Tuesday, 4 February 2014

Changing Sides

This post was written by one of our long time supporters, Jane Fior, a psychotherapist who for the last 23 years has been supporting cancer patients and those close to them face the impact, feelings and challenges of a cancer diagnosis and treatment that ensues.  In 2013 Jane was diagnosed with cancer and this is her truly moving story.  We thank Jane for sharing this with us.

I am a psychotherapist and for the last twenty-three 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. I have always been interested in the role of complementary therapies and a keen supporter of an integrated approach.

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, no matter what the prognosis, and how certain key points can turn out to be the hardest to navigate for that individual. Not surprisingly, these are prompted by how you are given the news that you have cancer, how you get on with your medical team, coping with the side effects of the treatment including loss of hair, physical symptoms and bodily changes, the end of treatment, the challenge of recurrence and the shift to palliative care. In other words, vicariously, I was familiar with the terrain.

However, when, over the last year, I experienced fatigue, loss of appetite and weight, a change in bowel habit 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.  However, I had acupuncture, saw a homeopath and started to receive and then study Jin Shin Jyutsu, a Japanese healing practice and form of energy work. Although no one linked my declared symptoms with the possibility of cancer, in retrospect I believe that the combined input of these therapies helped prepare me physically for what was to follow.

I confided in a couple of friends who urged me to seek urgent medical help but to their alarm I assured them that everything would sort itself out and I’d be fine. 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 bowel cancer screening.

Things moved fast. A week after seeing the consultant, I had a colonoscopy and was told that I had a large tumour at the base of my colon plus a suspicious looking polyp that would need removal. I trusted him. The doctor was kind and matter of fact and in any case, at that point I was still lulled by sedation. It was only when I was getting dressed and the nurse assigned to me gave me a warm and unexpected hug that I began to take in that it was serious.

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 had 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 went to stay with friends in their 9th floor apartment. In bed and looking at aeroplanes scudding through the clouds and fleets of birds flying in formation just beyond the window, 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 from my surgeon and nursing team. An eight day stay was envisaged though, in fact, 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 can’t understand why people take such exception to this kind of response, regardless of their lack of belief. I found its intention very comforting.) 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 because of spread I had had to have major pelvic surgery, including an unexpected hysterectomy, 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 has subsequently proved hard to break.

Days ran into each other as one setback followed another. Friends came to visit, bringing treats that I couldn’t manage to eat and cards began to line up on the window ledge. 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.

A good friend acted as gatekeeper, keeping everyone informed on progress and limiting visits to the minimum. I loved seeing people 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 Xrays. People said ‘You must be looking forward to going home,’ but it was hard to imagine that I ever would or if I did, how I would cope on my own.

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

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 support 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, I found this to be absolutely true. The messages and cards and expressions of affection created a sense of security that felt tangible.   Equally important was the need to be ruthless in ruling out anyone with a pessimistic outlook or who was clearly so upset by my predicament that they needed me to take care of them.

Thinking about this self interested view afterwards, I realized that while I was trapped in an uncomfortable physical present which took all my energy and imagination and didn’t allow space for too much conjecture over the future, people around me were responding to a longer view and therefore potentially a pessimistic and upsetting one.

On a more mundane level, I found my instinct that any food offered should be in very small portions (you can always ask for more) was also correct. Even though I used to write VERY SMALL PORTIONS PLEASE on the daily menus, when lunch and supper arrived, I would remove the tin lid and, overwhelmed by the amount on the plate, push it away. This inability to eat meant that I had to be fed intravenously and subsequently and uncomfortably with a nasal feeding tube which I hated.

It was hard to imagine going home and having to adjust to being on my own, as opposed to relying on the sense of security provided by the medical team. I think that this feeling was magnified by the fact that not only are you cared for medically but also physically while you are in hospital, particularly at the beginning when you are washed, helped out of bed, coaxed to eat like a small child and generally cosseted. You regress to a state of dependency and vulnerability which is very difficult to leave behind. Initially when you are discharged, 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.

So here I am, three months down the line and waiting hear whether I will have to have follow-up chemo or not. We have a bad record with bowel cancer in this country. For many reasons, it tends to get 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.

I was lucky because there’s a good chance that surgery has dealt with my cancer and although chemotherapy may be recommended and there can never be any guarantees, I do have a good prognosis. I am getting used to the side effects of surgery and I feel well and optimistic. Is it this or my familiarity with the disease that has helped me through?

The exceptional skill of my surgeon and the quality of care that I received was important as was the speed with which it was delivered.  During my five weeks in hospital, I also had Jin Shin Jyutsu treatments every day plus acupuncture which definitely helped me recover my strength and overcome the various complications which kept me there for so long. It has also been important that I can talk openly about what has happened to close friends and colleagues without the need to protect them. As a result, I have not had to face the feeling of isolation which can bring clients to the therapist’s door.

I may not have needed psychological support but my experience reinforces my belief that counselling with an experienced practitioner should be available to all cancer patients should they need a confidential space in which to make sense of what has happened to them and that medical treatment combined with complementary therapies makes a real difference to a patient’s physical and mental well being.

Jane Fior

For more information about the use of Jin Shin Jyutsu with cancer, see ‘JSJ at the UK Markey Cancer Center’ on YouTube

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