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 ?