Saturday 10 December 2011

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.

Thursday 3 November 2011

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.

Monday 15 August 2011

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.

Monday 4 July 2011

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.

Friday 17 June 2011

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.

Friday 10 June 2011

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?

Thursday 2 June 2011

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

Thursday 26 May 2011

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.

Tuesday 24 May 2011

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.

Monday 23 May 2011

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.

Thursday 19 May 2011

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!

Thursday 12 May 2011

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?

Monday 9 May 2011

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.

Saturday 7 May 2011

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.

Friday 6 May 2011

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.

Thursday 5 May 2011

Day -1

So here we are then, day minus one! Tomorrow (day zero)will see me receive an autologous bone marrow transplant. This means I'm getting my own stem cells back. These were collected a few weeks ago and frozen. Of course there's no point in putting decent cells back into a malfunctioning bone marrow. This is where chemotherapy comes into action. This morning I was given around 350 mg of something called Melphalan. Signing the consent form was a pretty surreal experience. I never thought it would ever come to this. I was nevertheless excited that at last after 6 months of living with the harsh daily realities of POEMS syndrome here was the 'magic bullet' that will solve my problems. And from what I have been told by doctors and from a lot of googling I'm convinced that it is. After all, the systemic problems created throughout my body and that of anyone else with this disgusting disease is driven by a faulty bone marrow. So the chemotherapy was necessary even though I was also partly terrified. Mixed emotions then!

My varied feelings about this were soon manifesting the negative side. Within an hour I had my head in a cardboard bowl, swiftly followed by several more cardboard bowls. I wretched for a good hour and I thought I was about to die! I didn't! A kind nurse shot some more anti sickness drugs into Me and all was well within minutes. I haven't been able to eat at all but have been drinking lots of fluids. Coupled with the fluids they have been giving me on drip, I've been peeing for Wales which is exactly what they want me to do. Day minus one has been Ok apart from the sick episode. It's sleeping pill time now. Onwards and upwards.

Wednesday 4 May 2011

Day minus 2

Yes that's right it's day minus 2. It's called this because it's 2 days to the transplant of stem cells and that day will be day zero.
So anyway, I've now been admitted for the treatment. After the paperwork was done I was fitted with a Hickman Line which is a tube in the chest. They can stick all the drugs in through this as well as using it for the daily blood tests I have to look forward to. Hopefully it should mean no more needles or at least, a lot less of them.

I can't remember having the line inserted! I was given a rather large dose of sedation as well as lots of local anaesthetic and I must have dropped off during the procedure because when I came around the nurses had gone.

Tomorrow s day minus 1. It's the day I get that huge dollop of chemotherapy. Hardly something to look forward to and in many ways I'm not, but I recognise that it's the only way I will get better so bring it on. I've realised that I have so many good friends and family all cheering me on so thanks everyone. Anyway the nurse gave me a sleeping pill and it's kicking in so that's me for tonight.

Wednesday 27 April 2011

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.

Monday 11 April 2011

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.

Sunday 10 April 2011

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!

Saturday 9 April 2011

Finally .....

Well hello! I've been meaning to do this for sometime but never really got around to it, despite having oodles of time on my hands. Over the last few days my condition (the dreaded POEMS) has decided to shut off the circulation to my left foot after around an hour of sleep.  I'm then awake for an hour or two while I discover new and interesting ways to restore the circulation and then grab another hour of sleep before the process starts again.  It's now, right here that blood is trickling back to my foot so I can get back to sleep. The foot won't feel normal like yours, it hasn't felt normal for 6 months but there'll be respite enough for now. So I'm going to attempt sleep now but I'm sure I'll be back very soon when I'll tell you all about this nasty disease called POEMS.