Tuesday, June 28, 2005

Day 38 - Return of the mask



One of the views from my window, the boat is called "My Queen" she is part of the Starcross ferry fleet and is a Dunkirk veteran. This was a summer sunrise looking towards Halsdon, Exmouth. This picture puts into context my later posting.day was extremely busy, but to do everything justice would be unreal. There were 2 significant events of the today I would like to ramble on through the Garden of Eden and talk about 2 forbidden fruits.

The forbidden fruits was one, the futile attempt to secure a mooring on the river exe, and two, radioation therapy prep.


I have ascertained that the banks of mud at low tide outside my window are all owned by the Earl of Devon from his rather large Castle just one mile away from my house in Powederham. The bottom-line is that a feudal Baron owns the river bed, yes our river bed, and to tie the boat on a mooring for 4 months would cost me nearly £350! You can imagine my disgust leaving the castle whistling the La Marseillaise and looking flat surface which to establish my portable gallows, come the glorious day! Now I have to question how the hell does this bloke, who up until 1997 had the right to sit in the House of Lords have the right to own a river bed! I am sure someone will tell me, but surely in the 21st century we have done away with feudal customs! Like trial without jury, locking people up without trial, torturing prisoners of war, and deporting people to almost certain execution. Sorry well had to be said.

I would like to set the scene about my house, today's picture is the view from my balcony which well help in my ramble, and this is a piece of writing I did last night in an email to a friend to capture the thunder storm.


It is1amm and I am sitting out on my balcony listening to the clanking of metal rigging, avocets and curlews. Its very warm tonight even with the river breeze, I live about 35 metres from the banks of the river Exe and the outside street light was just gone out and it was pitch black. The river is not giving any light and with the evocative sounds it is very spooky.

In just one hour things have changed, sea gulls are coming in land, which is rare for them this time of night do they detect a storm, they have better radar than us. The curlews have gone quiet and the tide is ebbing outwards this is nature at its best. I love living by the sea, as you know from my pictures it gives me energy and strength and also a sense of purpose in life. As the tide comes in and out I know that life will move on regardless of what happens. The church clock has struck one; just think of those people stuck in an inner London suburb with no hope. I do think I am lucky being alive.


The 2ndhugee event after I had calmed down from the 1st and been evicted with placards from the Castle was my appointments at the radiation mask setting. As I earlier posted in my battle. The mask is made of semi clear thermoplastic which gives you protection from the radiation rays, but also clamps you into position on the radiation machine. Today was a simulator, the purpose being lying me down on a hard flat bed, which for some reason reminded me of execution beds they strap death row people on in the States.

The bottom-line is you are strapped in, bolted down unable to move great for bondage role play, crap for the nerves and senses. The plastic is so thick, like the old fashioned NHS glasses, you cannot see out of it there you are bolted down rigid. The machine directs a beam of light across your face and the nurse retreats to a safe room behind glass you would see at a nuclear power station. You are all alone, strapped down and your life flashes before you/The aim is to plot the rays on the real machine on my mask whilst I am bolted to the bed, no make that a table, the term table too grand. The machine moves around your body and head and the nurse plots the treatment areas.

The thoughts that went through my mind were not of trivia but a realisation this is serious, the work that woman is doing in plotting my treatment is trying to save my life. I am in her hands. I found it hard the "assume the position" lying on the bench, as my neck had to be stretched back and arched. You see nothing through the Perspex just a blur a bit like my life. I lay down recalled the statistics, my chances of living 5 years are 50/50, just 50% ok for my age group a little higher, I recounted the dull argument why me and thought would I be here in 1, 3 or 10 years.

The end result was a serious of colour photographs of my head, my brain, and my neck which were fascinating to see at the end. The nurses love me asking all these questions and next week I will get you a picture of the mask I promise. I have to be honest I think the comment the lump was big and the area is big, was proved right today. 38 days I started my fight, today I saw how big it was, awesome!

Its difficult to be rational about cancer, something you know may kill you soon. All I know is that I am going to fight bloody hard to stay alive and annoy you all even more. I will find a release for my anger, and turn it into positive love for you all. I ask people to forgive my rantings, irrational views, comments but when preparing for the firing squad and hoping their guns will jam is not a position I chose to be in 6 weeks ago. But please I beg do not be rational with me, it will not work, I do not see things in black and white, please never benchmark against the norm, because I never will be and certainly am not now.

I better go tonight, there have been a few tears writing this one, not many but enough to start the grieving process. I have a huge day tomorrow I am off to Lambeth, it will not be a long day and I will taxi everywhere to keep safe. I have missed my Lambeth mates, and tomorrow I am sure will not only be a good working day but a hugely emotional day(sorry more tears) I suppose I am allowed to cry tomorrow because I know there are plenty there who will.

Night, keep attacking! X

PS Pain factor 2 out of ten from surgery, which is a sound improvement

1 comment:

Orpah said...

Us humble tenants still have to curtsy when we see him! :-)