One year on from diagnosis

A year ago tomorrow I was diagnosed with POEMS syndrome.  After several weeks of tests, the doctors finally agreed that it was this that had been causing me so many problems with mobility and so much pain in my legs for the past 6 months.  By this point I could hardly walk and had to be ferried from the hospital bed to the car in a wheelchair so that I could go home and take stock of the situation with my family.  The consultant neurologist was brutal in his assessment of the condition and essentially told me that it would kill me eventually.  Needless to say I was in bits the day I was told all of this.  The next step was to then be placed in the care of haematologists so they could work on a treatment plan for me.

In May I underwent heavy dose chemotherapy which was followed by an autologous stem cell transplant (SCT).  I have documented the effects of this in plenty of previous blogs, suffice to say, it was one of the most unpleasant experiences of my life. Moreover, the months of a massive drug regime and intense physiotherapy that followed were not that nice either but what all of this has brought about is the position I find myself in one year on after the diagnosis.

What is certain is that there has been a measurable improvement in the quality of my life.  I can look after my children and I can take them to nice places again. I am back at work and I am also driving, albeit with a car fitted with hand controls.  I don’t foresee that being a permanent thing even though now I have got used to not using foot pedals.  I haven’t sat in a wheelchair for some time now.  I do have an electric one in work which I use partly for bombing around the corridors if I’m in a hurry, or if I have a meeting that is a long distance away from my own office.  I am able to walk with a walking frame and I find my balance getting better all the time. I no longer have to take any drugs and I find I can manage a few glasses of wine or even a few pints of lager.  My biggest problem is that whilst I can walk unaided, though very slowly and wobbly, it’s only when I have the security of a wall or some other support next to me.  It is all about confidence, but I’m sure I’ll get there!  The other problem is that my bi-lateral foot drop doesn’t appear to be resolving itself.  The doctors say it make take more time or may never get better.  It’s something I can live with though, even if it is uncomfortable sometimes.

So if you have been diagnosed with this mystery disease they call POEMS syndrome, I hope that this blog, as well as the previous ones I have written, help show that all does not have to be doom and gloom for you in the future.  There is a hope as long as  you get the treatment you need.  Yes, you will leave your dignity at the door of the chemo ward and it will take you some time to find it again even after leaving the hospital, but you can and you will.  I suppose the next time I write for this blog will be in May 2012; the first anniversary of the stem cell transplant when I hope to report even more improvements.

At the end of April, my office colleague Yvonne Raw is running the Milton Keynes Marathon in aid of research into haematology research at the Churchill Hospital in Oxford.  If you are able to donate a small amount to help, you can find details at http://www.justgiving.com/Yvonne-Raw

No wonder zombies are always pissed off!

As a sufferer of a progressively disabling disease, one might be tempted to think that the feeling of sensation in the disabled limb is a good thing. Don't get me wrong, I'm glad that I can feel my legs and feet as this does indeed foster the hope that once treatment commences, normal service will be resumed over the fullness of time.

But there's feeling and there's damn annoying feeling too.  If I sit with my legs hanging over the edge of the chair, they receive a limited circulation of blood. This causes pins and needles and a burning sensation, particularly at the back of my toes. It also causes the bottom of my feet to feel as though they are covered in small, rounded hard lumps. It hasn't helped that my left ankle was the site for a sural biopsy and this has left me with shooting, electrical type pains that dart around the biopsy area. These, according to the neurologists, are all consistent with polyneuropathy. Luckily these feelings don't all occur at the same time and the levels can range across a spectrum of discomfort. Until recently, the same could be said about putting my feet up, as well as down.  Now though, putting my feet up results in a much more heightened sensation of all that I have mentioned until they reach a stage of what I can only describe as a living death. If zombies feel like this no wonder they are always pissed off!  The pins and needles are safely in their workbox and the toes that once burned are extinguished. What remains after around an hour of having these feet up, and particularly the left one is something so dead one would imagine it to be free of feeling. But here's the rub, the pain is excruciating and then, as I've previously said, I then have to let it hang free and let gravity do its work on the blood flow before I start another round.  That it means 2 or 3 hours sleep a night, simply adds to the overall misery my feet are inflicting on me and those around me.