Category Archives: Cancer

Thanks for all the fish – and farewell

Having had a good relationship with so many people that I have never met – on social media and in the comment columns of some of our (better) newspapers, I feel rather guilty that for the last six months or so I have gone very quiet. So I decided to explain all in this blog.

Day one: Friday the thirteenth. The thirteenth of March 2015 to be exact. This isn’t really day one but it seems the right place to start this blog.

So day one: a room in our hospital with four people being me (obviously) my wife Marcia (who many will know as she is a very popular novelist), a consultant nurse and a surgeon. It is his unpleasant duty to tell me that a recent scan has uncovered a tumour in the oesophagus just above my stomach, that a biopsy has indicated that it is malignant and that as things are I have a life expectancy of between four and six months.

Oddly, at the time I found could take part in a reasonably intelligent and unemotional discussion as to the options open to me. It was only later that I began to suffer from shock – and I think the same thing was true for Marcia.

The first item on the agenda was to take a decision: to operate or not to operate. Such an operation would involve some pretty formidable surgery which could easily prove fatal to a seventy-six year old man with a heart condition (plus problems in other areas which are showing the signs of age), would be followed by a long period of discomfort assuming I survived it and there would be absolutely no guarantee that it would be successfull. Did I want such surgery? Did I want to go away and think about it before coming to a conclusion?

Can you imagine how horrid it is to have to give that sort of news to anyone? How often do we stop and think about the way the medics have to cope day in and day out with dealing people in my position?

A quick look at Marcia and a prayer of thanksgiving that we understand each other as well as we do and can almost read each others’ thoughts to make sure that we had come to the same conclusion and I found myself saying, quite simply: ‘Thank you but no, thank you,’ or words to that effect.

And so home with a good deal to think about and with both of us fighting to remain unemotional (and, sadly, not always succeeding).

Day sixteen: having rejected surgery, the next stage was a PET scan and today there is a meeting with an oncologist (rather than a surgeon). The PET scan confirmed the presence of that tumour and also showed I have secondaries in my liver. Now for a different decision: to see if the cancer could be controlled using chemotherapy (the medics ruled out radiation treatment as being fairly useless in my case). This one is a more difficult decision than the first so we listen very carefully to everything that the oncologist has to say and leave it at that for now. We need to give ourselves time to talk this through and so we leave for home with a good deal to think about and with both of us fighting to remain unemotional (and, sadly, not always succeeding).

The facts are simple: if no treatment is given I shall die within months (although nobody can predict how many), if treatment is given that time will be extended by a few months (but, again, nobody can predict how many) and the treatment will have unpleasant side effects (although, because we are all different, nobody can tell exactly what they would be nor how unpleasant). So does treatment offer an extension of quality life or not?

The decision is not so simple but suffice to say that we decided against treatment as we felt that the repeated trips to the hospital alone would create more stress without taking into consideration the side effects and we feel that after thirty-five years of happiness it would be dreadful if the end was one of misery. Better that it be a bit shorter but as happy as possible under the circumstances. In short, time to move on.

Now, nearly a month after Day One, I am still finding it difficult to come to terms with what I now know but now I feel more able to share it with a wider audience (I have already explained the position on my regular Friday blog).

Before I finish there is one thing I would like to add. We have the most wonderful health service and the medical staff are fantastic. Of course there will be times when we want more from it than we get but I would ask those who have to wait longer than they want to in A & E or those who suddenly find that an operation has been postponed to ponder on the fact that for the vast majority of people on this planet there is no A & E and operations are not even a faint possibility.

I welcome comments from anyone who feels that they have a worthwhile contribution to make and I will respond to any comment that requires a response – until the time comes when that is no longer possible.

Will I write any more blogs here? I honestly do not know. Certainly I have no desire to write more than I have about politics. So – on the basis that this may well be my last blog – many thanks for all the fish and farewell.

The first crow – danger – (part two)

2013 09 16 Crow

Illness, if you remember, was the word to be explored in this, the second part of the first crow.

We all know what we mean by illness, don’t we? Sure? Quite – it’s not really that easy, is it?

Think about ‘speed’ in the same way. Speed, as such, is meaningless. It suggests that there is a continuum from not moving to very fast: stationary to the speed of light (if, as I understand it, that is the fasted speed possible within our universe) – and that is all. Nevertheless, we all know what we mean.

In motoring terms, when there is an accident it is usually assumed that someone was going ‘too fast’. We try to ensure that this doesn’t happen by using speed limits. These don’t work. Speed does not kill, as the proponents of fixed speed limits would have us believe. Vehicles kill and need to be carefully controlled to ensure they do not. It never amazes me to realise how very good at controlling these beasts we drivers have become. Sure, car designers have done all they can to protect the people inside the vehicles but that does little for the ones on the outside. Nevertheless, when you consider that the number of car/miles that are driven for every person killed by a driver failing to control his/her lethal beast it becomes clear that, on the whole, we are actually very good drivers. Not that anyone says so.

I think this is the first time I have said that and my guess is that it has never crossed your mind. Why should it? Good driving is not news: good driving goes unnoticed: you are a good driver (I’m sure you are) and I know that I am a good driver but over there I see a bad driver and something needs to be done about it. So we do what we can: we impose more regulations (usually lowering speed limits). What does this do to reduce deaths (or injuries)? 

Probably very little because it cannot take into consideration an infinite range of variables: the weather conditions, the state of the road (bad road engineering and poor maintenance is certainly the cause of some accidents although this is rarely acknowledged), the car (model and condition), the actions of other drivers, distraction caused by trying to read and assimilate instructions from numerous signs, light conditions and, of course, the ability and condition of the driver.

Speed limits achieve two things: in places they make people feel safer. I have asked some people living in a 20 mph zone where a fairly main road passes through the narrows of a typical Devon village what the introduction of the 20 mph limits has meant to them. Answers ranged from, ‘Nothing much,’ to ‘well, I feel safer walking down to the shop’. How many accidents were there before the speed limit was lowered? ‘None, but there were plenty waiting to happen,’ was the general consensus of opinion.

I said they achieved two things: the other is connected to attempts to enforce these regulations and especially by the use of cameras. Here the effects are totally negative. They are a cause of further friction between the police and the public at a time when trust in the police is at a low ebb whilst remaining essential in the running of a civilised country: they have become a form of sneaky taxation (as have car parking charges): they have done nothing to improve the ability of drivers to control their lethal vehicles.

Determining the right speed when driving is by a moment by moment appraisal of the overall situation and an almost entirely subjective reaction which (luckily) usually results in the right answer.

We see almost exactly the same problem with the word ‘illness’ which is a central plank of the National Health Service. Just what is meant by section 1(b) of the Secretary of State’s duties as laid down by the National Health Service Act of 1977 – ‘ … the prevention diagnosis and treatment of illness … ‘?

This matters when the end product is to be free of charge and the taxpayer is expected to meet the costs. Nevertheless, trawl as I may, I cannot see what that word is meant to mean in this context. The obvious definition, ‘Poor health resulting from disease of body or mind; sickness. ‘ is of no help. All it does is to move the problem down onto two other words: disease and sickness.

The insurance world has, of course, found the need to have a say in the matter as when it insures people against illness. They have found this a pretty difficult task and a surprisingly large number of claims end up in court simply because of the essentially subjective nature of this whole matter. Just to give you an idea of how subjective, the Association of British Insurers issued some guidelines in (I think) 2005 and this little extract gives you a feel of the problem. 

Please remember that the name of each critical illness is only a guide to what is covered. For example, some types of cancer are not covered. The full definition under each heading shows what your policy covers. You can ask your insurance company for this information. The model definitions are grouped into “core” and “additional” conditions. The “core” conditions are generally the critical illnesses most likely to happen. 

The “core” conditions are:

  • cancer
  • coronary artery by-pass surgery
  • heart attack
  • kidney failure
  • major organ transplant
  • multiple sclerosis
  • stroke

The “additional” conditions are:

  • aorta graft surgery
  • benign brain tumour
  • blindness
  • coma
  • deafness
  • heart valve replacement or repair
  • loss of limbs
  • loss of speech
  • motor neurone disease
  • paralysis/paraplegia
  • Parkinson’s disease
  • terminal illness
  • third degree burns

There does not appear to be anything like this approach in the NHS. Should there be? After all, we have defined the things for which we will charge (most of which are not included in the ABI’s list: dental care, prescriptions, spectacles but not hearing aids).

I leave you with three thoughts.

The first is that the answers do not lie in tick boxes or governmental edicts. The right judgements will be made by subjective assessment and therefore we have to find a way of placing trust in people to take those judgements and not to pillory them if every now and then they ‘get it wrong’. Now and then we all ‘get it wrong’.

The second is that the one things that seems NOT to be covered by the Act is injury. No definition of illness includes injury and yet we have no problem with expecting the NHS to treat our broken bones, sprains and gashes. Here the insurance world does things differently. Accident insurance is completely separate from Critical Illness insurance and whether or not you are covered will often be determined by what you are doing at the time and whose fault it was (assuming blame can be apportioned).

The third is that this blog does nothing to provide an answer. Sorry about that but it will require far wiser heads than mine to find a solution. I just feel we should be aware of the muddle at the heart of the NHS lest it is that muddle that finally causes it to collapse.

Three crows

Crow: Porlock Toll Road

I was visited by three crows yesterday. 

The first crow (DANGER) was a headline on The Times front page which read Alarm over ‘high’ death rate in English hospitals. 

The second crow (STRANGERS) was more complex but, keeping it as simple as possible, a great friend of ours (my wife is Godmother to her son and he is now in his late forties) underwent an operation yesterday. It was one of those rather horrible things where there was no real knowing what would be found and therefore what would have to be done. Scheduled to last three and a half hours it actually took nearly twice as long. We have yet to hear all the facts but all seems to be well as I write. Her partner had taken her to the hospital and decided to stay there until she came round. Despite being a community nurse (or possibly because she is a community nurse) she was terrified – and to make matters worse the consultant she had seen a few weeks back was not available and the operation was to be carried out by someone she had never met. Strangers indeed. 

The third crow (A SUMMONS) came via Twitter. One of the people I followed retweeted a tweet from Clarissa Tan. “Oh, here I am in the yurt of death, which I wrote about for @spectator (Coffin not in pic)” 

2013 09 13 Yurt

Three crows related by the single word “death”. I do not consider myself overly superstitious but I was brought up with the three crows (and with seven magpies – see below) and so I felt something was required. Let’s start with an extract from Clarissa’s piece – she has given me permission to do so.  To read the whole piece, click here.

I am in a yurt, talking about death. Everyone is seated in a circle, and I am the next-to-last person to share. The last of the summer sun is shining through the entrance. At one end is a display coffin of biodegradable willow — there’s also tea and coffee, and coffin-shaped biscuits with skeleton-shaped icing.

I am a reporter,’ I say. ‘I’ve come to cover this event. But don’t worry, I won’t report what you share in this yurt. Also, I have cancer. I have been in treatment for one year, but now the treatment is over. I take one day at a time.’

My wife, too, has had cancer. I say ‘had’ because in our ‘one day at a time’ life we consign that cancer to the past (as I do certain problems I have ‘had’) but I think I know exactly what Clarissa means. Every day is a gift to be treasured, lived to the full and ended on a note of thanksgiving. That sounds rather twee but I can’t help that: watching people wasting their lives away is terrible. This is especially true of the young who, thanks to matters generally outside their control, have so little now and so little to look forward to. How have we allowed this to happen? 

Many of the attendees are involved in the death business, as coffin makers and corpse tailors and funeral celebrants, because they feel our society does not pay enough attention to death. We avoid it, plaster over it, try to pretty it up and Botox it out of existence.

Even old age is taboo. As we all live longer and longer, so our actors and actresses, politicians and pop stars get younger every decade.

Why do we do this, when death is something that happens to all of us?’ lamented one woman.

Why, indeed? I’d done it too, until I discovered my illness. Then I thought of little else — about the fragility of life, the permanence of death. Friends sent me amulets, prayers, ginseng, ‘positive energy’. My heart opened, and something flooded in. What if death were not disconnection, but connection? What if we were just going to meet our Maker? Then death would not be severance, but reunion. It is not at all a fashionable point of view, but I believe in God — and a good one, at that. The belief fills me with healing, wonderful hope. It is the hope not that I will live. It is the hope that I am loved. 

My wife is a novelist: rather difficult to categorise her work (the nearest I can get is ‘contemporary women’s fiction). I never cease to be amazed at the number of emails and letters she gets from readers writing to thank her for ‘helping them through’ when they, like Clarissa, have been forced to look death in the face. Oddly, only one of her books, A Week in Winter, deals explicitly with cancer and in that one Melissa dies. Could it be that, like Clarissa, Marcia believes in God – and a good one, at that – and that this informs all her writing? It is the hope not that I will live. It is the hope that I am loved.

* * * * *

The crow family – the corvidae – have fuelled human superstition for many a long year. My earliest recollection of this was in, I think, the spring of 1945. We were all bundled into the Anderson shelter that had been erected in the dining room. The big glass doors to the garden were wide open (my mother believed that that was safer than risking bits of glass flying through the room) and the sun was shining. Suddenly there were four magpies in the garden and someone – mother? Grandmother? – recited the following:-

Magpies: one for sorrow; two for joy; three for a girl and four for a boy. Five for silver; six for gold and seven for a secret never to be told.

No doubt the whole incident would have been forgotten but at that moment the front door bell rang and my mother returned with a small boy in tow. Who was he? No idea. Why had he come? Still no idea. It is one of those childhood memories (I was nearly seven at the time) that you completely forget until something brings it back. That something was the arrival of yesterday’s three crows.