I start today's blog with an apology. It's a bit of a self-centred whinge, probably a symptom of feeling stressed about going to the hospital tomorrow. When I next write it will be all about Steve - the results of his assessment and whether Leo is still sleeping 21 months and 1 day after diagnosis.
However, as anyone diagnosed with mesothelioma will tell you, the web of cancer cells makes its presence felt way beyond the body it is attacking. So to take my mind off Steve, today's blog is dedicated to those whose lives are affected by mesothelioma even though they are not the victim of the disease. We are the "collateral damage" to the asbestos exposure which happened many years ago and will eventually take our loved ones from us.
I've said it before, but it's worth repeating. Living with the mesothelioma time bomb means that every minute of every hour is precious, whether it's your life that's endangered or that of your loved one. You tend to live each day at a time and usually resist making plans and commitments too far ahead into the future. That sort of lifestyle is incompatible with a job where work is programmed well in advance and, in some instances, over a prolonged period. That's why I took a big decision last year to apply for "early release" from employment and in doing so, set in motion the long goodbye that will culminate in 12 days time. Today was a significant step forward in that long goodbye.
I've come back from Bristol with a folder of information about retirement, pensions, benefits, self-employment and such like. I've left behind my official name badge, the security pass to the building, a thank you present for the team that's supported me these last few years and many work colleagues that I will probably never see again. It feels very strange - especially as I'm still working very hard to complete the last report before the computer is returned and the phone line which linked me to the office is disconnected, and with it one of the support systems that has helped me get through the last 21 months.
I had intended to reduce my working hours gradually over the next five years or so in any event - a gentle slide into the next phase of life. However, Steve's diagnosis has prompted this more drastic action. I hope that very, very soon we'll be able to enjoy doing things spontaneously as and when the fancy takes us, effectively for the first time. Up until now our lives have revolved around school as children, academic terms as students, work schedules as adults and term times when we were parents of school age children - so it will be a real novelty to have such freedom!
However, it's difficult to get my head around that today, not knowing what will happen tomorrow at Steve's assessment and whether once more life will be timetabled according to chemo appointments. I don't want to sound negative, but I am acutely aware from following the lives of other meso warriors that the news is not always what you want to hear. That said, I take comfort from knowing that the fighting spirit is strong and the support from our family, friends and the meso community will be there, if we need it. We'll know soon enough...
However, as anyone diagnosed with mesothelioma will tell you, the web of cancer cells makes its presence felt way beyond the body it is attacking. So to take my mind off Steve, today's blog is dedicated to those whose lives are affected by mesothelioma even though they are not the victim of the disease. We are the "collateral damage" to the asbestos exposure which happened many years ago and will eventually take our loved ones from us.
I've said it before, but it's worth repeating. Living with the mesothelioma time bomb means that every minute of every hour is precious, whether it's your life that's endangered or that of your loved one. You tend to live each day at a time and usually resist making plans and commitments too far ahead into the future. That sort of lifestyle is incompatible with a job where work is programmed well in advance and, in some instances, over a prolonged period. That's why I took a big decision last year to apply for "early release" from employment and in doing so, set in motion the long goodbye that will culminate in 12 days time. Today was a significant step forward in that long goodbye.
I've come back from Bristol with a folder of information about retirement, pensions, benefits, self-employment and such like. I've left behind my official name badge, the security pass to the building, a thank you present for the team that's supported me these last few years and many work colleagues that I will probably never see again. It feels very strange - especially as I'm still working very hard to complete the last report before the computer is returned and the phone line which linked me to the office is disconnected, and with it one of the support systems that has helped me get through the last 21 months.
I had intended to reduce my working hours gradually over the next five years or so in any event - a gentle slide into the next phase of life. However, Steve's diagnosis has prompted this more drastic action. I hope that very, very soon we'll be able to enjoy doing things spontaneously as and when the fancy takes us, effectively for the first time. Up until now our lives have revolved around school as children, academic terms as students, work schedules as adults and term times when we were parents of school age children - so it will be a real novelty to have such freedom!
However, it's difficult to get my head around that today, not knowing what will happen tomorrow at Steve's assessment and whether once more life will be timetabled according to chemo appointments. I don't want to sound negative, but I am acutely aware from following the lives of other meso warriors that the news is not always what you want to hear. That said, I take comfort from knowing that the fighting spirit is strong and the support from our family, friends and the meso community will be there, if we need it. We'll know soon enough...
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LInda I know how much a scan result can completely turn your life around. And I know how the day before getting the results always seem to be the most difficult. Yesterday I received a good result - unexpected I must say, but I was so stressed that the whole day prior to getting the results I was bursting into tears at the drop of a hat. I’d rarely felt so fragile before. The fact that the radiology dept. asked me to come in for a second scan didn’t help my nerves. I knew a bad result would be a complete change of plans. I would have finished up work straight away. Stopped chemo completely and wonder where to from here. Luckily that didn’t happen but it is such an emotional roller coaster. And I am all too aware too how much it affects those close to me.
ReplyDeleteWishing you and Steve all the best for the assessment and know that what ever happens you warrior friends will stand strong in support of you both.
Anita xx