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

Pre-flight checks and plans

Well, I've now had the bone marrow stem cell collection.  This involved having a tube stuck in my groin. Now this might sound like a major nightmare but I can tell you that after copious amounts of local anasthetic, I didn't even notice them doing it.  I should say mind you, I also had a nice dollop of intravenous sedative and to be honest, they could have pulled out my toenails and I wouldn't have batted an eyelid.  Once the line is in you are connected to this big impressive piece of kit that collects the good stem cells.  The process took about 4 hours a day for two days.  The collected cells have now been frozen.

Tomorrow I have to go to Oxford for the pre-flight checks prior to the heavy dose chemotherapy and subsequent stem cell transplant.  They'll be making sure I'm up to taking the battering that the chemo will undoubtedly inflict on me.  I hope I am up to it because whilst no one wants chemotherapy, its the only way of halting this nasty vile disease that has taken over my body.  Assuming its all ok, I go into the Churchill Hospital in Oxford on Wednesday May 4th. I will have chemotherapy the next day and the day after that I'll have the stem cell transplant.  I intend to blog as much as I can during this process, partly to help me through it but also to perhaps help others who may have to face this.  Watch this space.

How the hell did I get here?

In mid-October 2010 I was at my wife's cousin's wedding. It was a nice day and I recall clearly carrying my 5 year old son, Charlie, on my shoulders. By the end of that month and the arrival of the half term holidays I could hardly pick up our more diminutive three year old daughter, Alys, without my whole body shaking, particularly my legs. But those memories have only been recalled in more recent times as doctors have struggled to put together the jigsaw of a diagnosis.

What was apparent at the time was the daily struggle to get from my car to my office, a walk of no more than five minutes. Each day it became progressively more and more of a hardship as after a few steps away from the car one foot started to drag behind the other and my legs started to feel as though they were full of lactic acid, almost as though I had run a marathon the day before.  Of course, I'd done no such thing.  My office is on the third floor and involves ascending six flights of steps. These became more and more challenging as I encountered them each day after an increasingly difficult walk from the car. The stairs took on a new significance for me. Until only a few weeks ago they had always represented my daily dose of step aerobics and I usally went up two at time with a verve like spring. Now they became the daily challenge, a challenge that I refused to be beaten by, despite the searing leg pains as I struggled on each step.  By mid-November I was unable to rise to this challenge and I was using the lift. By the start of December my boss was so worried about my daily struggle from the car, she got me a disabled parking space that was much nearer the lift. By January I could only walk with a stick and a few weeks later I was only able to walk with a frame.  On 23rd March I er, "celebrated" my 50th birthday on a bed that I had been unable to get off for a week and I now can only move around in a wheelchair.

After a period of hospitalisation in Oxford and a myriad of tests, biopsys and scans, the diagnosis is POEMS syndrome. You can Google this and you'll find a lot of information but in a nutshell I have a problem with the production of stem cells in my bone marrow which in turn is confusing my immune system into believing that it should attack my nervous system.  I'm now having daily shots of a drug that will increase stem cell production and on Tuesday I go back to hospital for a few days so they can harvest the good cells.  In the next few weeks I'll then go back and have a massive shot of chemotherapy in order to destroy the bad stem cells. As the good ones will also be wiped out in the process, the good ones that will be taken later this week will then be transplanted back and that should start a recovery process.

So that's where I'm at and how I got here. I will write in a few days when the stem cell harvest takes place. The fight back has begun!