Recovering from Recovery

 Last Monday I had brain surgery number five. It was a relatively small procedure as brain surgeries go, and I must have recovered quite well because I was singing by Thursday. Now I have another scar on the other side of my head to match the ones from previous procedures.

 

While the surgery and recovery went well, one purpose was diagnostic, and those outcomes are not so good. After a full year where treatment seemed to keep the cancer in check, it is now clearly proliferating within my brain (though thankfully not anywhere else so far). Because I have so few symptoms and feel so well, the oncologists can now try different treatments, which will include more radiation therapy, different chemotherapy and perhaps some immunotherapy, whatever those things all are. If I am lucky these can give me a further period of good health, but from here we have to also accept that health is more vulnerable, and symptoms could appear, progressively or suddenly.

 

We are so grateful for all the support we continue to receive, from medical professionals, friends and family. In tough weeks like the one we have just been through, that makes all the difference.

 

The procedures all seem to follow the same emotional pattern, and I make the same wrong assumptions every single time. The tendency is to focus on the procedure itself whereas the tough part is actually what follows afterwards.

 

I remember well the frenzy of activity I went into in the days before my first surgery. Once I went under general anaesthetic, would I ever come out again? What do I need to tell my wife and family, just in case? What if I do survive, but as a vegetable or with severe disability?

 

I have been around the same loops with each subsequent procedure, but with a little more realism and a little less frenzy. I don’t sleep the night before surgery, but I find it helpful to distract myself and to travel to the hospital by public transport, fooling myself that this is just an ordinary day.

 

Of course all of these worries are logically rather silly. Yes, procedures carry material risks, but I am probably far more likely to die crossing the road each day than I am on the operating table. It is rather like the feeling we all have waiting for a plane to take off. We are probably doomed to suffer the anxiety, but at least we can remind ourselves of some relevant statistics.

 

The same mood prevails into the operating theatre itself, though of course the odds of real physical suffering during an operation under general anaesthetic are even more miniscule. It can go catastrophically wrong, but I would know nothing about it, at least until I might revive from coma or whatever other consequence arose. Once again, there is little logical point in all this focus and worry, but probably no escape from it either.

 

So anxious do I become about the operation itself, I always forget that the tough time is usually afterwards. There are many recurring features, and I am never well-prepared.

 

First of all, I wake up, heavily dosed with anaesthesia and disorientated. The medical staff are discussing their findings, openly, not knowing I am awake. I hear things I would rather not, and then spend hours wondering whether I heard them correctly or even dreamt them.

 

Then I find myself in another room with the welcome presence of my wife. She and the nurses scramble to find some juice or tea, realising that I have consumed nothing for over 24 hours. The anaesthesia starts to wear off and the pain might build. With an open wound in my head, there is no way to lie and be even remotely comfortable. I start to understand that this will be my fate for the whole night.

 

This time I was lucky to have a quiet, spacious room on my own and with an attentive nurse almost to myself. I can start to give thanks that I am still alive and functioning and that nothing major seems to have gone wrong. But the night is long, with no sleep to speak of, and low levels of pain building up through the night. Smartly, I persuade the nurse to allow me to sit in a seat rather than try to lie in the bed. That helps but makes sleep even less likely. Even if I can doze a little, the nurse has to wake me hourly to check my functions. It is all a bit like an eight hour night flight in an undersized middle seat.

 

Then there is the inevitable visit at 6am from the interns in the surgery team. They try to pass on news, generally bad news, but their skills at this are not great and in any case I am struggling to focus, and only later remember all the questions I forgot to ask.

 

Luckily this time went very smoothly, and I was allowed to go home barely 24 hours after arriving at the hospital, pain wearing off and a little sleep possible at home.

 

But the worst part is still to come. The pain dissipates, but the job starts of processing what has happened and what lies ahead, and of communicating this news to family. These are always the toughest weeks emotionally. This time we had two hours or more of dedicated tele-meetings with wonderful experts, very illuminating but utterly overwhelming too, and a little foreboding as well.

 

The last difficulty with recovery is perhaps the toughest of all. Just like after my initial surgeries, I now know I am much more vulnerable to changes in my condition. That will be a constant worry for a while. I already notice the return of phantom symptoms. If someone asks if my hands are tingling, they immediately tingle. If I am prescribed more seizure medication, I conclude that a seizure must be imminent.

 

I know I have many things to be thankful for, and that also helps, in the end decisively. By the time we must face the next meetings and the treatments that will follow, we will be ready.

 

I apologise for being a bit morbid today. As usual, my main purpose is to crystallise my own thoughts. If my thoughts trigger anything useful in anyone who has a similar experience, that is a bonus. If it just depresses you, then I am sorry.

 

Perhaps now there will be no more surgeries, which is a sobering message in itself but at least spares me the cycle of anxiety and recovery. If there is another surgery, maybe I might even be smart enough next time to know that the part to prepare carefully lies not before or during the procedure, but after it.