A few days ago Steve had a call from Charlie, one of the nurses who looked after him when he was on the Velcade drug trial. She's now one of the team of specialist Macmillan nurses who keep in contact with him between hospital assessments to see how he's doing.
When Charlie asked how things were, Steve replied that all is OK. He's not breathless or in pain and is, for all intents and purposes, leading a normal life. Had it not been for the diagnosis of mesothelioma in June 2009, he wouldn't be physically aware of what's been happening inside his body since he was exposed to asbestos many years ago. And that's how things stand today, 19 months since diagnosis.
Following the stories of others in his position, we are both acknowledge how very fortunate he is to be alive and enjoying life, not in pain or physically compromised to the degree that it affects day-to-day activities. However, the physical side of things is only part of the story....
Had it not been for the mesothelioma diagnosis, at this time of the year we would normally be planning our summer holiday and thinking about how to celebrate Steve's birthday in March and our wedding anniversary and Katie's birthday in May. We'd be developing the Oxford Studio business, perhaps working on designs for another stand at Chelsea Flower Show, running photography courses, or looking at ways to exploit Steve's graphic design skills. As the tenth year of working in my current job approaches, I'd be thinking about how my career might develop over the next few years. We would probably be looking further into the future, beyond retirement, now we are both in our glorious 60s......
A diagnosis of mesothelioma robs you of that long term vision and shared hopes for the distant future. For us, horizons tend shrink to three-monthly assessment periods. Any plans beyond the next scheduled visit to the hospital are always subject to the proviso "assuming Steve is still OK...." Every cough, every ache, every sign of fatigue is a reality check - is Leo stirring? In the weeks approaching the next assessment, stress and anxiety levels tend to rise and I find myself thinking, "what if....."
However, Steve's mesothelioma diagnosis has made us appreciate all the more so the things that mean a lot to us, and how important it is to make the most of this time. So we continue to do so - in between getting on with the less interesting, but nevertheless necessary, things that are essential to keep life ticking over!
There's a busy week ahead with work-related trips to London and Bristol, enlivened by the possibility of some social gatherings on one or two evenings and a definite plans for a get together with friends next weekend. In the meantime, the ironing basket is overflowing, but at least my tax return has been done....Now if Steve can just get his accounts to balance, we'll be two happy bunnies :-))
Sunday 16 January 2011
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Linda your words ring a bell with Ray and I as well as we live from 3 month to 3 month and hope and pray each scan brings the words "No change" We dread that my nasty will go on the move again and I have to have 2nd line Chemo.
ReplyDeleteI do plan Rallies though through out the year and hope I can always go on them as I love camping in our M/Home but it does mean we never go abroad because they will Insure me but they dont insure Mesothelioma.
I think I gain confidence though as being told 3 months to 2 years didnt seem to give us an option and here we are having had our Talc Op and Chemo and been given a chance to live on and that is a wonderful feeling even if it means we have pains in our Lungs from the op and the fact the Lung has been broken into for bi-op's and treatment.
I also have a broken diaphragm because of the weight of the 7 ltrs of fluid that was in there and they drained off and the wounds from the Keyhole surgery but Thats easy to put up with as It could be so much worse.
So Good Luck for your Steves next Scan and lets celebrate raise a glass --cheers
Love Mavis