The emotional roller coaster takes us up and down. Until someone discovers a cure for this horrible disease, we have to accept that Steve won't get better in the conventional sense of the word. "Get well soon" cards aren't appropriate in our circumstances (what greeting do you send to someone who is terminally ill?) and "carefree" is no longer part of our life's vocabulary.
The frequent, regular visits to hospital begin to blur together after a while - eating into precious time and chopping it into small, disjointed blocks which makes it difficult to build up a head of steam to start or progress projects where continuity of more than a few days at a time is needed. Plans are made, revised, abandoned and reinvented - living with uncertainty is like that.
The physical roller coaster reflects the pattern of chemo, and is dominated by the side effects of nausea, strange tastes and tiredness. Underlying this is the knowledge of Steve's vulnerability to infection now his immune system is compromised by the treatment. He is acutely aware of any change in his body, questioning whether it might be a sign of the cancer spreading, rather than something mundane, such as indigestion, a muscle ache or a common cold.
Frustration looms large - wanting to do something, anything, to fight this disease and beat the odds on survival. Submitting to chemo, only to find three months later and four cycles of treatment further on that it has not resulted in any significant change is disappointing, there's no getting away from it. We need to think very carefully about whether to continue the drug trial, or switch to the standard treatment - something to discuss in detail with the doctor, next week.
However, were it not for the physical side effects of the treatment, Steve would not know that he has mesothelioma. His breathing is not laboured; he walks into town and back without a problem. He has no chest pain (or any other pain, for that matter). During his "rest" weeks from treatment, we have crammed in a lot of living, getting out and about more than before all this began. At such times, we still wonder whether the diagnosis was correct - it's not supposed to be like this (not that we're complaining...)
It's scary looking into the future when there is no known cure for this type of cancer. Because he took part in the drug trial, Steve will get a second bite of the bitter chemo cherry. However, there is no back up treatment available on the NHS if/when he starts to deteriorate thereafter. We take comfort from the pioneering work currently being done in Germany using a technique called chemoembolization to treat mesothelioma. We may yet get to meet Prof Vogl in Frankfurt. But we hope it won't come to that until a long time in the future. In the meantime, we have plenty of living to do in the here and now.