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.