Another Year goes by

My last post was 12 months ago to the week and I am pleased to report that everything is going along pretty smoothly. It is 5 years since my diagnosis and life could not be better!

I had toyed with the idea of finishing up the Blog but my son Lachy encouraged me to keep it alive as it may just help a few people understand the condition they are dealing with. And within a few weeks of that conversation a good friend Geoff Daniel was diagnosed with AML and he is now starting the long gruesome journey that I have been on over the past 5 years.

I am still attending Peter Mac every 3 months for ECP treatment plus IVIG infusions. I usually back this up with appointments with Amit and my dermatologist.

At this month’s appointment Amit confirmed that my condition had indeed stabilised – with a planned long slow weaning off the drugs. This could take more than 2 years but Amit is confident that I have seen the worst of the skin disease – yipee!

I must say I was very happy to hear this as any worsening of my skin condition would be alarming. There are times at present when I have some trouble breathing due to the physical constriction of my tightened skin. It is like wearing a corset.

I am still on a range of steroids and immunosuppressants plus ECP and UVA light treatment which, along with regular stretching and yoga, appears to be keeping my condition manageable.

I regularly see a respiratory physiotherapist who has given me a range of breathing exercises in order to strengthen my diaphragm and improve lung capacity. Regular Lung Function Tests confirm minimal reduction in lung capacity which is pleasing.

We are spending most of our time on the farm helping our daughter Claire and partner Toby who have taken over the lease this year. They have dived in the deep end without any great farm experience and now run a 2000ha sheep farm.

Recently we took our new hybrid camper up to Queensland with friends and spent a week sailing around the Whitsundays. It was certainly a trip of a life time.

I am lucky to be able to fly regularly, play tennis, ride my Adventure motorbike with friends and jump on a mountain bike from time to time. I must say 5 years ago I certainly didn’t expect that life would be so good!

Camping on the Balonne River in Southern QLD.
Our hybrid camper was home for 6 weeks.
Sailing on the Whitsundays was a highlight of our recent trip up north.
All the gear but no idea!

9 thoughts on “Another Year goes by

  1. So thrilled for you Geoff and all the Hamilton family 5 years has gone by and look at you – you are indeed well and enjoying life surrounded by family and friends
    Who could ask for more.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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  2. Hi Geoff, it’s always so good to receive positive news – your email made my day. Sorry we missed you yet again on your QLD travels but promise you will never give up contacting us! Fantastic to hear that Claire is at home and that you are passing the baton in terms of farm management – Hughie would be proud. Love to you all, Chrissy & James

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  3. So good to hear your going well mate Massive effort ESP that skin condition, sounds like a right pain in the Go Claire and Toby, good on them having a crack at it. Your good man letting them have a crack I hear Dougal is off to or overseas broadening his experience, great to hear Fingers crossed I make Pete’s last ski trip next year, well says it’s his last but I find that hard to believe:)

    Beny Howard’s old man Dave, a farmer from wanterbadgery got diagnosed with leukaemia a few mths back and is in Sydney. It’s a bloody shock to everyone to see that one day your farming and next minute your in Sydney for god knows how long.

    Stay well mate

    Sent from my iPhone

    >

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  4. Geoff great to hear you have handled this amazingly
    Annette and I driving to Cajrns for Rotary cricket just left Ayr
    Some rain forecast so we may ge

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  5. Hi Geoff. Really nice to hear from you again and updating all of us. You are always in our thoughts and wondering how you are getting. Your QLD trip looks fabulous and I am sorry you can’t be with us on Saturday night for Will’s 60th party but hopefully we can catch up another time, maybe when you are in Melbourne or fly into us and stay. Welcome to stay any time as plenty of beds – boys all have flown the coupe..!! Love the look of your camper trailer get-up. What fun. enjoy the rest of your northern/warm holiday and send my love to Jan. lots of love Louey.

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  6. Well done Geoff. Keep up the fight. Sorry we couldn’t make it for a ski this year – next year will be just as good. Just need to get organised earlier.

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  7. Hi Geoffrey and Jan
    I just stumbled on your last post and I must say that it has made my day to hear you are travelling so well! Life for you sounds exciting, and it seems the family is enjoying life.
    Best regards to all
    Sue

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