It’s Alright, Ma (I’m Only Bleeding): On Cancer and Other Challenges

In the cartoon strip hagar the horrible, the eponymous hero, faced with a disaster, almost certainly of his own making, cries to the heavens, ‘Why me?’ Not unreasonably, the heavens reply, ‘Why not?’

At times of stress, humans frequently pose the same question. Being something of an ‘immunological Disneyland’, I too have considered the question but, perhaps, in a different context. My ‘why me?’ moment is less about the initial challenge, more about the outcome.

I should not be alive. Forty years of autoimmune disease have thrown up numerous challenges. These include ulcerative colitis, lymphoma, several other cancers, not infrequent bouts of septicaemia, the removal of the colon and a liver transplant. Each of these events has an independent probability of survival. The combined probability of survival is close to but greater than zero. The greater-than-zero caveat is obviously important. But probabilities other than zero or one have little heuristic value.

As ever, Bob Dylan provides the best summary. In the concluding lines of the song that informs the title of this essay, he says:

And if my thought-dreams could be seen They’d probably put my head in a guillotine But it’s alright, Ma, it’s life, and life only.

Surviving against the odds has enabled me to watch my children, biological and academic, develop and mature, to have a fascinating career and to attempt to repay some of the professionalism and support provided by numerous medics, a donor family, my family, friends and colleagues. One way of doing this has been to counsel others faced with the trials of cancer and/or transplantation.

A scientific background provided me with a base of knowledge. It also provided objectivity to what is deeply subjective. Over the years I have identified ten observations that helped me through uncertainity of life expectancy and I believe they apply beyond cancer to many aspects of life.

The Initial Challenge

We are all aware that life is a terminal condition. We naively assume that for us individually, the condition will develop slowly so that we will be fully functional, both physically and mentally, until a ripe old age when we will partake in what Raymond Chandler named ‘The Big Sleep’. For most this assumption is delusional. Cancer and other illnesses have a way of opening reality’s door.

After the initial shock, and even as a cancer recidivist there is always an initial shock, there really is no other option but to establish the flight path to the most successful outcome. Denial is not a viable option. It negates a wonderful opportunity to define the things that matter most. This, in turn, orders the priorities for the short term to establish the foundation for the longer term. I was not interested in the world trip, discovering a new philosophy or the like. Business as usual was my motto.

Train the Medics Early

It is important that your doctors realise that you are a rational person. You will make the best decisions with the best data. You have confidence in their professionalism. They must have equal confidence in yours and accept that you are a key player in the decision-making. This can sometimes be challenging.

When I was being assessed for suitability for a liver transplant, one of the tests involved a psychological assessment. This test was conducted by an eminent psychiatrist with whom I established an excellent rapport. I am sure that if we had continued for several sessions I would have been of great assistance to him. Unfortunately, time was limited.

I am equally sure that I was regarded as unusual. My view was that with my immunological history I was a poor risk for the rare resource of a donor liver. Future cancers were inevitable, particularly when I would be immunosuppressed. He may have thought this was taking scientific objectivity a step too far and decided that I was a suitable candidate for transplantation, albeit a peculiar one. I am very grateful to have lost this debate but have been proved correct in the need for oncologists to continue to practise their skills on me.

It became clear to me that the quality of the interaction is critical. Early establishment of the ground rules that enhance the partnership is essential.

Body and Mind

The treatment of cancer is draining physically and emotionally, certainly for the patient but also for practitioners, counsellors, family and friends. The psychological demands are as real as the physiological ones. I have no doubt that if priorities are set it is easier to stay focused and positive. For me this was the only way to play.

I think it is important to try to adopt a strategy that enables you not to worry about things you cannot influence or control. This can be difficult during treatment and, indeed, life. In some ways this has been the most important lesson learnt from my engagement with cancer. Previously I had been guilty of worrying about what I thought someone else should be worrying about. In this I know I was not unique. I am now aware that energies are only ever effectively spent and emotions usefully engaged when they are concentrated on issues and events that can be influenced. Occasionally, masterful inaction is the best policy. Few things are as urgent as some would believe. This, of course, excludes issues that are critical to me.

This approach has made me a better scientist, teacher, administrator and mentor than I would otherwise have been. Cancer has taught me that there is truly no point in worrying about the outcome of the next treatment or test. It has taught me to be informed, to prepare as well as possible and to respond sensibly to the results. This seems to me to be a reasonable template for all of life’s activities.

Poisoning with Love

Chemotherapy and/or radiotherapy will not replace cricket as the national sport. I felt terrible after each treatment and in the case of one cancer stopped treatment early. There was no doubt that while the drugs were killing the cancer cells they were having a similar effect on the patient. Subsequently, fairly extensive surgery provided a longer term solution.

The way in which people cope with each treatment and its aftermath is clearly individual. Having been ill for twenty-four hours after monthly treatments for six months, my craving was always for bacon and French bread as my first meal. Go figure.

I also felt that it was a luxury to put life on hold during treatment. Chemotherapy was always conducted on a Friday so that I could recover over the weekend and be ready for work on Monday. Clearly, each individual needs to determine an approach that works for them.

I managed to write a well-reviewed and influential book—a novelty for a scientist—while being in and out of hospital for cancer treatment, and I delivered one of my most memorable lectures a few hours after chemotherapy. The lecture was memorable in that it is uncommon for a lecturer to stand with, and periodically use, an initially empty ice cream container as a prop. The students were very understanding and the lecture had to be given to complete one section of the course. This lecture took place in the days before PowerPoint, when students attended and interacted in lectures regularly rather than occasionally.

The message here is: find a way to cope with treatment that works for you and try to stay active and involved.

Consider the Support Network

As a cancer patient it is very easy to be self-absorbed; all too easy to ignore that those close to you are also going through a difficult time. In many ways I feel that theirs is the harder task. I am sure that I considered it acceptable to be a man behaving badly when feeling tired and unwell. My family, particularly my wife, and friends were expected to be continually cheerful and positive and to play their ‘minor’ support roles while the ‘star’ could be as temperamental and obstreperous as he wished. This can be relationship-defining territory.

I believe I became quite manageable by cancer number three. Others may simply reflect that this is an indicator of how difficult I was during illnesses one and two. However, from three onwards, already strong relationships were enhanced by a better sharing process. If the initial relationships had been shaky I think illnesses one and two had the potential to be terminal in more ways than one.

I am a very self-contained person. Only in later illnesses did I comprehend how much the support network wanted to help, to feel needed and to be part of the process. My greatest benefit derived from knowing that they were there. I should have acknowledged that more strongly. My experience would suggest that the support network will be doing all they can to empathise with you. It is an excellent idea to reciprocate, preferably from the first illness.

Probability Theory

At various times during my immunological journey I have been told that I have a certain chance of a successful recovery. Experience tells me that the higher the likelihood of a successful treatment the more likely the medical profession is prepared to share the odds with you. Few in the population understand statistics or probability. If you doubt this, think back to the surprise registered when the one-in-a-hundred-years flood occurs two years in a row, or when ten heads in a row occur when a fair dollar coin is tossed.

If you are told that you have a 75 per cent chance of survival after a treatment regime, it also means that for the population in general, 25 per cent of those undergoing the treatment will be of historical interest only. The glass may be three-quarters full or one-quarter empty depending on your point of view. The percentages seem to take on a certainty of outcome for the individual: they are seen as deterministic, error free. In truth, the statement of survival probability is true at the population level but for the individual it is conjectural—has an error associated with it—rather than deterministic. The only probabilities that are certain at the individual level are zero or one.

My attitude has always been that the probabilities are irrelevant. Whether the chance of surviving a particular treatment is 90 per cent or 10 per cent matters not. I am going to survive. I think and act accordingly.

What Doesn’t Kill You Makes You Stronger

The title of Archie Thompson’s inspirational biography says it all. It is a truism that having to cope with cancer or other major life events is a challenging way of finding out your real strengths and weaknesses. They focus the spotlight on individual characteristics. I have found out a great deal about myself, my relationships and what really matters to me in life. I believe those I have counselled have had a similar experience.

In some ways the response of individuals is unpredictable. I have seen those I had assumed to be rocks crumble; others display an internal determination that had never been previously apparent. No one way of adapting guarantees an outcome, and genuinely the journey can be more important than the destination.

Adaptation is important. Finding the correct technique sees you through and calms the emotions. For example, during numerous visits to the operating theatre my thoughts are always the same, perchance the ‘little sleep’ turns out to be the ‘big sleep’. As the anaesthetist prepares to administer the needle, I think of my definitive arm ball that dismissed the opposition’s gun batsman in a cricket grand final. I could devote several pages to the subtlety of the delivery and the Machiavellian intent behind it. However, this one special outcome assures me that the operation will be equally successful, and if it’s not, well, what a great final thought to have.

I realise that this is a rather sad reflection on me. Why one ball out of a lifetime of memories? I am really not sure but it has worked superbly thus far and I think having a focus is the main thing. It matters less what the focus is.

Adaptive Strategies

Evolutionary theory states that successful organisms have immediate fitness and long-term flexibility. That is, they are well adapted to their current environment and have the capacity to adapt to environmental change. If the balance between the two is inappropriate, species go extinct. I feel a similar strategy applies to dealing with cancer in the short and longer term. You have to get through the initial treatment and then adjust to the realities of remission.

When I counsel people who are coping with a diagnosis of cancer, the first point I make is that I am there when needed. The person I am working with/looking after will be consistently in my thoughts. However, I emphasise that I will not be proactive in making contact. I have a similar approach in more general mentoring roles.

I take this approach as I am aware that I needed to be the one to decide when to externalise my thoughts, doubts and triumphs. I was aware that I needed times for space, times to be crowded. If the former applied, there was nothing worse than well-meant interference.

I think an effective counsellor or mentor has to be available, be prepared to listen and hear, offer honest and consistent advice, and have the capacity to empathise with the fears and aspirations of their partner in the journey. Often experience initially allows them to be the guide but, with time, eventually to become a co-conspirator in a program to produce the best possible outcome. It is important to acknowledge that as long as the association is valuable it should continue but that it will continue to evolve. Understandably, the emphasis of a person undergoing treatment is on immediate fitness. Typically, interaction is maximised at that point. However, I feel it is critical to try to focus thoughts beyond the immediate. Long-term flexibility and long-term adaptation help to extend the relevance of the outcome. Being reactive to the needs of the partner, I feel, gives them a true sense of ownership of their journey. Advice can be offered and it can be accepted or rejected. They then have to accept the responsibility for their decisions.

Five Years to Live

Treatment for cancer achieves a good outcome if the patient goes into remission. This is not quite the same as a cure. For many cancers, if remission lasts for five years, the likelihood of that particular cancer recurring approximates the likelihood of the cancer arising in any individual of similar age and constitution in the population. At this time the condition could be considered cured but there is still a probability of recurrence. Caring physicians track the progress to the remission period and, for some cancers, beyond with considerable enthusiasm. I still see the doctor who treated me for lymphoma every six months some twenty-eight years after the original diagnosis. Similar reviews occur with three other groups of medics for other cancer and autoimmune conditions. In the case of the lymphoma specialist the meetings almost resemble a social occasion. His examination is as professional as ever but we consistently discuss the state of the world and decide on perfect solutions beyond the ken of mere politicians. I am not sure how either of us would cope if one or the other decided that six-monthly reviews were no longer necessary.

Some of those I have counselled cannot wait to cut the cord to the doctors as soon as remission occurs. My experience is that well-established professional and personal relationships should continue to be nurtured.

Hang in There

There are always challenges and, potentially, periods of despair. Things can be tough but overcoming difficulties is much more satisfying than experiencing a dream run. Even in the most overbearing circumstances I am confident that it is possible to achieve quality. By achieving quality, quantity has a way of looking after itself and a sense of perspective is achieved. That sense of perspective must be realistic. No matter how dire the circum-stances, optimism is essential. However, reality bites, and the ‘only a flesh wound’ optimism of the progressively dismembered knight of Monty Python’s Holy Grail is somewhat misplaced. Yet we only get one shot at life, even if I sometimes feel I have had several, and it behooves us to not go quietly. I know that I have learned much from the experience of each of my cancers and associated illnesses. Sometimes the lessons have been hard. I hope that my responses have been appropriate. They have certainly been honest.

Copyright John McKenzie 2011