I am diagnosed: the anxiety is profound
29 January 2014
A couple of weeks ago I travelled to Stockholm to see an orthopedist who had previously treated me.
I went there with a diagnosis of a painful slipped disc, hernia, in the neck.
When I went back to Gothenburg the following day I did it with a serious diagnosis of cancer.
I do not have any particular memories of the journey back to Gothenburg. Only the stubborn gratitude that my wife, Eva, was with me.
A few days later, at the lung centre at Sahlgrenska University Hospital, I had it in black and white: it was serious. I had one tumour in the back of my neck and one in my left lung. The cancer could also have spread to other parts of my body.
I am now undergoing the last examinations before it will be decided upon which treatments I will receive.
My anxiety is very profound, although by and large, I can keep it under control.
At a very early stage I decided to try to write about this.
I have decided to write just as it is.
But I will do it from the perspective of life, not death.
I will do it now and then in the Swedish newspaper Göteborgs-Posten.
I begin now.
I have begun now.
My descent into hell; the waiting is unbearable
12 February 2014
After being diagnosed with cancer at the beginning of January, I endured a ten-day-long descent into hell. I remember that time as a fog, a shattering mental shudder that occasionally transmuted into an imagined fever. Brief, clear moments of despair. And all the resistance my willpower could muster.
Looking back, I can now think of it all as a long drawn-out nightmare that paid no attention to whether I was asleep or awake.
Then I began to clamber up out of the hole. I think that I am now back on ground level.
I am a child of the 1940s. I think that everybody of my generation automatically associates cancer with death. Even if I know, as others do, that cancer research has undergone an incredible development over the past 50 years, and that cancer no longer indicates the inevitable outcome, the old conception no doubt lingers on somewhere inside me.
I counter my lack of knowledge by reading as much about it as I can. And not least by listening to the doctors and other nursing staff I meet at the Sahlgrenska University Hospital in Gothenburg.
One day Eva, my wife, says, “You ought to write about waiting. Cancer diagnoses and cancer care involve waiting. And that is difficult for all concerned.”
This waiting can be hard, at times unbearable, but there is nothing one can do about it. This waiting is unavoidable, provided there are no bottlenecks to hold up the diagnostic process unnecessarily. Naturally, while waiting, one feels utterly helpless.
In my own case the ten or 12 days that passed while I was waiting were filled by a very special kind of fear: I have a metastasis in a cervical vertebra. Had it had time to spread into my brain? If so, I could well imagine that the battle was over even before it had begun.
When Eva and I sat with Dr M and she said that they had not found anything in my brain, that was a moment of great liberation. My cancer was just as serious as before, but that waiting – which at times had been horrific – had been rewarded with a piece of positive news. And I knew that doctors and other staff had been working as fast as they possibly could.
Within cancer care, the various dimensions of waiting should never be forgotten. I am convinced that so very many people suffer completely unnecessarily because they might not even know where to turn to in order to receive support.
Now, at the beginning of February, it is about a month since my cancer was discovered. In a few days’ time my treatment will start, with no holds barred.
So the first waiting is now over. Now the counterattack against my tumours will begin. To expand the military image, it feels as if the cavalry will emerge from the edge of the woods and launch an all-out assault on the enemies that have invaded my body.
I am immensely grateful that this is now happening. And that it has gone so quickly.
Another period of waiting is now beginning. But unlike a month ago, I am now the one going on the offensive.
I still wake up and think: this can’t be true
22 March 2014
It is now two months since I was diagnosed with cancer. I am already well into the second series of chemotherapy treatment. Thus far I have been spared any noticeable side-effects. The fact that a battle is taking place inside my body is more of a vague suspicion than a definite feeling.
I have many reasons to be grateful. That is a thought that occurs to me every morning when I wake up. The efforts made by the staff at the Sahlgrenska Hospital in Gothenburg could hardly have been greater, quicker or more efficient.
But of course nobody – neither I nor the doctors treating me – knows what my state of health really is. How effective the cytotoxins really are. In a few weeks’ time various checks will reveal more about that. Until then all I can do is to hope for the best.
It would be untrue if I were to claim that after the last two months I fully understand the implications of all this – of my cancer. I still wake up with a start during the night and think: this can’t possibly be true.
But it is true. In my case it would be unthinkable to deny or to repress the facts.
I am aware, of course, that a lot of people would rather not know details about what is affecting them. They are clutching at straws and clinging to illusions.
I can understand those people. But in my case that would be an impossible attitude. I want to know. Knowledge is what I believe in. The more I know, the better the resistance I can muster to repel the enemy who has invaded my body.
And besides, I’m not the only one in this position. The statistics are crystal clear: at least 50,000 people are stricken by cancer every year in Sweden. It is not difficult to work out how many that means per day, or per hour.
Having cancer is not just being afflicted by a serious illness: the possibility that it will end in death is always lurking in the background. But as far as I am concerned, knowledge is a necessary ally. Understanding precisely what is happening, and what might enable me to gather strength in the most appropriate way. Not knowing is to embark upon a flight away from the facts, and I have no desire to do that.
Linked with this “knowing or not knowing” is another aspect that is crucial. Something I have come to realise over the past couple of months.
There are so many people who are desperately lonely with their cancer. Who have hardly anyone with whom they can share their torments, nobody to discuss their worries with, the angst, the panic that so often looms large during the nights.
As well as carers and counsellors, everybody needs somebody they can lean on. I don’t think it is possible in the long run to answer all the questions on one’s own.
In my case I naturally recognise the importance of my nearest and dearest when it comes to enduring and remaining as strong as possible during my illness.
When all is said and done, the way we see others is always the way we see ourselves. No one should be alone with his or her cancer, their hopes and their fears.
The doctor chooses his words carefully
27 April 2014
I slept badly during the night of 23 March. I was worried about what was in store the next day. The following morning, I had x-rays and blood tests at the Sahlgrenska Hospital in Gothenburg. At about 11 o’clock I had an appointment with Dr Bengt Bergman at the lung clinic. It was the third time I had met him. I was to be informed whether or not the intense chemotherapy I had undergone had been effective.
By the time of our third meeting we were on the same wavelength. He knew how I thought and expressed myself, and I knew how he said what he had to say.
We met in his office after he had assessed the tests and x-rays I had been subjected to earlier that morning. I had now undergone half the fundamental chemotherapy. Obviously, my worry the previous night had been concern that the treatment had proved to be ineffective – what would happen next in that case?
Bergman chose his words carefully. He wanted to be precise. Not to say too much, nor too little. But the x-rays had been clear: the tumour in my left lung had stopped growing, at least for the moment, and might even have reduced slightly in size. The indications that there was cancerous damage in parts of my lymphatic glands had disappeared.
So the chemotherapy had been effective. There was no reason not to continue with the treatment.
Bergman passed a considered judgement: “We can regard this as a breathing space,” he said.
I understood immediately what he meant. The situation was positive, but we needed to avoid counting chickens before they were hatched. I was still seriously ill. Very seriously ill. But the chemotherapy had succeeded in halting the progress of the aggressive cancerous cells.
Naturally, when I left the hospital I felt relieved. A breathing space was certainly not to be sneezed at.
Bengt Bergman chooses his words carefully. That is the essence of confidence based on reality, and not on illusion.
Now, as I write this, almost three weeks have passed since that restless night on 23 March. Tomorrow I shall start the fourth and last session of chemotherapy in this first phase of treatment. I feel in pretty good shape, despite the fact that for a while my blood test levels were such that I needed a transfusion. But one of the main reasons why I felt in good shape was that I feel safe and secure in the care of Bergman and his team.
Is there anything more important for a cancer patient than a conviction that one is being told the truth and can believe the words that one hears?
I really don’t know what that would be.
Hoping for the best, preparing for the worst
22 May 2014
After nearly five months, the first basic round of chemotherapy treatment for my cancer is complete. It was concluded with a week of intensive testing. I’m preparing myself for the follow-up appointment with Dr Bengt Bergman using the only strategy open to me: hoping for the best and preparing myself for the worst.
But the chemotherapy has been effective, I’m told on the 12 May at 10.30am. Some of my tumours seem to have vanished altogether, others have reduced in size to a varying extent, and nothing new seems to have appeared. There are no guarantees where cancer is concerned, of course – but when in life is anything guaranteed? As far as my wife Eva and I are concerned, a sort of normality, which is timeless, is returning.
That evening we sit out on the veranda for quite a long time, feeling relieved and listening to the blackbird singing on our chimney stack. Our happiness is tranquil, silent. We don’t need to speak. The blackbird is imitating Bach. As for me, lacking the voice of the blackbird, I have previously sung the praises of the staff at the Sahlgrenska Hospital in Gothenburg. Their skills, their patience, their outstanding work and the caring way in which they treat their patients.
But I have also realised that I must sing the praises of cancer research – achievements in the past, in the present, and in what will happen tomorrow.
The fact that so much highly qualified research is being carried out is, of course, easy to understand. There are huge potential profits for pharmaceutical companies. The dream of being able to eradicate cancer is still a very distant prospect, but nevertheless practical reality illustrates what brilliant partial victories are being achieved all the time.
Naturally, I have to believe that deep down inside the individual researcher, or the team in which he or she is working, is a fundamental humanistic starting point that has to do with the patient’s wellbeing and the right to live for as long as possible. I am convinced that this is the case.
I don’t know what would have happened to me had it not been for that research. I can’t express it any simpler than that.
Now I can sit out in the evening and hear the blackbird singing. And think about all the researchers who have contributed to this happy state of affairs through their work.
Wallander is on tonight at 9:00pm on BBC4