February 28 2007
I saw my GP yesterday to refer me to a Doctor in London who is undertaking research into lung stents. I might be suitable I might not but nothing ventured nothing gained. Time is not on my side. 70% of people diagnosed with severe emphysema in 2002 will be dead this year. I reckon that I have a high probibility of leaving the planet within 2 or 3 years or if I'm in the last 5% by 2012. Chance or bad management will decide.
Otherwise I'm pretty healthy although I'm using oxygen more these days and feel better for it. I think of this disease as like climbing Everest. You start to feel the lack of oxygen getting into your lungs before you reach base camp and after that things get harder and harder. I am reading a book on this very subject of oxygen and altitude so I'll return to that subject. Another comparison I might make is living on death row. You know that your time will come but you are not sure when. You know that there is no chance of a reprieve. Now all of us have to die some time but when you have a disease that is now so severe that you could die at any time and certainly within a short period of time it is rather different I think. And there is no chance you can go out with a bang because you haven't the breath for it. All you can do is fight, be brave and strong as you can for those that love you. It is strange but I'm pleased that I have not got Alzheimer's disease - my life expectancy might be normal but to lose my identity and cause anguish to others is a fate worse than death - no pun intended.
The web site is going fine. It keeps me involved - there are at least 2 letters a day to answer and now the number of hits each day has climbed to over 200. So I guess it is helping others and that is a blessing for me and I will continue to add things and do my best as long as I'm able. I have now been made redundant as a patient representative for my old Primary Care Trust on a committee for Long Term Conditions. But I hope to be re-instated when they establish the new County one.
I know that I have ignored this site for a while to establish the main one. But since I've been encouraged to write a book by a well known pubisher I will write on this site at least twice a week. I know I've said this before but this time I mean it - honest!
MARCH 3 2007
Great day at last. Off to the sea on the scooter - most of the pebbles have been piled up against the sea wall exposing sweeps of sand. Guess that will have disappeared by the summer. The sun is gaining stength - it poured over me like pleasure. As opposed to rain that is. None of the beach huts have been re-assembled. I was number 60 on the waiting list two years ago but don't think I'll get one this year. In any case there is a coffee place at the end of the promenade.
Walked without oxygen up and down the garden a few times before my afternoon nap! Sounds dreadful doesn't it at my age BUT you know...! I usually get up late on dull/rainy days and go back to my university days by reading until 2AM. I'm really a night time person I guess. My new computer monitor arrived yesterday - a Ben Q 24" HD compliant(p) - extortionate price but well suited for photographic manipulation. No excuses now for not printing those digital photographs! Of course what happens when I upgrade one piece of equipment, I want to upgrade the rest! Those duo core processors with the GeForce 8800GTS look....well ummhh. Joan is back from her "Looking after Me" course for CARERS not me. I'd recommend these courses because carers often neglect themselves when caring for others and they do need support. And while they are away you can order all that lovely computer equipment....
MARCH 17 2007
Well I awoke quite happy today. My new web site is up and running and a number of great people have volunteered to be the first carers and COPD sufferers to place their contact details on it. In a year's time I hope that it has really established itself as a way of reducing the loneliness of both being a carer or a sufferer of this long term illness. Also the numbers of people "hittting" on my main web site nearly touched 300 in one day!!
The other reason for my good humour was that it was warm and sunny spring day. And so I made my first journey this year beyond the valley to a large garden centre. Now I was using oxygen - the Freedom 300 cylinder at 2 litres per minute - to walk around but have lost that self-consciousness that I had last year and because of that I think nobody seemed to notice.
I'd thoroughly recommend garden centres both for the elderly in general and those with breathing difficulties. Everywhere you look there are stone and wooden benches for sale that you can "try out". It gets a little stuffy inside so I found a great stone seat surrounded by fragrant flowers and basked in the sun while Joan and her daughter rushed around buying plants. Wonderful. I hope that after the cold spell forecast for next week has ebbed away then I can look forward to many days like this. The only problem is that the Freedom 300 cylinder (see main site) although light enough to carry around only lasts about 4 hours or so without a conserver. With a conserver it lasts 3 to 4 times longer but the trouble with that it only delivers oxygen when you breathe in and I often find that is not enough. Hence I am hoping for liquid oxygen in the summer.