Wednesday, 3 November 2010

Life is so unfair...


Latest update...from my last Thursday meeting in Sheffield

My PET scan showed two further areas that are inoperable...

Liver secondary, inoperable lymph node near main artery in my chest, morbid lymph node in my pelvis which means the benefits to carry out surgery is outweighed by the potential outcome of the surgery. 

The terms inoperable, prolonging life and palliative care were duly noted...therefore I am to start a course of Irinotecan chemotherapy on Friday 05Nov at Weston Park - Sheffield, every three weeks, not sure for how long and maybe it was mentioned but my head stopped hearing things after the first few sentences.

I spoke with me mum whilst walking round B&Q after the prognosis, as a 46 year old boy, your mum still is your mum, if you know what I mean....We went for dinner at Mahmoods in Sheffield and to top off the day got a parking ticket as I didn't read the sign properly, dropped Nick off at the station and then we went round to share the news and had a group hug with Wend and Steve and then went home and drank lots of JD and coke, Just because I could!

Texts from my sisters...what must they be thinking?

Colm came round on Saturday (he lives in Petts Wood, Kent, jumped on a train to Matlock, stayed for just over an hour then went back, just to see us and give us a hug). Had a cuppa with Chris and Colin and some good solid prayer!

The Sunday Third-Space service in Hall Leys Park was strange to start with as I couldn't look at anyone in the eyes...strange because I usually like to hug everyone and just found myself looking at the ground - Colin and Michelle were leading the service and I heard them mention my name. They had one of those lanterns that you light and launch into the sky...we all held it and let it go into the clouds...moving and tearful but somehow I snapped out of staring at the floor (maybe it was because it was about me, me, me and me!)

Spoke with Richard my boss yesterday, Helen and JV - don't want to tell anyone else face 2 face!

Going to visit Minister Lyn on Thursday - If anyone has ever seen the Rocky films he always goes to see his minister the night before a fight for a blessing so why should I be any different.

Soup made in the freezer, ice cubes of juice to be made in the next couple of days and then I will be prepared...

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." - Deuteronomy 31:6

Much Love

Tony xx


  1. Tony,

    I can't say anything to make it all go away but I'm here whenever you need to talk, rant, laugh or cry....

    Biggest hugs as always (((hugs))) xxx

  2. Thoughts are with you mate, keep positive and get out on that bike.... Paul

  3. hang in there tony,
    I know it cant be easy but i believe in you and ya positive attitude that you have shown over the last three months that i have known you from cancer chat so come on lets see some more of it and lets face this together man, good luck and good luck and god bless.
    jeff (alias dad1929).


  5. I'm really Sorry for you Tony:(
    I just wish that the treatment goes well for you, I can't imagine how you and Fran are feeling now, bless you both and all your family
    hugs, Sarah xx

  6. I know it doesn't make it any easier for you Tony but those two words 'inoperable, and 'palliative' were the tags associated with my staging from the outset and now starting my seventh week of chemotherapy under the protocol of the Real 3 trial I am feeling fitter than I have done for ages and am truly enjoying life to the full not having the faintest idea how long I have left or how the quality of my life is going to change in the future. You may or may not remember from my blog and postings on the forum that apart from 'Goliath' the primary tumour in my lower oesophagus, my metastases are in my lungs, liver, spine, gut and neck and I have no idea whether or not the course of treatment will ever render the palliative condition operable in the future or even if the introduction of that option is something I even want to contemplate right now. I try not to think about it too much as it strikes me that in itself the operation can open up a whole new can of worms. Scans between the 4th and 5th of my three weekly cycles in about 4 to 5 weeks time will be the first indication of which way things are going and all I can hope for is to maintain at least the quality of life I am currently enjoying. The trial lasts for a maximum of six months depending on those scan results and what happens then I will face as with everything else along this cursed journey; one day at a time and crossing bridges as and when they appear over the horizon. It sounds easy and straight forward when put like that but we all know it is anything but and I can only sound so glib because as yet Goliath and his minions and the side effects of the forces we, the team, have out against them have not yet caused me anything which has not been readily manageable using medication and lifestyle adjustments and compromises. Thus I can remain positive and strong bu for just how long I have not the faintest clue. I do know that following the different stories such as yours and others with their various trials and tribulations has given me invaluable inspiration and all I cam ask is that we share tis infernal journey as long as possible as brothers inadversity and as big strong guys together in mutual support. That meet in Matlock with Anne has to be in our sights for early 2011; what do you reckon?

    Cheers and stick in there buddy, because without you this community would be without one of it's stalwarts

    David [Tony]

  7. o.m.g. you guys are an inspiration you bring tears to my eyes ,but my heart swells with pride at how you are dealing with this , how on earth you find the srength to face these challenges , and all i can give is my support and love xxxxxxx tony,s mum xxxxxxxxxxxxxxxxx