Shortly after promising to pick up this blog again (and thank you for your comments, they are always much appreciated…); life threw yet another spanner in the works. Life’s spanner aiming, it must be said, has improved dramatically this year, with every piece of kit smacking straight into the proverbial works with a satisfying clatter and potentially irreparable damage.
This one was the best yet – a ‘chest infection’ that proved to be a large blood clot in my lung. A potentially deadly condition known in the trade as a pulmonary embolism.
As you can see, I am still here. A little shaken, a little frightened, extremely frustrated and – on the plus side – half a stone lighter thanks to five days of hospital food.
I should have known this was coming, really. Back in April, I was diagnosed – eventually, after years of prodding and poking and blood tests and scans and genetic testing shenanigans – with Polycythaemia Vera; a myleoproliferative neoplasm. In layman’s terms, my bone marrow has gone crazy and is producing too many red blood cells. This is not good. In short, it’s blood cancer. Pretty it up as much as you like, it’s cancer. Of the incurable persuasion. There is more information about it here:
http://leukaemialymphomaresearch.org.uk/patient-information/myeloproliferative-neoplasms-mpn
Just to make life a little more interesting, I also have a genetic disorder called Factor V Leiden:
http://www.netdoctor.co.uk/diseases/facts/factorv.htm
In a nutshell, I have blood like jam. I’m not going to die of this form of cancer, not specifically; but the chances are another pulmonary embolism, or a stroke, or a heart attack caused by the combination of the Polycythaemia Vera and the Factor V Leiden will carry me off. Alternatively, life might chuck me another spanner and I may be one of the 15% of PV patients that will develop myleofibrosis or acute myleoid leukemia; but we shall deal with that IF it happens. I’m not wasting time worrying about something that has not yet happened.
I am now on warfarin for life, and will need regular blood tests called INRs to ensure that I am taking the correct dose of rat poison to stop my blood clotting without actually poisoning my body. I am, to be honest, thankful I am still here to tell the tale. It would be have been all too easy, busy mum that I am, to ignore that ‘chest infection’ until it was too late.
The next big step, I guess, is seeing my haemotologist at the end of the month. My appointment is on November 30th – Strike Day – so I’m not entirely sure whether it will go ahead. The question is now, in the light of recent events, whether my consultant wants to start actively treating the PV by reducing the amount of red blood cells in my body. This is usually done by venesection (where they literally drain off pints of blood), however I have read that in the case of young patients (believe it or not, I am still considered young!) who have already suffered clots, they tend to prefer to start straight onto chemotherapy. Chemotherapy is something I am absolutely dreading.
For now, there is nothing I can do but sit tight; and keep reminding myself that I mustn’t ‘overdo things’. I feel like an old lady. I want to play-fight with my kids. I want to help out with volunteering at the community garden. I want to ride my bike, and push wheelbarrows, and drag tree-trunks around and carry heavy bags of shopping. For now, these things are denied. I am ill, and I hate it.
I’m sorry. A more downbeat post than usual; but normal service shall resume shortly, I promise. With pictures, and everything.























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