That first seizure, Pt 1.

This was the event that dramatically changed the course of my life in a matter of minutes. It is something I reflect upon as a person might do if they were involved in a car accident that disabled them severely in a fraction of a second.

3 December 2009 was a Thursday. On Monday and Wednesday of that week, Tracey and I had played squash for an hour each of those days, and were going to go again on Friday. We both loved those games as they were great for fitness. I had played a lot of squash and loved the game, but a long time before. Tracey had never played up till that time.

   I was a bit concerned that the knee problem that made me stop playing years before would arise again, but it didn’t. Tracey continued to improve rapidly over the months before December and the unequal battle at the start quickly developed into a genuine contest.

   Late on that Thursday morning, unshowered, unshaven and pretty disreputable, I decided to cut some of the privet hedge that was getting out of control in one spot, intending to fill the green bin and then shower and become respectable for the afternoon. 

   Using a pruning saw, I cut long thick stems with my left hand [I am left-handed] and pulled the cut branches down with my right.

   After about 15 minutes sawing and getting a little hot and sweaty, as I was threading a cut branch through the uncut ones, the fingers of my right hand suddenly started to twitch and feel as if I had touched a hot electric wire, tentacles of burning electrical sparks running up the fingers into the hand. The fingers were dancing visibly.

   Naturally, I stopped working, but wasn’t unduly concerned, thinking that somehow I must have pinched a nerve somewhere in the arm. It was hot and I stood under the shade of a nearby tree, quite confidently expecting the sensation to go away at any time.

   But it didn’t. On the contrary, the tentacles of fiery electricity started moving up my arm slowly towards the elbow. I became a little more concerned, but was still convinced it was some passing phenomenon that would stop and I would get checked out by my GP. I waited still under the tree for it to pass.

   But then the arm itself started to jerk rhythmically with a pulsing sensation and it finally got through to me that something very odd was happening. Yet not for a moment did I suspect the real cause of the event. What seems so obvious now with the benefit of hindsight couldn’t have been further off my radar at that point. Pinched nerve. A muscular spasm….

   But I did know one thing. It was not under any control by me and it was not stopping. It was extending further and further up the arm towards my shoulder.

   I guess it must have been sheer denial, but the thing I did next was gather up the gardening tools with my left arm and put them under cover, and then, with my right arm now seriously in spasm, I walked on to the verandah and sat down, still convinced that any time it would stop and then I’d tell Tracey about it and we’d check it out. But as I sat there with the arm out of control, the penny finally dropped. This was not going to stop by itself, it was getting worse, and I needed help.

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Responses, Diary Update, Seizures, Hair

Responses to blog entries

How good to see some responses to various bits of this blog! But I can see I may fall into what is for me an almost irresistible trap – wanting to reply to every response! I’ll try to discipline myself on that…. or at least limit myself to a sentence or two max. But your responses will be an indication of what interests people most and that helps. I hope no-one took too seriously my wee story. Never let the truth interfere with a good yarn!

Diary update

I’ve decided to keep these really brief and people can tease out details in comments if they want. Tracey continues to recover from her surgery but it’s a slow process [not quite as slow as donating a kidney though –that took over 2 years]. My blood pressure seems variable and I need to watch this as I’m not too keen on the prospect of stroke or a coronary.

Seizures

I am now pretty familiar with the sensations that precede a seizure after dealing with them for close to 10 months. Last night I had all these sensations plus mood swings, but we quickly put the arm in its sling and I did what I do mentally to deal with seizures. Though I am certain the damaged part of my motor centre wanted to play havoc with my right side, it didn’t happen. That's a win in my book, and a big one. It’s exactly 3 weeks today since the last one. Fingers crossed.

Hair

I don’t know why, but keeping my hair is a bit of an obsession with me. Vanity? Probably. Maybe because it’s so much part of identity. Anyway, it keeps fighting back. I thought I was going to lose it all under IV chemotherapy, but it just got thinner and thinner [and the back of my neck got colder and colder] and now is a rather strange but visible covering just about everywhere it should be, except where my skull was blasted by radiotherapy earlier in the year and never grew back. But if I’m going to lose it, why not on my face, and save shaving? It is an luxuriant there as ever. Play fair now….

A Wee Story

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This is written in the spirit of Clive James’s Unreliable Memoirs. If you don’t know what that means, then the short answer is that it is not entirely true, but the bits you would least expect to be so probably are.

As a hospital outpatient it’s amazing how quickly you have to adapt to the public exposure of things you regarded as extremely private all your life before. Let me exemplify:

   When you arrive for a chemo session, you never quite know what will happen. Last time, the room was full of patients at various stages of their day’s treatment. As soon as I arrived, I was told a ‘specimen’ from me was required.

   ‘But I went to the bathroom just before I got here!’ [I live 5 minutes from the hospital.] ‘I don’t have the ummm ammunition right now.’

   ‘No matter, you can manage it, people always do.’

   I look around the room.

   ‘Anyone want to volunteer to help?’ I say, waving the container hopefully.

   There are no volunteers. A vaguely amused but threatening look from the administrator leaves no doubt that third party contributions, however generous, would not be welcome.

   ‘Go on, in there and do your best,’ the nurse wheedles with that commanding tone and presence of those who have dealt with many a urinary recalcitrant before.

   ‘If I do, it will be more or less pure coffee,’ I tell her. ‘99% caffeine, 1% humiliation.’

   She grins cheerfully and spurns the remark.

   ‘I just need one drop!’

   She shames me into submission.

   So I go in to the bathroom, receptacle in hand. People with tubes taped to their wrists cheer and offer faint words of inspiration. Never in my life have I felt so urinarily challenged. My bladder has shrunk suddenly to the size of a very small pea [hah!]

   I wonder if I just put in a teaspoonful of water from the tap and hope that a minuscule amount of DNA surviving the sterilisation process from the last supplier will do the trick, but I abandon the H2O option. Let’s face it, the idea’s not going to work on any level, is it? Considering that the effectiveness of a $5800 shot of Avastin depends on the accuracy of the result, tampering with the evidence isn’t a great strategy.

   But… I can do this. I stand there with the tap running a little, the tap making that hissy sort of sound cats make when riled up, thinking of gushing fountains, and streams of mountain water chuckling over river pebbles.

   The miracle occurs. There is indeed light at the end of the tunnel, so to speak! I return and face an expectant audience, waving the receptacle triumphantly and doing a public inspection. ‘Want to see? There’s a good thimbleful in there. And top quality after all’. No-one seems to want to verify the fact.

   ‘Sit down in that chair on the end, Mr Wright,’ says the boss lady, ‘and we’ll go look for a vein now.’  
   In the back of my mind I think, ‘at the university I’ve been Dr Wright for 30 years. But here, I’m just another aging bloke handing over a pathetic sample of baby-boomer piddle in front of a full audience!’ 


[If you'd like to read the next story, here it is. That First Seizure]

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To blog or not to blog...

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I remember very vividly a story of a well-known author who was deeply offended when a friend wrote to him and said, ‘if you want to know what I’ve been up to, read my blog!’ ‘No, I will not read your blog,’ said the author, ‘but if you write me even one sentence in a personal letter, I’d be happy to read that instead.’ 

   So it is with blogs. People can be offended by their impersonality. As you will see if you read my very first entry, you will understand why I am hesitant to throw my personal life open to the world, yet feel some people may appreciate not having to ask, and others may welcome the chance to discuss and share some matters of common interest. 

   Anyway, it’s your choice to read as much, as little or absolutely none of it! And that’s how it should be. Older posts go back to 9 September. Remember, this whole thing is a work in progress.
 

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Sunday, 26 September 2010

People in my life: the Dish and the Ballerina I worked as a lecturer in Asian history in the History Department at the University of New England from 1976 to 2007. Somewhere along the line, quite a while ago, Trish Wright-Langsford [better known in the olden days as Trish Cluley] and Gina Butler joined the staff of the Department as Administrative Officers. When Tracey met them, she called them 'Trish the Dish' and 'Gina Ballerina', names which appear to have stuck with them for the past decade.  These two women are living testament to the fact that the Admin Officers are by far the most important and powerful people in a  Department or School of a university, and woe betide those who put them offside! But that's another story. More importantly, Trish and Gina have been fantastic in keeping morale up for Tracey and me in difficult times with their laughter and wickedness and fun, visiting and telling the uni gossip and going over old times. True friends - the best. Never would they let you down.

Diary Update Late-ish Sunday afternoon. The headache I had yesterday seems to have gone, which is good news, as I was connecting it, perhaps quite wrongly, to an increase in blood pressure. I have had so few headaches over the year that the warning bells go out when one happens. Probably a case of a little learning being a dangerous thing. [Thanks, Mr Pope, but though there are plenty of Pierian springs about I don't have that much time and energy to explore them!] There's been an increase in intermittent pain in my right arm, which I am seeing as positive after some fairly heavy duty physiotherapy last Thursday to try to build some new neural connections between brain and arm. It's hard work, both for the physiotherapist and for me. It is so strange to tell your wrist to do something and it just... lies there. But with effort comes a little movement, and the only way is to build on that. Stroke victims, I know exactly how you feel when you are trying to recover use of some portion of your body. More importantly, we are almost up to the 3 week mark without seizures. This has never happened before. There's an awful lot of wood-touching going on here... Disclaimer: I am not a medical doctor and what appears as advice here is simply the product of my experience with my form of cancer. It carries no authority in terms of treatment of any other person and should be seen merely as a point of comparison with medical advice from professional medical sources.

Friday, 24 September 2010

Diary Update It's now ten days since the first injection of Avastin - long enough to have a mini-review of how it seems to have had an impact.  It is hard to say for sure though, because there are so many variables, and effects may be wrongly attributed to causes. I think the increase in Keppra to the maximum dose together with the tumour inhibiting function of Avastin have been responsible for the fact that there have been no seizures for the past 18 days. This is the longest period since the tumour was detected that there have been none, which is wonderful. Not only have the seizures stopped for the moment at least, the risk of seizure seems also to have fallen. This means that the physiotherapy on my arm can proceed with less risk, and even more importantly, remedial therapy for the right arm has begun - an attempt to recover limited use of the arm and not merely pain relief through manipulation of the shoulder joint. This is an important step both physically and psychologically. Right leg mobility has improved a little with the pause in seizures and perhaps a positive effect from Avastin. I'm not getting too excited about that yet. On the debit side, several tests with the monitor reveals that my blood pressure has increased significantly in the past week. This is a known side effect of Avastin but it could also have been aggravated by eating some ill-advised foods. Back to a sensible diet until the blood pressure is under control!

Musings While Tracey was resting up after her operation today, Sylvia made me a fruit salad, the contents of which were diced fresh: apple, pear, strawberry, blueberry, kiwifruit, papaw [papaya], red grapes, rock melon, and mango. Delicious, especially when steroid use makes me greedy! Several of these at least are often described as inhibitors of tumour growth, especially the red grapes and strawberries.  Such foods are described as natural anti-angiogenesis foods - ones that are reputed to starve the tumour naturally of its blood supply. There are plenty of sites on the web that discuss this process and of course their reliability may vary, but I rather like this one. Why? Because it advocates red wine and dark chocolate, as well as the usual suspects!! Disclaimer: I am not a medical doctor and what appears here is simply the product of my experience with my form of cancer. It carries no authority in terms of treatment and should be seen merely as a point of reference to medical advice from professional medical sources. Please tell me how you think this blog could be improved. I am open to suggestions, without surrendering the right to ignore them!

Wednesday, 22 September 2010

Diary Update


Tracey is currently being prepped for surgery [removal of gall bladder] so we will be waiting to see how that goes. With luck she will be in the private hospital here overnight only, and be out again tomorrow, in the hands of my daughters who are now charged with the running of the household. They will have no difficulty doing that.


I am feeling quite good - no changes worth mentioning in the past 24 hours, but I slept less well and am probably going back to bed again shortly for the rest of the morning. I hope we hear about how the operation went later in the day.


Update to update: Tracey is now out of post-op recovery and all seems to have gone well. Excellent news!

Routine - try to establish and keep one

In the past 9 months or so I have become convinced that people under treatment for any sort of cancer benefit greatly from as strict a self-imposed routine as possible. This includes

• The time you get up
• The time you eat and take medications
• Other meal times
• Periods of sleep
• Showering etc.
• Time you go to bed

You find that you often have to break these schedules to be able to keep appointments with medical people or others you have to work around, but on the days you don’t have these commitments, keeping to your normal timetable helps to give your body a predictable rhythm. 

I’ve noticed how being thrown out of this rhythm too often puts extra stress on your body and mind. You don’t need that. If it’s within your control, stick to that routine 7 days a week if possible and take tension from your system. Stress surely doesn’t help you deal with your illness, and your stress levels can rise over small matters much more quickly than for other people. And when tired at any time and you are near a bed, sleep! It's very good for you.

People in my life: Watto

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Dr Ian Bruce Watson. Scholar of Islamic history, artist, cattle breeder, gentleman. 

  The name was enough to strike terror in the hearts of undergraduates who were good enough to do better in their studies than they did, and dared insult his intelligence by handing in inferior assignments than they were capable of. Yet this was the same man who could pick up the broken student from the floor and for hours patiently unravel their problems and set them off on a positive path. 

  On the other hand, Dr Watson strikes fear in the hearts of politicians and bureaucrats when they incur his wrath, which is fairly often; they surely hear about it, and in no uncertain terms.

  Watto lives some 40 km away with his gentle and lovely wife, on his small cattle property. He gave up the university several years ago when it failed to live up to his high standards of scholarship and became a commercial enterprise with a fast declining understanding of the meaning of the traditional university ethos. 

Maureen cooks us goodies and they bring produce straight from the farm. They drop them in every so often, much to our delight. Both of them have been towers of strength in many ways for us in the past months.

Watto's painting. He also illustrated many of the stories in this blog.

When Watto heard of the fundraiser to buy the prohibitively priced Avastin, he donated one of his fine paintings to be raffled. He's a mate in the best national tradition of this country, I’m proud to be his friend.

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Monday, 20 September 2010

Diary Update


A red letter day in the Wright-James-Pearson household! For a week or so it will become the Wright-James-Pearson-Wright-Wright household, which is to say that Alice and Sylvia are on the plane from Melbourne and should arrive here in Armidale at 10 am.


Again, I slept well last night, perhaps still buoyed by the euphoria of the generosity of friends who have given me the opportunity to test Avastin properly over the next two months. My body feels freer from the tyranny of seizures which [touch wood!] have not happened in almost 2 weeks. This has happened before and I do not believe we will not encounter them again, because each time we have had respite from them they have struck back without warning. But the longer between seizures the better. I'm grateful for the period inbetween.

People in my life: John Guillebaud

Yesterday I got an email from John Guillebaud, Emeritus Professor of Family Planning and Reproductive Health at University College, London. He has been a friend for many years after we cooperated on a long-term project dear to our hearts. I might tell you about that later, but not now. Suffice it to say that he is a man of great vision and leadership and he has the interests of the future of humankind at the forefront of his mind and actions on behalf of humanity. He was commiserating on the poor prognosis for me but as usual offering appropriate encouragement in other ways.

Anyway, I just wanted here to quote from him from his signature line on a matter far more important than the life of one mortal on the planet:

“We have not inherited the world from our grandparents, we have borrowed it from our grandchildren."

I like that.

Sunday, 19 September 2010

Diary Update


It's Sunday. Tracey's birthday - which we will celebrate very quietly. She goes in for surgery on Wednesday to get rid of those galloping gallstones... and the way to do that is to remove the entire gall bladder. We will be glad when that is over and recovery is in train. My daughters Alice and Sylvia will arrive tomorrow so that the household remains in order while Tracey is recovering.


Inevitably this day is tinged with great sadness, as it also happens to be the second anniversary of the death of my youngest sister, Kay, who passed away after a Herculean effort on her part and that of her husband John,  to combat her breast cancer. She was a beautiful person and is sadly missed every single day of our lives, and always will be.


It seems somehow unsuitable to talk about myself today. I'll just report that I slept well and feel encouraged as the week goes on that the chemotherapy/Avastin combination seems to be beneficial.  The post-chemo weariness remains but that is to be expected.

People in my life: Wendy and Laura

Life inevitably presents difficulties, and my friends Wendy and Laura have had more than their share. Yet it was these two wonderful people, mother and daughter, who set in train events which have given me a chance that I never thought was possible.

Probably the best way to explain this is by reading the document Benefit Night 17 Sept 2010 on the right hand side of the screen under Additional Information. It is a short speech read to the gathering last night.

All I can say is that the people in my community of Armidale NSW are fantastic. And not  only have they raised money for my treatment, an army of blokes descended on our house this morning and gave our huge and out of control hedge a massive haircut, and cut the lawn as well.

Thank you all.

Denis

Thursday, 16 September 2010

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Day 3 of IV chemo - the final day for the month. I am very glad that there are only 3 days of sitting in a hospital chair per month, even if I feel more uncomfortable for a week after that's finished.

I think the Avastin treatment has so far had at least a psychological effect even though it is very early days. So far I don't think there are adverse physiological effects but realistically they are more likely to appear later. No, it's just that feeling that you have taken some real control, however limited, over your destiny, and that provides strength to tackle the frustrations and indignities of dependency.

I have been totally independent since the age of 16, leaving the family farm to go to Teachers' College in Brisbane, 500 km from home. It is not easy to come to terms with the dependency you may have last experienced as a small child. If your GBM affects your motor skills, as mine does, then you will have to accept it. It takes time, but in our case, quick adaptability to changed circumstances is vital. It's also vital for the sake of those who share in caring for us. Try to see it from their point of view as well. It’s not easy for them. In fact, in some ways it definitely is harder, day to day.

If the effects of Avastin are positive for me, then one huge benefit should flow. Restricting the tumour growth and the brain inflammation should do two things

• Cut down the number of debilitating seizures and
• Allow me to retain at least two precious things I have: my rationality and my left arm and hand function, allowing me to communicate with the world in a meaningful way.

Let's see how that progresses.

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Hair!

My hair is falling out again after the latest chemo sessions. 

I comb my hair and lots of it comes out on the brush.

I've decided to let it stay on the bristles, in the hope that the time will come when I get more back on my head from the brush than ends up on the bristles!!! :)

Wednesday, 15 September 2010

Diary update first....


6.00 am: A rather restless night, but nights following chemotherapy and the extra drugs that go with that usually are accompanied by some nausea. At least it's not the throwing-up kind, just a bit of mal de mer.  It makes sleeping broken, especially when I'm drinking a lot of water to try to get the drugs that have done their job out of my system. I'll eat sometime shortly and take the meds required at this time. 2nd day chemotherapy begins at 1.00pm.


1st day on Avastin plus chemo was a challenge in the endurance stakes, starting with blood tests at 11.45 am and the whole process completed by about 4.30 pm. It's a long time to sit in a chair, and my back felt the effects when I lay down last night. Seems OK today, anyway. I'm sure you don't want an infusion by infusion description but the back of my hand is a bit sore from the long period with a cannula inserted in the vein. I hope they find a good vein today. It's the worst part of the process - finding that vein, I mean.


Eat what for breakfast?
I regard what I eat as very important, especially while it's a chemo week. It doesn't stop me from having some occasional treats; a half glass of wine, or some nice cheese on a cracker, or a wicked slice that dear Maureen Watson brings from their lovely farm at Kentucky [not USA!] but in a chemo week, fairly bland fare is safest. 
Breakfast is usually two Weetbix, no sugar, with rice milk. I drink hot water - an old Chinese trick which is good for the stomach. All morning meds are taken at this time. Six different tablets and capsules - you don't want to know... or do you? Tell me if so. Later in the morning I will probably have a piece of toast and a cup of good tea before crashing back to bed for a couple of hours.

PLEASE NOTE: I am still not totally au fait with blogging, and I don't know if I have the settings right for allowing comments, but I think you have to sign in through Google or something like that for your comments to be accepted. If you try commenting and it still doesn't work, please let me know and I'll see what I can do to get it right.

Diary Update Monday, 13 September 2010

Tomorrow is the first day of my Avastin combined with IV chemotherapy treatment. This will be administered over three days. I have had two IV chemotherapy treatments before after months of oral chemotherapy and radiotherapy combined.


These last two treatments have not been easy but are tolerable with careful management, especially of what I eat and drink, and I usually start to feel more stable ofter about 10 days from the first intravenous injection of the course. But as the effects are cumulative, the second was more difficult than the first, and the effects make more impact as the week goes on - even after the injections have stopped. So... I am far from sure of the combined effects of the third course of chemotherapy and the newly administered Avastin.


One of the difficulties with treatment of this condition is that there are so many variables, and we never know what is going to make its impact felt at any given time.

Diary Update: Sunday, 12 September 2010

I am still feeling my way with what to do in this blog, so please bear with me. I know it will take some time to get any feedback at all, but if you stumble upon this, please let me know what you want from it. For example, I know that some friends and family would find that a diary update is what they would like most, as it just gives current information on how I am going. Diary updates are always going to be in green colour font so you can pick them out. 


Others may want to share/discuss medical information or strategies. I'm very open to any suggestions.

Sunday, 12 September 2010


Feeling pretty good this morning. The doubling of steroid dose has definitely helped with comfort and mobility - until I get tired! That happens fairly quickly, sadly, but while the feeling is there, I won't waste it.    Let's see what happens as the day unfolds... a beautiful spring day in Armidale that makes me glad to be alive.

Background info you may need

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Saturday, 11 September 2010

Armidale. Australia.

Before I start writing about daily events, I should state as accurately as I can where I am at in terms of progress of the tumour and its effects, otherwise updates will be rather meaningless, and you won't be able to see how comparable my situation is to yours. I am assuming I am talking to the person with the brain tumour, but you may be a carer, family member or friend. I'll try to keep it short and direct, but if there is some detail you want, I'll try to give it to you if I can.

So, here goes.

I discovered I had this tumour on 3 December 2009 with a violent seizure of the right arm. I had a craniotomy on 17 December to remove as much of the tumour as possible from the left side of my brain in the motor function area. In January 2010 I began oral chemotherapy and radiotherapy at Peter Mac in Melbourne. This lasted until mid March 2010 when I returned to Armidale. All treatment since has been done in Armidale with MRI scans in Tamworth, about 110 km away.

The immediate ongoing effects of the tumour were further seizures of the right arm, lasting about 3-4 minutes on average. Treatment was with Dilantin and it was very difficult to find the right dosage - effectively a trial and error process. Later other anti-seizure drugs were introduced to give more stability but focal seizures still remain the most obvious and debilitating problem. The arm seizures resulted in loss of power to the arm and fingers, and the right arm at this point is very weak, prone to palsy and sometimes more a hindrance than a help.

Seizures - usually one or two a week - have indicated that containment of the tumour is not working - and an increase in inflammation of the brain is continuing. The seizures have extended into the right shoulder, right side of the neck, travelling down into the stomach then to the ankle and knee, and from there to the right thigh, causing serious mobility problems. Treatment was changed from oral chemotherapy to intravenous, to try a more aggressive way of containing the tumour and controlling brain inflammation. We believe it has had a retarding effect, but not enough to maintain quality of life, which is reducing day by day. Steroids were added 6 weeks ago to improve quality of life and they were very effective initially, but as we knew, they gradually declined over the period and are now much less effective.

So, we took the decision in discussions with the oncologist to try Avastin, and we do that in conjunction with IV chemotherapy on Tuesday. But, that's a new chapter.
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Starting near the end

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Ever since I discovered I had a brain tumour, on 3 December 2009, people have urged me to write about this experience. I resisted this for a number of reasons, but now, as the end point inevitably draws nearer, I am only starting to feel I have some grip on this subject, and can write on it in such a way that it might be meaningful for others who are finding suddenly they to come to terms with what they have and what they now are.

Each person's experience of brain cancer will be different; hence my initial reluctance to write about mine. Ironically, I am less able physically now to write than I was many months ago; what I have left to me is my rationality, and my left hand, which I can still combine to write to you via this medium. Either of these assets or both could disappear at any time, so I hope I manage to write something meaningful before that happens.

A word or two about me first: I am [or was] a writer, university historian, film-maker, and many other things in my working life. Teaching at university on Asian cultures, world religions and modern social developments such as women an child trafficking and child labour, and travelling widely through the world have given me perspectives on life and death that don't belong exclusively to one faith or philosophy. But this isn't about such matters. It's about how I am dealing with a GBM - for the uninitiated, a glioblastoma multiforme brain tumour that has become part of my life. No, I'll be honest - a form of brain cancer that dominates my entire existence.

I am now ready. Shall I go on? No point in writing this just to myself.....

Denis Wright

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