Sunday, 27 March 2011

How time flies

To steal a famous line from Mark Twain: "The reports of my death are greatly exaggerated."

I can hardly believe that it has been well over a month since I last posted on here. I have to apologise to all the many people who have enquired after my health in the meantime without getting a response. I simply haven't been able to keep up with everything that has had to be done since I came out of hospital, and being exhausted for about 20 hours a day hasn't helped either.

The situation at this point in time is that I am on antibody therapy as an alternative to chemotherapy. There are practically no side effects apart from permanent tiredness and very dry skin. I have to go to the hospital every Monday and have the drip running for an hour, so it's not too onerous.

At home, I am on the feed drip for a total of about 16 hours a day. There are still hopes that the leak in my "substitute oesophagus" will heal in the course of the time, although I'm told that it could still take months. In the meantime, the inability to eat, drink or speak is difficult to deal with. I suppose you can adapt to almost everything, and I've certainly been doing my best, although it's highly frustrating. I keep my mouth constantly rinsed with all kinds of flavoured drinks, ranging from coffee and tea to fruit juices, milk drinks and even ice lollies. At least my sense of taste is intact. I have an electronic speech aid that is supposed to enable me to speak with a voice like a robot. However, the technique isn't as easy as it seems and it needs a great deal of practice. I haven't had the energy to tackle it properly yet.

On the whole, I feel okay in myself. My weight plummeted from 75 to just under 58 kilos in the five months I was in hospital. That was probably the main reason for my exhaustion. In the meantime, I have managed to push it up just a little - to 61 kilos now. It's moving in the right direction, though far too slowly for my liking. I can manage a total of about 3,000 kilo-calories a day but that's about it. More than that and I start feeling nauseous.

So in summary, I'm okay, thanks mainly to the fantastic support I've been receiving from my sons, my hardworking sister-in-law Bea and, of course, the lovely Linda who has been a tower of strength for me. It's hard to remain patient but there's nothing else I can do for the time being.

I hope you are all doing well too. Now that I'm gradually recovering, I hope I'll be able to update the blog more often.

7 comments:

  1. Yay! Great to hear from you Tony and yes, the lovely Linda did keep us informed and put our minds at rest.

    Slowly slowly now and you *will* put that weight back on, and gradually feel less exhausted.

    You're amazing Tony and it's great to hear from you.
    Much luv as always xxxx

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  2. Good to hear from you again.You are doing really well although it is frustrating.Christmastime I could not even walk across the room without holding onto furniture and now I can walk upstairs without stopping so it does evevtually get better,honest.Glad you have such loving people around you.Good luck.
    Rose xxx

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  3. Wondering how you are.Hope you are coping OK.
    Rose xxx

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  4. Hi Tony,

    Still wondering how you're doing now?

    When you're ready we'd love an update

    Much luv xxxx

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  5. Hi TonyB

    Another one of your fans wondering how things are with you.

    TonyS

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  6. Hi
    Tony is marginally better, but as you all are aware its a very long and tedious process. Understandably he still suffers with overwhelming exhaustion, but compared to many weeks ago there is marked improvement. On my last visit he drove me around in the car - this was a GIANT leap forward ! I am seeing this weekend and will prompt him with a broomstick to update this blog !

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  7. Lovely to hear from you ,give Tony our love,we are so proud of him.Slow but sure wins the race.
    Rose xxx

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