Ever since I came out of hospital (three years ago) I have several times been asked if I would be writing up my experience of cancer. Until now I have always said that I would not do that, for several reasons. Although I have no problem in talking about my experience, my reluctance had mainly been because I did not want to alarm people. Not all cancer patients go through what I went through.
Another reason for my hesitating to write it up had been because I have ended up where not all patients are privileged to arrive. A strange thing about my cancer, Burkitt’s lymphoma, is that it usually does not come back once it has been completely cleared. How lucky I am that my consultant can tell me that I am now unlikely to see my cancer again. I wish the same good fortune could be shared by all cancer patients. Nevertheless, it may be that other people can gain something from hearing that a very serious cancer can be survived; can even be beaten. And the treatment of cancer is getting better every year. So I have, after all, decided to write about my rather extraordinary journey.
Finding that I had cancer
We were due to leave for New Zealand on the 10th December, 2011, but I had been having slight discomfort in my stomach – for a month or so before. My GP at the time had examined me and had decreed that this was a flare up of my existing hiatus hernia. But, a few weeks later he said it might be gastritis. Being concerned not to risk spoiling our trip to New Zealand, followed by four weeks with our daughter and grandchildren in Sydney, I decided to cut out any foods or liquids that might exacerbate my gastric condition. I therefore decided not to have any wine at all.
After about 7 days, I declared proudly to my wife (Margaret) that she should also try to go without wine. I had lost ten pounds in seven days. Fantastic. But she didn’t think it was quite as fantastic as I did. No one should lose that amount of weight in such a short time. She wanted our GP to investigate, to rule out the possibility of cancer. As we had only ten days to go before leaving for New Zealand, the GP was able to arrange for me to have an endoscopy and a colonoscopy within the next few days. On the following Tuesday I saw a new GP to discuss the results from those recent tests and we were told that there was “something there.” It was therefore arranged for me to come in the next day for a blood test.
When I woke on the Wednesday morning I was suddenly feeling more ill than I could ever remember having felt before. I told Margaret that we should not wait until my appointment for the blood test. I felt that I had to get within immediate reach of a doctor, even though I didn’t have an appointment. We therefore went in to the morning surgery, saying that I was willing to wait for any doctor who was able to see me. I was prepared to wait all day, if necessary. The new GP (from the previous evening), who happened to be on duty that morning, took one look at me across the waiting room and insisted that he see me straight away. I have no idea what he noticed, but he discovered that my pulse was running at 220. Not good.
I was immediately transferred, in a wheel chair, to an ambulance that had been called; and, within minutes, I was taken to the direct admission suite of the Royal Free Hospital (RFH), where a crisis team was already waiting to deal with me. Then, for some seven hours those doctors worked on me to bring my pulse down to a safer rate. They even tried using pressure points, and whatever else; but not before they had tried the more usual treatment of digitalis, or whatever. I heard them prescribe the usual dose, followed by a double dose, and then I heard them say: “We’ve never tried this before, but I think we should try doubling again.” Eventually, I was taken up to the heart unit on floor 10 of the RFH, where I was linked up to all manner of monitors, with something like 14 wires attached to me.
I remember that I was sweating a lot. Also, for some reason, I was left in my day clothes – for quite some time. I can now only assume that this may have been in order not to put me through needless stress in getting me into a hospital gown. It seemed like several days before I was washed. Eventually, being embarrassed by how much I then smelled, I apologised for this to a junior doctor. But he kindly replied: “You don’t smell bad. You smell quite nice.”
I think it was on the second day that I met my consultant, Dr K. She was very straight with us, and it soon became clear that, after I had been through various scans, I not only had a lymphoma but I also had a number of significant blood clots in my lungs. These would have to be treated alongside my cancer, but the treatment was going to be very complicated and I would have to remain in hospital for some time. The initial chemo I began to receive had been a preliminary treatment, this being administered through a mechanically-controlled pump, monitored by a lovely Portuguese nurse called Manuel. He was very attentive, and he knew to act immediately when I reported to him – half way through the chemo being pumped into me – that I was becoming extremely dizzy. He said that my body was clearly not able to take this chemo and he stopped it straight away.
We learned the next day that there was by then a more accurate diagnosis. I had Burkitt’s lymphoma. This was far advanced, stage four, and we were told that it was also very aggressive. However, Dr K. explained that this was not necessarily a bad thing. As the cancer would be growing very rapidly it would also be more vulnerable to the treatment, but they would have to use their most aggressive chemo in order to take it on.
On my second day in hospital we discovered that the lymphoma had closed off my stomach. This meant that I could not be given any food by mouth. For the first month I received only a saline drip; I never understood why I could not be given anything more nutritious than that until the second month, but throughout I totally trusted the team’s judgement. In all I lost something like 56 pounds in 56 days. A fantastic diet for losing weight, but not to be recommended. I became Belsen-like in my thinness, my legs just bones. But the interesting thing about it was that I never once felt hungry.
Mostly, I was very well nursed. And sometimes I was lucky enough to be looked after by those who were truly dedicated to nursing. It was easy to tell that, and I would then always tell them: “You are a really good nurse.” I wanted them to know that.
However, there was one nurse who seemed to have no sensitivity at all. On one of my first nights in the heart unit I was not getting to sleep. I wanted to ask for another sleeping pill but didn’t want to buzz the nurse. Perhaps I could ask when he next came in to see me, which was usually every hour or two. When he eventually came it was about 1.0 am. I was then firmly told “no sleeping pills could be given after midnight.” How absurd, I thought, as I was hardly going to be driving a car the next day. But, No. So, I was left to get to sleep, or not, for the rest of the night.
Then at about 3.0 am, having just dosed off to sleep, this night nurse came back to see me. He had a tube in one hand and said that he was going to have to insert this into my nose, as my stomach had to be drained of any liquid that might collect there, now that my stomach had been closed off. I asked why it had to be done there and then, as I had only just got to sleep. He said that in the notes it stated that this tube should be inserted “as soon as possible.” But could it not have been left until the morning? No, it had to be done there and then. So, this nurse shoved the tube down my nose, and did this so roughly that my throat subsequently became ulcerated, which continued to trouble me for all of the two months that the tube had to be in my nose.
After a week or so in the heart unit, I forget exactly how long, I was transferred to the lymphoma unit where I was put into a single room. I then remained in isolation throughout, to preserve sufficient sterility while my immunity remained low or zero. At such times, any visitors who came to see me had to be equipped with sterile gloves and an apron; and mostly they kept to a safe distance from me. We got quite used to this.
In preparation for my main chemo treatment, which I was told would be four courses altogether, I had to be given a special line which was inserted into a vein. This line was multiple and was to be used for giving me the chemo, but also (I think) for giving me saline and for taking bloods as often as necessary. That procedure initially went well. But when I was about to start the first really aggressive chemo treatment, a duty doctor came to see me before leaving the hospital for the weekend. It was 6.0 pm. When this doctor looked at the line, which had been inserted to a point very near my heart, she noticed that it was forming clots. “That line must come out immediately.”
The junior doctor who came to remove the line then told me he was very impressed that a doctor about to go off duty had recognised the problem. He said: “that was a very good spot.” But the next problem was to find another suitable line (multiple) and to find someone suitably trained to insert it.
In the meantime, Bishop Peter Wheatley (then Bishop of Edmonton) came to see me to give me what I thought of as the “almost” Last Rites. Actually, it was the “unction of healing”. I told him of the line problem and that they might not be able to get my chemo started until Monday, giving the cancer free rein for another several days. He said: “We’ll just have to pray.” Almost immediately after he’d said that, someone came into my room to tell me that they had unexpectedly found someone still in the hospital (being then late on a Friday) who would be able to insert the line. So, all was well. I said to the bishop, “That was the quickest answer to prayer I’ve ever come across.”
When I started that chemo, the first full chemo, I didn’t know what to expect. It was very strange. I found myself sinking into a state of such low energy that every movement seemed to require of me more energy than I felt able to summon up. That deep lethargy was absolutely the worst thing about the treatment. Fortunately, however, I never once had the experience of nausea that one so often hears mentioned in relation to chemotherapy. The doctors and nurses were marvellous. They kept me completely protected from nausea throughout my entire time in hospital, my five months there. I wish that all chemo patients could be similarly protected from nausea. Also, I was never once in pain.
After some days I was given a shower, sitting in a chair. This was my first full wash since being admitted. It was glorious. But the next time I was showered, for some reason I didn’t understand, I was left sitting naked on the chair (forgotten), only partly dried, and I became progressively cold. Eventually, when a nurse did come back, I was shivering so much that I couldn’t control it. By then I was suffering from hypothermia, so I was wrapped completely in tin foil. It felt as if I had been prepared “oven ready”, as with a chicken. For some days the tinfoil was included in the makeup of my bed. It made a huge difference.
At some stage I was very fortunate to be given an airbed as there was a risk that I might develop bedsores, which fortunately I never did. I was also treated to the luxury of at least three pillows, even though I learned that these were in rather short supply. My treatments, I was told by Dr K., were extremely complicated as I had to be treated for the blood clots in my lungs as well as for the cancer. For the clots I needed to be given blood thinning treatment, which would reduce one of the two blood clotting systems in the body. But I then would need to recover from that before I could be given the next chemo, which would reduce the other blood clotting system. If I was depleted of both clotting systems at the same time there would be a risk of my dying from internal haemorrhage. These complications meant that the doctors had to keep a constant watch on my various blood levels, choosing the most opportune moment for each next step of the treatment: for the chemo or for dissolving the blood clots.
Margaret noticed that, for the first two months, I was too ill to know how ill I was. An example of that became apparent when I dropped something from my bed, in the night, and I didn’t want to call for help. Surely, I could get out of bed to pick it up myself. But, once I was standing on my feet (the first time for quite a while) I immediately became extremely dizzy. That was the last thing I knew. I was later found, unconscious, lying on the floor. No one knew exactly how long I had been there, and I certainly didn’t know.
I was frequently tested, for all manner of things, with different kinds of scan; heart echo, MRI, X-ray, C-T scan and whatever else. And my blood was tested daily. This blood was usually taken through the multiple line in my arm. But sometimes this became blocked, so the nurses had to put a cannula into a vein. Unfortunately they had to use my veins so frequently, for one thing or another, that they began to have difficulty in finding any vein that would work. I was told that this was because the chemo had the effect of shrinking my veins, making it increasingly difficult to take blood in that way. And sometimes a nurse ended up digging into my veins trying to get blood. This was the only thing that was really painful, throughout my time in hospital. Strangely, there were some nurses who were still expertly able to find blood at the first attempt, and yet others regularly had problems over this.
Several times I was found to be in need of a blood transfusion. Altogether, as I recall, I received at different times a total of 14 units. It was extraordinary knowing how many people had donated blood towards my treatment. What a gift.
For most of the first two months, looking back I now realise, I had been mostly in a kind of hibernation. I was sort of suspended this side of sleep but only fully awake and alert when I had visitors. And one of the many things Margaret was doing for me, throughout, was to handle the frequent requests from people wishing to visit me. It was a huge help knowing that I would be visited, but also knowing that I was being protected from too many visits on any one day. I often had just one or two in a day, each person knowing that I might only manage about half an hour or so. Quite often it was so good to see these people that I would manage longer, but then I would find myself slipping back into being drowsy or falling asleep while they were there. Amazingly, Margaret never missed a single day during the time I was in hospital, in coming to visit me.
Some days I was caught into such a deep lethargy that it felt as if there might not be sufficient energy available to sustain life. On one such occasion the sense of being drained of all energy was so complete that I could not dare to sleep until I had made sure that Margaret would be able to find my wedding ring, which had to be removed. I had lost so much weight it was falling off. Only then could I give in to sleep, feeling that I might not wake.
There were several periods of time when I was faced with the real possibility that I might die. In fact, during those times when I felt able to concentrate enough to write on my iPad, I worked out details for my funeral: mainly the music. But I was in no way afraid of dying. I felt completely accepting of it. The only thing that really mattered was that I should live long enough to see our grandchildren again, and they were not due to come to England until July. In the end I didn’t leave hospital until 23rd April. But that still gave me time before they came, for me to adjust to being on my feet again and being back at home, all of which took adjusting to.
Our daughter, Bella, was in Australia with our four grandchildren. The youngest, Iona, was three when I was in hospital and she had no memory of me, so Bella brought her (along with Arthur the eldest) so that she could have at least some memory of me – in case I died. They were in London for about ten days, which was wonderful.
For the first six or seven days, when Iona came to visit she just stood at the end of my bed. Mostly she was staring at the strange sight of her grandfather in bed, already with very little hair, with tubes into his arm, a tube up his nose and sometimes with oxygen as well. She was silent and shy. But about a week into the visit, she came to stand beside me (un-prompted by anyone) and she put both of her hands on top of mine, which was on the bedside rail. She then stood there, gazing into my eyes, unblinking and silent. It was like a healing, a laying on of hands. At the time it really felt as if she was willing me to live, and maybe she was. It was a magical moment that I have treasured ever since.
One of the things that had most preoccupied Bella when I first went into hospital was: “Will they know who Dad is?” She kept asking this, which began to worry me. Not knowing what we could do about that, I suggested to Margaret that she bring in a copy of my last book, Learning from Life, which could be put on my bedside table. If anyone showed interest in that, they could get some sense of me as having been someone before I became a hospital number.
Unexpectedly, that book came to be very useful to me later on. For the first two months, or more, I was so low in energy that I felt completely unable to concentrate on anything: no books, no papers, no TV and no radio or CD player. As mentioned already, I was mostly in a state of hibernation. But a time came when I began to remember Bella’s concern, and I found myself thinking: “It is not just do they know who I am; do I know who I am?” It felt as if I had completely lost touch with my former self, feeling now reduced to this sick person in hospital, fighting to stay alive.
One day, when I was again wondering who I was, I saw the copy of my own book beside my bed. I remembered that I had loved writing it. Just maybe I might begin to get back to reading if I could read some of my own book. This may sound very self-preoccupied but it did the trick. It helped to get me back in touch with having a self, and who I used to be before my cancer.
We were not yet through the wood with my treatment. I used to be visited most days by the physiotherapists, trying to help me recover strength in my arms and legs. Some days, when I woke early, I would lie in bed doing such exercises as I could manage. But there were some days when I had to ask them to leave my exercises for another day. I just didn’t have the energy to exercise anything.
One day I woke early to find that my left arm was causing me great pain. The strange thing was that this arm was in spasm – sticking straight up – but I could not release it, to bring it down. Nor could I move anything. I found that I was completely paralysed, unable to move anything except for my eyes; and I could not make a sound. I lay like this for about two hours until a nurse came in with my morning pills. “Sit up”, she said, “it’s time for your pills.” I could not make any response. After repeating her command several times, and not noticing that I was in crisis, the nurse proceeded to push all the pills into my mouth and then pushed a bottle in to make me swallow them. Fortunately I still had a swallowing response.
Although I experienced this pushing of pills into me as a terrible assault, it was strangely helpful in one particular way. I was so angry about this I struggled to protest, and that struggle somehow began to join me up again. After beginning to be able to make a few groaning sounds I found that my nerve connections slowly spread to my head and then to my arm. At last I could lower it and begin to get the blood back into my hand. The pain began to subside.
No one seemed to understand what had happened and neither did I. And this same paralysis happened again a few days later, again for about two hours, but I was then not so alarmed as I knew I had come out of it before. But the first time was an extraordinary opportunity to experience, first hand, the terrors that locked-in patients must go through. I subsequently begged the doctors to note that if I ever got stuck in that state I wished to have DNR (do not resuscitate) recorded on my notes.
One day, when the physiotherapists were again trying to help me to recover use of my legs, I was standing at a zimmer while trying to walk on the spot. I then found that I began to feel dizzy; very dizzy; very, very dizzy. I told the physio of this, as it increased, and then I remembered no more.
I learned later that the physio got me seated and then found that I had stopped breathing, and “showed no vital signs.” It seems that I had gone into ‘arrest’. She immediately called the crash team which, I was told, were there within two minutes. Meanwhile, Margaret was telephoned and it was suggested she came to the hospital as soon as possible. When she arrived she found the crash team still working on me. I don’t know what they did, but they got me back. I later learned that the physiotherapist who had been with me had undoubtedly saved my life by acting so promptly.
I continued to have problems in recovering the use of my legs. This had presented a regular problem when it came to weighing me. The nurses didn’t always have time to find the weighing chair, so they made do by holding me onto floor scales, while I bounced up and down unable to stand properly, and they would note the swings on the scales – estimating my weight as being mid-way between the extremes.
We then came to the moment of decision about whether to continue with the chemo treatment or to discontinue it. Until then I had been accepting that a lot of people learn to live with cancer, so I surely could do the same. I therefore told my consultant (Dr K.) I was prepared for the possibility that I might have to return, from time to time, for more chemo. Why should I expect it to be any different from how it is for most cancer people? However Dr K. was very direct with me – as always. She explained that, with my cancer, there is only one chance to ‘get’ it. Either we eliminate the cancer or the cancer would eliminate me. She also explained that I should not think of coming back for more chemo treatments in future. As I understood it, she would not be able to give me any more chemo treatment after the course I was on. I think this may have been because of the risks to my heart. So, when we were coming up to the point of my having the last of the four chemos in my treatment sequence, Dr K. came to see me along with Margaret to explain the options. From the last scan it was evident that my cancer was still active. So the choice was as follows: either we let the cancer have its way, which should give us some weeks or months to prepare for my dying. Or, if we went for the final chemo, I might be dead in a matter of days. “So, don’t be greedy for life,” she said. She had presented the clinical picture to a group of consultants and they were apparently completely split between a definite “don’t go there” and “give it a try.”
Margaret and I thought carefully about the options and decided to let the family know we were going for the slow route to death, with the advantage of having time to prepare for it.
However, the following day, Dr K. came to let us know that the latest echo test on my heart had come back with a slightly more encouraging reading. This might give us a chance of risking the fourth chemo. We therefore decided to go for it, and we had to go through the process of letting the family know we were no longer preparing for my possible death in a few months. But, I might still be dead in a few days. We went for it and I didn’t die.
There came a time, towards the end of my five months in hospital, when I was beginning to make progress on the zimmer. Having needed two people to hold me, at first, I had got to the stage where one was enough. Then I was told that I could have a go on my own, next day, as long as there was someone in the room with me.
A lovely Irish nurse was there when I tried my first solo attempt with the zimmer. He watched me, no doubt seeing the eagerness in my eye as I began my first steps towards getting out of hospital, and he remarked: “Look at you with that zimmer. You are going along like a snail with a ‘hard’ on.” I nearly fell over I laughed so much.
Mostly I was treated extremely well. But there was one relief consultant, who was dreadful. He twice visited me without giving me a chance to speak to him. The first time was when I was cleaning my teeth. He just spoke to my back and disappeared. The second time I was sitting down and he again spoke to the back of my head. This time I protested, saying I didn’t want him to say another word until I could see his face. He claimed that there was no way he could get to where I could see his face, but a registrar took charge and moved the bedside table so that he could stand in front of me.
I later complained about this to my lovely Dr K. She said I could either write a formal complaint or I could ask to speak to him. I chose to see him face to face. In the meantime I had learned that this consultant used to have a good reputation for his bedside manner. So, when we met, I said to him that, as an analyst, I had been interested to hear he had once been particularly well thought of for his bedside manner. But I had been told that about two years ago he seemed to have lost that skill. “I don’t want to know what has happened to you, but I do think you owe it to yourself, and to your patients, to think on that change – you giving up on such an important skill.” I was pleased to find that this consultant did not retreat into being defensive. He listened to what I was saying and he assured me he would think carefully about it. I was glad we were able to part on an amicable basis.
Towards the end of my time at the Royal Free I was sent to the Marie Curie Hospice (Eden Hall) for rehabilitation, mainly to help me get to the point of being able to manage the stairs. This wasn’t really as helpful as it might have been. For some reason I didn’t get any access to the gym. By this time I was almost through my hospital time, but not quite. One day, in Eden Hall, I was (a second time) found unconscious on the floor. I had passed out once more and my pulse was again found to be 220.
This led to my being referred back to the RFH, once more in the heart unit, where I was eventually given “cardioversion.” This was amazing. I came too after the anaesthetic and my head had become completely clear – such as it hadn’t been for all the time I was in hospital. It seems that my cancer had affected my heart and my central nervous system, but at least the arrhythmia had been cleared. However, I had learned that the chemo had somewhat reduced my heart function. And I was later to find that I had also lost proper control of my legs, needing always to have a walking stick to catch me when I begin to stumble. I now regard my legs as having become adolescent. “They won’t always do what I tell them to do.” But all of that is but a small price to pay for life.
I was finally sent for a further CT scan, again at UCH where they have that most advanced scanner. This would tell us if my cancer was still active or, maybe, that it had been eliminated.
We had to wait for a further consultation with Dr K. The results she would be giving us could not have been more totally “life or death”, as it had been made clear to us that, if the cancer was still active, I could not be given any more chemo – then or ever.
Margaret and I went for the consultation to be told these results. Of course we were both very anxious, so it was not surprising that we arrived an hour early for our appointment. We then saw Dr K. come out to collect her next patient. But, when she saw us sitting at the back of the waiting room, she didn’t turn away from us – as some doctors might have done. She came straight over with a broad smile on her face. She said she didn’t want us to have to wait until the time of our appointment, so she was telling us straight away that the scan was completely clear. Wasn’t that the best doctoring possible? Just imagine the hell we might have gone through if Dr K. had turned her back on us, it not yet being our time to see her.
When we eventually saw Dr K. she said that I had made another patient very unhappy. How was that? She then told us that she had another patient who, previously, had been the oldest person she had known to survive their most aggressive chemo. He had been 72 at the time. She had just been seeing him and he had told her how proud he was to have achieved that special place in medicine. “Unfortunately,” she had to tell him, “that place has now been taken by another.” I was then 77. Dr K. also spelled out to us, something she had chosen not to tell us before, that I had initially been deemed to have “less than a 3% chance of survival,” because of the advanced state of my cancer when we first knew of it and because of the other complications that came to be involved – my heart and the clots in my lungs.
So, how good it is to be still alive.
Patrick Casement is a Fellow of the Institute of Psychoanalysis and a Member of the International Association of Psychoanalysis. He was formerly a training analyst of the British Psychoanalytical Society, having been in full-time private practice for many years, now retired. He is the author of numerous publications, including On Learning from the Patient, Learning from Life: Becoming a Psychoanalyst, Learning from our Mistakes, and Further Learning from the Patient.
His latest book, Growing Up?: A Journey with Laughter is published this week by Karnac Books.