The death of our friend Andrew last Tuesday cast a shadow over the rest of the week. We can't help asking ourselves what is worse - life coming to an end suddenly and unexpectedly, with no time to say goodbye, heal any rifts, let your family and friends know how much you love them, get your affairs in order, but not having to go through a long drawn out suffering of mind and/or body.....Or to be in Steve's position, living with an incurable illness, not knowing when it's going to flare up, how you will manage the pain, but at least having the opportunity to get yourself sorted out, make the most of the time you do have, enjoy and appreciate what remains of your life. I don't think there is an easy answer to that question. Given a choice, I think that most of us would prefer to die in our sleep at a ripe old age, having lead a fulfilling life and at peace with ourselves and the world.
With thoughts of mortality weighing heavily on our minds, we set out to the launch of the Artspool exhibition on Friday evening more out of a sense of duty than anything else. I wasn't expecting more than one or two of my pictures to have been hung and had no idea what to expect from the other exhibitors. However, as we approached what looks like an ordinary house and walked through the passageway into the studio space beyond, our spirits were lifted by the wonderful light airy space which greeted us. One whole wall was devoted entirely to my photos and more were scattered through the rest of the building, amongst an eclectic range of artwork including ceramics, glass, fashion, jewelry, paintings, sculpture, textiles and mixed media by 14 other artists. It was great!
The icing on the cake was bumping into two people we hadn't seen for what must be approaching ten years; the last time we had met was at a performance in the basement cafe at the Museum of Modern Art (or Modern Art Oxford as it is now called). Although almost all our friends know about Steve's mesothelioma, from time to time we bump into someone from the distant past that we have lost contact with and are then faced with the dilemma of what to say in response to the question "How are you?" I let Steve take the lead on that....He kept it light, alluding to some major changes in the last few years, but not going into detail other than to say that things are good and we are enjoying life, which is the truth but not the whole truth.....
We found ourselves in a similar position again yesterday evening, at a party to celebrate the return of Emily and Nick who have been traveling in the far east for a year. But this time the conversation with a complete stranger who had no idea about Steve's condition went on longer and deeper, fueled no doubt by generous helpings of alcohol. When it turned to future plans, Steve explained that because of the unpredictable nature of mesothelioma we now tend to live our lives three months at a time, rarely making firm commitments beyond the next hospital assessment. The person we were talking to had recent experience of loosing a parent to cancer so knew exactly where we were coming from and the conversation flowed naturally, without embarrassment, before moving on to other things into the wee small hours. We stumbled home at 2 am this morning, so glad that the world didn't come to an end as predicted!
So here we are today, a little bleary-eyed, but otherwise still enjoying life against all the odds, some 23 months and 6 days after Steve's diagnosis. The next hospital assessment is on 16 June - exactly two years post-diagnosis. No doubt the tension will rise as the date approaches, but this time we will have a distraction in the form of our photographic assessments in Bath to see if the Royal Photographic Society thinks our work is of a standard worthy of an Associate distinction. There are other things happening between then and now - a funeral, the next section of long distance walk and another exhibition opening - more of those in a future blog.
I want to finish today's blog with a dragon fly. If you have ever visited Debbie Brewer's website Mesothelioma and Me, you will know that the dragon fly is very special to Debbie. And any meso warrior will tell you that Debbie is a very special lady; even though she has her own battles to fight, she is always there for others. After a long period of stability, her mesothelioma is on the move. She is encouraging her tumour, Theo, to take another long vacation by getting treatment in Germany which has been so successful for her in the past. The chemo itself isn't novel, but the way it is delivered is. Chemoembolization is a procedure in which anti-cancer drugs are administered directly to a tumour through its feeding blood supply, which is then blocked so that the drugs do not get into the wider system but are effectively trapped in the tumour area. This allows a higher concentration of drugs to be in contact with the tumour for a longer period of time. Although this approach is used in the UK to treat liver cancer, it is not yet available for mesothelioma. Those who want to see if it will work for them must self-fund the trip to Frankfurt and the cost of treatment. Which brings me back to the dragon fly.
Debbie's daughter Siobhan has designed and produced dragon fly button badges which she is selling for £1 each to raise funds for Debbie's treatment. You can buy these buttons by following the link on Debbie's wesite (link on the right under We Are Not Alone ) You can track fundraising progress on "...and don't come back!" the blog for Theo's holiday fund (link on the right under Fundraising). Please visit and buy a button or two!
With thoughts of mortality weighing heavily on our minds, we set out to the launch of the Artspool exhibition on Friday evening more out of a sense of duty than anything else. I wasn't expecting more than one or two of my pictures to have been hung and had no idea what to expect from the other exhibitors. However, as we approached what looks like an ordinary house and walked through the passageway into the studio space beyond, our spirits were lifted by the wonderful light airy space which greeted us. One whole wall was devoted entirely to my photos and more were scattered through the rest of the building, amongst an eclectic range of artwork including ceramics, glass, fashion, jewelry, paintings, sculpture, textiles and mixed media by 14 other artists. It was great!
The icing on the cake was bumping into two people we hadn't seen for what must be approaching ten years; the last time we had met was at a performance in the basement cafe at the Museum of Modern Art (or Modern Art Oxford as it is now called). Although almost all our friends know about Steve's mesothelioma, from time to time we bump into someone from the distant past that we have lost contact with and are then faced with the dilemma of what to say in response to the question "How are you?" I let Steve take the lead on that....He kept it light, alluding to some major changes in the last few years, but not going into detail other than to say that things are good and we are enjoying life, which is the truth but not the whole truth.....
We found ourselves in a similar position again yesterday evening, at a party to celebrate the return of Emily and Nick who have been traveling in the far east for a year. But this time the conversation with a complete stranger who had no idea about Steve's condition went on longer and deeper, fueled no doubt by generous helpings of alcohol. When it turned to future plans, Steve explained that because of the unpredictable nature of mesothelioma we now tend to live our lives three months at a time, rarely making firm commitments beyond the next hospital assessment. The person we were talking to had recent experience of loosing a parent to cancer so knew exactly where we were coming from and the conversation flowed naturally, without embarrassment, before moving on to other things into the wee small hours. We stumbled home at 2 am this morning, so glad that the world didn't come to an end as predicted!
So here we are today, a little bleary-eyed, but otherwise still enjoying life against all the odds, some 23 months and 6 days after Steve's diagnosis. The next hospital assessment is on 16 June - exactly two years post-diagnosis. No doubt the tension will rise as the date approaches, but this time we will have a distraction in the form of our photographic assessments in Bath to see if the Royal Photographic Society thinks our work is of a standard worthy of an Associate distinction. There are other things happening between then and now - a funeral, the next section of long distance walk and another exhibition opening - more of those in a future blog.
I want to finish today's blog with a dragon fly. If you have ever visited Debbie Brewer's website Mesothelioma and Me, you will know that the dragon fly is very special to Debbie. And any meso warrior will tell you that Debbie is a very special lady; even though she has her own battles to fight, she is always there for others. After a long period of stability, her mesothelioma is on the move. She is encouraging her tumour, Theo, to take another long vacation by getting treatment in Germany which has been so successful for her in the past. The chemo itself isn't novel, but the way it is delivered is. Chemoembolization is a procedure in which anti-cancer drugs are administered directly to a tumour through its feeding blood supply, which is then blocked so that the drugs do not get into the wider system but are effectively trapped in the tumour area. This allows a higher concentration of drugs to be in contact with the tumour for a longer period of time. Although this approach is used in the UK to treat liver cancer, it is not yet available for mesothelioma. Those who want to see if it will work for them must self-fund the trip to Frankfurt and the cost of treatment. Which brings me back to the dragon fly.
Debbie's daughter Siobhan has designed and produced dragon fly button badges which she is selling for £1 each to raise funds for Debbie's treatment. You can buy these buttons by following the link on Debbie's wesite (link on the right under We Are Not Alone ) You can track fundraising progress on "...and don't come back!" the blog for Theo's holiday fund (link on the right under Fundraising). Please visit and buy a button or two!
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