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.
Wednesday 27 April 2011
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.
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!
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.
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