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

Reflections at Christmas

Christmas is always a time for a reflection but this year that has been heightened somewhat.  The other night I was watching Charlie in his school nativity play and it struck me that this time last year I didn't know what was wrong with me nor was I sure I would even see my son in another nativity play. That may sound melodramatic but when you feel and see yourself going downhill every day, when each morning it's a little harder to walk to the car and to get to work and when the doctors have no answers for you, it's easy to start wondering if it's MS, MND, Cancer or whatever!  Since then it's fair to say that 2011 has been a hell of a year.  The extensive neurological tests, the diagnosis, heavy dose chemotherapy, the stem cell transplant, learning to cope with and battle against disability have all taken their toll in some way or another.  There have also been a lot of hospital visits and painful physiotherapy to deal with.  But earlier this week things changed.  I suddenly found the physical strength and the confidence to walk up and down the stairs and to be able to get in and out of the house without my wheelchair.  I have found a new independence from this. Of course, I only walk with a walking frame as I still have little balance and my legs still need strengthening, which this new found ability will foster.  Then on Wednesday I visited my consultant haematologist in Oxford and he gave me what is as near to an all clear that anyone with POEMS syndrome will ever get.  Last week I felt as though I had reached a plateau in my recovery. I was struggling to get around but was nevertheless getting around better than I had been when I was discharged from hospital.  I was wondering whether or not where I had got to, was as far as I would go.  But the sudden spurt of impetus in my recovery has given me new hope this week that actually, things can get much better, indeed, they are getting much better.  So not only have I been able to reflect positively on long term aspects that hey, here I was watching another nativity play and that there's no reason I won't see next year's nativity play, I was also able to reflect on the short term that suddenly things are getting better and that this Christmas is going to be a fab one and that 2012 will be a great year for me and my family.  I couldn't have done this on my own and there have been many fantastic people to help me through 2011, you know who you are: thank you!  Merry Christmas and a Happy New Year.

Six Months On

Six months ago today I was given a huge dose of chemotherapy in preparation for a stem cell transplant the next day.  I feel as though I have come a long way. Yes, tossers on the X Factah etc talk about "their journey" but this does really feel like a journey has taken place.  Six months ago I was around 8 stone (I lost nearly three stone), was weak and unable to stand or walk. I was, apart from being able to transfer to a wheelchair to visit the bathroom etc, bedridden.  I'm not going to recount the days and weeks leading up to this nor those that came after it as this has been given ample treatment in previous blogs. All I want to say here is that those six months have been very fruitful.  I am now on the edge of 10 stone in weight which is about right for my height.  I can now stand and walk for short distances, albeit with a walking frame.  I'm receiving good physiotherapy treatment to further my progress and I'm back at work after 9 months of sick leave.  I feel well, I look well and everything is going in the right direction.

Looking back at the journey, yes there have been some extremely low points. Not knowing what was causing my problems prior to a diagnosis was a frightening experience. Being told I had POEMS syndrome and what that entailed was horrifying. The treatment of heavy dose chemotherapy and a stem cell transplant was brutal and the three weeks spent in hospital during this treatment were horrendous.  Afterwards, knowing that getting back on my feet was going to take months and that the physiotherapy to bring that about would be painful, I was distraught with fear for the future.  But those ensuing months actually went by much quicker than I initially thought they might.  Much of this was due to the warped psychological dimensions of the illness and the treatment but as every day passed so life gradually got easier again.  For sure, I have difficult days and I have upsetting moments as I gradually get used to living with disability, which, might not be forever (I hope), but is certainly going to feature in one manifestation or another for the forseeable future. I have to learn to adapt to this and I think I am slowly.

As well as being a memory jogger for me to look back on in the future, another intention of this blog was to create a record for sufferers of this horrendous disease in the future and that it may help and encourage people who are starting out on the journey that I am now well into.  I hope that it will serve this purpose.

100 days

Yes on Sunday, I passed the 100 days since my stem cell transplant. Its been a bit of an adventure. My previous blogs and Facebook postings bear the testimony of the horror the heavy dose chemotherapy inflicts on its victims, yet no matter how impossible it all seemed at the time, life has got so much better.  I am able to get out and about in my wheelchair, I take very few drugs now and I hope to go back to work soon. The hospital are very pleased with my progress as is my excellent physiotherapist Dan. Today (day 101) I walked a few steps, the first since March. It was albeit with the aid of a frame but nevertheless it felt good and the notion of "first steps" was not lost on me. I have to thank so many friends and family for the support and help I've been given throughout the illness and recovery and whilst I still have a great deal to do yet, I feel now I am truly on my way to getting better and eventually being free of the wheelchair. I probably wont post now for a while unless something dramatic happens (maybe Wales winning the Rugby World Cup - ok maybe not) but I will write again when I have something to say.

SNAFU

A few chronological milestones have passed in the last few days. On Friday it was 8 whole weeks since the stem cell transplant. This means that it was 8 weeks the day before since getting the chemotherapy. Today marks the 6 week point since getting out of hospital. Beyond these chronological points I have to say that I'm really feeling damn fine. Yes of course I can't yet walk but I'm getting some competent physio sessions to hopefully address this. And yes, I do get tired during the day but that's to be expected for at least another month or so. I've been eating well since leaving hospital but this weekend I realised that I moved on a bit when I absolutely gorged myself with sourdough bread, all kinds of French dips followed by a large fillet steak and chips. I even ventured a large glass of red! Then on Sunday at a large family gathering I once again pigged out on the buffet, a double helping of strawberries and cream and then copious amounts of cake. Beyond the appetite I'm now thinking about going to work and probably will start plans to do so. I've also-noticed that I'm a lot stronger and can transfer from wheelchair to car, bed, etc without anywhere near the effort it once was. On top of this the most recent visit to hospital for a check up has been really positive and my visits have been lengthened to monthly now. So if anyone facing up to heavy dose chemo and stem cell transplant and should stumble across these blogs in the future, I say this to you, when all is black, and gloom is ever present, stay focussed it will get better even though right now it may not feel that it will.

6 weeks later

So here we are now 6 weeks post transplant. I'm not feeling at all bad as it goes. I've had some visits from physios who have given me some exercise routines to do each day to help get me walking again. I've also been back to the hospital this week and they are very happy with my progress. They've taken me off one drug called Fragmin which involved a daily injection so that's nice. They also weighed me and I've put on a good few pounds since I was discharged. I've also seen my neurologist this week and he was surprised at how well I'm doing though he was unable to offer any magic potions to help me get back walking quicker. Like all the doctors he says it will be months not days or weeks before I see any real improvement. I'll just have to keep on exercising then.

Day 35

It's now 5 weeks since I had my stem cell transplant. In a way it might as well be 5 years because it just feels so long ago. What a distance to have travelled in 5 weeks. I've had a lethal dose of a noxious chemo drug. I've had my stem cells replaced. I've had my blood system reduced to a point where I had no immune system. I had my dignity ripped away as I lost control of my bowels and where I spent hours with my head in a cardboard bowl. I lived on sickly milkshake when I could not taste or chew food. Frankly it was a bloody awful time and it wasn't confined to being in hospital, I still felt rotten when I got home. 5 weeks in though and I'm feeling a lot better. I'm still not mobile but then I wasn't before I had the chemo. I'm starting to taste food again and do have the beginnings of an appetite returning. I'm eating proper food again and have now started doing some exercises to try to build myself back up again. It's taken a while to get this point ands it's good to feel that I'm improving. I wonder what I'll be able to say over the next few weeks and months?