As the day that I am given the details of my forthcoming treatment approaches my ability to sleep is reduced. Feeling tired as I write I am sure that last night's tossing and turning is only a precursor to even more surreal and distorted dreams tonight. The knot that I had in my stomach this time last week on discovering my condition has returned as tomorrow I find out how the medical fraternity aim to control it.

Aside from a walk along the River Thames close to my flat yesterday the only times I have left home this week are to go to a hospital to have something poked, something removed or something put in. The internet has been my only real access to the outside world and as such I think I have done well not to spend the whole week Googling my condition. I'll confess to searching "Leukaemia" on That First Day but the results were bewildering with a broad range of scary prognoses and outcomes. Heart racing and eyes glazing over I took a deep breath and pointed my browser elsewhere.

A week on, having spoken to actual experts who actually exist, I have a far better idea of what I have and what it means. For those that stumbled across this blog having failed to resist the lure of internet diagnosis here is my attempt to sort the wheaty facts from the Wikipedian chaff:

On Monday I had absolute confirmation that I have a condition known as Hairy Cell Leukaemia or, given that we have to abbreviate everything these days, HCL. This was based on the blood tests and the bone marrow biopsy; without the marrow it is possible to diagnose something else as HCL.

HCL is very rare accounting for 2% of Leukaemias. There are on average only 100 cases of it discovered in the UK every year.

It is far more common in men and doesn't usually set in until middle age. Most sufferers are over 60. It is neither infectious nor inherited.

The onset of HCL is slow and discovery is often via a routine blood test or when looking for something else. The commonest symptoms are however tiredness, frequent infections, and an enlarged spleen. I have no idea where my spleen is.

The outlook for sufferers is good. The condition can be treated and, if infection is avoided at key times, most manage a near normal life expectancy.

Treatment is via one of three possible chemotherapy drugs and / or the removal of the spleen.


It's on that last line that my stomach tenses again. I know that all of the treatments have their own individual side effects either long term or short and I've resisted Googling the individual drugs to avoid giving my dreams something to latch onto. "Chemotherapy" conjurs up as many fearful prospects as does the work "Leukaemia" and yet just as the L word covers a broad range of diseases the C word covers a broad range of treatments. I'd rather wait for the facts to arrive tomorrow.

I'm told that the therapy I am likely to have does not involve the loss of teeth or hair and for this I am thankful but any drug that prevents cell division is likely to have some unpleasant side effects.

This is the path I am on though and there is no other way round. Strength comes from the knowing that others, few though they are, have walked it before and most have come out on the other side. Strength also comes from emails, cards and Skype messages wishing me well. They really, really are much appreciated and help me feel attached to a world I feel physically removed from. The internet, whilst the source of infinite misinformation and misplaced fear, is also a treatment for one of the less well documented symptoms of this disease, that being isolation.