| Fund total | |
|---|---|
| £15,000 | |
| £10,000 | |
| £5,000 | |
Treatment diary
Ian's diary
21 December 2008
Well, it's just a few days before Christmas. I've made it through the last 5 months, and I'm thankful for that. Treatment-wise, I think I can reasonably say that I have recovered from all the nasty side effects of the chemotherapy. When, or whether, the positive effects will start to show, who knows. As I said before, success for me will be to have arrested or slowed the progression of the underlying active component of the MS. Subjectively, I don't feel much different and I don't notice any major change either way in my ability to walk. I wish I did, but there we are. It may take until my next MRI scan - perhaps on Big Bertha, the 7 Tesslar giant at Nottingham University - for the doctors to be able to measure any recognizable changes to the underlying condition. That is scheduled for June 09. So, having gotten over the first phase, Phase II is about to get underway. Again, this is not guaranteed to make a huge difference. Rather, it is designed to back up the treatment I have had so far i.e. to reduce the inflammatory element of the MS and so to give me the best possible fighting chance to retain, or even regain, some of my lost physical ability. And, the good news this time is that this is prescribable through the NHS, so no more having to dig deep this time. Having said this, in a year's time comes Phase III, which it looks like will have to be self-funded. This won't be quite so onerous a financial burden as the transplant. But it still could cost a few more thousand pounds. Bang goes the Aston Martin again! Anyway, Happy Christmas to you all, and a Happy and Healthy year ahead to us all.6 December 2008
It's now 4 ½ months since my transplant. All is going well. I have resumed most of my previous activities and I'm feeling well and happy to have made it to this point. I'm putting on weight; in fact, a little too much so I can no longer eat with the impunity I was enjoying only recently.
And, I've stayed infection free, despite mixing more or less normally and even with the prevalence of colds and sniffles all around. I've been trying to keep some distance, keep hand washing and so on, but there's only so much one can do to guard against infection.
As reported last time, I am exploring prospects for the next phase of my treatment, which will take me to this time next year. This will still be somewhat experimental but, thankfully, it should not take me to the horrible places I went in the summer. This all feels so long ago now. As I say, I'm just glad to have made it this far.
So, as we approach Christmas and the promise held by the coming year, I wish to repeat my heart-felt thanks to the medical teams who have made all this possible and to all of you who have supported me in so many ways. The fund-raising, which continues to be a success - around £12,700 at the latest count - has helped to lessen the financial burden. Naturally, I still welcome any further help towards this as it still leaves me a lot of money to find.
And, stay tuned for what will be the official closing event coming soon in 2009, and to which you will be welcome. This will be posted on the Fundraising Events page as soon as arrangements are finalised. Also, feel free to email me (ian@mspioneerfund.org) and to keep in touch anyway.
The support, good wishes, love and friendship of so many of you has been a real boost to me over the last months. This has helped me to get through the difficult times and to look forward to the future with optimism.
So thank you all for everything you have done. Have a Happy Christmas, and a Healthy and Happy 2009.
19 November 2008
I saw Professor Constantinescu, my neurologist, yesterday who is pleased (as am I) with my progress. I am now almost over the side effects of the treatment; the few lingering problems - digestion, dry eyes, etc. - I expect will get better over the next few months. I'm still at some risk of catching/developing viral infections, so I still have to look after my health and not take too many risks like travelling or mixing too freely. I will definitely miss not going away with Derby Focus to the Lake District at Christmas for the first time in 5 years, but I will be safer to stay close to home in the circumstances.
The fund for my treatment is doing fabulously well, having reached over half way towards the £24,000 total cost. An event to mark the end of official fund-raising efforts, and to celebrate the success of the fund, is scheduled for sometime in January in the Matlock area. This will be open to everyone of course, so I will let you all know once it is fixed.
We are now looking towards the next stage of treatment, aimed at further dampening the autoimmune component of my MS and, at the same time, stimulating potential recovery of some of the functional deficits (walking problems included). I'm looking forward to this next phase of treatment, now that I've survived the most dangerous phase. As usual throughout my treatment, I am hoping for a lot, and at the same time not expecting miracles. This has served me well so far.
Thanks to everyone who has supported me and helped me to get through. I'm looking forward to the future with real optimism.
7 November 2008
So the weeks, and months, roll by: four months since the transplant. Life is returning to some sort of stability and routine, which is exactly what I hoped for during the bad time. That's good.
I am now into a new phase which involves me in intensive physiotherapy (phew! It's hard work and everything is aching), and some more hospital stuff, like brain scans. In this way, I am working to recover some lost functions and hoping that the treatment has dampened down the inflammation as shown on the MRI scans. This may take some time - six to twelve months - before I know how successful the whole package has been. My neurology Professor is back on my case, now that haematology has finished with me. That's all good.
I'll keep you all posted.
Saturday 25 October
The bookstall made £71.00 and there will be another book sale for the fund on 29th November at Mackworth St Francis Church. The fund total now stands at £12000 following this and the receipt of a fabulous boost of £2007 from the Press for MS event. This is half way to the overall cost of £24,000. An article will appear in Thursday 30th October's Derbyshire Times showing me receiving the money from Press for MS.
The haematology unit have now discharged me as my immunity has 85% returned and this should continue to improve. I'm feeling similarly recovered from the transplant and chemotherapy, although I still have to watch out for colds and flu.
The timetable 'going forward' (as they say) is six to twelve months before we can measure the success of the transplant and how much it has stopped the inflammation in my brain (the active part of the MS). From next month, I am back under the care of neurology Professor Constantinescu. In the meantime, I am having regular physiotherapy to retrain my body (and mind) back into walking and moving as normally as possible. Physio will carry on for years, of course.
Monday 20 October
Now, at 12 weeks post transplant, I can tentatively say that my recovery from the effects of the chemotherapy is almost complete, although remaining ten per cent could take up to six months more. I can't, for instance, take any foreign holidays or go swimming until then because it takes that long for my reconstituted immune system to become fully working.
People keep asking me whether the treatment "has worked". It's hard to give a clear answer to this because the definition of "worked" will be if the progress of my MS is halted or slowed, which won't become evident for months at least.
In the meantime, I am working on the basis that it has worked and that the underlying inflammation has been slowed by the treatment. So I am building up my programme of physiotherapy, both at home and under the expert gaze of Kris, my physiotherapist, at Lilian Prime House.
Meanwhile, the MS Pioneer Fund keeps building up. The bookstall at Mackworth raised £71 - that's a lot of books at just 50p each! The Press for MS event has gathered over £1200 so far and I plan to attend cheque presentation on Thursday 23rd October, which will be featured in the Derbyshire Times.
Saturday 27 September
Well, it's now over eight weeks since my transplant. Overall, things are going well. My appetite has fully returned and I am back to my pre-transplant weight. Boo! That means I'll have to start to cut down on the pies and other luxuries; oh well, it was nice while it lasted.
My taste buds are only gradually returning to normal; it will be another few weeks before food starts to taste as it should. At the moment, food all still tastes slightly odd, a bit sour and strangely adulterated, but that's a small price to pay and in time this will recover. And not until twelve incident free weeks have passed will I be able to reduce the weekly hospital visits which are necessary, but which don't half take up time.
Moreover, the hospital visits are not quite straightforward. Apparently, my blood counts are improving overall although on the last visit, my haemoglobin was down and my Epstein-Barr virus level had gone up, neither of which are desirable. I hope that these are just temporary fluctuations and nothing to worry about. It goes to show that my immune system still has some work to do and, although my mind is in a rush to put the traumatic events of the last few months behind me, my body will take longer to recover than I think. Incidentally, it also feels most odd to have started shaving again, having only had about three shaves in so many months. Of course, the hair on my head remains a lost cause: no change there then.
Last time I said that, naturally, the Fund would be winding down soon. Unfortunately, the Focus events were rather thinly attended because on these nights other events were also taking place. However, I see that, in this month's Focus programme, another event has been arranged, unbeknown to me.
Again, Thank You my friends. I'm deeply grateful for your fundraising efforts and for the high regard so many of you place on my efforts to conquer my MS, both for myself and, if all goes well, for others too.
I'm also so grateful for the surprise individual donations the Fund is still receiving. Every contribution is so important, not just for its financial worth, but also for the kindhearted sentiment that lies behind each one.
From the point of view of the treatment, once having recovered from the after affects, the next stage is returning to my Neurology Professor with a view to seeing how my underlying disease has been affected by the transplant. This can only be assessed over time, perhaps 6-12 months. So, for now, I'm very happy just to be getting back to something of a normal routine and feeling comparatively well.
Monday 16 September
It is now eight weeks (I think) since I had my stem cell transplant. I am progressing back to health, although the side affects such as the weird sense of taste linger on. Also I am still rather wobbly on my legs - that is, more so than normal - and my legs are still 'tight', most likely because I have not yet returned to my swimming routine or my regular exercise and physio at Lilian Prime House MS Centre in Derby. These are the next things on my list, having just re-started a more normal social life; particularly singing with both choral groups. So, I am making the progress for which I was yearning during the bleak times; the bleak times which now seem well and truly relegated to the past. Thank heavens that I now feel able to say that!
It seems that the MS Pioneer Fund is now drawing towards a natural conclusion. There are still a couple of events in the pipeline, some of which have yet to be publicised. Incidentally, owing to illness, the Barn Dance on 20th September has been postponed to a later date: I wish Ken's wife a speedy recovery.
I hope one of the events still to take place before the end of the year can mark a symbolic close to the formal fundraising, in much the same way as the concert, back in July, marked its opening. By the time all the events have ended, and all the outstanding monies are in, the fund will have raised a fabulous sum of in excess of £9000! Fabulous indeed! Thank you one and all for the interest you have shown, and for your kindness and generosity.
As for my progress, it will probably take six to twelve months before long-term changes to my MS will be noticeable or could be measured objectively such as by MRI scans. I am hoping, both for my own sake and for the sake of other people struggling with this cruel disease, that my results will be positive. This, in turn, will add weight to the case that this particular type of stem cell treatment should be approved and made available free of charge for other people with multiple sclerosis.
Tuesday 9 September
Each week when I go back for blood tests and consultations at Nottingham City Hospital I am asked how long it has been since my stem cell transplant. This simple question reminds me that the most important purpose of my treatment had become lost amongst the more immediate consequences of the chemotherapy which comes as part of the same package. Now, almost six weeks on, mercifully I am getting over the worst of these side effects. Food still tastes wrong, but at least it is tolerable rather than repulsive as it once was. Taste buds, apparently, take three months to recover. I continue to take tablets, some of which, according to the warning label, are so cytotoxic that medical attention must be sought should any of their filling come into contact with the skin! To be fair, however, even these dangers are nothing to the risks of contracting the virus (CMV) which the tablets are meant to control.
Yet, all these concerns pale into insignificance when compared to the spell of in-patient treatment and the later emergency re-admission which now, I'm pleased to say, seem a long time ago. Now the news is much rosier. Long may this state of affairs continue!
Concerns over finding the money for the treatment has been made much easier thanks to the sterling efforts of all my supporters. It has been so heartening to discover just how many people have been rooting for me. This support, the many letters, cards, phone calls etc have been so important to me in helping me get through. It has also been important to me that all the various events brought people together socially. In other words that you all had FUN. And, I think you did! Now that I'm getting back amongst friends, I am hearing anecdotes from the various events which make me wish that I could have seen what went on. Oh, to have been a fly on the wall, for the belly dancing, for instance!
Most of the fundraising events have now taken place. There are two more scheduled events, the Barn Dance in Mickleover and the Bookstall at Mackworth, both of which I hope will add yet more towards the Fund and which will again bring people together socially, this time centred on my area of origin in Derby.
I am gradually picking up something of my routine, which I remember was an important goal for me when I was in isolation; one which at that time felt a million miles away. I'm not completely out of the woods yet, what with the risks of picking up viruses and other stuff to which my naïve immune system has not previously been exposed. For this reason, Professor Russell and his team are keeping a weekly eye on me for the next few months in particular.
Soon, also, I will be back with Professor Constantinescu to see to what extent all this treatment has been worthwhile. The timetable will stretch to perhaps a year before MRI scans and so on show any slowing of the progression of my MS, which after all was the main purpose of electing to undergo the transplant.
So I'm glad and thankful to have made it this far, not unscathed but maybe a little wiser for the experience. And, most of all perhaps, I have given myself the chance of stopping the downward spiral of my MS. This gives me hope for the future.
Captain's Blog: Supplemental: My thanks go, once again, to the members of Derby Focus who have arranged an extra fundraising event for Saturday 13th September, again on my old stomping ground near Derby. Everyone is welcome.
Tuesday 26 August
Hello my friends.
Progress continues to be positive but slow. The same old herd of bison keep trampling me, even after trying to achieve minor goals like a bit of cleaning up or making a snack. At least I've started to want food a bit more. Nothing still tastes right or appetizing but this is better than a couple of weeks ago when all food tasted, literally, like dirt. And a couple of weeks before that, soon after the big chemo started, even the mention of food was, for a time, intensely revolting, almost painful.
Looking back, too, there were a few days towards the end of my second enforced isolation in hospital where I went through some sort of altered state of consciousness. My mind was working overtime, asking questions, answering them, surprised to find that each answer boiled down to 'all is well', and yet not able to let go and stop this obsessive (though at the time fascinating) game. It's all faintly embarrassing now, but at the time, it was vivid and real. I described it at the time as 'Nirvana'. But you can keep it! I'd much sooner have the ordinariness of everyday life, with its real and tangible frustrations, joys, disappointments and so on.
I was, perhaps inevitably, also spending some time in reflective mood, looking back on aspects of my life; and adding them to my website as they occurred to me at the time (a la Facebook, I suppose). As for favourite music, for example, this is always a nonsense. In the end this could be any of a hundred, or a thousand pieces. Taken out of their context, where and how things were at that moment, the significance has changed and we move on to something else. I'm glad that this is how things are. And yet, at the same time, I feel the sadness and frustration that these moments come and go and aren't experienced in the same way again. We try to capture them by keeping souvenirs, buying a brochure or CD, taking photographs, or whatever. And it doesn't quite work. But, Hey Ho, that's life!
So, emerging from the pit of horror and on the road to recovery, I'm learning to be patient and to pace myself in a new way. For example, it sure is strange sleeping 15 hours a day, but there we are; at the moment I have no choice!
Sunday 24 August
Hi Folks.
At last, I feel up to posting an update. At least I'm at home, just about capable of surviving independently. But it's still very tough; I can't believe how impossibly tiring it is doing even the simplest things like getting out of bed, getting to the kitchen, feeding the cat, and so on. I did sort of guess that I should feel tired for a few weeks after getting out of hospital (I think I've been out two weeks now, but I'm not keeping a calendar as such). But now I know what the word 'tired' really means; I've never felt so exhausted so constantly. And being the person I am I'm feeling irritable and impatient trying to get back to some sort of routine. It seems light years away since I was able to go out socially, even go to the shops, the pub and so on, never mind getting back to swimming, going to the MS Center in Derby and so on as I was doing only a couple of months ago.
Tomorrow, Bank Holiday Monday, my friends, Carole, Liz, and Susan, are doing yet more fund raising for the MS Pioneer Fund by running their car boot stall at Bakewell. You may see from the 'thermometer' that the overall total is approaching £8000. And the Fundraising is not over yet by any means.
I am so grateful to everybody for their initiative in organizing events, including Sybil, my neighbour whose Coffee Evening continues to yield more donations, John Greenwood whose Boules Evening is coming up soon and Ken's Barn Dance at Mickleover, all events which were organised on their own initiatives and much to my surprise.
My job, I guess, is to try to recover pronto, but it is really so hard, believe me.
For the moment I'm glad that I'm being weaned of the masses of antibiotics, etc. which fill my kitchen cupboard. It's always difficult to sort out what are the side effects of all these pills against how I might be feeling otherwise, although I know that these medications are there to protect me from more horrors. No more horrors, please: I've had enough for a lifetime, thanks.
Finally, a big Thank You to the link man, Russell, whose work behind the scenes to keep the website up to date, despite commitments of his own, and for his advice on keeping my computer running despite a catalogue of technical problems which seemed overwhelming at times. [You're welcome! - Ed.]
(Ever since I started it about a week ago my computer was working overtime (i.e. 95% memory usage even when idling, making it virtually unusable and I couldn't guess why), going balmy and driving me similarly. Today, miracle; it seems to be calm again. Thank heavens for that!)
Hopefully now, both the computer and I will be getting back to normal!
Thursday 7 August
Hi Folks, at last. More days have elapsed, and thank heavens I'm out of hospital and starting the recovery phase. The 19 days there are quickly fading into the background; the sooner they are forgotten, the better, as far as I am concerned.
For three months I'll have to go back as an out patient. I went there this morning and the Prof was satisfied that my blood counts are recovering well. Good. Three months sounds like a long time, but at least things are on the up.
As a side issue (but still a significant and unwelcome frustration) internet access has been a major problem. I'm finally able to get my '3' Mobile Broadband device to work. Who on earth designs these things? And why make them so user unfriendly, so strewn with obstacles and unnecessary mysterious steps as to almost put off their customers for life?
At least I'm moaning about the frustrations of the world and not so much about my own health woes.
Recovery will be slow and unless I'm told otherwise, I expect to be a partial hermit for a couple of months. I'm guessing that it won't be less than six months, perhaps twelve, before MRI scans etc suggest a halt to my MS, which, after all is the first objective of the treatment. Then maybe, just maybe, the next phase can be considered, that of repair/reversal of some of the neurological damage. Again, that seems a long way off, so one thing at a time.
Two more things: The coffee evening run on Monday this week by my lovely neighbour, Sybil, raised £480 for the MS Pioneer Fund; wonderful, Sybil, and thank you so much. Secondly, Ken Tucker, one of the Dalesmen and a friend of Mum and Dad, has arranged a Barn Dance for 20 September. Apparently both the Band and the people at Mickleover Memorial Hall are very sympathetic to the MS cause and will only charge to cover basic costs. So, again, a big Thank You to Ken and to all those involved.
So, the show rolls forward. I've survived, at least. And the prospect of recovery from the treatment, and later from the MS itself - at least to some degree - maintains hope and optimism for the future. Good!
Sunday 3 August
Well, the other doctor saw my blood readings today and said, Yes, I can go out of here, probably on Monday i.e. tomorrow.
Well, good, I expect. But my body doesn't feel ready. I'm still incontinent through the night, though nowhere nearly as much. And eating is still hard work. Sarah, the nurse says this is normal and is the stage at which everybody is discharged after this type of chemo! Fair enough; I'm adjusting to this idea now I know.So tomorrow, Monday teatime, I'm likely to be out of this isolation. But my blood counts, hence my immunity, will be low for months, so I'll not be able to carry on normal life for ages yet however I feel. Richard will take some time off to look after me, initially at his home but, I hope very soon to be able to get back to my own bungalow.
I dare not think back to those times in here when I was not able to update this diary. I did not know it was possible to feel so ill or to be so ill. Thank God that's over.
There will be more as soon as possible, dependent on getting a wireless connection organised at Richard's home.
Saturday 2 August
Suddenly, here I am again after another period of silence. Suddenly too things are taking on a whole, new, more positive complexion. My neutrophil count has started to recover! This is 2-4 days sooner than I was led to expect. Good news at last - although I still feel lousy, only just good enough to type for a few minutes. They said that, once my counts start to recover they will discharge me surprisingly quickly. The weekend doctor that bore the news said that maybe I'd be out of here by Monday (4th August). It will take a lot of mental adjustment as I'd set my expectations for about another week. I said I would talk to the other doctors on Sunday and see if things are still the same. As yet I really don't feel well enough to be out, but let's see what tomorrow brings, eh?
Sunday 27 July
So, the spell of 'radio silence' is broken. Boy, have I been burning, burning. Yes, my temperature was too high again yesterday (I think). But the other stuff - the delayed reaction to all the toxic chemicals - gave me violent, uncontrollable diarrhoea for most of Saturday and right through the night. In turn, my MS multiplies massively when I get a fever which means I become largely paralysed and unbelievably feeble. Thankfully, my temp is coming down, and they can now give me something for my poor guts.
My re-transplanted cells should now be starting to graft. My leukocyte count came down yesterday to something like 0.1 (normal is 9)! This is good, apparently, as part of resetting my immune system. The doctors still tell me to expect the mouth pain: touch wood it's only low-ish for now.
This is about as much as my body will allow. So I'll sign off with a big thank you to every one of you in everything you are doing. It really does help me to get through.
Friday 25 July (evening)
To recall and put into words how the treatment has been, I can't. And I won't try very hard. Frightening, frightening, frightening: trying to bide my time and just hold on. But it's so hard, not knowing however bad I feel, how much worse could it get?
I reacted to the ATG rabbit protein which I had for 12 hours yesterday and which I am also wired up to now for 12 hours. This gave me a high temperature and boy-oh-boy did I feel ROTTEN - and frightened!
Now, just now, and thank God, a slight sense of normality is dawning. Thank God. Does this mean that I've passed the low point? I dare not think otherwise. The ATG I'm having now has not caused the fever, shakes, fear I had last night. Thank God. My throat has been a bit raspy but, up to now, still no ulceration; which I dreaded.
Just maybe I'll carry on upwards. The world out there seems so remote; it sure will do after two more weeks. Hey-ho! When I'm really ill it is second-by-second. That I have started to think beyond the next few seconds I will take as a good sign.
And finally, it is hard to think of human beings working harder and doing such a marvellous, dedicated and selfless job than the nurses here. We so often read such comments in the papers. Now, it really means a lot to me.
Enjoy the Cornish Pasty night!
Footnote 10pm: I've just been told that things are supposed to be bad again in 5 days' time. My twinge of optimism might have been premature. I'm told this is normal and that things have to get worse before they get better. My blood counts have to drop to almost nothing as part of the process, and that takes time. Horrible. I'm not there at this moment, that's all there is to say, so that's good so far as the present moment is concerned.
Wednesday 23 July (9.30pm)
Something of a rollercoaster ride today. I was dreading today, wondering how bad the sore mouth, etc. would be after yesterday's aggressive chemo. So far, I stress so far, it hasn't materialised. It may do because the effects trip in over three days before any recovery in immunity.
I've had back my stem cells: that's very good. I only reacted briefly, and much of that might have been my anxiety and I got over that ok. It really is a bind hooked up to the drip, especially in the night. I won't go into detail except to say that a decent night's sleep can't be had when your system is flushing through with copious quantities of liquid.
Again, I'm just biding my time, letting the treatment take its course. And waiting to see what the next days bring. At least I've almost completed my first week.
As always, knowing that you folks are out there and have thought about me is a tremendous comfort and support.
Monday 21st July
Just to say a HUGE THANK YOU for all your love, best wishes and your fantastic efforts in raising so much (up to now) towards the cost of my treatment. It seems too that everyone had a lot of fun at the Launch Concert and on the walk yesterday. The belly dancing and cornish pasty event should be fantastic too.
I'm sorry that this is a bit general. I can't thank you all individually as I would like. There are just a few hours between the internet connection finally working today (the 5th day of chemotherapy) and tomorrow (Tuesday) when I am on the strongest chemo for 30 hours. After that, a few weeks need to elapse before I can take visitors. I will welcome some calls on 0115 9969 1169 ex 57064 direct to my room. But I might be too groggy 'til Thursday.
Sunday 20 July (morning)
Another day begins. More chemo last night: Cytarabine drip again, the one that only lasts for 15 minutes but which leaves me feeling nauseous the next morning i.e. now. So I'm feeling a bit sorry for myself just now. And it will pass.
And so to happier things (he says, knowing the importance of the Freudian notion of deflection!).
Wow!!! The Launch Concert at Matlock last night. Can I say it went well? Financially: Yes. Socially: Yes. Apparently it was great. The idea of wanting to be in two places at once seems a bit bizarre. Of course I wanted to be in Matlock. Dearly. Do I want to be here in hospital? No, but why should the coward in me be Top Dog only to regret later missing the chance to stop, even reverse the decline in my health. Mum and Dad say it was a fabulous occasion, packed, busy and thriving. Good. That's what I wanted. It feels good to me to imagine people who have not met each other coming together via something that they, and I, have in common: the thrill of singing and all the humanity, the social atmosphere, raffles, banter and so on that goes with it. To me, this feels the most precious of all.
The same goes for today's event, the sponsored walk. To imagine my friends, singers, fellow Focus members and relatives all meeting and interacting, having fun together is so precious to me; more precious than money.
So, although I don't need to say it: Have Fun! Share the love that we have for each other. Think of me as I am thinking of you.
(My frustrations with the computer continue. Hence, this is turning out to be a diary, written with you the reader in mind, but perhaps more internally reflective than it would have been otherwise. Maybe it's none the worse for that; time will tell.)
Friday 18 July (evening)
It's all a bit surreal perched here in my little hospital room, only one day and a bit into my planned three-week sojourn. And, oddly, there has been so little time for rest; none at all to get bored. Morning and no sooner are dazzling arc lights powered up to herald a new day - only moments (seemingly) after my head hit the pillow - than the next round of trolleys, machines, drips and the like are wheeled in. So begins the new day's measuring, recording and numerous other ministrations. Next a busy procession of doctors and nurses prepare sundry bags of liquid which, although they are clear and seemingly innocuous like water, are labelled in baroque pharmaceutical language. These clinical activities are punctuated by rounds of tea and meals, but even the latter becoming less appetising as the chemicals start to do their work.
I managed to send out a hurried email last night. It's a good job I did. Lo and Behold! Today I can't send anything out, heaven knows why. So the remainder of the day of the day, between the above mentioned activities, were spent troubleshooting what is probably simple hitch, but which to me is an opaque and baffling mystery. I'm starting to feel like the fabled old fogy who has to ask the next generation how to programme the VHS recorder (don't laugh).
In the meantime I'm typing into a Word document in the hope that someone will solve this technological mystery, click a couple of keys and put me back in touch with you folk on the planet Terra Norma. If you are reading this of course, they have succeeded [after a slight delay, hence this diary entry only appearing online on the 22nd - Ed.]. So, thank you, whoever you were!
My room faces west. The evening sun finally emerged to cheer the day's end. I'm slightly anxious that things may be difficult as my treatment progresses. Keeping infection-free is the main object, hence the necessary level of seclusion.
To those of you who have phoned me here, thank you. Whilst I'm not fully in isolation and I can take a visitor or two, I still feel happier to stay cocooned and to reduce risk as much as possible for the time being. My number here is 0115 969 1169 Ext 57064. Please feel free to call as I can barely call out from my mobile due to a feeble signal.
At this moment, I truly hope the Concert in Matlock is a wonderful, happy and uplifting occasion. Oh I wish I was there, 'Dibley', 'Dashenka', 'Dragon', and all.
Thank you all my friends in G&S, The Dalesmen and everyone involved for your interest, enthusiasm and love. I'll keep you posted as technology allows.Tuesday 15 July
All is on target for going in for the 'Full Monty' chemo, etc. on Thursday 17th July. So I can't be there for the weekend Launch concert, sponsored walk, etc. I wish I could be, but now the decision is made, I just want to get on and start the treatment.
I'll be on Fletcher Ward in the City Hospital, Nottinghan. I'm not expecting visitors, and I'm fine about this; I wouldn't want anyone to think they have passed on any bug to me when my immunity is so low, as it will be. Once my stem cells have beem re-implanted (around the 23rd July) I then need about 2 more weeks before my immunity starts to rebuild. So altogether, even if all goes very well, it is likely I'll need to be coccooned on the ward until the end of the first week in August.
The other good news is that Fletcher ward is Wi-Fi hotspot so I should be able to update you on my progress. There may also be an incoming line for people to contact me; I'll keep you informed exactly how, what number, times, etc.
So, it's all good news. The Fund looks like it's building nicely [we'll hopefully update the total here soon - Ed.], thanks to the commitment of everybody walking on Sunday, their sponsors, and those taking part in the Launch Concert on Friday.
Throughout the day on Friday 18th, Peak FM should feature the events and extracts of my interview with them. Also, the latest news will be in the Derbyshire Times.
I want everyone to really enjoy all the events, to meet people, have fun. I'll be with everyone in spirit, as I know everyone will be with me.
Tuesday 8 July
Since Monday 30th June I've been taking anti-viral, anti-biotic and anti-fungal tablets to protect me from infection following the initial dose of chemotherapy to deplete the 'faulty' stem cells which may be responsible for my multiple sclerosis. Then on Tuesday last week I started daily GCSF injections which stimulates the remaining healthy stem cells and releases them from my bone marrow into my bloodstream for 'harvesting'. Well, yesterday was Harvest Time, and what a bumper crop! After being attached to the machine for three and a half hours - it gave me chance to read a few more chapters of Lord of the Rings - the bag of stem cells was sent to the lab for checking. A count of two million would have been enough; five million would have been ideal. But no-one expected a count of 11.37 million! I must have done something right, but I'm not sure what.
This will all stand me in good stead for the next, potentially dramatic, stage of treatment. Here, within the next two weeks, I'll return to hospital where my remaining immune system will be wiped out with strong chemotherapy. This will be followed by injecting my stored stem cells back into my bloodstream, and so a new healthier immune system can start to build back up.
The treatment has not been particularly easy or pleasant so far, but I am relieved that everything seems to have gone so well. I must enjoy this next week or so, because the next phase of treatment is potentially the most difficult. Because of the large dose of chemo I have been warned unpleasant side effects. I'll have to be more-or-less in isolation during the critical 2-3 weeks before my new immune system begins to re-grow. But, Hey! So far, so good. As ever, I would like to thank all the friends and well-wishers, without whose love and support I don't think I could have made it even this far. I'll provide updates as things progress. I'll know more after my visit to Professor Russell on 14th July. I hope as many people as possible will be able to make it to the official Launch Concert for the MS Pioneer Fund at All Saints' Church, Smedley Street, Matlock on Friday 18th July, as well as to some of the many fundraising (and Fun) events.
Thursday 3 July
So far the chemo is going as well as can be expected. Actually I don't feel bad at all, I'm pleased to say, just tired. I'm being careful not to mix with people while my immune system is still depleted. The GCSF injections I'm taking will build my immune system back up over the next few days and, all being well, this will enable the next stage - harvesting my stem cells - to take place over a few days next week. Then, later in the month, my immune system has to be zapped out, big time, which is when I have to stay on the 'isolation' ward at the City Hospital in Nottingham. Until then, I'll be going there on a day-case basis for the harvesting procedure. But so far, so good, as they say. It's not been easy, but nothing important has gone wrong and the treatment is managable.
Saturday 28 June
I'm out of hospital today after my first dose of chemo. This will deplete my immune system by Monday, so although I can still be out in the world I've got to be very careful around people. I start the prophylactic tablets (anti-biotic, -viral and -fungal) then, and, unless I develop a temperature, the treatment should now proceed as arranged.
The next phase all seems a long way ahead, so for now I'm just concentrating on taking things easy, trying to eat well and keep bug free (and contenting myself with watching the tennis!).
I'll try to keep the website updated, but it looks like there is no internet access in the hospital so I'll have to text updates.
I'm doing alright so far. The drugs might make me feel a bit nauseous and give me mouth ulcers. But not so far, so touch wood!
As I said, I'll try to keep you all posted, via the website, as I go along as best I can in the circumstances.
Thanks to you all who have sent your best wishes and who are supporting me in whichever way; this has already given me a lot of strength which I doubt I would have otherwise.
Timetable
This was the planned timetable for my treatment when it started.
| 25 June 2008 | Hickman Line (an indwelling intravenous catheter) inplanted in my chest. Two nights in hospital. |
|---|---|
| 1 - 4 July 2008 | Daily injections of growth factor hormone to boost my stemcell count and liberate bone marrow stem cells into bloodstream. |
| 7 - 11 July 2008 | Apheresis (like dialysis) for several hours each day to harvest viable stem cells. |
| 21 July 2008 | Immunosuppression. Inpatient stay in isolation. 2-3 weeks. |