Cancer 8
Posted on February 22, 2023 2 Comments
Sometimes it is overwhelming. It is difficult to describe in words. It can reach a point where I feel I cannot cope, I cannot cope with my cancer, my sister’s cancer (she is in the final stage of life) and my heart failure, let alone the everyday stressors of life; yet I have to cope, There really is no alternative. Breaking down is not an option. Fortunately these feelings do not usually last long. Within hours I generally restore that unmoving lip.
Human resilience is incredible. Both the psychology profession and society general tend to focus on the negative: so many people have mental health problems, how we all need counselling or psychotherapy when something horrid or stressful happens, how we can’t cope with death and serious illness, how watching something on the TV can be traumatic (!). The reality is that most of us cope very well. I have spoken in a previous blog about social support, but I think we as individuals are – usually – incredibly strong and able to deal with most of what is thrown at us in life.
I realise that many people have genuine problems, and that some are unable to cope and do need professional help, but I am focussing on that large majority of us who usually deal with things pretty well.
In society we seem to have a problem with negative feelings and emotions. We want to be happy at all times. If we are a little sad we call it depression, label it as a mental health problem, and swallow pills or talk to psychologists and counsellors. Instead, much of the time, we should just realise that life is not just about happiness, it is about the whole range of emotions. We all experience death. We all experience illness. We all experience very stressful times in life. It may sound old-fashioned but I often want to say get a grip. You can cope. These things are normal. If someone dies we are sad, often very sad, but we eventually get over it and start living normally again. We grow to remember the dead person with fondness (or not!), and get on with life. We reflect back, remember, get sad, have a few tears, but these are moments. They should not take over our lives.
One area of my research is post-traumatic stress disorder (PTSD). I became interested when I was working with World War Two veterans. I found that there were some who had very serious problems relating to their war experience, and could suitably be classified as having PTSD. They experienced traumatic events, and they had difficulty dealing with those events. Memories would emerge at various points in life and cause serious problems that sometimes needed professional help. The problem now is that the word trauma is overused. Everything negative is traumatic. My dog died, how traumatic. I saw something upsetting on TV. How traumatic. I had an argument with my wife. How traumatic.
None of these things are traumatic. They can be genuinely upsetting but they do not constitute a mental health problem.
We have a large and growing language about the negative aspects of life. We should spend more time talking about the positive aspects of life. Some psychologists do discuss the positive aspects of life, but they are relatively rare. Most of us, and I am guilty of this, focus on the negative, while trying to make things a little better. It is laudable, particularly when someone has a serious problem that really does need the help of a psychologist, but it is often the case that people need to recognise that there are bad bits in life and deal with them.
It is often about the way we appraise our situation. Shit happens. Right, how are we going to deal with this? Deal with it and get over it. Having moments of feeling unable to cope does not mean I have a mental health problem.
Cancer 7
Posted on February 20, 2023 Leave a Comment
I have a date for my operation, Wednesday 15 March. Beware the Ides of March. Apparently this is the day in the Roman calendar when debts were settled. It was the date Julius Caesar (the real one, not just the one in Shakespeare’s play) was killed. He was stabbed by a number of senators, so I hope that the surgeon isn’t wearing a toga and that his knife is a scalpel rather than a dagger! I know, I have an ego problem, comparing myself to Julius Caesar. Anyway, back to the story.
One of the main complications with my cancer is that I also have heart failure and atrial fibrillation. It is probably rather careless to have two of the biggest killers in Western society at the same time, but hey, what’s the point of moderation?
It is a challenge to defeat them both, as I hope to do so for at least for the next 20 or 30 years. I have lived with heart failure for the last three years, taking a cocktail of drugs morning and night.
Furosemide is a diuretic which helps to reduce the build up of fluid in the body. It is meant to make someone want to urinate after about 30 minutes and then again after about two hours. Having a man-bladder, I tend to go about every 10-15 minutes for a couple of hours. I know every stopping point by the side of the road for a 30 mile radius.
Ramipril is used to treat high blood pressure by widening the blood vessels, making it easier for the heart to pump blood around the body, though since I have had heart failure I don’t seem to have any blood. Whenever someone wants to take a sample they end up poking the needle around in my empty arm for ages.
Rivaroxaban is an anticoagulant. People with an irregular heartbeat are more likely to experience a blood clot. It is also used after operations, so that could come in handy soon. It does make people bleed more easily, which is partly why I was not initially worried about blood in my stools.
Bisoprolol is a beta blocker used to treat high blood pressure and atrial fibrillation. It slows the heart rate.
At first my heart failure severely restricted my ability to do anything, but once I had a cardioversion I could get on and do most things. The cardioversion is used to treat atrial fibrillation. Basically, it is a large electric shock that stops the heart and restarts it again in rhythm. It is a bit like turning your computer off and on again to make it work properly. It is done under general anaesthetic. At first I thought I could do it under a local but then I saw a video. The procedure is that you are strapped onto a bed, cushioned at both sides. large electrodes are attached to your back and front, and then several thousand volts are pumped through your body. Seeing the response of a person to the shock is what made me accept the general anaestheic.
Cardioversion does not always work, and when it does work it can be temporary. I had mine two and a half years ago and my heart is still in rhythm. One worry I have now is that the cancer operation may mean my heart reverts to arrythmia . We will see.
Heart failure does change your life. Apart from trying to remember to take the drugs twice a day I am restricted in how far I can walk, and how long I can do any kind of physical exercise. It is an odd feeling. I do, say, gardening or walking for an hour and that is it, I suddenly can’t do any more. It is not because I feel exhausted or my limbs ache, I just cease to function, so I have to sit down and that is it for the day. I also get very tired at night, but whereas Cinderella could keep going until midnight, I fade by 9pm.
Sometimes I wonder about havng the stength to deal with these two diseases, but in the end there is no choice. Get on with it or disappear into depression. Depression certainly won’t help with my treatment so it is important to follow the wartime statement, now sadly abused by endless posters and word changes, but still powerful in its original form: ‘Keep calm and carry on’.
Cancer 6
Posted on February 17, 2023 Leave a Comment
Perhaps the best thing to come out of having a diagnosis of cancer is the support I have received from so many people. There are messages on social media, and many more personal messages. There are messages from friends and family, and from people I know less well and some from people I don’t know at all. They have been universally positive (including my favourite: ‘Excellent writing, you should get fatal diseases more often’), and just go to show that there is humanity in humanity, that despite all the awfulness going round (whether it is Ukraine or Brexit) people are – as Rousseau would have it – generally good.
Rousseau focused his arguments at the level of society rather than individual interactions, but he recognised that people are dependent on one another. He thought that this dependence was often problematic because in part we derive our sense of self from others and that this can be a negative restriction of individual freedom. I would disagree. That part of us the derives from others, from the behaviour of others, is crucially important. Alone we are nothing, we need others to be fulfilled. This doesn’t restrict freedom, it enhances it. One element of this need we all have for others, this gemeinschaft, is what in psychology we crudely call social support.
The following definition of social support is from the American Psychological Association: “The provision of assistance or comfort to others, typically to help them cope with biological, psychological, and social stressors. Support may arise from any interpersonal relationship in an individual’s social network, involving family members, friends, neighbors, religious institutions, colleagues, caregivers, or support groups. It may take the form of practical help (e.g., doing chores, offering advice), tangible support that involves giving money or other direct material assistance, and emotional support that allows the individual to feel valued, accepted, and understood.”
Another way of looking at the need for others is reflected in the book I am writing at the moment, which is about narrative psychology. There are chapters on the levels of narrative that we use, from personal narratives regarding how we think about ourselves to the master narratives that apply across all or most of the people in society, from driving on a particular side of the road to the words and phrases used in greeting. This is relevant to support because it shows that no matter what Margaret Thatcher claimed, there is such a thing as society. Society is a group of interdependent people who cannot fully function if they are isolated. If one person has a problem, others naturally want to help.
And it is a great help, knowing that people are thinking about you. My prognosis at the moment is looking more positive than it did (at least to me) a few days ago, but it still malignant cancer, the treatment will probably take most of this year (bye bye summer holiday) and it will now live with me forever even if I am officially declared clear, so folks, I will be depending on your continued support until the day I die!
It is not only that people are declaring their support, but they are declaring their willingness to help, and they are actually helping. It does leave me free to deal with both the practicalities that I have to deal with and my emotional state which, I must admit, does occasionally vary from the stiff upper lip approach that I like to retain both inwardly and outwardly.
Cancer 5
Posted on February 15, 2023 1 Comment
While most of the time I can get on with living reasonably normally there are moments, minutes, that are difficult. I lie awake at night, but I have always done that so that is no different really.
I have just spoken on the telephone with a nurse about my pre-op. I now have a date for it, so again it is becoming more real. My insides are all churned up, an area encompassing my heart, lungs, stomach, etc feel heavy. The neurotic inside me is alive and well, making me feel unwell. I know this feeling will go away in the next minutes, but at the moment I am sitting in a cafe writing this with my phone and my new folding keyboard, looking at the people around me who are living their normal lives, unaware there is a cancer in the room.
OK, I realise there may be other people in the room who have cancer, or people who know people who have cancer. I realise everyone has their own interesting or less interesting life stories, but cancer makes your own story somehow more important than others, it provides a focus around your own life. I see the woman at the next table fanning herself, probably going through the menopause. There is a family of four at another table. They look a bit hippyish and the parents probably treat the children a little too much like adults. There are older couples sitting drinking tea and eating soup, who presumably have been through everything life can throw at them – but today, now, with my churning stomach, I am the centre of things.
I would rather not be.
Cancer 4
Posted on February 5, 2023 3 Comments
Perhaps the worst aspect of the internet is the availability of information, some of it accurate, some of it less accurate. When someone gets a nasty disease it is common for them to search the internet and try to understand what is happening to them. I get it. I do those searches just like everyone else. We want to become knowledgeable so that we know what we are facing, have some idea of how to behave, and perhaps to have a reasonably intelligent conversation with our doctors.
While this may work to some extent it is not possible to become an expert in an area by reading a few webpages. The illusion of knowledge is a dangerous thing. We all know this implicitly. It is just that when we are faced with something difficult personally we somehow think it is different for us. It isn’t.
I am a professional psychologist, a trained scientist. I have at least 36 letters after my name. I have three fellowships. I work in a School of Medicine. I teach trainee medics. I read academic articles all the time. I can interpret theory and method. I have access to all the main academic journals and articles on cancer and bowel cancer. I can theoretical read them all.
What I cannot do is become an expert in bowel cancer in a matter of days, weeks or months.
The articles I have read have suggested many positive and negative aspects of the disease. I read one indicating that bowel cancer spreads much earlier than previously thought. I have read articles which suggest most people with bowel cancer die quite quickly (this was an easy one to interet as most people with bowel cancer are already old so they are going to die quite quickly anyway). I have read that most people with bowel cancer live for years. I have read about temporary and permanent colostomy bags, cutting out parts of the bowel, information about the right and wrong things to eat (I am pretty good at eating the wrong things), chemotherapy, radiotherapy, and so on. There are many words I have to look up as I don’t understand them. Sometimes when I look them up I still don’t understand them.
My point is that, even though I have all these qualifications, I am not going to become an expert on cancer, I am not going to know more than the people treating me. I might get to a point where I can have a half decent conversation about a particular treatment, but when I say half decent that is from my perspective, not the perspective of the person with years of education, training and experience who is having the conversation with me and is probably rolling his or her eyes, at least inwardly, and wishing that the internet had never been invented.
Michael Gove was wrong. I have not had enough of experts. I want more of them. I want to listen to them and take their advice. If I do this then hopefully I will receive the best treatment, become cancer free, and can stop writing this blog.
Of course there are exceptions. Experts sometimes get it wrong. Amateurs sometimes make surprising discoveries (usually in astronomy). But these are not the norm.
To be continued, hopefully.
Dr Nigel Hunt 