I have been on the CAPITAL trial for almost 12 weeks now. The trial combines two well known cancer drugs - Tarceva and Xeloda - in smaller doses than if they were taken independently. This should minimize the side effects of both drugs without losing their potency - at least - that's the theory.
The first scans showed very positive results, the cancer had shrunk and my disease is classified as 'stable'.
Initially, apart from the most common side effects of an acne-form rash and diarrhea there was little to get excited about. That has steadily changed over the last six weeks.
The most painful side effect is hand-foot Syndrome or, to give it its proper name- Palmar-Plantar Erythrodysesthesia. This is caused by small amounts of chemotherapy leaking out of the capillaries in my hands and feet. Once out of the blood vessels, the chemotherapy damages the surrounding tissues. They become very red and sore as the skin splits and infection sets in, in my case around the nail beds. Walking is becoming increasingly painful, as is typing as both my hands and my feet are affected.
Whilst not life-threatening - this particular side-effect is bordering on being life-limiting, and so evokes the questions that every cancer patient lives with subconsciously:
- At what point do we say that the chemotherapy is doing more harm than good?
- How much pain do we tolerate before saying it's just not worth it?
- What's more important, staying alive or living what is left of life well?
At the moment the questions lurk in the background of my mind. They are 'waking thoughts' which haunt the first few minutes of each day with the spectre of death, but which then disperse like mist leaving just a tinge of dread behind them. Don't misunderstand, it is not death that I dread, it's having to try and answer those questions.
Work and family mean those questions are more about relationships than about the sickness that leads to death. The answers are tied up in the love and support both given and received at such difficult times. The error is to dodge the questions, and take the easy way out - for each party to come up with their own answers based on presumptions rather than discussion.
Contrary to what people think - our lives are not our own. Our life is dependent on the relationships that make living more than drawing breath or fighting pain. Normally those relationships are balanced and defined by mutual respect. Each person knows their place, knows how to contribute to the life of the other without infringing on their personal 'rights'. In the case of serious, terminal sickness however, the boundaries that define the relationship shift and sometimes collapse under the strain of it all and the ability to discuss what really matters is often the first casualty.
I have witnessed how the distress of fighting cancer, of watching and waiting for death, can become so unbearable that families conspire to end a life by withdrawing all that really makes life worth living for the patient, the company of friends, the idle conversations, the chance to do some good. Together, they long for 'it to all be over' - even though deep down they know that 'it' is really the life of someone they love.
I have seen the impact this has on the patient who doesn't want to inflict the pain of having to watch someone suffer on those that they love. They can see the strain on the family and are acutely aware of the financial consequences and emotional stress that their progress through the disease is having.
And inevitably, in such cases, this has led to the questions being summarily dismissed as having 'obvious' answers - when clearly they don't. But everyone is reassured and excused by their conviction that it was cruel for the ending to be so long and drawn out, it was for the best in the end, the fight is over, the victory won...
In my case I know that I will not be able to answer those questions without considering the feelings and impact on my husband, my friends and, of course, the Churches that I serve. And they cannot make the decision for me without effectively killing me. Being a wife and a minister is who I am, not what I do. I can't imagine life without ministry so my ability to minister will have a major impact on how I might want to answer those questions when the time comes. It adds a whole new dimension to the concept of a 'work-life' balance!
The trial will continue as long as the drugs continue to work - or my body can no longer tolerate them. When that time comes, I pray God we somehow manage to avoid the error of either dodging the questions, or choosing the easy way out.