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?

An under estimation

This is for anyone who might find themselves having to undergo heavy dose chemo and bone marrow transplant. You might find that you'll be told that the treatment will result in the worst few weeks of your life. It will be without mistake! You'll puke and piss and you will shit the bed a lot. You won't be able to eat because your mouth will be full of ulcers and everything will taste and feel like cardboard. But what about when, and it will, this all passes over and you go home? No one really prepares you for the way you will feel once out. You've spent 3 weeks in your own room, a room that felt like a safe refuge when you couldn't control your bowels but now, your over that and the boredom of the solitary room sets in and lasts until you go home. You will feel like you've been released but you will also still be ill and in need of recovery. The treatment will have taken a fair bit of weight with it and you'll be weak. You'll also feel very down. So down you'll have really dark thoughts. They will pass with loving care at home and good friends backing you all the way. You'll need to be prepared that you aren't gonna be sweetness and light, you will still be bored because nothing will interest you for more than a few minutes. These things will pass on time as you gradually get better day by day. No one prepared me for this. I thought I'd be out and about once I'd done my "worst few weeks of my life" in hospital. But there are more struggles ahead as youf body restarts after the chemo killed it. Hopefully this piece might help you one day. body r

On being home

I've now been at Graham & Anna's for 3 days and the hospitality has been wonderful. I'm really well looked after. It makes so much sense to be here. I'm bedridden for the forseeable future and Here I have my own room and access to a bathroom. At home I would have been on a bed in the living room with only basic washing facilities and a commode. There would also be the children. I see the Kids most days and of course Laura is here a lot as well. I'm also so well fed. I eat 3 weetabix for breakfast, beans on toast for lunch and then something from Anna's excellent repertoire in the evening. Taste seems to be returning at last. After all tomorrow is day +21 so 3 weeks since the transplant. My biggest problem s dealing with the almost geological timescales needed to repair my body so I can walk again. That is an immense challenge. As I get stronger each day now, I hope the challenge won't be quite so daunting.

1st full day out

After a disturbed night's sleep I awoke positively to a nice day. Alys was here today and she has been a little tonic. I've eaten better too though mouth is still dry and weird. Had the usual GP and District Nurse visit and it was the latter's paperwork, a collection of questions regarding my abilities that caused an outbreak of blabbing upon realising I'm pretty useless at the moment. More food and more Alys! Laura and Charlie came after school and we had a nice civilised family meal. I was sad too see them go later. The black dog has been fought off well today. Must look to positives. Consultants are happy and see no reason why I will not improve over time. Gotta keep the spirit up and fight it all the way. Yes it will be tough but the rewards are there. Overall this wasn't a bad day, better than recent previous ones but hopefully there's even better to come.

Leaving hospital

Weekends in hospital are dismal especially stuck in your own room. Everything slows down. Knowing you have to tough it out because Monday brings home means the weekend will just drag more. I've been in a cocoon for 3 weeks and whilst I want out badly I am also terrified of managing outside. I've had a real mixed bag of emotions including some very dark ones that scare me. I've gotta grasp at positives. My gorgeous family and my stunning friends are all there for me. I've got to see this as a post chemo thing and life will feel better. It has to it just has to.

Release

It's day 17 and I'm alllowed home. There will be lots of drugs, I have to be careful where I go and who I see due to infection. The weekend and most of Monday seemed to last forever. It became mental torture and by Monday I was a weepy mess. Laura's parents, Graham and Anna have asked me to live with them for a while and it makes sense. I will never be able to thank them enough for their kindness. Feelings about coming home have been complex and emotional but there is so much to fight for even if it's tricky to see that now. I will write more about this but I need to sleep.

Boredom

The boredom is excruciating. If the clock on the wall ticked I would have smashed it by now. As it's quiet it escapes my wrath. There's only so much Bargain Hunt and Deal Or No Deal I can stomach. Kindle for iPod is lovely but text too small for extended reading sessions. Nothing happens as you watch a small cog of the NHS trundle past your door. Shitting the bed helps kill some time but it's not the best pastime. Still nothing happens and the minutes seem like hours, the hours like days. I go for a little drive around the ward in my wheelchair and a half hour passes but it felt like an hour! Still nothing happens. Maybe it's time for a sleep that'll pass an hour or two. Get comfy and settled just nodding off and in comes the nurse to do your obs. Awake! Nothing happens. Never mind soon be bedtime.

Day +12

I've not written much in the last few days. My eyes have not been that great and I've been either too I'll or just not feeling up to it all. I still am not feeling top notch but there does seem to be light at the end of the tunnel. The weekend just gone was the absolute pits with endless vomiting and daiorhea. Monday did seem better and each new day since has continued the trend. Doctors are happy too. Eating is a problem because my mouth is so dry from treatment. My tummy rumbles but it's impossible to satisfy it's demands save with a strawberry shake. Nothing tastes of anything. So the cycle continues that no solid in means ... well you know. There was talk of release on Saturday but that is now unlikely and it may be Monday. Can't wait to get home!

Day +6 (part iii)

Apart from it being day plus six, one might be forgiven to ask if the 12 May has significance. Well yes it does. For north a year Laura and I have had tickets to see Roger Waters doing He Wall at the O2 in London. This was my 50th birthday treat from my good lady wife. Co independent of us getting tickets, my perennial mates Mumf, Ogri and Uncle Geezer had also bought tickets for tonight's show as a welcome over for the US arm of the fraternity. I hope you all had a good time you BASTARDS! I'll look forwad to hearing all about it. Oh yes, I cannot wait! Never mind, we were able to shift the tickets on eBay so we can do something nice with the cash when this ordeal is over and done with. David Gilmour has promised to play Comfortably Numb just once and I bet that is tonight.

Day + 6 (part ii)

There have been a few technical problems too. My antisickness pump hadn't been fitted properly so my arm hurt unnecessarily and the drugs weren't at optimum performance. For the last few days the staff have been struggling with my line. Nothing going in or out. I recall yanking it on a commode visit and apparently I pulled it out of situ. I've got a much nicer one fitted in my arm now and the weapons grades drugs can now go down there. I've just been released from my first bottle of nasal gastric grub. It's not the most pleasant way of getting one's calories, but hey it works!

Day 6 (part i)

This is day + 6 so that's how many days since the SCT. Christ those days have been grim. Were there to be such an occupation as 'chunderer', I would most likely qualify as a good candidate. Were it bizarrely even more possible to earn heirarchical sums of money based on the display of talent for such a vocation, I would certainly be, at my apex by now. Oh yes boys and girls - this boy can spew with the best.

Today though, the focal point for disgusting bodily ejections moved away from my mouth. In a period of about 3 hours (9-12) I shit myself over and over again. They do not pay nor recognise highly enough those who's daily toil it is to clear away such mess. How could they?

Day +2 and +3

I've started to notice queasy nausea these last few days. Pills help albeit briefly and when you feel as though the volcano in the pit of your stomach is about to erupt, yet more pills seem a daunting task. I've had some nice phone calls though and Laura and the kids have visited. Today when they were here though, I felt so tired even though I've now had a few good night sleeps. I guess it's all just par for the course. My blood counts are continuing to drop and soon I'll be without an immune system until the counts start to increase again. I'm dreading this period, it all sounds horrendous.

On brighter notes,Alys had her first day at pre-school and Charlie won second prize in the horticultural show for a leaf print. He was very proud of his silver medal.

Day +1

I was saddened to hear of the death of an old motorcycling mate today. RIP Jason.

In terms of what this blog is generally about, that is my disease and the war against it, it's been an unremarkable day. I couldn't face the fry up this morning, opting instead for rice krispies. Everything tastes of cardboard and apparently thats due to the treatment rather than the bland hospital food. I wonder how much it's a combination though? I've been suffering with back ache and I've had some oral morphine today. It has helped a bit and the nurses have also fitted a nice mattress topper for me. I really need to sleep tonight. On the upside of things, Laura and the kids were here earlier and then my good mate Sean arrived and we've had a bloody good laugh for a few hours. He's also made me tea and toast!

So that's today.

Day Zero

So today was the day that a little army of good stem cells were implanted in me to fight the battle against the dreaded POEMS. The first thing you notice is the foul smell of the preservative that was mixed with the cells before they were frozen. If that's not wretch-inducing, then what follows is. I was surprised by this actually. I wasn't prepared for the fact that the process of putting the stuff back into me would make me feel so ill. But ill I was! I started by rambling away to the nursing staff and the transplant technician. But then foul feelings of queasiness came over me. Once the transplant was over, a process of about an hour, I started to feel a little better but it has taken about four or five hours before I felt I could eat something.

Earlier on I saw one of the consultants and he said there's no reason why my leg nerves shouldn't heal within several months and hopefully this means I can get back on my feet - literally!

Finally,during the madness of the transplant, Rob Davies turned up. I haven't seen Rob in over twenty years and it was an odd reunion but hey Rob, thanks for being there it was an enormous help.