Changing sides

A cancer counsellor describes a personal experience of colorectal cancer

As a psychotherapist and part of a specialist team, for many years I have been supporting cancer patients and those close to them face the impact, feelings and challenges that a cancer diagnosis and treatment brings in its wake.

Although I had not had cancer myself, with the exception of a scare in my mid-30s, through my clients I learned how different reactions can be from person to person, and how certain key points often turn out to be the hardest to navigate. Not surprisingly, these are prompted by how you are given the news that you have cancer, coping with the side effects of the treatment, the end of treatment, the challenge of recurrence and the difficult shift to palliative care. In other words, vicariously, I was familiar with the terrain.

However, when over a couple of years, I experienced fatigue, loss of appetite and weight, digestive upsets and feelings of depression, I found perfectly ‘plausible’ explanations – I was just tired, I needed to lose a few pounds, I had become dehydrated as a result of a summer holiday in Spain. In other words, in spite of my background, I was in denial. In addition, I felt embarrassed, as do many similarly affected, and this too acted as a deterrent from seeing my male GP.

One night, I unexpectedly woke for no apparent reason. The house was quiet but I was overwhelmed by a feeling of physical dread. I eventually went back to sleep but in the morning I recognized that my body was telling me something that my mind had been refusing to acknowledge, and I self-referred for screening.

Things moved fast. I saw a consultant and after tests learned that I had a large colorectal tumour that would need removal. He was kind and matter of fact and at the point when I was told, I was still lulled by sedation. At some level, I must have been expecting this news so I didn’t experience that initial sense of shock and terror that some clients have described to me. Surgery was scheduled for two weeks later and I was put on a liquid diet which wasn’t difficult as I had no appetite at all.

These two weeks turned out to be very hard to live through. I was now extremely frightened though I tried to blank out the implications of the diagnosis. I couldn’t stem horrific images of the future. I imagined that as a result of the impending surgery, I would, like a detail from a Hieronymus Bosch painting, become an unstoppable fountain of faeces, never able to leave the house. That the nurses at the hospital would recoil from me and, humiliatingly, tell me to clean myself up. In fact, every possible fear left over from early childhood came back to haunt me.

I went into hospital on the morning of the surgery and predictably from then on met nothing but kindness. An eight-day stay was envisaged though due to complications, I was in hospital for five weeks with four days in intensive care. I can’t remember much of this period because I was protected by an opiate-induced blur, but do recall a nurse who emphatically informed me that her name was El-iz-a-beth and that she would pray for me at the end of her shift. I got the message: I was pretty ill.

I was then moved to the ward, attached to numerous drains and lines. This turned out to be the worst day of all. I now knew that I had had to have major pelvic surgery and that I would have to accept a potentially compromised future which would include a permanent stoma. Every time I closed my eyes, I saw an enlarged printed version of my own death notice. I held the nurse’s hand and for the second time since receiving the diagnosis wept.
Because it was a long stay, without realizing it, I rapidly became institutionalized. I found that I had, like many patients, a hypersensitive reaction to everyone and everything around me. I exhibited an embarrassing desire to please which made it hard to ring for help as I didn’t want to be seen as ‘difficult’. Subject to regular blood pressure and temperature observations, I began to sleep in two hour segments, a habit which subsequently proved hard to break.

Days ran into each other as one setback followed another. I dreaded the daily arrival of the cheerful physiotherapist who would chide me for lying in bed rather than sitting in the supremely uncomfortable chair beside it. I took faltering steps along the corridor and subsided, exhausted, back onto my rippling air mattress.

I loved seeing visitors but would quickly become too exhausted to enjoy them. This felt petulant and ungrateful but I lost sight of my normal life as the world shrank to my bed, the corridor and trips on a trolley down to the low- ceilinged basement for scans and X-rays. It was hard to imagine that I would ever leave.

So what did I learn when I made the switch from therapist to patient? Was it easier because I knew the score or more alarming? Probably a bit of both.

On a practical level, it was helpful to understand the implications of surgery and to know that I could also access information from the bowel cancer charity’s helpline. I was fortunate to know techniques to help deal with anxiety and to have complementary treatment both in hospital and when I was discharged.

I had always felt that it was important for a patient to feel at the centre of a concerned and, if possible, linked circle which would include the medical team, family and friends plus therapeutic, complementary and spiritual input if that felt appropriate, in fact anyone who had the ability to offer genuine support and encouragement. When it was my turn to need this level of care, both in hospital and afterwards I found this to be absolutely true.

Equally important was the need to be ruthless in ruling out anyone with a gloomy outlook or who was clearly so upset by my predicament that they needed me to take care of them. Thinking about this self-absorbed attitude afterwards, I realized that while I was trapped in an uncomfortable physical present which took all my energy and imagination, people around me were responding to a longer view and therefore potentially a more pessimistic and upsetting one.

Different cancers require different treatment regimes and for some people, the initial hospital stay is fairly short but is prefaced or followed by regular chemotherapy or radiotherapy appointments. Whether the hospital stay is long or short, what is common for everyone is the challenge presented by discharge. To begin with, there will be regular follow-up appointments but if the treatment has been successful, in time, these will be less frequent so that you begin to feel like a visitor to a place that for a period felt like home. Adjusting to coping on your own, as opposed to relying on the sense of security provided by the medical team, even when that actual regime has been unpleasant or actively feared, is an enormous transition. I believe that this is magnified by the fact that not only are you cared for medically but also physically, particularly at the beginning when you are washed, helped out of bed and coaxed to eat like a small child. You regress to a state of dependency and vulnerability which is very difficult to leave behind.

To begin with, after leaving hospital, you are still an object of concern but quite soon, as you recover, friends and family are only too relieved to view you as ‘back to normal. Without any intention to hurt you, they withdraw their level of contact as they view you more as your old self and it is easy to feel abandoned but at the same time ashamed to have to admit that you enjoyed being the centre of attention and are reluctant to change roles. At this point it can be really helpful to have the support of an experienced therapist, someone outside your family and friendship circle, with whom you can be totally honest as you begin to make sense of what has happened to you, and to share difficult emotions without the fear of upsetting those close to you.

Some cancers have more media coverage than others so the public are aware of likely treatment options and side effects. For example, the trauma of a lumpectomy or a mastectomy for breast cancer patients is better understood, as is the possibility of nausea, hair loss and fatigue associated with chemotherapy. More difficult are the rarer cancers and those affecting the bowel or reproductive organs which are likely to have ongoing physical and emotional repercussions but are less likely to be talked about. This can make you feel lonely.

We have a bad record with bowel cancer in this country; it tends to be picked up late and this affects both treatment options and survival rates. The intervention that saves the patient becomes an acceptable subject for comedians wanting to raise a laugh, but adjusting to a colostomy is no joke and is just as hard to cope with as the loss of a breast, harder perhaps as the latter can be concealed but noisy gurgles and worse from the digestive tract cannot be controlled or hidden. Equally difficult are the side effects of some tumours and treatment regimes which can provoke depression and panic attacks and even a perceived change of personality which is very hard for the patient and the family to cope with.

Was it my familiarity with the disease that helped me through? The quality of care that I received was important as was the speed with which it was delivered. It was also important that I could talk openly about what was happening to close friends and colleagues without the need to protect them. My experience reinforces my belief that emotional support with an experienced practitioner should be available to all cancer patients, whatever their circumstances, should they need a confidential space in which to make sense of what has happened to them and how it has changed their lives.


For further information and support:
Bowel Cancer UK
The Colostomy Association