I know there has been an extraordinarily long hiatus in my posts for which you will have to accept my humble apologies. My only excuse is that my feeble, stupid body has been letting me down again and again. The many operations on my bowel are still causing me immense problems even though it's nearly a year since the last one. I have many sleepless nights and hazardous days.
Consequently I am often afflicted by a terrible tiredness which doesn't just affect me physically but leaves me mentally exhausted so that my brain seems not to function, or functions only very slowly, making everything in life a huge burden, so that sometimes I am hardly able to communicate at all never mind write blog posts, and opening emails and my Facebook and Twitter accounts are all I can manage, which is a shame as I've got this brand new MacBook Pro crying out to be put to use.
Some days are worse than others of course. My reading speed was never very fast but has got even slower, so that I'm often still reading The Observer on Wednesday. Mind you I have managed to finish this week's edition this morning, which is good. I am still reading my books but I doubt if I'm going to manage all the ones I've been planning on. There's a pile through there that I'm still hoping to complete before it's too late. I sometimes wonder if having the pile there where I can see them, a constant reminder, is bad for me. But I can't get rid of them, so will keep telling myself I'm here for a few more years. Let's hope so anyway. Maybe I should stop buying books too. But there again maybe not. Someone will read them I'm sure, if I don't get round to them.
The most difficult part of life right now is the frustration of knowing that the cancer is almost certainly growing, slowly (hopefully), in my lungs but I'm unable to take full advantage of this time, before it all catches up with me, to do some travelling or anything much at all. I'm seeing various different doctors and nurses at the hospital to try to get me sorted but so far without much success. I'm back at the hospital tomorrow for another consultation and more advice and maybe some new ideas. I sure hope so anyway.
I want to go to Stornoway soon, maybe this month and I've eight days booked in London in July. I'm still holding out hope for Peru later this year, I will not decide until after my next scan in a few weeks time, and of course only if my other problem is resolved. I also plan on visits to Stoke, Cheltenham, Manchester, Lake District, Spain, Rome and Glasgow. I should be visiting some of these places as I write, at least that was my original plan for this year, bit I'm still hanging around Morningside. What a blessing that I live in Edinburgh, and Morningside with all its many wonderful delights. Come and visit and I will show you.
As the late great Dennis Potter said as he approached the end : " I see it is the whitest, frothiest, blossomest, blossom that there ever could be, and I can see it."
Doesn't need explaining really and there's still plenty left for you to go and enjoy and be grateful. I am.
Tuesday, June 02, 2015
Friday, March 27, 2015
My New Life
I was feeling brave at my last consultation with Dr McLean. We were discussing my scan and having a good look at all the tumours on my lungs, not a lovely experience, and deciding on the best way forward. Which turns out to be a scan in four months time and meantime no treatment.
I asked her how long this could go on for and after some time she said, maybe a year. I think she meant that I could possibly go on like this for a year, but I lost my bottle and didn't ask her to clarify. I guess I was scared she meant I had a year left to live. Having thought about it some more I've decided that she wasn't saying I had a year left to go.
So lets get on with things.
I have decided to start a new life. I think I've probably started a few new lives in the past but none of them consciously or by design. I don't know how long my new life will be. Not as long as my old one, but long enough for me to get some enjoyment out of life. At least it will be once my surgeon sorts out my bowel problems.
The main thing is that I do not intend to let my cancer dominate my new life. Of course that will be difficult at times, especially when I need more treatment, but I'm hoping that is some time in the distant future.
I realise having just said that cancer will not dominate, that its easier said than done.
So I have to have a plan my life a bit more. I will aim to do something interesting or new or exciting everyday. Sometimes that will be nothing more than meeting a friend for a coffee, going for a meal, maybe a movie, hopefully a few theatre visits, many trips to Edinburgh galleries and museums, and do some travelling. I also plan to complete my family research including my father and his brothers war experiences.
I will of course continue with my blog. I hope that cancer will be less intrusive in my postings for a while at least. I plan to create an iBook. This will be mostly based on my blog postings over the past ten years. And maybe some other bits and pieces.
When I bought my MacBook Pro I paid for a years one to one training at the Apple shop in Princes Street and I'm really pleased that I did. The young folk who work here are excellent and very helpful and understanding. One of them noticed that my blog would be a year old in August 2016 and told me that we would celebrate its anniversary. I hope to be here to celebrate with him.
I'm writing this post upstairs in the Apple shop, with views of the Castle behind me and Calton Hill in front. What more could one ask for? This is a good life. Let's hope there's lots more of it to come.
I asked her how long this could go on for and after some time she said, maybe a year. I think she meant that I could possibly go on like this for a year, but I lost my bottle and didn't ask her to clarify. I guess I was scared she meant I had a year left to live. Having thought about it some more I've decided that she wasn't saying I had a year left to go.
So lets get on with things.
I have decided to start a new life. I think I've probably started a few new lives in the past but none of them consciously or by design. I don't know how long my new life will be. Not as long as my old one, but long enough for me to get some enjoyment out of life. At least it will be once my surgeon sorts out my bowel problems.
The main thing is that I do not intend to let my cancer dominate my new life. Of course that will be difficult at times, especially when I need more treatment, but I'm hoping that is some time in the distant future.
I realise having just said that cancer will not dominate, that its easier said than done.
So I have to have a plan my life a bit more. I will aim to do something interesting or new or exciting everyday. Sometimes that will be nothing more than meeting a friend for a coffee, going for a meal, maybe a movie, hopefully a few theatre visits, many trips to Edinburgh galleries and museums, and do some travelling. I also plan to complete my family research including my father and his brothers war experiences.
I will of course continue with my blog. I hope that cancer will be less intrusive in my postings for a while at least. I plan to create an iBook. This will be mostly based on my blog postings over the past ten years. And maybe some other bits and pieces.
When I bought my MacBook Pro I paid for a years one to one training at the Apple shop in Princes Street and I'm really pleased that I did. The young folk who work here are excellent and very helpful and understanding. One of them noticed that my blog would be a year old in August 2016 and told me that we would celebrate its anniversary. I hope to be here to celebrate with him.
I'm writing this post upstairs in the Apple shop, with views of the Castle behind me and Calton Hill in front. What more could one ask for? This is a good life. Let's hope there's lots more of it to come.
Sunday, March 15, 2015
Sequamur
Last week I went to see a Gaelic play called Sequamur which was on here in Edinburgh at the venue called Summerhall, formerly affectionately know as the Dick Vet.
Sequamur is the motto of my old school The Nicolson Institute in Stornoway, where I spent six, mostly happy years, except for the odd moment or two which were not exactly happy. But that's for another time.
Sequamur means Let us follow, though after seeing the play, in many ways, let us not, as the author Donald S Murray, from Ness, also a former pupil, says.
The play was written for the centenary of the First World War as it affected the people of Lewis and especially the pupils of the Nicolson Institute and their headmaster (rector) William Gibson. Those of you who went to the Nicolson Institute, and there are one or two of you reading this, will remember that in the old Francis Street building there was a brass memorial plaque on the upstairs landing commemorating all the school pupils killed in the First World War.
The author was inspired by memories of that plaque and by reading an account of the speech made by William Gibson when he unveiled the plaque and spoke about his former pupils and their sacrifice, wondering if it had been worthwhile. They obviously held him in the highest regard and many of them went on to write to him from the trenches of Europe or from Gallipoli, where so many of them fought and died. Those letters and the speech are now held by Museum nan Eilean in Stornoway amongst all Gibson's papers. Extracts from some of the letters are printed in the programme for the play and were used by Donald in his background research.
I found the experience very moving and emotional and I'm so glad that I was well enough to go. The play ended with the roll of honour for the Newington area of Edinburgh scrolling up on the screen behind the actors, to the sound of the bagpipes playing the last post, which I thought was coming through the speakers, until I saw the piper march through the theatre and stand in front of the stage as the roll scrolled on. Fair took my breath away, as they say. And couldn't help but think about my father and his brother, and their war history and then I remembered my own mortality and had to work hard not to embarrass myself with my tears.
I spoke to the author afterwards in the cafe and told him how much I appreciated his play. He had been to Gillespie School the day before to do a workshop for the students there studying Gaelic and I was very impressed to see so many students watching the play. Well done all concerned for a superb production.
Sequamur is the motto of my old school The Nicolson Institute in Stornoway, where I spent six, mostly happy years, except for the odd moment or two which were not exactly happy. But that's for another time.
Sequamur means Let us follow, though after seeing the play, in many ways, let us not, as the author Donald S Murray, from Ness, also a former pupil, says.
The play was written for the centenary of the First World War as it affected the people of Lewis and especially the pupils of the Nicolson Institute and their headmaster (rector) William Gibson. Those of you who went to the Nicolson Institute, and there are one or two of you reading this, will remember that in the old Francis Street building there was a brass memorial plaque on the upstairs landing commemorating all the school pupils killed in the First World War.
The author was inspired by memories of that plaque and by reading an account of the speech made by William Gibson when he unveiled the plaque and spoke about his former pupils and their sacrifice, wondering if it had been worthwhile. They obviously held him in the highest regard and many of them went on to write to him from the trenches of Europe or from Gallipoli, where so many of them fought and died. Those letters and the speech are now held by Museum nan Eilean in Stornoway amongst all Gibson's papers. Extracts from some of the letters are printed in the programme for the play and were used by Donald in his background research.
I found the experience very moving and emotional and I'm so glad that I was well enough to go. The play ended with the roll of honour for the Newington area of Edinburgh scrolling up on the screen behind the actors, to the sound of the bagpipes playing the last post, which I thought was coming through the speakers, until I saw the piper march through the theatre and stand in front of the stage as the roll scrolled on. Fair took my breath away, as they say. And couldn't help but think about my father and his brother, and their war history and then I remembered my own mortality and had to work hard not to embarrass myself with my tears.
I spoke to the author afterwards in the cafe and told him how much I appreciated his play. He had been to Gillespie School the day before to do a workshop for the students there studying Gaelic and I was very impressed to see so many students watching the play. Well done all concerned for a superb production.
Monday, March 09, 2015
A Bit of a Result
Today I got some reasonably good news from oncology, which is a first for them.
Dr MacLean tells me that the cancer has not spread to any other organs and there are no new tumours on my lungs, which is all good news. However the tumours that are there have all grown in volume since the last scan in November, but the growth is small, none of them having doubled in size. The largest is now just over 8 mm across and the smallest just about 5 mm. I think there are seven or eight of the little devils.
I had hoped for a no change situation, but I guess this is next best thing. At least it's not aggressive so that's a bit of a result.
Dr MacLean is happy with the result and thinks I might go on like this for some months and maybe even longer. But no way of telling. I don't require treatment for the time being, so no chemo for a while. I will return for a scan in four months to see how things are progressing, slowly I hope, and maybe even six months should I decide to do some travelling. This will depend on progress sorting out my residual bowel problems and me getting fitter, which is partly dependent on me getting some complete nights of sleep, bowels permitting.
But enough of that for now. I feel happier than I have for a while, at least as happy as it's possible to be with incurable cancer. So onwards and upwards.
This will be short tonight as I'm awaiting the arrival of my pal John B to watch the big game with me and I've a few calls to make before that.
"The sky seemed to split apart from end to end to pour its fire down upon me."
Meursault just before he pulled the trigger, as reported by A. Camus.
Sometimes I feel the same.
Dr MacLean tells me that the cancer has not spread to any other organs and there are no new tumours on my lungs, which is all good news. However the tumours that are there have all grown in volume since the last scan in November, but the growth is small, none of them having doubled in size. The largest is now just over 8 mm across and the smallest just about 5 mm. I think there are seven or eight of the little devils.
I had hoped for a no change situation, but I guess this is next best thing. At least it's not aggressive so that's a bit of a result.
Dr MacLean is happy with the result and thinks I might go on like this for some months and maybe even longer. But no way of telling. I don't require treatment for the time being, so no chemo for a while. I will return for a scan in four months to see how things are progressing, slowly I hope, and maybe even six months should I decide to do some travelling. This will depend on progress sorting out my residual bowel problems and me getting fitter, which is partly dependent on me getting some complete nights of sleep, bowels permitting.
But enough of that for now. I feel happier than I have for a while, at least as happy as it's possible to be with incurable cancer. So onwards and upwards.
This will be short tonight as I'm awaiting the arrival of my pal John B to watch the big game with me and I've a few calls to make before that.
"The sky seemed to split apart from end to end to pour its fire down upon me."
Meursault just before he pulled the trigger, as reported by A. Camus.
Sometimes I feel the same.
Sunday, March 08, 2015
Another Appointment
This is the time of year my late mother liked best, as the days get longer, the dark nights drift away and spring approaches. I like it too, more and more as the years go by. I have to make the most of these little moments of bliss as there may not be too many more left for me. Mind you I'm still hoping for a few more. I wouldn't like you to think I've given up on the future, short or long as it may be.
I should know more tomorrow about what the future holds for me as it's time for my appointment with my oncologist, Dr Maclean, again. She will be giving me the results of my latest scan which I had ten days ago. The best I can hope for is that the tumours on my lungs have not grown since my last scan in November, or are developing very slowly and that no treatment is required. The alternative outcomes are too grim for me to describe on here. I feel if I write it I might be tempting fate, so best not to. Not that I believe in fate, sounds too Calvinistic.
It's a strange feeling knowing that as I sit here and await the news my doctors already know and have probably discussed my prognosis. It doesn't seem right somehow.
I'm not going to write much more today. I know I've been very lazy recently when it comes to writing, but my excuse is my ill health. I miss a lot of appointments and arrangements with friends because I can't leave my flat and I certainly am not able to concentrate on writing. Even reading gets difficult. Sometimes I'm still reading the Saturday Guardian and the Observer on a Wednesday or Thursday. Mind you it does save money as I don't need to buy a paper during the week.
Having said that I'm still working my way through various books, the latest one I finished was called A book of death and fish by a Lewis writer called Ian Stephen. A bit of a challenge as its well over 500 pages, but well worth the effort. Maybe best suited for folk who love the Island but don't let that put you off. It's highly recommended in a review by Robert Macfarlane whose new book Landmarks I bought for myself today. I hope to get the time to read it and maybe get to meet Robert if he comes to this years book festival. Maybe my friend John L and I will go again and this time get to the front of the queue to speak to him.
I hope someone among you will be reading and recommending Robert Macfarlane long after I'm no longer here. " he has a poet's eye and a prose style that would make many a novelist burn with envy" or so says John Banville, whose judgement I think we can all trust.
I've bought myself a MacBook Pro and still getting used to it. I really like it and hope to post lots and lots to my blog now that I've spent all that money . Mind you it's not as if I can't afford it as my plans for trips to South America begin to look less likely.
Tomorrow I might find out.
I should know more tomorrow about what the future holds for me as it's time for my appointment with my oncologist, Dr Maclean, again. She will be giving me the results of my latest scan which I had ten days ago. The best I can hope for is that the tumours on my lungs have not grown since my last scan in November, or are developing very slowly and that no treatment is required. The alternative outcomes are too grim for me to describe on here. I feel if I write it I might be tempting fate, so best not to. Not that I believe in fate, sounds too Calvinistic.
It's a strange feeling knowing that as I sit here and await the news my doctors already know and have probably discussed my prognosis. It doesn't seem right somehow.
I'm not going to write much more today. I know I've been very lazy recently when it comes to writing, but my excuse is my ill health. I miss a lot of appointments and arrangements with friends because I can't leave my flat and I certainly am not able to concentrate on writing. Even reading gets difficult. Sometimes I'm still reading the Saturday Guardian and the Observer on a Wednesday or Thursday. Mind you it does save money as I don't need to buy a paper during the week.
Having said that I'm still working my way through various books, the latest one I finished was called A book of death and fish by a Lewis writer called Ian Stephen. A bit of a challenge as its well over 500 pages, but well worth the effort. Maybe best suited for folk who love the Island but don't let that put you off. It's highly recommended in a review by Robert Macfarlane whose new book Landmarks I bought for myself today. I hope to get the time to read it and maybe get to meet Robert if he comes to this years book festival. Maybe my friend John L and I will go again and this time get to the front of the queue to speak to him.
I hope someone among you will be reading and recommending Robert Macfarlane long after I'm no longer here. " he has a poet's eye and a prose style that would make many a novelist burn with envy" or so says John Banville, whose judgement I think we can all trust.
I've bought myself a MacBook Pro and still getting used to it. I really like it and hope to post lots and lots to my blog now that I've spent all that money . Mind you it's not as if I can't afford it as my plans for trips to South America begin to look less likely.
Tomorrow I might find out.
Wednesday, January 28, 2015
Cells
Sometimes as I sit here contemplating my fate and other things such as consciousness and spirituality, I can't help but think how different things might have been.
It's quite possible, indeed almost certain, that as my surgeon, Mr Speake was busily removing my tumour, some infected cells had already made their escape and were lying dormant in my lungs waiting for their moment to start their terminal duty.
And there they lay, hiding, inactive, invisible to the most sophisticated scanner in Edinburgh, dodging gallons of chemo drugs sent into my body to seek them out. Knowing that as long as they remained quietly, cruelly, carefully inactive, hiding in some corner of my lungs, the chemo drugs would not find them. This they managed to do over a period of six months when I put up with all the miseries that chemo brought into my life, expecting to emerge at the end clear of cancer.
Of course the little bastards had other plans. It's as if they were waiting for their moment in the sun and knew when the chemo drugs had left my body, so out they came dancing round my lungs and multiplying at a furious rate, so much so, that the radiographer can only tell us that they are there in multiples. I don't think anyone has counted them. Just too many for them to bother, as they know there are enough of them to kill me.
I keep telling myself if only I'd gone to my doctor six months earlier they would not have had time to infect my lymph nodes and blood vessels and would never have found their nasty way round to my lungs. But I try not to dwell on that too much. I can't blame myself for how my life is ending. I can only hope for a little more time to annoy you all with my witterings. Is there such a word? And sorry there have not been many for past few weeks, but I will try to do better.
I will know more on the 9th of March when I see my oncologist again and she has the results of my next scan which should be sometime towards the end of February.
That's all for now. It's snowing here in Edinburgh, but I'm hoping to make my way down to the National Gallery to see the Turner watercolours, before they are put away for another year. I missed them last year, due to chemo diversions and this year may be my last chance to see them, so I think I should brave the snow and get on with it. Bye folks, more soon, maybe on films or something. Tonight is Wolff Hall night.
It's quite possible, indeed almost certain, that as my surgeon, Mr Speake was busily removing my tumour, some infected cells had already made their escape and were lying dormant in my lungs waiting for their moment to start their terminal duty.
And there they lay, hiding, inactive, invisible to the most sophisticated scanner in Edinburgh, dodging gallons of chemo drugs sent into my body to seek them out. Knowing that as long as they remained quietly, cruelly, carefully inactive, hiding in some corner of my lungs, the chemo drugs would not find them. This they managed to do over a period of six months when I put up with all the miseries that chemo brought into my life, expecting to emerge at the end clear of cancer.
Of course the little bastards had other plans. It's as if they were waiting for their moment in the sun and knew when the chemo drugs had left my body, so out they came dancing round my lungs and multiplying at a furious rate, so much so, that the radiographer can only tell us that they are there in multiples. I don't think anyone has counted them. Just too many for them to bother, as they know there are enough of them to kill me.
I keep telling myself if only I'd gone to my doctor six months earlier they would not have had time to infect my lymph nodes and blood vessels and would never have found their nasty way round to my lungs. But I try not to dwell on that too much. I can't blame myself for how my life is ending. I can only hope for a little more time to annoy you all with my witterings. Is there such a word? And sorry there have not been many for past few weeks, but I will try to do better.
I will know more on the 9th of March when I see my oncologist again and she has the results of my next scan which should be sometime towards the end of February.
That's all for now. It's snowing here in Edinburgh, but I'm hoping to make my way down to the National Gallery to see the Turner watercolours, before they are put away for another year. I missed them last year, due to chemo diversions and this year may be my last chance to see them, so I think I should brave the snow and get on with it. Bye folks, more soon, maybe on films or something. Tonight is Wolff Hall night.
Tuesday, January 13, 2015
Happy New Year (belatedly)
Nobody said it would be easy, but I didn't realise it would be this hard (as the man didn't quite say). I haven't written anything since Xmas day so I guess it must be time I put pen to paper, or at least hand to keyboard.
It's two months ago today I was told that I had metastases on both lungs, and I'm still adjusting to the news. I can sometimes forget about the cancer for an hour or two, if I'm watching a good movie or chatting to good friends or sleeping, but mostly it hangs over me, like the worst enemy imaginable, always nagging and reminding me it's still there waiting for me, knowing only too well that some day it will get me.
I'm walking down the street minding my own business, living my life, quietly nowadays, when the voice comes in to remind me I've got cancer and I know nothing will ever be the same, and I wonder why all these blameless people I see around me don't realise what my life has become. How can they behave as if nothing has changed when I'm feeling so bad?
I read the paper and a young woman of 35 has died of colorectal cancer, leaving behind twin boys five years of age and I know her situation was much more difficult than mine. Then I read that the NHS is cutting funds for some cancer treatments as we can't afford the cost of some new drugs which may prove useful. Where's the justice in that?
I discovered from a BBC radio programme about a new type of radiotherapy called stereotactic ablative radiotherapy which, according to the programme has proved effective in the treatment of some cancers, as it can be more accurately and effectively targeted, and especially effective in secondary bowel cancer on the lung. In some cases 100% effective. So I asked my oncologist about it and she agreed to see me yesterday to talk about it.
NHS in England has told it's hospitals to stop using it. It is more expensive in the short term but less expensive long term as patients require only 4 or 5 treatments as compared to 20 using normal treatment. It was provided in Scotland by the Beatson in Glasgow, but they no longer use it, for some reason which I've yet to fathom. My oncologist insists it was a clinically based decision. There are still a few hospitals in England using it as they were able to make a clinically based case for it. Scottish patients would need to be referred for it by the oncologist and the authority would have to agree the funding.
My oncologist will not refer me or recommend me for it. This is because I have too many lesions (tumours), multiple small ones, though exact number is unknown. She says there are 6 or 7, but no one seems to have counted. There are too many lesions for surgery to be safe, and they use the same criteria for stereotactic therapy decisions. So I have too many for surgery and/or radiotherapy and if I had only a few they would operate, as this is most effective treatment. Which seems to suggest there are no situations where stereotactic therapy would be appropriate. Heads I lose and tails too.
If this is confusing for you, don't blame me. Imagine how it feels for me. What a bugger!!!! to say the least.
A Happy New Year to you all, and thank you for your cards and messages and visits. I plan to see more of you all this year. Tomorrow I'm back at the hospital to see my surgeon Mr Speake.
It's two months ago today I was told that I had metastases on both lungs, and I'm still adjusting to the news. I can sometimes forget about the cancer for an hour or two, if I'm watching a good movie or chatting to good friends or sleeping, but mostly it hangs over me, like the worst enemy imaginable, always nagging and reminding me it's still there waiting for me, knowing only too well that some day it will get me.
I'm walking down the street minding my own business, living my life, quietly nowadays, when the voice comes in to remind me I've got cancer and I know nothing will ever be the same, and I wonder why all these blameless people I see around me don't realise what my life has become. How can they behave as if nothing has changed when I'm feeling so bad?
I read the paper and a young woman of 35 has died of colorectal cancer, leaving behind twin boys five years of age and I know her situation was much more difficult than mine. Then I read that the NHS is cutting funds for some cancer treatments as we can't afford the cost of some new drugs which may prove useful. Where's the justice in that?
I discovered from a BBC radio programme about a new type of radiotherapy called stereotactic ablative radiotherapy which, according to the programme has proved effective in the treatment of some cancers, as it can be more accurately and effectively targeted, and especially effective in secondary bowel cancer on the lung. In some cases 100% effective. So I asked my oncologist about it and she agreed to see me yesterday to talk about it.
NHS in England has told it's hospitals to stop using it. It is more expensive in the short term but less expensive long term as patients require only 4 or 5 treatments as compared to 20 using normal treatment. It was provided in Scotland by the Beatson in Glasgow, but they no longer use it, for some reason which I've yet to fathom. My oncologist insists it was a clinically based decision. There are still a few hospitals in England using it as they were able to make a clinically based case for it. Scottish patients would need to be referred for it by the oncologist and the authority would have to agree the funding.
My oncologist will not refer me or recommend me for it. This is because I have too many lesions (tumours), multiple small ones, though exact number is unknown. She says there are 6 or 7, but no one seems to have counted. There are too many lesions for surgery to be safe, and they use the same criteria for stereotactic therapy decisions. So I have too many for surgery and/or radiotherapy and if I had only a few they would operate, as this is most effective treatment. Which seems to suggest there are no situations where stereotactic therapy would be appropriate. Heads I lose and tails too.
If this is confusing for you, don't blame me. Imagine how it feels for me. What a bugger!!!! to say the least.
A Happy New Year to you all, and thank you for your cards and messages and visits. I plan to see more of you all this year. Tomorrow I'm back at the hospital to see my surgeon Mr Speake.
Thursday, December 25, 2014
Merry Xmas 2014
Happy Xmas to you all out there and thank you for keeping on reading my blog.
Another Christmas day upon us and I can't help but wonder how many more I have ahead of me. Let's hope lots but also be prepared for a different outcome. Today I'm feeling positive and looking forward to a bit of travelling in 2015, even if only in the UK.
Last night I had dinner with Neil and his family and got to spend some time with Keith who is home from Kentucky with Trish, who had a slight accident just before they were due to fly out. However no harm done and all well. It was great to see you Keith and I was pleased that you still remember my friend Iain McDonald and his songs, especially Santiago, which is a favourite of mine too. I'm not sure if Iain still sings it as he has so many new songs to sing, but I'm hoping to hear him next year and will ask him to do it one more time.
That you remember Blair Peach gives me much satisfaction and I'm pleased to know that he will continue to remembered by someone in my family. I don't think I still have that "Who killed Blair Peach poster?" It was seen by many people in my flat and became a bit torn in the end, but I will have a good look for it before I see you on Sunday. Anybody who doesn't know who Blair was I recommend that you read about him as he was an inspiration to many, and continues to be for some at least.
Thank you to all those who have sent me cards and messages and all those of you who have been to see me or are planning to do so. Don't worry I plan to be around for a long time to come so will be seeing lots more of you if we haven't managed to meet up to now.
I don't like to single out any cards or messages but there is one card |I received which was both a surprise and a pleasure. It was from someone called Rosemary and I hope you don't mind me mentioning you on here. Rosemary says on her card that we only met once at a class in Riddles Court, (a beautiful building incidentally), in the autumn of 2013, where we spoke and I passed on my blog details. I was unable to continue with the class because of the chemo and radiotherapy. Rosemary says she has been reading and following my blog ever since and decided to send me a Xmas card and to wish we all the best with things. So thank you Rosemary and everyone else who's sent me a card or a message.
I'm off now for Xmas dinner with my niece Anna and all her family, i.e. my brother Coinneach and the rest.
Another Christmas day upon us and I can't help but wonder how many more I have ahead of me. Let's hope lots but also be prepared for a different outcome. Today I'm feeling positive and looking forward to a bit of travelling in 2015, even if only in the UK.
Last night I had dinner with Neil and his family and got to spend some time with Keith who is home from Kentucky with Trish, who had a slight accident just before they were due to fly out. However no harm done and all well. It was great to see you Keith and I was pleased that you still remember my friend Iain McDonald and his songs, especially Santiago, which is a favourite of mine too. I'm not sure if Iain still sings it as he has so many new songs to sing, but I'm hoping to hear him next year and will ask him to do it one more time.
That you remember Blair Peach gives me much satisfaction and I'm pleased to know that he will continue to remembered by someone in my family. I don't think I still have that "Who killed Blair Peach poster?" It was seen by many people in my flat and became a bit torn in the end, but I will have a good look for it before I see you on Sunday. Anybody who doesn't know who Blair was I recommend that you read about him as he was an inspiration to many, and continues to be for some at least.
Thank you to all those who have sent me cards and messages and all those of you who have been to see me or are planning to do so. Don't worry I plan to be around for a long time to come so will be seeing lots more of you if we haven't managed to meet up to now.
I don't like to single out any cards or messages but there is one card |I received which was both a surprise and a pleasure. It was from someone called Rosemary and I hope you don't mind me mentioning you on here. Rosemary says on her card that we only met once at a class in Riddles Court, (a beautiful building incidentally), in the autumn of 2013, where we spoke and I passed on my blog details. I was unable to continue with the class because of the chemo and radiotherapy. Rosemary says she has been reading and following my blog ever since and decided to send me a Xmas card and to wish we all the best with things. So thank you Rosemary and everyone else who's sent me a card or a message.
I'm off now for Xmas dinner with my niece Anna and all her family, i.e. my brother Coinneach and the rest.
Thursday, December 18, 2014
Emer Harkin
BI've not written anything on here for a while, as you may have noticed, as I've been struggling to adjust to my new situation with the cancer having taken off up to my lungs. I think I'm getting to some kind of settlement with myself and can see a kind of future however long or brief that may be.
But I don't want to talk about that today but instead tell you about my friend Emer Harkin. I won't tell you how long Emer and I have been friends, but it's been quite a while and she has always been there for me, even when I've been a very stupid boy indeed. Emer is also one of my cinema going friends, when her work shifts permit. We have seen many movies together and not a few concerts. I particularly remember a Waterboys concert and a Sinead one, not to forget many times to see my friend Iain McDonald singing and playing his guitar. And Christy Moore of course and Jools when he was still in the band whose name escapes me, but you will know who I mean.
Needless to say Emer has been a constant support over the past eighteen months. A few weeks ago she told me she was planning to do a Marcathon, which involves running three miles or 25 minutes every day for a month and asked me to choose which charity she should be supporting. It was not difficult for me to choose Maggie's Centre, Edinburgh which has provided me with much care and support since my cancer diagnoses last year and continues to do so. In fact I'm just back from our Christmas party. Sober.
There are of course many other cancer charities which are worthy of support but Maggie's is the one that has meant so much to me, where I have made many new friends and worked with some superb support workers and volunteers. I have done writing classes, relaxation classes, meditation classes and go to a weekly support group there. And much else besides. I did bookbinding there last week and have produced a little booklet which I plan to give to a very special person in my life. I could go on about all the brilliant things that Maggie's Centres do all over the country but all I want to say is that it's helped me maintain my sanity in the most difficult of times.
So to get back to Emer and her efforts on behalf of Maggie's, she is now half way through her fundraiser and has raised over £700 and I'm hoping she will be well over the thousand mark by the time she finishes. I can't praise you highly enough Emer, you are one of the best if not the blessed.
I'm asking everyone who reads my blog to support Emer and Maggie's by making a donation however small, as I know this is an expensive time of year, but I'm sure a little bit can go towards this good cause. Remember that Emer has to go out every day, whatever the weather, including Xmas and Boxing days and do her bit. She will of course be super fit after all this running so we can get her to do more sponsored runs next year. Don't you think Emer?
Here is the link to her Virgin Money Giving page and if you do decide to support her maybe you could mention that you found out from my blog so that Emer knows where her support is coming from. Thank you all in advance. If link doesn't work go direct to Virgin Money Giving and enter her name.
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=EmerHarkin&faId=521928&isTeam=false
Saturday, November 29, 2014
Oncology report
I saw my oncologist, Dr McLean, on Thursday. Coinneach came with me. She confirmed that a cure is no longer possible and that any treatment will be palliative, which was just a tad devastating, even though I knew it already. I hoped that something might turn up, so to speak, but no such luck.
She showed us my lungs on her screen and pointed out some of the infected dell clusters. There are a lot of them, though nobody seems to have been counting. The radiologist report talks about multiple nodules, so I don't suppose an exact count is going to change anything. The biggest cluster was 7 mm in diameter and the smallest was 2 mm. She expects these to grow and eventually be the end of me.
As she has nothing to compare them with, there having been no sign of cancer in my last scan in November 2013, she has decided to hold off on treatment for three months then do another CT scan towards the end of February so she can measure the progress. I will see her in March to decide whether treatment would be appropriate then, or to wait a bit longer to see how it develops. More waiting. More patience required. Not my finest attribute.
It's very strange seeing my lungs on screen like that, and watching her zoom in and out and picking things out, and casually measuring them. I couldn't get my head round the idea that what was on the screen was also inside my chest, and slowly killing me. Or maybe it won't.
Dr Mclean was her usual impressive self. Different to Mr Speake in many ways but makes me feel confident in her decisions. Coinneach was impressed with them both, though surprised at Mr Speake's youthfulness.
I will stop now and pop out for a little latte. I've been to see The Imitation Game this week. Excellent movie. Four star at least and Cumberbatch is worthy of an oscar. Defintitely worth a few hours of your time. I don't know if I mentioned Mr Turner in previous posts. Also an excellent movie and another oscar performance from Timothy Spall. Hard to choose between the two but maybe Cumberbatch by a nose.
Saturday, November 22, 2014
Hotter new shoes and Mr Speake (no connection)
For the past eighteen months that I've been living with cancer I always thought I would survive it and come out the other end of treatment cancer free. The operations and treatment have been incredibly hard to live with but were tolerated with good grace in order to be cancer free. Now things have changed utterly, though no terrible beauty is born, and it looks as if I'm not going to survive it after all. Though one never knows and hope must remain, even if vanishingly small.
The only way I can describe the way I feel is that there's a deep sadness, an incredible loss and much confusion. Loss of my life, loss of love, loss of friendships. Not knowing how it all turns out for the world and all the things that mean so much to me. It doesn't look as if I'm going to see the revolution, but I thought we might have got closer than this. So come on folks get a grip and get on with it.
I don't feel anger or despair or depression, though it does hover about somewhere and I know I must do my best to fight it off. I have no intention of spending the rest of my days being depressed and sorry. Having said that it's still a constant struggle and I have to argue with myself constantly to keep going and to live for the future, however brief it may be. Concentration is frequently a problem and persuading myself that something is still worth doing even if it might be for the last time.
I took a wander down Princes Street yesterday and after visiting the Apple shop and not buying myself a MacBook Air or Pro ( which should I buy) I decided to buy a new pair of shoes from Hotter, who make very nice lightweight shoes, ideal for me. I'm sitting there being served and waiting for the guy to come back with my size and it's impossible not to think what's the point and then having persuaded myself that there was a point, a voice began to tell me that this could be the last pair of shoes I will ever buy. Terrible. So one has to pull oneself together and just pretend nothing has changed.
Sorry if I repeat myself in these posts but my memory plays tricks on me too.
Coinneach and I met Mr Speake, my consultant and main man on Wednesday. The team have reviewed my case and all agree with his diagnosis. Surgery of any sort is not possible or likely to be worthwhile. I will now see the consultant oncologist next Thursday to discuss possible treatment and prognosis. Sometimes I think I would like to know how long I've got and other times I wonder if that would be of any help. If she tells me I've got six months for example, is that good or bad? Would I be better not to know? I will play it by ear once I'm with her. I've definitely decided I want to see my scan on her PC, as I want to know for myself what my lungs looks like now, and how far the cancer has got, and just see for myself this thing that wants to take my life.
Mr Speake spent nearly an hour with us and would have spent more if I hadn't made a move. I asked him about travelling long distance to Peru. He knew my desire to return there and had told me before that I would be able to return. Given my new circumstances he now advises me against long haul flights, on medical grounds, but says he would understand on a personal level if I decided to ignore his advice. I won't make a decision for a week or two, but Peru now looks unlikely. Which causes me more sadness, more loss.
Mr Speake has promised me that he will take his son Isaac to Peru some day, and go with him to Cusco and Machu Picchu, and he will think of me when they get there. I know that he will do that for me.
I want to thank you Mr Speake for all that you have done for me, for looking after me so well, for successfully removing my tumour from a very difficult location, and for making me cancer free in my colon. We were not to know that it would travel from my bowel and settle in my lungs. I feel that you have become my friend now and not just a surgeon treating me. I was very lucky indeed to have you as my consultant. I think that was just meant to be. Someone was looking out for me when they put me on your list of patients. So thanks again and you will love Peru for sure.
The only way I can describe the way I feel is that there's a deep sadness, an incredible loss and much confusion. Loss of my life, loss of love, loss of friendships. Not knowing how it all turns out for the world and all the things that mean so much to me. It doesn't look as if I'm going to see the revolution, but I thought we might have got closer than this. So come on folks get a grip and get on with it.
I don't feel anger or despair or depression, though it does hover about somewhere and I know I must do my best to fight it off. I have no intention of spending the rest of my days being depressed and sorry. Having said that it's still a constant struggle and I have to argue with myself constantly to keep going and to live for the future, however brief it may be. Concentration is frequently a problem and persuading myself that something is still worth doing even if it might be for the last time.
I took a wander down Princes Street yesterday and after visiting the Apple shop and not buying myself a MacBook Air or Pro ( which should I buy) I decided to buy a new pair of shoes from Hotter, who make very nice lightweight shoes, ideal for me. I'm sitting there being served and waiting for the guy to come back with my size and it's impossible not to think what's the point and then having persuaded myself that there was a point, a voice began to tell me that this could be the last pair of shoes I will ever buy. Terrible. So one has to pull oneself together and just pretend nothing has changed.
Sorry if I repeat myself in these posts but my memory plays tricks on me too.
Coinneach and I met Mr Speake, my consultant and main man on Wednesday. The team have reviewed my case and all agree with his diagnosis. Surgery of any sort is not possible or likely to be worthwhile. I will now see the consultant oncologist next Thursday to discuss possible treatment and prognosis. Sometimes I think I would like to know how long I've got and other times I wonder if that would be of any help. If she tells me I've got six months for example, is that good or bad? Would I be better not to know? I will play it by ear once I'm with her. I've definitely decided I want to see my scan on her PC, as I want to know for myself what my lungs looks like now, and how far the cancer has got, and just see for myself this thing that wants to take my life.
Mr Speake spent nearly an hour with us and would have spent more if I hadn't made a move. I asked him about travelling long distance to Peru. He knew my desire to return there and had told me before that I would be able to return. Given my new circumstances he now advises me against long haul flights, on medical grounds, but says he would understand on a personal level if I decided to ignore his advice. I won't make a decision for a week or two, but Peru now looks unlikely. Which causes me more sadness, more loss.
Mr Speake has promised me that he will take his son Isaac to Peru some day, and go with him to Cusco and Machu Picchu, and he will think of me when they get there. I know that he will do that for me.
I want to thank you Mr Speake for all that you have done for me, for looking after me so well, for successfully removing my tumour from a very difficult location, and for making me cancer free in my colon. We were not to know that it would travel from my bowel and settle in my lungs. I feel that you have become my friend now and not just a surgeon treating me. I was very lucky indeed to have you as my consultant. I think that was just meant to be. Someone was looking out for me when they put me on your list of patients. So thanks again and you will love Peru for sure.
Thursday, November 20, 2014
Tuesday, November 18, 2014
My Friend Miller
I have had many messages of support and good wishes from people here at home and from around the world. Thank you all. They all mean so much to me and it's good to know there are so many of you thinking of me. It gives me strength. Some of you have moved me to tears of joy and appreciation. All of them are special to me and the fact that I'm about to devote the rest of this post to one of these messages is no reflection on the rest of you.
My friend Miller, from Peru, has given me his permission to use his message on here. He writes mostly in English, any mistakes are my fault as I taught him, well just a little. His English is excellent. This is what he wrote:
"Amigo I just read your blog. You don't know how much I sorry, I could not believe what I was reading. Amigo I would like to be there in this moment just giving you a lot of hug and not separating from you anymore, you know I feel bad, really bad. You have been to me like a father, like a father that I never had, I learned so much from you, thank you for being part of my life. Thank to you I learned to listen to Bob Dylan and The Beatles. Of course you have been a good influence on my life. And I can say, no doubt, I am here on this ship thanks to you amigo. I showed you all I have, my family, my humble room, where couldn't fit more than two people, you met my disrespectful brother in law, which wasn't in my plan.
Sabes amigo quisiera ir a visit you.... pero no se como llegar, but no problema like you told me "be a man" "grow up" I will never forget your words. I will debark in three weeks, the only detail I don't know where the British embassy is located in Lima, but I will figure it out. Amigo I will tell you something that you don't like to hear from me, but I have to, God bless you. Te extrano un monton amigo. Espero escuchar pronto de ti."
I replied to him and he sent the following message:
" Wow, your words went directly and deeply into my heart. No I wouldn't mind if you put those words in your blog. Would be a pleasure my dear friend. I'll let you know when I debark. I have many things to do when I get back...............I need to visit my grandmother.... save some money for my future, time flies!! I need to study I don't have any support of them, so I have to work so hard.
I hope to see you back in Peru one day. You can do it mi amigo. You learned Spanish from the selva, from Pucallpa, where I was born. By the way how's your Spanish? Estas practicando? Quiero hablarte siempre en espanol, no mas ingles. Te amo amigo, te amo como a un padre, eso es todo lo que puedo decir.
I want to see you soon in Cusco and introduce you to my enamorado that which you always wanted from me seeing me with a girlfriend. and show you my apartment. I hope that my dreams come true, to see you again one day in Cusco. Finally I got a girlfriend, she is beautiful, cute, gorgeous, es muy bonito y la amo mucho. Her name is Kelly. I am sure you would be happy if you saw us together."
Thank you Miller for your kind words and for helping to make Cusco such a special place for me. I will never forget you. I hope to meet Kelly some day. Getting back to Peru to see you and Cusco and all my Peruvian friends is top of my list of things to do. Cuidate amigo.... hasta luego....
My friend Miller, from Peru, has given me his permission to use his message on here. He writes mostly in English, any mistakes are my fault as I taught him, well just a little. His English is excellent. This is what he wrote:
"Amigo I just read your blog. You don't know how much I sorry, I could not believe what I was reading. Amigo I would like to be there in this moment just giving you a lot of hug and not separating from you anymore, you know I feel bad, really bad. You have been to me like a father, like a father that I never had, I learned so much from you, thank you for being part of my life. Thank to you I learned to listen to Bob Dylan and The Beatles. Of course you have been a good influence on my life. And I can say, no doubt, I am here on this ship thanks to you amigo. I showed you all I have, my family, my humble room, where couldn't fit more than two people, you met my disrespectful brother in law, which wasn't in my plan.
Sabes amigo quisiera ir a visit you.... pero no se como llegar, but no problema like you told me "be a man" "grow up" I will never forget your words. I will debark in three weeks, the only detail I don't know where the British embassy is located in Lima, but I will figure it out. Amigo I will tell you something that you don't like to hear from me, but I have to, God bless you. Te extrano un monton amigo. Espero escuchar pronto de ti."
I replied to him and he sent the following message:
" Wow, your words went directly and deeply into my heart. No I wouldn't mind if you put those words in your blog. Would be a pleasure my dear friend. I'll let you know when I debark. I have many things to do when I get back...............I need to visit my grandmother.... save some money for my future, time flies!! I need to study I don't have any support of them, so I have to work so hard.
I hope to see you back in Peru one day. You can do it mi amigo. You learned Spanish from the selva, from Pucallpa, where I was born. By the way how's your Spanish? Estas practicando? Quiero hablarte siempre en espanol, no mas ingles. Te amo amigo, te amo como a un padre, eso es todo lo que puedo decir.
I want to see you soon in Cusco and introduce you to my enamorado that which you always wanted from me seeing me with a girlfriend. and show you my apartment. I hope that my dreams come true, to see you again one day in Cusco. Finally I got a girlfriend, she is beautiful, cute, gorgeous, es muy bonito y la amo mucho. Her name is Kelly. I am sure you would be happy if you saw us together."
Thank you Miller for your kind words and for helping to make Cusco such a special place for me. I will never forget you. I hope to meet Kelly some day. Getting back to Peru to see you and Cusco and all my Peruvian friends is top of my list of things to do. Cuidate amigo.... hasta luego....
Monday, November 17, 2014
Yuri
A few years ago I had the good fortune to meet a beautiful girl called Yuri on a flight from Amsterdam to Edinburgh. We got chatting, as one does, or at least I do, and for some reason she seemed to like me and of course I liked her, so we became friends and have remained friends ever since. Yuri was at Edinburgh University doing her PhD but returned to Japan a couple of years back to be nearer family and complete her studies over there.
She has been back to Edinburgh a few times since then and has been here for the past two weeks to hand in her thesis, and we managed to meet a few times over a coffee. Yuri returned to Japan yesterday.
On Saturday I met her to say goodbye and farewell, at least for this time. We were able to spend a couple of hours together in a cafe near my flat at Holy Corner. Nice name that, means exactly what it says, as there's a church on every corner. Very holy. Though one of them is now a community centre named after Eric Liddell, the famous Scottish athlete.
As you can imagine it was a very emotional day for me. I tried my best keep control but this proved not to be possible and in the end I sat and cried in the window of that cafe as everyone walking by watched and stared. Well no they didn't stare but it felt that way.
Yuri, I want to thank you for all your friendship and love over the past few years, I forget how many, but lots. You are a beautiful person and I feel privileged to have got to know you. I am sure you will do well in future, I had hoped to live to see your success but that may not now be possible, but who knows.
Thank you for teaching me about your country and sharing your wisdom with me. As you know I had always hoped to visit Japan and visit some shrines and gardens with you and maybe even attend your wedding. I definitely plan to be at your graduation ceremony here in Edinburgh next summer. That is high up on the list of things I would like to achieve.
I am wearing the Buddhist Prayer Beads that Yuri gave me as I write this sitting in Caffe Nero. The beads came from Kasuga Grand Shrine and in Japan are called Juzu Prayer Beads. I know you told me the type of stone but I forget now. I shall wear or carry it at all times. I aim get to see the Grand Shrine some day.
I know you meditate twice a day, Yuri, and you've told me you will include me in your meditations. That makes me feel good and gives me encouragement. Thank you and I hope you don't mind this public acknowledgement.
She has been back to Edinburgh a few times since then and has been here for the past two weeks to hand in her thesis, and we managed to meet a few times over a coffee. Yuri returned to Japan yesterday.
On Saturday I met her to say goodbye and farewell, at least for this time. We were able to spend a couple of hours together in a cafe near my flat at Holy Corner. Nice name that, means exactly what it says, as there's a church on every corner. Very holy. Though one of them is now a community centre named after Eric Liddell, the famous Scottish athlete.
As you can imagine it was a very emotional day for me. I tried my best keep control but this proved not to be possible and in the end I sat and cried in the window of that cafe as everyone walking by watched and stared. Well no they didn't stare but it felt that way.
Yuri, I want to thank you for all your friendship and love over the past few years, I forget how many, but lots. You are a beautiful person and I feel privileged to have got to know you. I am sure you will do well in future, I had hoped to live to see your success but that may not now be possible, but who knows.
Thank you for teaching me about your country and sharing your wisdom with me. As you know I had always hoped to visit Japan and visit some shrines and gardens with you and maybe even attend your wedding. I definitely plan to be at your graduation ceremony here in Edinburgh next summer. That is high up on the list of things I would like to achieve.
I am wearing the Buddhist Prayer Beads that Yuri gave me as I write this sitting in Caffe Nero. The beads came from Kasuga Grand Shrine and in Japan are called Juzu Prayer Beads. I know you told me the type of stone but I forget now. I shall wear or carry it at all times. I aim get to see the Grand Shrine some day.
I know you meditate twice a day, Yuri, and you've told me you will include me in your meditations. That makes me feel good and gives me encouragement. Thank you and I hope you don't mind this public acknowledgement.
Friday, November 14, 2014
A Special Person called Sue
Well that's the first full day and two nights of the rest of my life successfully completed. I can't pretend that this is easy for me but I'm going to try to make the most of whatever time I have left. I will keep writing this blog for as long as I can which I'm hoping will be a long time. One of the most difficult bits is not knowing how long I've got, but then again none of you know either so we're kind of equals in many ways.
I have to face up to my new circumstances and be realistic about my prospects. I could have many years left or I could have a few months, but lets not play at God and try to predict how long it is. It's less than I would have liked but enough for me to make the most of the rest of my life however long or short it may be. I will have to find something positive to take out of this. There are a few things I want to do, some of which may not be possible but which I'm still holding out for.
The team at the Western General Hospital discussed my case at their meeting yesterday and nothing has changed. From what I can make out the team sits in a small theatre and have the scans for all the current patients projected on to a giant screen, with the consultant radiologist there to explain and answer questions. They all then decide jointly what it all means and what course of treatment/surgery to follow. And with all these brains involved and it being one of the best hospitals for cancer in the country I think I can feel confident in getting the best.
Mr Speake will see myself and Coinneach in his office next Wednesday to talk it over again. He asked to meet me with one of my brothers so I'm going with the older one of the two, respect for my elders of course. But I don't think Neil will be disappointed at missing out.
I have an appointment with Dr McLean my oncologist a week on Thursday. She will talk things over and present me with my options. Could be they leave it and keep an eye on developments and maybe offer treatment later on. Who knows? Well I guess someone does.
In case you're all wondering, I did manage to hold myself together during my meeting with Mr Speake on Wednesday, or at least I did until the very end. I must say he handled it beautifully. I couldn't have done it better myself, and he wasn't holding back. He was very open, but so caring. I feel he treats me like special patient, his friend. The only thing he didn't answer was my question as to what it all means in terms of time, but I realise he couldn't anyway, and I wish I hadn't asked.
I have to give a special mention to Sue McKeen my cancer specialist nurse. She came into the consultation with Mr Speake about half way through. I guess they must have agreed that beforehand. I was so pleased to see her. She has been such a huge support to me over the past eighteen months, she has helped me through it all. I spent half an hour with her afterwards talking things over. I thanked her for all she has done for me and told her she was family to me. She told me I was a special patient to them all and that the whole team were very upset at the news.
She then walked me over to the car park and stood waving as I left. Where else can you get treatment like that. Thank you Sue, you are a very special person.
Wednesday, November 12, 2014
Scan Results
This will be brief. I've had my scan results from Mr Speake and it could not be much worse. There are multiple bilateral new pulmonary nodules highly suggestive of metastases. Which basically means I have cancer in both lungs and lots of it. It's not operable. The team will discuss my situation tomorrow and I will be told whether or not they will be able to give me any treatment, e.g. more chemotherapy.
So that's it. I'm off out now to think about things but looks as if I need to decide how best to spend my remaining time here with you all
I will write more once my thoughts are clearer.
Tuesday, November 11, 2014
Aeolion Harp in the Botanics
It's less than twenty four hours now until I know what the future holds for me and to say the least I'm apprehensive. It's probably the most important day in my life since I almost got killed by Jimmy Bullar's lorry, when it chopped my elbow off. Though I didn't know at the time how close I was to the end.
This is more difficult than my first appointment with Mr Speake. Then I more or less knew I had cancer and he was going to confirm it and tell me the extent and the possibilities. Now I know nothing and can't even begin to guess what he might be about to say. So my good friend Mr Speake it's all down to you now, so do your best for me.
I usually get there early to see him and just sit quietly in his waiting room. If he sees me as he calls in other patients, for he doesn't leave that business to his team of nurses, he will nod and smile. And then I wonder what his smile can mean? Is it a good reassuring smile or is he just being polite. Maybe I should leave it to the last minute before I go to his waiting room. Or maybe not. Probably not. Best not to change my habits now.
I will update my blog tomorrow some time with the news, whatever way it goes.
I made it to the Botanic Gardens on Sunday. Thank you Colin for taking me in your car, even though you did try to kill us both on the way home. I enjoyed our afternoon out. The Botanics were splendid with autumn colours but the highlight was the Aeolian harp which is designed to play in the wind, though it was not windy enough to play last Sunday. It was designed and built by Mark Norris, leading Scottish harp maker, and is made made from an elm tree which had to be cut down because of Dutch elm disease. It stands in a specially built pavilion, on the spot where the elm tree stood. I'm not sure if the pavilion is made from the old elm tree, I assume it is. It's definitely worth a visit and I hope to go back some day and hear the wind play a tune on it. I will post some pics.
This is more difficult than my first appointment with Mr Speake. Then I more or less knew I had cancer and he was going to confirm it and tell me the extent and the possibilities. Now I know nothing and can't even begin to guess what he might be about to say. So my good friend Mr Speake it's all down to you now, so do your best for me.
I usually get there early to see him and just sit quietly in his waiting room. If he sees me as he calls in other patients, for he doesn't leave that business to his team of nurses, he will nod and smile. And then I wonder what his smile can mean? Is it a good reassuring smile or is he just being polite. Maybe I should leave it to the last minute before I go to his waiting room. Or maybe not. Probably not. Best not to change my habits now.
I will update my blog tomorrow some time with the news, whatever way it goes.
I made it to the Botanic Gardens on Sunday. Thank you Colin for taking me in your car, even though you did try to kill us both on the way home. I enjoyed our afternoon out. The Botanics were splendid with autumn colours but the highlight was the Aeolian harp which is designed to play in the wind, though it was not windy enough to play last Sunday. It was designed and built by Mark Norris, leading Scottish harp maker, and is made made from an elm tree which had to be cut down because of Dutch elm disease. It stands in a specially built pavilion, on the spot where the elm tree stood. I'm not sure if the pavilion is made from the old elm tree, I assume it is. It's definitely worth a visit and I hope to go back some day and hear the wind play a tune on it. I will post some pics.
Sunday, November 09, 2014
Waiting for the man
I had my latest CT scan on Thursday and I'm hoping it's the last for at least a year.
Then he disappears behind his protective screen with his mate and they leave me to contemplate my fate, as some disembodied voice tells me to stop breathing (or else), and then instructs me to breathe again, very rudely methinks. Can one say methought? Probably not; sounds stupid. Wee semi-colon there just for a laugh. It's all over in a matter of minutes, five or so, and then it's off to get tubes removed by a nurse whom I recognise from last year. He doesn't remember me and seems not to give a shit.
The scan takes place in a mobile scanning unit which is run by a private company from North East of England and goes round the country helping NHS cope with the huge demand put on its services by us cancer patients. I don't remember any mention of this little bit of privatisation in recent referendum campaign when Alex promised no privatisation. It's not the only one that goes unmentioned either. But more of that another time, maybe.
So now I wait. I see Mr Speake on Wednesday afternoon to be told the best or the worst. The best I keep telling myself, though sometimes it's hard to keep believing. I'm impatient to get it over and done with and put all this behind me. The worst time, if there is indeed a worst time, is the thirty or so seconds as I sit down in the chair opposite Mr Speake and wait for him to start. I've usually had a good idea what to expect of him and Dr McLean, but this time it's a mystery. No point in trying to guess from his facial expression what's about to hit me. And it's no time for small talk or chit chat. Fortunately he is sensible enough to know this. I've just realised I don't even know what team he supports. All I know is that he is married and has a wee boy of whom he is very proud.
Here's to good news on Wednesday and maybe 2015 I can travel again. Meantime I think I will visit the Botanic Gardens this afternoon, for it's a beautiful day here in Edinburgh. Hopefully Val's harp is blowing in the wind, if not singing even.
Wednesday, November 05, 2014
Scans and Things
There's an American family called the Kardashians you may have heard of. I always thought that they were an invented family from some American soap opera or comic strip, but I was mistaken. These people do actually exist. Or at least so says Peter Conrad in his Radio 4 series Twenty First Century Mythologies. Unless of course Peter is having us all on. Apparently one of these sisters, for they appear to be a family mostly made up of sisters, is married to a millionaire American pop star,capitalist/ businessman. Life is indeed strange. I can recommend the programmes though, which take their inspiration from Roland Barthes' essays Mythologies.
I hope you've all been watching Grayson Perry : Who Are You? One of the best things on TV. Tonight is the last episode, so don't miss it.
This afternoon I'm going to see the film Mr Turner so looking forward to that. Will let you know how it goes.
I'm in a state of nervous exhaustion as I wait for my scan tomorrow afternoon and then a wait of a week to be told the results at my appointment with Mr Speake. Hard to know how I feel. Sometimes quietly confident and then at other times just a trifle worried if not terrified. Hopefully Mr Turner will take my mind of it.
All for now. Must rush.
I hope you've all been watching Grayson Perry : Who Are You? One of the best things on TV. Tonight is the last episode, so don't miss it.
This afternoon I'm going to see the film Mr Turner so looking forward to that. Will let you know how it goes.
I'm in a state of nervous exhaustion as I wait for my scan tomorrow afternoon and then a wait of a week to be told the results at my appointment with Mr Speake. Hard to know how I feel. Sometimes quietly confident and then at other times just a trifle worried if not terrified. Hopefully Mr Turner will take my mind of it.
All for now. Must rush.
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