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Monday, 29 November 2010

Lastest updates...

Dear All,

Sorry I have not updated my blog etc for a while, I was finding it quite tough to put thoughts into words and have only realised today that it was due to the positive and humorous messages that I had previously posted...my story was turning into a good luck story and then it just wasn't that positive and humorous any more!

In the past people on the cancer chat room have referred worried people to my story and it has helped people to realise there is a way to get through this, I wanted that to be longer than 9 months and continue helping people and if it came back I would just deal with it but that was in the future - now it is in the present and there was no getting away from the 'terminal' tag.

However, It has taken me about a month to realise the positive messages I have been given...

I have had several experiences over the past couple of weeks that have helped me find those positives:

1) I had a second opinion that I searched out at the London Oncology Clinic in Harley Street, all they needed was a referral letter from my oncologist with the latest scans etc, which was freely and efficient despatched - for a princely sum I wanted the consultant to tell me my current Oncology care team had missed something, after all that is why we have second opinions. Unfortunately he confirmed the treatment I was on was as it should be with the prognosis correct...however he did tell me this was not all that could be done...there were other drugs available that would not be a cure but would slow things down if not stop the progress on a temporary basis.

a)The potential to use Oxaliplatin and Raltitrexed rather than a Fluoropyrimidine (I am allergic to that) is a real possibility.

b) Funding should be applied for the next step for Cetuximab and Avastin at a cost of approx £40K per year!

c) If the above two work well at slowing things down sufficiently, localised therapy could be attempted such as selective internal radiation therapy (SIRT) where they inject radioactive beads into the liver tumour - unfortunately they still haven't got a similar treatment yet for the para aortic lymph node or the multiple hotspots in my pelvis.

2) I had another second opinion where Fran and I travelled to the University College Hospital (UCH) in London to see a top Oncology Professor - I had in my arsenal the previous second opinion but didn't plan to share it first as wanted to see what this chap had to say...

He examined me checked my body over for abnormal swellings and concluded almost word for word the second opinion 1). He did say that If I had any further questions I could call him any time and as this was on the NHS that pleased me alot!

3) I went to a healing evening at my one of the local circuit churches - it wasn't just for me as there are all forms of suffering present - I had my amazing main minister and one of the amazing local minsters pray with me and they layed their hands on me whilst they prayed...I went in with my head bowed and left with my head held high... I have the medical world looking after me and the higher spiritual world of my God and Jesus Christ our Lord with me...Whether you believe or not it is supporting me in whatever happens next!

4) I had my second review with my Oncologist on Thursday who had the letter from the private consultation and agreed with the complete package - she explained that they would have been going down this route eventually and we both agreed that if they threw everything at the cancer in one go all the ammo in their arsenal would be used up too quickly and that just wouldn't do as I plan to be around for a while yet. She is to apply for the funding now for the two newer drugs as that takes time and said they also had the potential to apply in two counties as I am under both Chesterfield and Sheffield Hospitals...She was also very interested to hear what the chap said at the UCH and should be receiving his report pretty soon to confirm what was said.

5) Fran as my EFT therapist and we have uncovered some deep routed issues that hopefully will remove any anger and negativity that may be contributors to my current situation - we combine EFT with Prayer and again I believe in this and it is giving me comfort at this part of my journey so if you don't agree with this then tough!

So a plan is available - I am going to be here for a while yet as long as I continue to respond to the drugs, so far so good the 2nd cycle of Irinotecan has only given me the worst hangover ever, has made me extremely tired, given me Dia and my hair is dropping out - as long as the three week cycle continues to plan i.e. 2 weeks of cells not dividing and 1 week repairing before the next cycle then all will be well until they scan me again in 2 months time after 4 more cycles.

So things are positive and now I know my plan and that death is not imminent (although as with everyone it is inevitable) I feel a little more settled that I can continue to project a positive message. However I have been told by more than one person that I have to slow down significantly and save most of my time for me...

Much Love to all - I learnt at the service that you don't have to be sad as this is part of my journey so I am going to try my best to cheer up a bit and get on with the next chapter.

Tony

p.s. I also passed my Mod 1 last Tuesday and have my Mod 2 to get sorted then I can ride my big bike!

3 comments:

  1. Great to read an update Tony....

    I agree that you MUST save time for yourself.
    Helping others is something you do so well but right now, you need to make YOU the priority.

    I'm glad that prayer & EFT are both helping you.

    Now hurry up and sort out Mod 2...how long will it take you and Fran to get to London on that big bike? :-)))

    Much luv and hugs - always here for you xxxxx

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  2. my big bro !! still gotta go on our sledging date !!many more shortbreads to eat !love ya all way much!!little sis and the hallways !!xx

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  3. So glad you've updated the blog at last.
    It does sound like you've managed to steer yourself through a right old storm, and found a bit of calm at last. No-one deserves that more than you. Keep updating us, please!

    And fantastic news about the bike! When's mod 2?

    Much love as always

    Shents xx

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