Chemo failure

I should have had my second dose of intravenous chemotherapy on Wednesday at the Cancer Centre, but my white blood cell count was too low so they decided not to go ahead with it this week. I now have to wait until next Wednesday for my next session, which is definitely a bit of a bummer, even though it does give me a free week, it does mean I won't finish treatment until the 21st of May, and then only if there are no further delays. Peru is disappearing fast.

I seem to spend my life waiting for something to happen, all out of my control, a kind of suspended animation. I've been getting treatment for cancer now for nine months, spent five weeks in hospital, two weeks in bed at home, had five weeks of combined chemo and radiotherapy, numerous hospital and doctor appointments and now in the third week of an eighteen week course of chemotherapy and there still seems to be no end to it.

Looks as if 2014 is going to be given over to ridding me of this cancer, just like 2013. I almost said that the year would be lost but that sounds too negative. And I don't like using verbs like fighting or struggling in relation to cancer, they don't seem right somehow.  I'm not at war with myself. Yet.

So here I am trying to cope with the ups and downs of living with cancer and it sure is difficult sometimes to keep a positive frame of mind. Speaking of which if anyone else tells me to think positive thoughts I shall scream and scream, like the good lady said, until they hear me across the water. I do stay on top of things but sometimes it gets almost unbearable and a tear or two is sometimes called for.

The nurses at the Cancer Centre were their usual lovely selves. But they took four attempts before they successfully fitted a cannula for my chemo. This was a painful business. They then used it to take a blood test and came back an hour later to tell me that I'd failed the test so the cannula was not needed after all and could come out. This made me cry. I felt a wee tear was justified in the circumstances.

Thats all for now, just wanted to do this update on my treatment to keep you all in the loop. Life goes on. I've just had a call from my good friend Mike and I've forgotten to meet him for lunch. Fortunately he is a good man and forgives me and is coming round to visit me tomorrow morning instead. Sorry Mike for being a twit and thanks for not giving me a row.

Chemotherapy Again

Some words are loaded with menace and fear, like chemotherapy. Not a word I ever wanted to become part of my everyday discourse, and especially with reference to myself. It's a big brute of a  word with for me mostly negative connotations. A word which I've now had to embrace and imbue with positive sentiments. Not easy when it involves filling my body with poisonous, toxic chemicals for eighteen weeks in order to make me better but meantime making me feel like shit. I should be grateful for small mercies, I have a seventy percent survival chance if I get through this. Some folk are not so lucky.

I started the latest round of chemotherapy last Wednesday at the Edinburgh Cancer Centre with two hours of intravenous chemotherapy followed by various flushes, washes, glucose and other stuff either to prepare me or to send me home happy. As usual the nurses and other staff at the Centre were excellent and looked after me superbly well. My big brother came with me to stop me running away. The temptation was there for sure. I got though it with only a wee small tear at the beginning then all was fine and dandy.

They sat me in a nice big comfy chair by the window, and I let them get on with it. Having a cannula installed is never easy but once it's up and running and the drip working the rest is easy peasy, you just sit there and let the lovely chemicals do their bit. So let's hope this is working and destroying all these evil little cancer cells that may or may not be swimming around in my body. Do they swim or run? Maybe they just stroll casually around chatting to their pals as they go on their destructive way.

This will be me for the next eighteen weeks, well seventeen now, not that I'm counting, but it leaves one hundred and seventeen days to go. It has to be done so I'm glad it's begun and I can now see the end of the road in sight. And it's coming on the fourteenth of May, seeing as you ask. I can just about see that last chemo tablet between my fingers just before I pop it in my mouth and it disappears to join the rest of them. How shall we celebrate?

Another five months of my precious time the damn thing has stolen, so I better get a few more months added on at the end times. It seems only fair. In fact a few more years would be better still.

I've been getting daily phone calls from Jackie, an oncology nurse at the Cancer Centre, for the past week. I find the quality of care and concern for little old me to be just incredible. She wants to know if all is well and no bad side effects. She became concerned about me on Wednesday and spoke to a doctor who instructed me to come in to hospital for an ECG and check up. This was when I was sitting in a cafe with my pal Kenny whom I hadn't seen for some time. He drove me to the hospital and gave up his afternoon for me. Thanks Kenny. My ECG was normal as was the blood test, so I was able to return home and get on with things. But daily phone calls seem destined to continue and I have to be prepared to go see them at anytime. Better keep a bag packed. All for now. Tired. Very. Lunch with NJ calls.

Mandy Frances Collins - 3/07/1961 to 2/01/ 2014

Those of you who have known me for some time will know that Mandy was Kieran's mum. Sadly she passed away on 2nd January having not been well for some time. Kieran took her in to stay with him and Kerry just before Xmas but she became very ill and was taken into Edinburgh Royal Infirmary at the beginning of the year. The doctors advised that she was not expected to survive for more than a few days. Kieran called me to let me know and he then phoned Chris and Johan, his brother and sister, who joined him at the hospital. They were then told that Mandy was not going to make it through the night.

She died at 1:40 am with her three children at her bedside holding her hand. I was sorry that I could not go and support them but I just did not have the strength to be of any use.

Her funeral service was on Monday 13th in Morningside Parish Church and she was laid to rest in  Morningside Cemetery. Mandy had expressed a wish to be buried in Morningside, as she knew and loved the area so well, having spent so much time there attending hospital as an in-patient and out - patient and made many friends whom she liked to visit. She also loved all the superb charity shops we have in Morningside.

When she was a young person Mandy lived in the Ecumenical Stair Community in West Pilton, Edinburgh, which was run by a group of community ministers from local churches. Mandy kept in contact with one of those ministers over the years, the Rev Alan Douglas McDonald, who went on to become Moderator of the Church of Scotland in 2006 - 2007, and is now a minister in St Andrews Fife.

Kieran contacted him to let him know about Mandy's death and he expressed a wish to do all he could to help. He came down from St Andrews to attend the funeral director with Kieran, Chris and Johan, and arranged for the funeral service to be held at  Morningside Parish Church, which is where  the funeral service for John Smith, late leader of the Labour Party was held. It's one of the most beautiful churches in Edinburgh, so the good Rev says. Photo may be forthcoming, but I'm sure the web thing will have some too.

Rev McDonald conducted the service himself and gave Mandy a superb eulogy, which came from his personal friendship and understanding of her history and which made such a difference. I felt so pleased for Mandy. I don't know how many people attended but there were a lot there, including many young people, as well as her brother who had flown over from Boston, USA and her brother from Midlothian and other family members as well as people who had known her in West Pilton.

Her friend Crista, with whom she lived in the Stair Community, read from Corinthians 13, the congregation sang Morning Has Broken and Bind us together Lord. Lustily I thought. Kieran then got up and paid a tribute to his mum, which he did beautifully, and I don't mind saying  he brought a tear to my eye and I felt very proud of him.

I will ask him for permission the post it on here. Meantime I'm sure he won't mind if I finish this post with the Native American Indian prayer he read as the final part of his tribute. I should maybe add that he had his 30th birthday between his mum's death and her funeral. Twenty two years since I first met him and his mum. The day is clear as yesterday in memory. Thanks Kieran. Here is that prayer he finished with:

Life must go on.

Grieve for me, for I would grieve for you.
Then brush away the sorrow and the tears
Life is not over, but begins anew,
With courage you must greet the coming years.

To live forever in the past is wrong;
Can only cause you misery and pain,
Dwell not on memories overlong,
with others you must share and care again.

Reach out and comfort those who comfort you;
Recall the years, but only for a while.
Nurse not your loneliness; but live again.
Forget not. Remember with a smile.

12 Years a Slave

Well that was just about the most memorable way to resume my cinema going  I could have hoped for after my uncalled for break of three months. It felt so good to be back in a cinema. Definitely one of my highs since coming home. It's given me a psychological boost on the road to recovery, if not even a physical one. Thanks to John B for coming with me.

The film I saw was of course 12 Years a Slave, and what a movie to choose for my first outing. I'm sure you all know what it's about so I wont bore you with the story/plot details.  The word masterpiece is probably overused, but I've no doubt that this will go down as Steve McQueen's masterpiece. I'm sure he will make more great movies but I can't imagine that he will ever surpass this one, or if he does we sure have some treat coming up. Well we probably do anyway, masterpiece or no masterpiece.

If you've not been to the cinema recently or for a long time I would urge you to go and see this movie. I can guarantee that you will not be disappointed. Just get out there and see it.

I tried hard not to get too emotional but he had me in tears a few times by the end. It's such a powerful piece of work you can feel it physically and in your soul. Chewetel Ejiofor gives an extraordinary, magnificent performance as Solomon/Platt, such an expressive face, you feel everything he feels, and suffer along with him.

All the performances are excellent. Michael Fassbender as the sadistic, drunken, rapist, slave owner gives a truly frightening, psychotic performance. Lupita Nyong'o as slave girl Patsey whom Fassbender rapes and abuses is stunning, in apparently her debut. Where she got it from is a mystery, but well done anyway and I reckon she will be around for a long time. Benedict Cumberbatch is good as an almost humane slave owner, or so he thinks. Brad Pitt comes on towards the end to help things to a conclusion. He's as good as you expect him to be.

It's a hard film to watch, almost unbearable at times but you have to keep watching, no matter that it hurts so much. There is a scene where a hanging is interrupted half way through and he is left hanging there only surviving by balancing on tip toe as life goes on as normal around him. Patsey brings him some water as he hangs there but no one else helps. Its a painful scene to watch and seems to go on forever. There are other similarly hard scenes to watch, where you just feel you should look away, but it's never exploitational, all justified.

Anyway that's enough from me about it. I cannot recommend it too highly. Stupendous stuff, which is why I love cinema so much, and miss it so much when I'm deprived of it.

Tomorrow I start my chemotherapy with a day in hospital. But more of that later.

A Happy NewYear

A Happy New Year to one and all. I know it's been a while since I wrote anything on here, in fact not since I came home, from hospital, which seems just a tad too long, but my time and strength has been taken up with recuperation and recovery, which has been incredibly hard, and a lot more so than I had anticipated, so that's my ecxuse out of the way. And thats an awfully long sentence is it not?

I don't normally make New Year resolutions, or at least not in public, but I'm making an exception this year due to the unusual circumstances I find myself in. So two resolutions, firstly that this year I will devote all my strength and resolve to recover from this cancer - "not to lose the joy of living in the fear of dying." That's a quote, obviously, but I don't remember who said it.

And secondly, to write something on this blog more regularly, and at least once a week. So look out for that and get back to me should I abscond.

I met my oncologist, Dr McLean, back in December and she gave me an update on the pathology report. The cancer had spread to lymph nodes, and two were removed during the operation. They also found microscopic traces of cancer in blood vessels near the tumour. The tumour was removed and they are pleased with the fact that they achieved a good margin round the tumour. It all becomes quite confusing, if not a little stressful. The bottom line is that they no longer say that I will be cured of the cancer, but that I have a seventy percent survival chance if I successfully complete the chemotherapy course they have planned for me.

I guess that I would have jumped at seventy percent survival chance, had it been offered last May when the cancer was discovered. I would prefer the cure that was hoped for initially, but seventy seems like a good number, lets hope lucky for me anyway.

This is just a quick posting to get me in the way of writing again and remind me how to use blogger. It's easy to forget the daft little things blogger does to keep one on one's toes. Speaking royally as one does from time to time.

I won't bore you with details of my recovery since I came home from hospital, save to say that it seemed never ending and hard going and never to be repeated and thanks to all who helped me through that difficult time. You know who you are, and thank you all.

My life was confined to my flat for a few weeks and since then mostly to Morningside and surrounds, which is fine and dandy but I'm hoping to branch out soon, this week all being well. Reading is beginning to get better. I'm currently reading a biography of Wordsworth by Hunter Davies which I'm enjoying immensely, a book called Alone in Berlin by Hans Fallada, which was my Xmas present from Emer, and which is excellent and well worth looking out for, and I'm also reading my first book by V.S. Naipaul, The Mystic Masseur, which is excellent and makes me wonder why I've left it so long before trying him out, he is after all a Nobel Prize winner. I shall definitely be reading more of his work, probably A House for Mr Biswas, whoever he was.

I've been watching Breaking Bad and am now on season two and it's as good as everyone told me it was. I've not been to the cinema since last October and am seriously missing it. I seem to have missed some great movies, but I'm hoping to do something about that this week, so watch this space.

There now that's that done Donald and it wasn't that hard now, was it?

Going Home

That's me fit and ready to go home tomorrow 26 th November after 20 days in hospital providing Mr Speake is still in agreement come the morning. I seem to have hit a barrier and wasn't making any progress in my recovery which I think was caused by over enthusiastic liberal dosages of pain relief. Most of it has now been stopped and I'm on the medication I will be taking when I go home. 

So now I begin the next stage on the road to full health. I will have a couple of weeks rest and recuperation at home which I badly need. Split infinitives are allowed nowadays I believe. 

 I already have my appointment with Dr McLean, my oncologist, on 12th December to get going with the next round of chemotherapy. She promised me 18 weeks of chemo so let's hope it's not anymore once she's studied the pathology report. 

My days in hospital have been a helluva ride and thank you to all the good folk who have looked after me and got me successfully to this stage. But especial thanks to Mr Speake and all his team. 

Thanks too to all of you have visited me and all the good wishes I've had from around the world and to Ben for the best get well card ever. 

That's enough typing on my iPhone. Next posting will be from Morningside. 

Pathology

I notice that I've not given any updates on the condition that my condition is in recently so thought I would write an update in this post on things so far.

good. The tumour is out and no cancer left behind. There is a margin of healthy tissue all round where the tumour was removed which is what he was concerned to get. The cancer was at an advanced stage and the thing now is to make sure it does not come back so will need more chemo which I was expecting anyway and regular three monthly CT scans for some time.

Mr Speake says he achieved all he set out to achieve and he is happy with the result and so am I. It was a mighty relief when he came to give me that news as I'd been worried for a few days about getting my report. Just one more step along the road of recovery. He reckons that I should be able to go home early next week. 

The main problem now is getting the right  balance of pain relief. On Tuesday  I was given so much that I spent the whole day zonked out and asleep and it's been not much different since. I think I slept through Gordon's visit on Tuesday. Sorry about that Gordon and thanks for staying and warching me sleep. I still don't have the right balance. In fact I've fallen asleep a few times while writing this post this morning so if it's patchy that's why.   

I continue with the patch on my back for pain relief though it's now been reduced In strength from 50 to 37 and will go down to 25 in two days and so on down until I have no more patch. It's the tablets called Gabapentin that have to be controlled or changed to another tablet. 

First date etiquette

Mr Speake came to see me this afternoon with three of his students and I agreed to an examination by one of them. It helps pass the time and I thought it might be good fun. Plus it helps these poor students learn to be as good as their master. Don't suppose he would like being called that so let's just say mentor. 

My iPhone wants to take over this blog and seems to think it can read my thoughts. It's not only predicting words but also seems to predict whole phrases. Quite Orwellian, maybe it has taken over. Apple seems that way inclined, so if I start writing crap blame the iPhone. 

Anyway to get back to my story I had these three medical students doing some kind of assessment part if their training and using my fine body as their plaything. Two females and one male and one of the girls had to carry out the examination as the other two looked on and Mr Speake stood at the end of the bed watching over things, giving encouragement and asking questions and reminding her of stuff she should bear in mind and should be doing. Very gentle he was too. 

 But even so I've rarely felt so anxious for someone. She seemed so small and innocent looking and not at all ready for this kind of ordeal. The other two looked on, thinking thank God it's not me, but knowing that soon it will be. They have to go through it I suppose otherwise there will be no surgeons around to remove the next generation of tumours. So if you are young just think one of these students today could be sorting you out in years to come and I will have played a small part in your treatment. 

My student girl seemed to be doing quite well with her examination and getting to the end when Mr Speake says "you've done four of the five parts we spoke about and we've now got one left to do, so what do you think that would be?" She looked as if she had no idea. She tried a couple of obvious guesses, looked at him and then at me and then said she needed to do a rectal examination! 

I almost fell off the bed. I'm thinking to myself no way are you sticking your finger up my bum, it's our first date my love and it just would not be right. Meanwhile Mr Speake must have seen the look of panic on my face and smiled down at me and I thought it's ok for you mate but she's not threatening to assault your bottom. He told her yes that would be correct for most examinations but in our case today we agreed we were looking for something else. Huge sighs of relief all round. 

The examination proceeded to a smooth closure with handshakes all  round. 

 

Holding Hands

Sunday in Western General Hospital and all is well. Writing this on my iPhone  whilist lying in bed following a tasty bite of lunch and listening to a nurse yapping away vigorously in the distance. Hospitals are fascinating places, ever changing.  Never stopping to rest and recuperate yet somehow managing to maintain some level of order and discipline so that everything goes on as before, seamlessly reordering itself. 

This morning I was lying in my bed chatting to one of the nurses or more like she was chatting to me and we got talking about her home country and somehow or other she began to describe the death of her sister, followed soon after by the death of her mother who had decided that there was no longer any point in living now that her daughter was dead. 

It was all quite poignant and she became tearful and upset as she told me her story  so I took her hand in mine to comfort her and she told me that she had held her mother's hand just like that as she died. By this time I was getting into a state myself and she was using my tissues to wipe away her tears. So a heavy morning for us both but I think she must have found it therapeutic to tell me. She's a lovely nurse whom I've known since my last time here in July. 

I'm writing this on my iPhone and the keypad is not designed for prolonged use so I must stop now and get ship shape for my visitor, George, and do the homework he left me last time he was here. He's a hard taskmaster is old George. 

Meantime my condition improves slowly everyday and I see Mr Speake in the morning for further discussions on couple of issues slight concern and let's hold he orders my cathete removed. 

The Wrong Teeth

The nice nurses and doctors in here feed me loads of drugs some of them with mind blowing effects. One of the drugs I take for pain control is called Fentanyl which is fed to me via a small patch attached to my shoulder. The technology behind it is very high tech and it's effect on my poor brain is equally high tech, expansive and psychedelic. 

I dream constantly even when I'm in bed during the day and just resting my eyes I begin to dream. It's difficult to discern my dream world from reality as my dreams blend into the real world. Sometimes I get so mixed up between my dream world and the real world and it's hard for me to work out if I'm in reality or dream. Given present realities the dream world is often the best.

In the real world a young nurse goes up to this old guy, well ok older than me by a few. and she's holding out a small bowl with a pair of teeth. " These are nae mine" says the old guy. " So who's are these?" she asks the rest of us, as she waves the teeth about, looking somewhat the worse for wear. The teeth I mean and not the nurse. Eventually a prospective owner is found and he is held down by the rest of us as the nurse rips the wrong teeth out of his mouth. And all back to tranquility now. 

 

An explosion

A week now since I had my operation, in fact it's eight days and today is first day I have felt up to writing or indeed fit enough to do so. I'm writing this on my iPhone so no editing or corrections as it's too much hassle. So any repetition, deviation or hesitation Is the phone's fault and nothing to do with me. 

The operation was a success and Mr Speake is very happy with how things have gone apart from one or two minor things which he says are not a concern for him. He decided yesterday that he wanted a CT scan to make sure there are no leaks in the join he made in my rectum. Not only did he order the scan but he came to the ward and accompanied me to the scan room and showed them exactly what he wanted. He then waited for the scan to be done and went with the radiologist to read it. They spent some time on it and he then came back to the ward to give me the report. I've never met a consultant before quite like him prepared to walk along the corridor with his patient in a wheelchair to the faraway x ray department. He is truly exceptional. I feel so safe in his hands I could stay for as long as he wants me to. 

Every day he comes to see me at least twice and the rest of his team are equally solicitous and also very pleasant. His assistant in the operating theatre was Dr Khan but she's been off mostly since I had my op, until yesterday when she came to see me and I was able to thank her. That was the first time I'd met her so it was good to see someone who had got to know me so intimately. 

Wednesday night was a difficult night as I developed a high temperature and got the shakes real bad. I'd had to have the catheter put back as I wasn't emptying my bladder sufficiently so it was back to catheter days for me. So there I was lying in bed with a doctor on one side trying to get a needle into my arm with not much success and I'm thinking there's something not right here and sure enough my stoma chose this moment to inflate itself into a giant balloon and began leaking down my pyjama trousers. So suggested to doc it would need fixed urgently. I'm in a feverish state and not a little confused and finding it hard to get the right words to come out of my mouth in the right order as the great man said about the notes as he taught the other fellow to play the tune. Having worked out what was happening I then had two nurses and the doctor seeing to me. I couldn't stand up without support and by now my pjs are in a state. So there I was surrounded by three women, a catheter hanging down from my penis, an exploding stoma bag and stark naked. I don't think I've ever felt worse. Completely alone, confused and upset beyond belief. Fortunately the nurses and doc were great and soon had me shipshape and back in bed. 

That's lunch arrived .... 

Approximately free

What's the loneliest place in the world? That moment when you arrive in the operating theatre and you've been handed over to the crew who will be operating is quite high up there, and you're all alone, is quite high up there in the loneliness stakes. You just lie there completely alone wondering if this could be your last conscious act, wishing they would hurry up and get on with it and knock you out. It's a relief when the anaesthetist comes to chat and tell you what he's going to do and how happy we're all going to be. OK for you I say to myself. And then he sends me to sleep and nothing.

They don't seem to use a mask anymore or to count down until you dose off . Oblivion is achieved intravenously nowadays or at least it was last time.

Having an MRI or CT scan can be quite lonely too, as you lie there listening to the machine clunking away in such an old fashioned way, and you wonder what it's seeing as it slices through you. What more bad news is it about to disclose? Maybe this time it will be good news and the bloody thing realises it was all a mistake and it got it wrong. Wouldn't that be nice.

The Scottish poet, Edwin Morgan wrote a poem about having scans, called Scan Day. He's one of my favourite Scottish poets, well worth a look if you don't know him. I've maybe quoted his poem Strawberries before, and if not I should have done. So go find it for yourself. Meantime Scan Day:

Two scans in one day, CT and bone- they are certainly looking after me.
Computerised tomography like a non-invasive Vesalius will slice me apart to see
If I am really what I ought to be and not what I don't want to be.
In the giant redwood forest you are shown the rings of a fallen tree
With the blips and wavy bits that tell you it's been a good fight, even with destiny.
                                 There are no chimeras
                                 Under the cameras.
You are laid out as you are, imperfect, waiting, wondering, approximately free.

Mi blog en español

Este apartado de mi blog es para mis amigos en Perú. 

No voy a poder volver a Perú este año lamentablemente porque tengo cáncer. Me diagnosticaron un cáncer de colon en Mayo. He tenido cinco semanas de tratamiento de quimioterapia y radioterapia, hace dos meses. 

Este jueves, el día siete de noviembre van a operarme para quitar el tumor. Si todo va bien espero recuperarme totalmente pero voy a necesitar otras 18 semanas de quimioterapia.

Normalmente en esta época del año debería estar con mis amigos de Cusco y Lima, y trabajando con los niños de Villa María y los de la comisaría de la familia en Cusco. Pero este año no va poder ser. 

Espero poder regresar en 2014 y disfrutar de la compañía de todos mis amigos en Perú. Os extraño mucho. 

Hasta el 2014. Nos vemos. 

Maggie's Centre

You can't beat the NHS no matter how our politicians try to ruin it, long may it continue to heal and look after us in our hours of need; which seem to be plenteous in my life right now. I have had brilliant unstinting care and support from all the staff at the Western General Hospital since my cancer diagnosis back in May. Six months ago would you believe?

The nurses, doctors, my oncologist, my consultant and all the specialist staff  I've come into contact with have been the best I could possibly ask for. But this post is not about them but about Maggie's Centre.

Most people in Scotland will have heard about Maggie's Centres, as I had myself, giving to collections and probably not giving it another thought and certainly not expecting, one day to need it's services or to become a regular attendee there. That was not part of the grand plan at all. 

When I was told that I had cancer I was devastated, confused and not a little upset. In fact I felt quite lost at times, and no matter how much support and help I had from family and good friends, at the end of the day I was still on my own and still feeling devastated.

The fact that I no longer feel so devastated is in no small part down to the support I have found in Maggie's Centre. I reckon that my philosophical chats with my good friend John Llewelyn and the support from Maggie's have helped me come to terms with, and have a better understanding of what's been happening to me. I look to the future with a little more confidence and determination, not to say defiance, expecting to make a full recovery but knowing Maggie's will be there either way.

I know there are some people who read my blog who probably know nothing about Maggie's Centres being as they live elsewhere, so maybe this link will help   www.maggiescentres.org

The original idea came from Maggie Keswick Jencks who was treated for cancer at the Western General Hospital and she along with her husband Charles Jencks were the co-founders of the centres, though she herself did not live long enough to see the first one opened here in Edinburgh. There are now twelve centres in the UK, including one in Cheltenham, which I plan to visit next year. There is also one in Hong Kong and many more planned, even one in Barcelona, which I also hope to visit.

If you have ever sat in a hospital waiting room to see a doctor, or for your MRI/CT scan or your therapy  or whatever you will know how lonely it can be, despite all the care and support from the staff there who are invariably run off there feet, but  still managing to be friendly and cheerful with little time for chit chat. Maggie realised that there was something else needed by patients, hence the Centres. You can read all about them on line so I won't repeat it here.

I should mention that I was gently persuaded by my cancer specialist nurse to check it out. I was reluctant at first, thinking that I could survive without support. Crap of course. So thank you Sue for persevering. Cancer specialist nurses are a great idea too. I don't know how I would have coped without you Sue. You were there for me every time I got hard news and you were generous with your love and care. Thank you.

So what do I do at Maggie's? Well Seonaid, Izzi, and Andy work there and are all trained nurses who specialise in cancer work. They are there for me whenever I need them, to offer counselling, advice, information and moral support. Than you one and all. And I hope I've spelt your name correctly Izzi?

Every Thursday morning I go to a support group with other cancer patients and we just chat. I think this group has become the highlight of my week. We usually have about eight or ten folk attending and Seonaid or Andy joins us to keep us on the right track and offer support or advice or guidance as required. I can't imagine life without my support group. What a brilliant group you are folks.

I can't remember all your names but I'm sure you will forgive me for that, but it is true to say that you have become like a family to me. Your love and good wishes mean the world to me. I would never have believed that a group of people I had never met before could become so important for me in such a short space of time.

You entertain me, you make me laugh and cry along with you. You inspire me. I will never forget about the teeth..... I know you will think about me on Thursday, so for that I thank you. I hope Seoanaid will be able to forward a link to my blog to you all. And you have my permission ,Seonaid to read this out to the group on Thursday. Thank you folks and I will see you in December and good wishes in all your own dealings with the NHS.

Been listening to Bob Marley, Punky Reggae Party and why not Bob?

The post before Maggie's Centre post

Having cancer changes everything. No matter how hard I try it's impossible to forget about it. It's always there at the back of my mind. It just won't go away. I try but it keeps coming back to the surface of my consciousness. I've had to learn to live with it, much as I would rather not have to bother. I guess this is my life at least for the time being. But I have faith in Mr Speake and trust him to make it go away when he operates next week, and then Peru in 2014.

Many good things have happened to me since my cancer was diagnosed and I can't really imagine my life now without the experience it's put me through. Maybe I wouldn't quite go so far as to say I would not have been happy without the experience but it gets close to it. Mind you don't ask me if I still feel the same next year if Mr Speake gives me tough news. He used to tell me that his plan was to cure me and that he was hopeful of doing that, but last time I saw him and asked him if he still thought the same all he would say was that he would give me a prognosis once he had the pathology report from my tumour. Maybe I read too much into "the way he tells them" so to speak.

You have to learn a whole new language when you have cancer and sometimes professionals don't seem to remember that. I don't think cancer is like any other illness in its complexities and possibilities of cure or no cure. I get books and pamphlets to read but it's never enough information or  else not the right information, in that it doesn't tell you all will be well in the end, and as for the internet thingee, well don't get me started, it's best to keep away from all that.

My lap top has given up the ghost on me, so less temptation to go searching for cures, and now have to use my iPad for writing my blog. Which is not exactly  easy; think I should get one of those special keyboards or even a new laptop or maybe I should treat myself to the MacBook Air I keep promising myself.

Discovering Maggie's Centre is one of the best things that has happened to me since I developed cancer. Thanks to my cancer specialist nurse, Sue Mckeen, for telling me about it and persuading me to go. This post was meant to be about Maggie's but I seem to have got lost somewhere. Lack of concentration you see. So next post will be about Maggie's as it deserves a place of its own.

Meantime I need a coffee booster. I got a row from nurse this morning for the level of sugar in my blood, so that's something else to get on with. I wonder if I've been to Pizza Express once to often ?

All Systems are Go, and a Research Study too

Well that's me all sorted for my operation on 7th November. The nurse at the hospital this morning reckons my infection won't be a problem and it's all systems go. Can hardly believe that it's happening in seven days time. Six months more or less since my diagnosis. Everyone I've met at the hospital is full of praise for Mr Speake, my surgeon, or if not they tell me he would not be operating in Western General Hospital as only la creme de la creme are acceptable, so to speak. I feel nervously confident. Apparently the operation will last four hours minimum and then two or three days in High Dependency Unit.

I hope I'm not boring you with my op details, but just needed to get it off my chest and let you all know how things are progressing. I've been given a thick wad of stuff to read before I go in, so will have to get down to that tonight. There's so much I have to do before next Thursday it's going to be hard to fit it all in. I'm hopeful my shower will be up and running by Monday, which should get that off my mind. Everything becomes more complicated when one is not too well.

I've been recruited onto a research study, Scottish Colorectal Cancer Genetics Study,  that Professor Dunlop is doing along with Edinburgh University and funded by Cancer Research UK. I met one of his Senior Research Nurses today and she invited me to take part, and I agreed. There will be no benefit for me but it could make a difference for folk in the future, so glad to help and you never know that could be you benefiting. I gave a sample of blood today and they will obtain my DNA from it though I won't be told anything unless they discover something that has relevance to my condition or to my family members. They say they may detect genes in my sample with a major effect on cancer risk. If this happens they will contact me and advise me on next steps.

I've also agreed to let them have a sample of my tumour once the pathologists have finished with it and it will be kept in cold storage for them to study in their own time. Apparently Professor Dunlop likes nothing more than looking at my cancer through his microscope. Easy life some folk have. Anyway I was really pleased to be asked and very happy to participate. All too exciting.

Donna, the research nurse asked me what size my feet are and also the size of my hands. There may be a correlation between foot and/or hand size and cancer risk. Bet you never knew that. They work in collaboration with other teams in UK and abroad to test theories etc and my data could be used by them too. They won't tell me my DNA sequence unfortunately.

Must go for a coffee. It's wet and windy now here in Edinburgh but we expect that now, don't we?

Moving on

Is it really three weeks since my last posting? I guess it must be. Don't know why this has happened except that I've still got workmen in my flat. I've had a combi boiler installed, my old water tank and bath removed and am having a shower fitted, which I reckon will be better for me in future. And my bathroom was needing done up anyway. Getting there now and shower should be in place by next Monday. Takes time as I had two days worth of plastering done last week and need to wait a few days for it to dry out sufficiently for wet wall to go up. What a mess it all makes. 

I've also developed an infection which has required daily visits to my doctor's surgery for treatment over past two weeks. And large doses of antibiotics. The infection is not yet fully healed and could mean the postponement of my operation which is due next week on 7th November. Tomorrow I go for my pre admission assessment. Let's hope they are not going to be too stringent about things and give me a few more days to become infection free. Fingers and all available parts crossed. 

Having this infection has meant that I've been more concerned about the op being postponed than I have been about the op itself. But now it's all becoming totally confusing. What should I worry about? The op itself or the possibility of a delay? Does it matter? Probably not. I'll soon know whether or not it's all systems go. 

It's now six months since I was diagnosed with cancer, and sometimes I feel I'm a wholly different person! My life has changed completely,  I'm not the same person as I was a few months ago, or maybe the same but "transformed utterly" as your man said though in a somewhat different context. I've learnt to cope with being a person with cancer. It's been a hard journey but getting there slowly. I sure wish that I never would have had to do it but here I am, resisting being a patient and definitely not suffering. Always resisting and revolting.  I like that, resistance and revolution. 

It's getting late, must to bed be off. Big day tomorrow. I leave you with some Yeats:

"  But one man loved the pilgrim soul in you,

   And loved the sorrows of your changing face;

   And bending down beside the glowing bars,

   Murmur, a little sadly, how love fled

   And paced upon the mountains overhead 

   And hid his face amid a crowd of stars." 

   

The whole poem is suberb, but don't have time to quote it in full, so go read it for yourself , it's called :

When you are old ..... 

Sad news this week about Lou Reed. Seen him couple of times. Wonder who went with me to see him in Edinburgh Playhouse, some years back? Was that you? 

Tumour news

I saw Mr Speake (Doug) yesterday and he has decided to go ahead and operate to remove my tumour on Thursday 7 November, which is exactly four weeks from today. The radiotherapy was a success and they are pleased with the result, and it will continue to work over next four weeks.

It's another waiting time for me but now I know where I am. He remains hopeful of curing me but will not be able to give a prognosis until he has the pathology report after the operation. Which is fair enough I guess.

He tells me it's all very complicated and difficult, with lots of risks due to the location of the little bugger. He tells me I will be a few days in a High Dependency Unit after the operation and then some time in normal hospital ward. How long will depend on how well I recover and any unexpected developments.

The radiology people have noticed an area of concern on my liver, from last weeks scans, so I have to go for another MRI scan tomorrow. They will let me know the result the following Friday by phone.

It was a difficult afternoon, but luckily Sue my cancer specialist nurse was on hand to see me after I saw Mr Speake and she spent forty minutes with me talking me through it all and giving general support. She's a bloody marvel.... thank you Sue. I will have to send you a link to my blog sometime soon.

I went to my support group at Maggies' this morning. Brilliant place, so glad they are there for me and everyone else who goes through this crap. You are the best. Thank you. This morning was a huge help.

Sunshine on Leith, Blue Jasmine and more

That's my six weeks of waiting over. I've had my scans, the team will have viewed them last week and had their chat about my little tumour - wish I'd been invited - and this afternoon I see Mr Speake to find out the next step on our journey together. Lets hope he's had a good night's sleep and is on the ball. I think I will be his last patient today, hopefully nobody will have upset him.

I'm finding it very difficult to concentrate, especially for the last week, as I get closer to finding out what the future holds for me. Which is partly why I've not blogged for a few days, and partly because of laziness of course, and always finding other important things to do instead. Mind you I did get all my windows renovated last week, so I suppose that's some kind of excuse.

I can't say that it's been easy but I remain optimistic and still expect to make a full recovery. Things are going to take longer than I had expected, as I keep getting fed new information, drip by drip, and I can now only hope that by this time next year I will be able to recommence my travels.

If Mr Speake does operate to remove the tumour I will require eighteen weeks of chemotherapy, beginning in December, taking me up to May 2014. I will then need to wait at least two months before they will look at reversing my colostomy, and a further two months before I will be allowed to travel by plane. So looking at very late 2014. Not the retirement of my dreams. Patience required and I'm not blessed with buckets of that virtue. Will have to develop some. Wonder where it grows?

Meantime I've kept occupied with some cultural activities. I went to see Sunshine on Leith with John and Emer yesterday. Great movie, had me in tears by the end, though John insists I was in tears half way into it. Mind you he does admit to a little tear in his own eye too. Superb performances from all. Jane Horrocks does a superb version of Sunshine on Leith. Surely one of the great Scottish love songs, and certainly the best supporters song of all time, without exception. Nice to see Peter Mullan showing his soft side - he does have one you know- and he sings Oh Jean almost as good as the boys themselves, with a bit of Tom Waits effects thrown in for good measure. The four young actors playing the main parts are clearly stars of the future, with oodles of talent and looks.

The stars of the film are The Proclaimers back catalogue, great songs, so many of them, too many to list, so go listen, or best still see the movie. I will go again and certainly buy the DVD when it's released. Morningside here in Edinburgh gets a few mentions. One of the Proclaimers used to live a few doors along from me, here in Morningside. I may have mentioned this before but no harm repeating things, I once or twice sold him a Socialist Worker. Never got his autograph though. Silly me.

The other star of the film is of course the City of Edinburgh. Makes me feel so happy to know that I can walk into that scenery whenever I feel the need. It's simply stunning, beautiful, unbelievable. If you've never been to Edinburgh this is probably as good a view as you will get without actually coming.

Great scene outside The National Gallery at the foot of the Mound as the whole world joins in on a version of  I'm Gonna Be. A nice wee earner for the Edinburgh tourist board, not that it needs one. Our pubs look good too, though I couldn't identify any of them. Don't know if John or Emer did?  Go see it is my advice. As good as Mamma Mia, if not better. Greater songs for sure.

I've also been to see the new Woody Allen movie Blue Jasmine which is definitely worth seeing, if only for Cate Blanchett's performance. Oscar bound methinks, she is. But she will have to control that drinking and talking to herself in the park and on the streets. Children get upset with that kind of behaviour Cate!

I've read some books too but will tell you another time. Some crackers too.... I'm listening to The Proclaimers singing Oh Jean as I finish this post..... and only four songs came from the album Sunshine on Leith, I think five came from This is the Story, including the opening song, Sky takes the Soul.... there are 21 songs altogether in the movie.

A Fond Farewell

Now I feel as if I've really retired, following my little farewell event in The Newsroom pub here in Edinburgh last Friday and not forgetting the splendid lunch with my DWP visiting team colleagues in Howies Restaurant. So it seems like the end of something. Forty years of my life and now for the rest of it. 

The whole day was a moving experience for me and more than I could have hoped for. I was so pleased to survive the whole day as I'd been worried that I would not hold out. But my old body held out well. Tired but happy.

I want to say thank you here to all my colleagues who gave so generously towards my retirement gift. I was overwhelmed by your generosity. Thanks also to my colleagues in Wester Hailes DWP who not only raised £174 for Maggie's Cancer Centre, but also made such a generous gift to me personally. You have all touched my soul and I will never forget such kindness.

I also want to thank those who gave me individual gifts. I don't wish to embarrass you here by naming you but you know who you are. And that includes you Steve, who remembered how I introduced you to Neil Young and the night we went to see Live Rust, all those years ago. 

I was so pleased to see so many old friends and colleagues from my years in the civil service. It was good of you all to turn up. There were so many of you, just too many to list here. I have memories of all of you and many escapades along the way. We did some work too. 

You were and are all brilliant and the British public don't appreciate nearly enough what you all do to keep their system going. I wish we'd won more pay rises over the years but we didn't do too badly. Keep up the struggle and keep supporting our union. Sometimes it's all there is between us and chaos. I mean you just have to look at Ian Duncan Smith. Need I say more? 

That's all for now folks. I'm happy to have been your colleague and friend these past forty years. And hope to see more of you retiring and joining me in some cafe over the next few years.

I'm off now to see the new Woody film, Blue Jasmine with my old friend Emer and to give her her birthday present, a few days late, but still.