Rehabilitation from childhood cancer: a survivor’s perspective.
In 1981 I was a 15-year-old and in the fourth form at school. For several months it had become obvious that something was seriously wrong with me. I developed impaired hearing, loss of appetite, constant vomiting after meals and poor co-ordination. Despite a battery of medical tests no doctor could pinpoint the cause. This was very stressful for myself and for my family. I was eventually referred to a neurosurgeon for a brain scan, and was immediately diagnosed with a pineal germinoma brain tumour Although mine was a very rare type of tumour, it consisted of very primitive cells, which were especially sensitive to radiation therapy. My reaction to the diagnosis, and knowledge that it could be successfully treated with radiotherapy was one of immense relief.
On the road to recovery, I developed a positive philosophical approach. There is strength from knowing that however bad the treatment might be, it cannot be worse than not knowing what was wrong before the diagnosis. Knowing the devil and that it can be defeated, you have won half the battle. The treatment, however awful, is your friend and the medical staff are on your side. Radiation side-effects such as acid saliva, loss of energy, concentration span and hair, and steroid fluid bloating- are all tolerable and less of a source of stress if you know they are part of the big climb out of the pit. The trick is to associate these side effects with self-esteem (braveness, determination) and not to be afraid of them. There is always something to be gained, even in such a compromised situation. In accepting that at this point you will be out of commission for a while but have the goal of returning to the mainstream, I found the following “freeway“ analogy helpful:
“The freeway is the simplest, fastest, most efficient way to get from one town to another. I want to get to my destination like everyone else, but I can’t use the freeway for now. Thus I must use the secondary roads and country lanes which are slower and less efficient. There are two ways to look at the situation: (a) it’s a jolly nuisance and I’m going to get terribly upset and frustrated, or (b) the situation provides the opportunity to get a better view of the countryside, visit the small towns along the way and gain a richer experience by the time I get to my destination. As opposed to a screaming rush with snarling traffic, dangerous overtaking and road rage to arrive grumpy and hassled and in which you have gained nothing but a headache!”
Here is the opportunity for a re-discovery of yourself, who you are and the many things that you are still capable of doing. If you can keep your spirits up during cancer treatment, you can handle almost everything else afterwards!.
The full support of my family was instrumental in helping me to cope. We have always been a close family and when this crisis occurred everyone pitched in and helped without complaint. My brother, at the same school as myself, was an important liaison between school and home. This kept me in touch with what was happening there. It is very important to know that your school is there for you to come back to and that they are thinking of you during this socially isolating time. The psychological support of my sisters was also very important. This encouraging home environment instilled an inner strength, which was vital in the difficult years to come.
After the treatment I was left with pituitary hormone deficiency, chronic tiredness, permanent moderately severe hearing loss and minor inco-ordination. One important aspect in returning to school the following year was that I was treated in the same way as others but with recognition of my special needs in certain circumstances. Returning to school was very difficult, as I had not foreseen that I would have remaining difficulties in academic thinking, concentration span and tiredness. Teachers were aware of my situation and were keen to help meet my needs, but I had to be assertive in stating my difficulties first. This resulted in altering my schedule for the first year back. I attended classes as normal but with a reduced workload and the delaying of full assessment and exams for sixth form till the following year. I attended university after six years at school, spreading Stage 1 science papers over two years.
Several tactics were useful in coping at school and university:
- Firstly, I consistently sat at the front of the classroom or lecture theatre in order to maximize hearing ability. Although this limited conversation with other students (who like to sit as far at the back as possible for social reasons), I had to keep in mind the primary reason I was there! I also was assertive in asking teachers or lecturers to clarify points which I had not heard or understood well.
Secondly, I organised my day so as to be aware of my tiredness and reduced
concentration span. This meant
taking regular breaks from study and immediately after lectures.
In revising for exams (at school and university) I rewrote written
material into chart-flow diagrams to aid memory. This involved recognizing the pattern and sequence of ideas
underlying the material. It is
always easier to remember a visual pattern or direction than endless notes.
Generally in life, I find the following approaches useful:
- The first is the concept of assertiveness. Of not being afraid to take on new opportunities and risks as long as I am assertive to others (and myself!) about my limitations and special needs. This means ensuring that I understand the situation I am encountering and what is expected of me and communicating my special needs to others.
The second approach is the concept of control.
As the Chief Executive Officer of Chris Jerram Inc., I have delegated
responsibility to various “divisions“. One is the Division of Medical
Management and is responsible for
management of my medical condition (taking medication, monitoring energy level,
and reporting anything out of the ordinary).
Division of Awareness (managed by Hugh Watchitt!) has the task of compensating
for my “perceptual delay“- (slow central processing and reaction to sensory
input)- for example extra care crossing roads, allowing time to orient to a new
Division of Critical Analysis is responsible for decision-making- i.e. “is
this a good thing for me to be doing”, “what am I getting into and how much
am I likely to get out of it?”. I
have to be aware that what is right for other people may not be right for me.
There is no shame in making a choice which may not be the most
- Lastly, there is the Department of Stress Management. I have difficulty dealing with stressful situations at times, and have two main ways of coping. One is to use a system of gears, and to change gear up or down to suit the situation. Recognize when it is inappropriate to roar into top gear with adrenaline pumping when you cannot do anything to make things happen any faster. A second is to compartmentalize a situation and only deal with one compartment at a time. Ignore everything else which is coming at you. Prioritising is important.
Finally, I cannot say enough for the ongoing support of family, school and, in my case the Audiology Department of Auckland University in encouraging the rehabilitating young cancer patient to form a positive view to his or her condition. At the end of the day, he or she will have to accept, monitor and advocate for their condition in their own way, and the role for the parent, sibling, teacher or colleague is to recognize and bolster any steps which the survivor takes towards this end.