10 June 2007
To My Friends 7
12 June 2007 : To
My Friends Collated
12th June 2007
For me it is always difficult to write when I’m feeling low. And I am feeling low at the moment. To put it bluntly, over the last couple of weeks what had been a solar keritosis on the left side of my head has deteriorated and become a squamous cell carcinoma which is growing quite fast. Furthermore, two more small lumps have appeared on my head and they also are growing quite quickly. One is in the left eyebrow and the other on top of my head. It is likely in my opinion that these will turn out to be merckel cell which is not so good since this is an aggressive form of cancer which responds best to radiotherapy and this is no longer an option. The net result of all this is that I am to have more surgery on Thursday (14th June) which will remove all of these and cover the surgery with one small and one large skin graft. I assure you I am not looking forward to it. I am by no means recovered from the radiotherapy yet so its all coming thick and fast.
As I mentioned above I am a bit low, depressed is probably the right word. This is partly caused by the tiredness that is part of the recovery from extensive radiotherapy and partly I think because the future is so uncertain. I have had to give up all my work in the meantime and so I am now getting focused on the things I need to do as my life deteriorates and, dare I say it is, probably drawing to a close. This is not to say that I will not be giving it all I’ve got, but the reality is that with immunosuppression I have very little to fight with. The truth of the matter is that if I was not immunosuppressed these things would probably not have developed in the first place. And yet without the immunosupression that goes with the kidney transplant I would probably be well dead by now or living a miserable existence on a dialysis machine somewhere.
The kidney transplant gave me five fantastic years which included travel in Europe and elsewhere and Julie who has been a wonderful wife, companion, lover and friend. I have also been able to strongly develop a system of supervision using role theory and the play of life which is now practised in many places throughout New Zealand and Australia. There are also people now trained to carry on the work. My major regret is that I have not written more although it seems to me that I needed to teach and practise in order to continue the development. My intention had been to write over the next few years as I withdrew more from the work. Who knows, it may still be possible.
In the meantime there is another small presence in my life. Two days ago I became a grandfather for the first time. Nathan, my eldest son and his wife Yulia produced a baby boy. They live in New York and having a baby there seems very different there than it is in New Zealand. Nathan says the level of expertise amongst the midwives was fantastic Yulia was booked into a birthing centre for 18 hours initially. That’s the norm. Yulia in fact took 36 hours but the baby is fine. He looks fantastic of course to this grandfather and Clare assures me that he looks exactly like Nathan when he was born. I personally think he looks like me.
The muse has deserted me at the moment and has been replaced by the God of fear and Anxiety, I think not so much about the surgery as about the recovery. I will lose the comfort of my CPAP machine for a while since I won’t be able to put the mask on properly and this is more of a nuisance than it might otherwise be since the humidifier in the machine tended to help with my very dry mouth – a result of the previous surgery and radiation therapy. So the dry mouth may prove difficult since it tends to wake me when it gets to a certain point which it does every hour or so. I also expect normal functioning, getting in and out of bed, toilet etc will be difficult since there is a large graft to come off my left leg. Time will tell whether my imagination is just running away from me or not. I expect to be in hospital for 3 -4 days and then home to be nursed by Julie.
Which reminds me Julie and I recently had the privilege of a week at Trinity Beach, north of Cairns. It was great to be there in the warmth in an apartment overlooking the sea. We could watch the sun rise from the ocean in the mornings, go for a walk on the beach and have a swim in the sea by 8am. The rest of the day we could just lounge around, sit by the pool or explore the nearby rainforest. It was truly a restful time and much needed. For me it was spoilt a little by my developing anxiety around what was developing on my head nonetheless, it was well worth the effort. On the way up we had two days in Sydney catching up with the people I have been training so that was also good.
Enough for now. I will write again when I have begun to recover from the surgery. There is no poetry now, only Thursday.
For me it is always difficult to write when I’m feeling low. And I am feeling low at the moment. To put it bluntly, over the last couple of weeks what had been a solar keritosis on the left side of my head has deteriorated and become a squamous cell carcinoma which is growing quite fast. Furthermore, two more small lumps have appeared on my head and they also are growing quite quickly. One is in the left eyebrow and the other on top of my head. It is likely in my opinion that these will turn out to be merckel cell which is not so good since this is an aggressive form of cancer which responds best to radiotherapy and this is no longer an option. The net result of all this is that I am to have more surgery on Thursday (14th June) which will remove all of these and cover the surgery with one small and one large skin graft. I assure you I am not looking forward to it. I am by no means recovered from the radiotherapy yet so its all coming thick and fast.
As I mentioned above I am a bit low, depressed is probably the right word. This is partly caused by the tiredness that is part of the recovery from extensive radiotherapy and partly I think because the future is so uncertain. I have had to give up all my work in the meantime and so I am now getting focused on the things I need to do as my life deteriorates and, dare I say it is, probably drawing to a close. This is not to say that I will not be giving it all I’ve got, but the reality is that with immunosuppression I have very little to fight with. The truth of the matter is that if I was not immunosuppressed these things would probably not have developed in the first place. And yet without the immunosupression that goes with the kidney transplant I would probably be well dead by now or living a miserable existence on a dialysis machine somewhere.
The kidney transplant gave me five fantastic years which included travel in Europe and elsewhere and Julie who has been a wonderful wife, companion, lover and friend. I have also been able to strongly develop a system of supervision using role theory and the play of life which is now practised in many places throughout New Zealand and Australia. There are also people now trained to carry on the work. My major regret is that I have not written more although it seems to me that I needed to teach and practise in order to continue the development. My intention had been to write over the next few years as I withdrew more from the work. Who knows, it may still be possible.
In the meantime there is another small presence in my life. Two days ago I became a grandfather for the first time. Nathan, my eldest son and his wife Yulia produced a baby boy. They live in New York and having a baby there seems very different there than it is in New Zealand. Nathan says the level of expertise amongst the midwives was fantastic Yulia was booked into a birthing centre for 18 hours initially. That’s the norm. Yulia in fact took 36 hours but the baby is fine. He looks fantastic of course to this grandfather and Clare assures me that he looks exactly like Nathan when he was born. I personally think he looks like me.
The muse has deserted me at the moment and has been replaced by the God of fear and Anxiety, I think not so much about the surgery as about the recovery. I will lose the comfort of my CPAP machine for a while since I won’t be able to put the mask on properly and this is more of a nuisance than it might otherwise be since the humidifier in the machine tended to help with my very dry mouth – a result of the previous surgery and radiation therapy. So the dry mouth may prove difficult since it tends to wake me when it gets to a certain point which it does every hour or so. I also expect normal functioning, getting in and out of bed, toilet etc will be difficult since there is a large graft to come off my left leg. Time will tell whether my imagination is just running away from me or not. I expect to be in hospital for 3 -4 days and then home to be nursed by Julie.
Which reminds me Julie and I recently had the privilege of a week at Trinity Beach, north of Cairns. It was great to be there in the warmth in an apartment overlooking the sea. We could watch the sun rise from the ocean in the mornings, go for a walk on the beach and have a swim in the sea by 8am. The rest of the day we could just lounge around, sit by the pool or explore the nearby rainforest. It was truly a restful time and much needed. For me it was spoilt a little by my developing anxiety around what was developing on my head nonetheless, it was well worth the effort. On the way up we had two days in Sydney catching up with the people I have been training so that was also good.
Enough for now. I will write again when I have begun to recover from the surgery. There is no poetry now, only Thursday.
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