Patience, Patients

 A full six months after noticing something strange with my eyesight and after three spells in hospitals including surgeries, I am finally into a treatment regime for my brain cancer. For six weeks I must take a nightly pill, full of gunk toxic enough to destroy cancer cells but then necessarily attacking my body so that nausea sometimes arrives despite my anti-nausea pill. On the weekdays of the same six weeks I commute into the city to spend fifteen minutes lying on a machine that dispenses different gunk, this time radioactive gunk, into my brain. This part of the treatment has been fairly easy so far but is seemingly cumulative in its effect, so I can expect increasing fatigue and perhaps further worsening of my vision, hopefully temporary and not combined with anything new and even more foreboding.

 

Perhaps six weeks is chosen by the medical fraternity as a period short enough to allow the gunk to do its work before worse things happen inside me, and a period of time I can be patient enough to endure while envisioning an end and retaining hope. So far it seems to be working.

 

This phase has allowed me to observe more of my fellow patients and to assess their attitudes in case they might help me a bit. The hospital stays were so frantic that I did not really form any bond with fellow patients, and I suspect that is by design. The problem with cancer is that most of us do not recover. If you are running a maternity ward you want the expectant mums to bond, in order to share practical experiences of what works, to build strength together and perhaps even to create friendships that can be fruitful after the hospital experience. Only if things go terribly wrong would you want to maintain a distance. If your ward was for people with broken limbs, you would also encourage companionship, sure in the knowledge that while recovery can be slow and painful, there is at least a positive end point that most can reach and which might be reached more quickly with some optimism and teamwork.

 

My cancer wards were very different. We kept being moved about and I got the sense that interaction between patients was not encouraged. The design of the wards even seemed to discourage families from any interaction with each other. Perhaps the ward staff have learned that this is the best way to keep the atmosphere from being too negative.

 

It is the same at the radiation clinic. The treatment rooms are individual and spaced well apart, and my clinic is well managed so that the time in the waiting room each day is mercifully short. But I do observe fellow patients, and nobody seems inclined to start a conversation. That might be just as well. Some people are clearly angry and suffering pain; striking up a friendship with those folk would probably benefit nobody, even in the unlikely event that the other party was in a mood for chatter.

 

Instead, most of us choose an attitude of stoic patience. This is something we must endure so we do it on autopilot, much like an unwelcome wait in a crowded departure lounge. Try to be kind to the staff, who are only doing their best in a situation that is no fun for them either. Don’t think too hard about outcomes or become obsessed with things we could complain about, because such thoughts and actions will only prolong the experience and make it less pleasant. No, stoic patience works best, with some distraction like a book to read, and gratitude when waiting times usually turn out to be short. I have been lucky enough so far to have felt well enough to visit the clinic unaccompanied, and I notice that the carers of those less fortunate tend to collude in creating the same stoic and untalkative atmosphere.

 

This observation lies behind what I have some hope may become another turning point for me. This stoic patience may be necessary for a time but it might be overrated, and a bit of balancing impatience might be effective. I don’t mean the impatience from anger or blaming or complaining. I mean the impatience that can lead to minor triumphs and some positive hope. I believe that this has to start with the patient because, for all their kindness and wonderful intentions, the stories and cheerleading of friends and family do not create a lot of hope, at least for me.

 

Here, the dreaded steroids can be an asset. While drugged up, I had no problem with getting things done and facing the future openly and being impatient. After my last operation, I was placed on a huge dose of steroids (no doubt necessarily), and I woke up on Christmas Eve determined to get out of the place. With some smart collusion from my wife, some obnoxious tactics on my own part, and the luck that the time of year must have given some incentive to the staff, it worked and I was discharged, and I am sure that this accelerated my recovery. In the hospital they were talking about sending me for days to an inpatient physical therapy clinic, and I am sure that would have been counterproductive.

 

I am aware that I am taking calculated risks – with my compromised vision I could surely bump into something damaging or even fall – but I am also convinced that I have to live my life as fully as I can, even during treatment. That involves some impatience, with my wife as well as the medical staff, though I am aware that there is a limit and in many situations caution and patience make sense. But I have been steroid-free for a month now, so I know that it is sane me not mad me making these judgements.

 

On Saturday night we visited friends for a meal at their apartment and met their new baby. We did not shy away from talking about cancer, but we also did not let it dominate the evening (the baby helped with that). We were lucky in that my nausea was not too bad. The overall effect of the evening was to change the subject from endurance of treatment, and that provided a way to envisage a time where the treatment was no longer the point of existence. Yesterday morning I sat at the start of mass and suddenly felt a peaceful happiness coursing through my body. This was not the steroid-fed happiness of yore but something more useful. It was hope.

 

The hope is realistic – I am highly unlikely to be cured and any period that we can enjoy of healthy happiness will probably not last all that long. But now I can envision that period and be hopeful that it can arrive, maybe soon after the end of the current burst of treatment. I am happy that my wife is showing such courage and practical sense. I am thankful that I can still sing and have friends who are willing to sing with me. I can still read, even when my eyesight is at its worst. In four more weeks the cycle of treatment will end and I am hopeful I can endure that period without too much misery. Of course there are no guarantees, and part of the stoic patient attitude is about being prepared for setbacks.

 

So patience is very much a balancing act for patients and their carers. Angry impatience only makes things worse, and a certain stoicism and reluctance to socialise with fellow sufferers is probably a good defence against negative thoughts and builds some ability to accept inevitable setbacks. But an attitude dominated by patience can become self-fulfilling as well, and we can drift into a life whose only purpose can become being a patient patient. Some impatience, helped by drugs if necessary but even better without artificial help, can point to a hopeful path forward that can be believed in. Realistic but hopeful goals can offer energy and make attainment more likely too.

 

I hope I am striking this balance in a way that can be effective for me to give the best shot at some fruitful months ahead. On our parallel journeys to separate destinations, that must be a challenge for my wife too. It might be one advantage of having a care quarterback too, because he can see the whole picture and communicate a storyline that balances hope and realism. It is a source of comfort that he explicitly supports our goal of achieving a trip to Europe later in the spring. I hope that can happen, while keeping some reserves of stoic patience in the tank in case of setbacks.