Thoughts about Public and Private Days of Remembrance

September 11, 2002 - I knew I would find it difficult to write about this anniversary. The horror of that day a year ago still seems too vivid and fresh.

President Bush yesterday made a good speech at the Afghanistan embassy. During questions afterwards in a light moment he brushed aside reporters' attempts to ask him about his policy on Iraq, saying they would have to wait until his speech to the UN on Thursday, And he reminded us then what it was all about.

Tomorrow (September 11) will be a terrible day for many Americans - he said. Well, "tomorrow" is now today, and I guess he's right.

For all of us, the memory of that day September 11, 2001 will remain with us till the end of our days. How we first learned what had happened. The disbelief and the horror. I was lucky. I did not lose loved ones or friends. I know that many of you did. There is nothing that anyone can say to ease that pain. That loss has been a living nightmare for 365 days. The pain will not go away tomorrow, or next week when the rest of the world goes back to thinking about something else.

How long will the world remember?

At first my mind goes back to another tragedy in the last century - the Titanic. That was a disaster partly caused by the elements and partly by folly. That was 1912, 90 years ago. But September 11 was much worse than that. Your grandchildren may remember you as being really old, because you can remember where you were on that day. But the memory will live on much longer than that.

Christians still commemorate Good Friday, nearly 2000 years later. To those handful of people there at the time when their spiritual leader and guide Jesus was being executed it must have seemed that the world was coming to an end. For the christian faith, as we now know, it was only just a beginning. Jews still commemorate Passover, which celebrates the exodus of the Israelites from Egypt during the reign of the Pharaoh Ramses II, over 3,000 years ago.

As America and her friends mourn today, this first anniversary makes us strong. It keeps alive the memory of the loved ones and friends who died. Those who have suffered loss may feel some comfort from knowing that they are not alone.

September 11, is an unusual anniversary in another way, because in our society we are better at remembering happy things like birthdays or holidays like Thanksgiving.. This day, 9/11, helps us remember that at the end of life there is death. Those private anniversaries are different for us all, and on those lonely days we see the rest of the world go by and they do not see our sorrow.

October 22, 1999 - I get a phone call about 1 a.m. to say my young brother Charles has died. I can't believe it. We were only talking on the phone a few hours ago it seems. He was packing his case for a weekend vacation in Boston. We spoke on the phone several times that day, as we did every day. he was looking forward to making a lot of changes in his life when he got back, including working with me. He had tried it for a short time and enjoyed it. We were both looking forward to it. But he didn't know he was ill. He died of a sudden massive heart attack. For the next few months, like an idiot I comfort his friends and other members of our family and reassure them how happy he was in his last days. It's true. But while I try to cheer everyone else up with this thought I put off the process of my own grieving. It hits me very hard about 6 months later. There is something in my life which is gone forever, and nothing fills that gap. My wife and friends try to help, but I am in deep depression. I'm seeing my doctor for a health check up. My physical health is fine. But my emotional state is a mess. Prozac helps. It helps a lot. If I could worry now, I would worried that a little white pill can make so much difference. After a few months I can operate as a human being taking less pills and, then it seems safe to stop taking them.

August 4, 2002 - my young sister, Anna, has learned the results of her biopsy. Because she has had no symptoms apart from a few minutes loss of her speech, we were worrying more about the biopsy than what it might signify. An MRI scan a few weeks earlier had shown a small lump in her brain. The doctors said they didn't know what it was. Could be, she had had a small stroke without realising it at the time...

"You've got a glioblastoma multiforme type 4," the surgeon said. "It's bad, very bad. It's the most aggressive type of cancer, and because of where it is we can't operate. You'll see an oncologist in about 5 days and they will tell you more about it." Anna is stunned. Her husband Mark asks the question that you should ask when you have been told this kind of thing. "How long? Six months? A year?" The surgeon shakes his head. "I can't say, maybe three months." He goes away. A few minutes later a nurse comes along. My sister has made an excellent recovery from the operation, and they ask if she would mind going home that afternoon. They need the bed.

Our world has turned upside down. Anna says to me "You're the one who spend all his time on the web and is good at searching for things. Find out what a glioblastoma is. Find out if there any treatments. Find out if there are any survivors."

During the next few days and weeks I learn more than I ever wanted to know about this terrible thing. The web sites I visit now are not just computer sites, but a new world which I didn't know was out there:- Virtualtrials.com to find out about research in this area, Quackwatch to get a counter view on so called "natural" remedies. But the best one is Young Adults Surviving Glioblastoma. When I read out some of the personal stories from that site we both cry, but she is pleased to learn that some people do survive this thing. The long term survival rate for a GBM type 4 , as we learn, is about 1%, and "long term" means anything over a year.

We're learning a lot from the web. As well as increasing our vocabulary which now includes new words like Temozolomide, Melatonin, Tamoxifen and PSK, we're also learning the difference between Phase I and Phase II FDA trials. Some researchers are keen to get my sister into a trial. The reason? It's a rare condition. Less than 15 people per million population will get a GBM type 4. Researchers find it difficult to russle up enough people to take part in a trial. We look at the data and decide against it. The problem with being in a trial is that the sponsoring doctor will not tell you about any better treatments which may be available. Mixing drug treatments invalidates their results.

Later we learn that some people with GBM type 4 have survived for years confounding the medical profession. One of them has written a book which is due to be published in the middle of August. I preorder it on Amazon and have it sent directly to Anna. She can still read, but her speech is slurring and she can't say some words. Also she can't write any more. That part of her brain is affected by pressure from the tumor.

August 31, 2002 - "You must read this book" Anna says excitedly on the phone . "It arrived in the post this morning at 7 o'clock and I've nearly finished it. The author had the same lump as me, and he survived. Buy your own copy though, I need to keep this for myself." The book, Surviving Terminal Cancer by Ben Williams, does indeed give hope.

He believes that oncologists are not sufficiently up to date with the data about treatments in this field, and will typically prescribe a limited range of treatments, even though they know that they will not work. His theory, which he practised on himself, is that patients can increase their chances of survival by finding out more and using supplementary treatments. He advocates using a cocktail approach for chemotherapy, to avoid the growback of resistant strains of tumor, and just as important says that some pills and potions and foods can help boost the imune system. The problem is that some vitamins which are good at preventing the onset of cancer actually interfere with the operation of the chemo, and diulte the effect. So you have to be sure not to take those vitamins on the days that you're taking the chemo. Also many health supplement and drugs companies make a living out of selling things which provide false hope. Trying to decide which may work and which don't needs careful evaluation of research data.

September 1, 2002 - Anna lost her speech today and had a series of fits. An ambulance takes her to hospital. Because they know she has a tumor they do a new MRI scan. It shows bleeding in the brain. She may die tonight. It's a long night.

September 2, 2002 - I still have a sister. She is alive but can't talk. This is what she feared most.

September 3, 2002 - The lady in the adjacent bed died today of MRSA, the hospital killer bug. This will be a day her family remembers.

September 5, 2002 - Great news. Anna can talk again, although it's very slurred. Her thinking is still sharp and focused. She is pleased to learn that some of my customers in the US are praying for her. She reminds me what she wants me to do with the children, if she and her husband Mark both die. Mark tells her not be so ghoulish. We should cheer up because tomorrow they may be letting her go back home. I return to my car. The drive to the hospital in Brighton was 110 miles, but they are rebuilding their car park. When I arrived the waiting time to get into the car park was estimated to be 90 minutes. I can't wait that long, because Anna is seeing the doctors in a few hours to be fitted up for a radiotherapy mask. So I drive around and discover that every street in the area is parked solid, and signs warn you that your car will be towed away if you park in an unapproved place. So I eventually park down by the beach half a mile or so away and walk. It's a beautiful summer day, and sailing yachts are skimming across the water. It's hard to believe that this is the same world as inside the hospital.

September 10, 2002 - My niece Laura (age 5) was playing this morning with a new friend. We discovered a few days ago that her father has a friend who was diagnosed with a GBM type 4 about a week ago. Anna thinks that's a spooky coincidence. Anna and the other little girl will both start their first day of school next Monday (Sept 16). The school thought it was a good idea that new children should know someone when they start their first day. I remember my own first day of school over 40 years ago, and I'm sure you do too. It's a lifechanging time. Laura will remember hers too, but for another reason. The oncologist has said that because Anna's imune system is weak from the chemo, she should avoid contact with groups of people who may be ill. She shouldn't go to the school gate on Laura's first day. My sister is a fighter and is determined to make sure that Laura is not remembered as that girl in the class whose mother died.

September 11, 2002 - we remember today the thousands of people who were murdered in America a year ago. Our thoughts go out to their families and friends, and all the millions who have been touched by those events. That memory will not fade.

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