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.