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In October 2012 my Wife, Rhiannon woke up one morning with a swollen foot. Thinking nothing of it she carried on until a few week later when the pain became so unbearable she went to see our GP.

After having x-rays and blood tests our GP being slightly stuck referred her to see an Orthopaedic Surgeon. After more tests and making her wear an air cast boot the consultant decided to take some more blood and test again for rheumatoid arthritis.

Within a couple of days Rhiannon received a phone call from the consultant’s secretary advising that there appeared to be a problem with her platelets and she would need to be seen by a haematologist quite urgently.

Fast forward to April 2013, Rhiannon was sent to see a haematologist as The Chartwell Cancer Unit.

After more tests Rhiannon was diagnosed in May 2013 with Essential Thrombocythaemia and JAK2+.

Neither of us had ever heard of ET or myeloproliferative disorders so here is some info,

When a person has a rare blood cancer (myeloproliferative disorder) something goes wrong with blood cell production. The bone marrow begins to produce either too many blood cells, or sometimes too few. There are three primary types of MPDs, but there are other types as well.

The three types of MPDs most frequently diagnosed are separate disorders which each affect blood cell levels in a different way. The three most frequently diagnosed types are:

Essential Thrombocythaemia (ET)

Polycythaemia Vera (PV)

Myelofibrosis (MF)

What is essential thrombocythaemia?

Patients with essential thrombocythaemia (ET) have an elevated platelet count – their blood contains too many platelets. The high number of platelets causes blood to be ‘sticky’, so people with ET are a higher risk of both clotting. People with ET can also have bleeding problems because their platelets do not always work well. However, some people with ET don’t experience any symptoms at all.

People generally develop ET as adults. Most people who develop ET are diagnosed at the age of sixty or older, but it appears that the disorder is becoming more common in younger people, especially women under forty.

Recent research has shown that about 50% of patients have a mutation (or change) in a protein called JAK2. Another 2-5% of patients have a mutation in a protein called MPL. Both JAK2 and MPL are proteins which regulate blood cell production. Researchers don’t currently understand what causes these mutations to occur.

Once over the shock of being diagnosed with blood cancer Rhiannon started treatment. Over the next few weeks she became tired, started to feel dizzy and decided to go back to see our GP. Fortunately for us our GP had heard of ET and knew what an MPD is and suggested a referral to the unit at Guys and St Thomas’, one of the few places in the UK that has Doctors and nurses that specialise in MPD’s.

The team at Guys and St Thomas’s conducted a bone marrow biopsy and confirmed the diagnosis of ET, JAK2+.

Rhiannon now takes chemo medication daily to try and reduce her platelet levels.

Life today is very different and not what either of us imagined it to be like when we hit our mid-40’s and the kids just about off our hands. Rhiannon despite being a bit scatty has always been fiercely independent, run the house and everyone with military precision and worked fulltime. Today the need to be independent along with the scattyness is still there but it is dampened by the symptoms of ET and the effects of taking daily chemo drugs. It’s hard to watch someone you love go from being active, walking the dogs, riding and generally running around after everyone to struggling to get up, in constant pain, feeling sick, tired and feeling that they are just useless.

There is no rhyme or reason as to who gets this disease and no two suffers appear to have the same symptoms. Some people are fortunate and ET has a minimal effect on their life. We have no idea what the future holds some ET patients who do not suffer from severe clotting or bleeding complications can probably expect a near-to-normal lifespan. We hope that in the near future a cure is found.

Some patients with ET develop acute myeloid leukaemia (AML) or Myelofibrosis (MF) at a late stage of the illness. When ET ‘transforms’ to leukaemia or Myelofibrosis, the outlook can be poor, as these diseases are often resistant to treatment.

In order to give something back and raise awareness I have taken it upon myself to complete a set of challenges all in aid of MPD Voice.

Over the years I have like many participated in a few armchair sports and kept my local Greggs the bakers going by purchasing one too many steak bakes…

I have spent the last few months weaning myself off Greggs and shedding some excess baggage.

A triathlon is no easy challenge for me, my last bike was a Raleigh Grifter, I have always been a holiday swimmer using the water as a short cut to the bar and the only time I run is if I am late for a train.

I have signed up for Tunbridge Wells Sprint Triathlon on 24/08/2014 and will post updates along the way of my highs and lows, blisters and saddle sores (no pictures).

If you would like to follow my adventures or misadventures please click the link to my blog,

http://musingsofa40plusman.wordpress.com

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