The Life and Times of Anthony Samuelson

I have neglected this web site for nearly a year. There is a very sad explanation. My wife Carol, who I loved like crazy, died on 9 May. Some of the story is told in a little memorial video that can found on YouTube here. Carol was very poorly throughout 2006 and 2007. The chemo treatment for her brain tumour made her very tired. She was due to start a third lot of chemo in February 2008 but just after the new year she collapsed and was rushed in to the Royal Free Hospital in Hampstead.

I got her home on 28 February but by that time it was clear that she would only live for another few weeks. The National Health Service suppled a hospital type bed, a hoist, a wheelchair, medication, nurses and carers. My role was as chief carer. I counted out the pills and measured out the medicines in the bottles and gave it to her four times a day. I did all the cooking and fed Carol’s meals to her spoon by spoon. I looked after Carol through the night. All this was exhausting but not something that I would have ever wanted to hand over to any other person in the world. I slept in a bed next to Carol’s, which I had raised by adding an extra mattress. By pushing the beds together I was able to hold her hand. I slept with my mobile alarm under my pillow so that I could make sure she was ok in the middle of the night. One of the hardest things to deal with was having to sometimes sit in with visitors and make conversation with them. Carol was so out of it that she could not respond to shows of affection let alone talk to them and someone needed to be there to protect her while making the visitors feel that they had been decently treated. Anyone who has been in the same situation will, I would imagine, have had the same experience. The hardest thing of all was towards the end - when it became apparent that Carol was in great discomfort and, for all anyone knew, in pain - getting the painkilling medicine in the quantity needed as quickly as needed. She could not tell us what she was going through, we could only guess. When she came home from hospital she could indicate yes and no with a thumbs up and down. Eventually all she could do was wince and groan and jerk-up the one knee that she could move when she was being washed and something hurt her. Which sometimes happened however gently the carers handled her. (During the entire eight weeks Carol never had a single bed sore.)

For obvious reasons there have to be very strict controls on painkillers and the home environment is less able than a hospital or a hospice to react in real time. Eventually I told the doctor and the nurses that I felt that I was out of my depth. Things then moved very quickly and within a few hours a bed was found for Carol in the North London Hospice where, over a period of a day or two, the diamorphine dosage was increased several fold. Carol died eight days later.

Throughout all this Carol’s three daughters were very supportive. I used to say that whenever I opened the door children and grandchildren fell in. The last sign that behind Carol’s gaunt face there was still a loving mind was when a baby’s lips would be pressed against hers and she would make a sort of kiss in response.

In the Spring of 2005, before Carol’s brain tumour got going again, we both made what are called living wills. In the event, the fact that Carol had made a living will made no difference. No one thought for a moment that it would make any sense to prolong her life. To do so would have required a peg to be inserted in the wall of her stomach, removed every so often to allow a pipe to be inserted and nutrient to be pumped in, the peg then replaced like a stopper in a sink. I am almost ashamed to say, however, that short of a peg I did everything I could to keep her going. Not just me but the doctor and the nurses and the carers. When Carol started to refuse solid food the Doctor prescribed fortified drinks. These come in half a dozen flavours and contain everything necessary to keep body and soul together. While still in hospital Carol had developed a problem with her swallow and I used to spend hours at a time getting her to drink small amounts via a 100mg syringe pushed through her lips. Eventually, for whatever reason, she began to clamp her teeth together and the procedure became even more prolonged. Near the end she would take only water and I would sometimes spend around an hour and a half in the middle of the night getting her to sip 200 to 300 mg from the end of a syringe. I used to say to myself, thinking of the living will which says that she was not to be kept alive by artificially provided food or drink: “I ought not to be doing this.” But I kept on doing it all the same.

One of the provisions of Carol’s and my living wills is that everything necessary should be done to make available any organs or tissues that would help some living person. I was informed by the hospital that under European protocols the organs of patients who had received chemotherapy treatment for cancer could not be used in transplants. The exception was the cornea of the eyes. The day before Carol died I telephoned the Moorfields Eye Hospital and asked them if they wanted corneas. They replied saying that they were desperate for them. I passed this information on to the doctors at the hospice but after Carol had died I was told that the cornea could not, in the event, be used. This would have made Carol very sad. I have subsequently discovered that the risk to a recipient is very small and doctors are less picky in the United States. If I had my time over again I would have gone down this avenue. If anyone who is reading this is confronted with the same situation I hope that they will find a home somewhere in the world for whatever can be harvested in good time. It is too late to do anything after someone has died. And if they do manage to find a recipient Carol’s eyes will not have perished along with the rest of her in vain.

I would also say to anyone who is reading this: If you have not made out a living will you are downright stupid. And if you have not donated your organs after your death for the benefit of some living person in need of them you are not just plain selfish, like as though someone had given you a box of chocolates and you had eaten them all on your own, but guilty of selfishness of the highest possible order. In one single crass act of inhumanity you will have shown that you never deserved to live in the first place. Of course, in between these actions there is forgetfulness and putting off to tomorrow and so on. But, if you have read this posting, these excuses will no longer avail you. Particularly as you will find the Form of Living Will, that I cobbled together from various versions on the Internet, here.

I had no inclination to blog about all this while it was all going on, or about anything else, and so this website was left to its own devices. After Carol died there was the funeral to attend to, which was adjudged by everyone to have been a great success as funerals go, and doing the video took all of eight weeks - the learning curve for Final Cut Express being very steep. From being someone who could happily work far into the night I became very listless, and took to reading the newspapers for three hours every morning, watching terrible movies one after the other on television and going to bed early and endlessly surfing the internet far into the night for news with a lap top resting on my chest. My resolution for 2009 is to snap out of it and getting this web site going again is in advance of lots of other things that I am minded to do.

My next posting will be about the Bernard Madoff Ponzi scam with some proposals that I hope will be of assistance to the victims. I shall also be putting my long dark mornings spent with the Times and the Daily Mail to use and my aim, here also, will be to assist the victims. Which, as Pogo might have said, is us.