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.

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.

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.