Well Guys got to that lonely place in my mind again so must be pi **ed.
Been told I only blog after the first bottle - count your selves lucky - I get very outspoken after the second one !
So here goes - may manage to make sense of this myself later - So a new Year and New hopes for all of us maybe ? I want you guys to enjoy 2011 and every Year after - but being honest - we Know some of us may not see that many - but as my lover told me - its not the quantity - its quality that counts - OK made that up ! Was lost in long forgotten dreams xx
Not really sure if more crap happens at Christmas and New Year or if it is just a contrast to jingle bells and all the Carols - its supposed to be a time of rejoicing, loving and family gatherings. But for some of us its a time of pain and reflection - but the the world cannot know that maybe - we live in our own bubble in Mac land.
Some of us only have family gatherings to discuss care at home or even hospice ! maybe not a Seasonal subject I know but maybe one we need to face at some stage - some wish to spend their last days in comfort among the family - some like me want to be alone at the end.
Not sure, reading that back sounds a bit selfish - hope I have a few years yet and know the pain relief is getting better all the time - I am not scared of death honest - what really will scare and hurt me is if I see the pain in others eyes, people I love hurting to see me in pain or breathing my last.
Off to see my consultant on the 21st - OK want to discuss a few things with him this time - reached a few decisions since I saw him last time - appointment changed a few time so may be 4 - 5 months since I saw him the last time - need my PSA level to see how active the cancer is - usually hovers around 2 - 2.5 - He is Good and always calls a spade a spade - he tells me the bottom line - he understand I need that.
I have until now accepted my prognosis and good with it - some get little or even no notice so I am in such a good place - 5 years sound great - this week realised I am 3 years from DX - where did that time go - hell it was a couple of weeks ago ! Not really upset - what do those bugger know - going to live forever as I have always believed - maybe just to prove them wrong - Running out of cash now - if I out live the prognosis - can I sue for breach of contract maybe ?
My decisions - not New Year Resolutions honest ? OK one of the leading cancer centres in the UK is Christies - they just opened a new wing and treatment centre. I attend The Royal Oldham Hospital where my Consultant is based - the only treatment I get is hormone injections every 3 months - but seems to be holding it at bay for now so i am good.
They are about to 'Open Christies at Oldham' - new treatment centre - I want to ask about further treatment or volunteer for a drugs trial - know the drugs trial at best is a 50-50 gamble - maybe get the placebo or the drug maybe ineffective - but unless we take a chance can treatments really move forward ?- maybe not my time - but your son or grandson could benefit.
Without live drugs trials we cannot move forward. make no mistake I am selfish and want a cure for me !! - but OK just as long as someone gains something from it.
Had a couple of spare hours today, read most of the recent blogs on Mac - you know what - I was in tears - we the patients do post - but maybe 80% are from Carers or Ex-Carers - they really do struggle looking for support, information or just people to listen and understand their pain. For so many they are is so much pain out there - they do not look for sympathy but asking how they can help us while ignoring their own pain. They want to share our journey and support us at every step - while hiding their tears in case we are upset - now maybe that is a definition of true love
Then there are the bereaved who have walked our journey with us - we leave them to cope alone - and they feel so alone and empty - What they will not realise maybe for years is they were there for us when we needed nothing more - they held us when we hurt - they hugged us when we felt despair - they told us they loved us when the world seemed so empty, they lost sleep just staying up and holding our hands - talking even though they thought we were unaware - we did hear and it was so good to hear - honest - maybe just a bit sad we no longer were able to return those loving words except with a look - but know what - some of you could read our mind by looking into our eyes and you knew we understood and loved you back.
I did notice the response to so many blogs came from the same 3 or 4 people - know its hard when you are hurting yourselves but maybe others need to think back to when they were new and needed comfort - even if its just a one liner saying you understand - it really does mean so much to the Newbie - remember how hard it was to post that first message please - we have all been there - and we are The Mac Family I thought ?
All My love and Hugs to those I know and to those friends I have yet to Meet
OK gone off at a tangent again - better go as I am so tempted by that second bottle - promise just the one glass - honest - trust me xx. Nite Guys xx
John xx
