usually kill of disease.
‘In hairy cell leukemia, the “hairy cells” (malignant B lymphocytes) accumulate in the bone marrow, interfering with the production of normal white blood cells, red blood cells, and platelets. Consequently, patients may develop infections related to low white blood cell count, anemia and fatigue due to a lack of red blood cells, or easy bleeding due to a low platelet count. Leukemic cells may gather in the spleen and cause it to swell; this can have the side effect of making the person feel full even when he or she has not eaten much.’
Seemingly without control my hand scrolled down from categorisation to prognosis. It all fitted , me being tired and the pain in my side. Was it an enlarged spleen? It was in the right area…
With appropriate treatment, the overall projected lifespan for patients is normal or near-normal. In all patients, the first two years after diagnosis have the highest risk for fatal outcome; generally, surviving five years predicts good control of the disease. After five years’ clinical remission, patients with normal blood counts can often qualify for private life insurance with some companies
I then found out that the average age of diagnosis was 70 years old. What the hell! I am only 30! How could I have got an old person’s disease? I was really angry and confused at this point and just felt hurt, all these plans I had to live for and I had something which could be fatal in the first two years.
About 70% of all patients with hairy-cell leukemia have a regular life expectancy.
This didn’t sound great but a 7 out of 10 chance was much better than other forms of leukemia. If you don’t believe me, have a look at various other types and the prognosis are widly different. For example one type hasThe five-year survival rate overall at about 24%.
Still I was jumping to conclusions. They hadn’t diagnosed and I was trying to work it out myself. I just included the above to show what went through my mind as I did my research. I was terrified.
This left me in limbo until my appointment came through and it could take days. I didn’t know what to do or who to tell.