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. 

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.

Orchids in Botanical Gardens, Edinburgh

Aeolian Harp, Botanical Gardens, Edinburgh

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....

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.

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.

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. 

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.

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.

There aren't very many experiences more lonesome than lying on the bed of a CT scanner waiting to be scanned, unless it's the bed of an  MRI scanner, which takes a bit longer and is noisier, like an old broken down machine trying to clank into life. The radiologist tries to put me at ease as he fits me up with yet another tube to deliver the contrasting fluid, or whatever it is they pump into my arm, talking about his football team, which happens to be Sunderland, for he's from that part of the world. Hard for me to build up any enthusiasm for his team or it's present plight. 

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.

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.