An hour in the life...

It’s Saturday, 7.30 AM, and it feels to me like some people must do on a Monday as they lie in bed, not wanting to get up and face the work-week. The bed is deliciously warm and cosy.

    I don’t want to get up either, but I must. I have medications that need to be taken. I’m reminded of this by a not-so-dull pain, right where as much as possible of the tumour was excised from my brain on 17 December 2009. That’s not good. Some days it's there and others not.

    That’s right. 563 days have gone since everything changed. I waken to each one not knowing what challenge may be ahead. There’s a more general ache across my whole brain. I know that if I exercise a little and eat something, this ache will probably disappear, for a while at least. The toxins will be dispersed by physical activity. For now.

    Two days ago, a friend of ours died from stomach cancer, after a long fight. She had been cared for with great self-sacrifice by another friend, herself a kidney cancer survivor who had just looked after two other cancer patients one after the other till their deaths. One of them had ovarian cancer; the other, prostate cancer. Coming out of Oncology at the hospital after my treatment, we bumped into a young friend. She told us that her boyfriend’s father had just been diagnosed with pancreatic cancer. She looked shell-shocked. I didn't know it at the time, but my brother-in-law Jimi was at the bedside of a former band member and great entertainer Josie Jason. She succumbed to throat cancer on Wednesday. Three friends visited within days of each other; the brother of one is in chemotherapy, the brother-in-law of another as well, and the third, his wife, a survivor. I had just been communicating with another friend, also a breast cancer survivor.

    Happily, there are long-term survivors. We tend not to hear of them because recovery fades quickly into ‘normalcy’ for just about everyone else. They don’t go round shouting it to the rooftops, though I think they have a right to. But as I write this, I learn of another friend who’s just had surgery and is awaiting the results of a biopsy.

    Still unwilling to leave my warm bed, I am pleased that this time I got through the night with no seizure. At one stage my arm had that discomfort that often signals an attack, but I got up, stretched and moved, drank water, and the feeling went away.

    So now I start a mini-exercise routine as the hands of the clock swing up towards 8 am. I do things in 20s, though I gradually built up to that number. It starts right in the bed. I stretch upwards with my hands and do 20 sit-ups, but I weaken progressively as I do each one. If it’s not good enough, it has to be repeated.

    I stretch and twist arms and hands. I do leg-raising alternately, in 20s. Never stop before 20. It’s weakness.

    There’s a method in my madness. By then I feel warm enough and awake enough to go to the bathroom for ablutions. The bathroom is cold, as the laundry it adjoins is poorly sealed and there’s a nasty wing forcing sub-zero temperature air into the bathroom.

    I need to be warm before going in there or my tremulous right arm will start shaking violently and I’ll hardly be able to wash. The hot-tap water is barely above freezing until the hot water finally gets there, but the cold water feels good on my face, and I’m secure in the knowledge that warm water will follow.

    I stand back from the doorframe and do 20 long slow pushups against it, my feet about 3/4 of a metre back from the frame. I get a very good feel for how much work each arm is doing and whether or not the right arm is cheating. The scapulae almost touch, as they should, as I do each. Triceps are re-emerging in my right arm.

    I am smarter than my right arm, see. It doesn’t get away with slacking, as it used to.

    Now I stand in the lounge room. I drag my right arm into position behind me, left hand clasping the right. My body is as much in symmetry as it can be. I stand flat on my feet; not a mean feat (hah!) these days. I slowly raise my heels as high as I can, 20 times, as balanced as possible.

    I stretch my arms upward, still clasped, 20 times, taking care to make the right one work as hard or harder than the left. I am continually remapping this activity in a part of my brain that isn’t damaged. That way I recover from seizures more quickly. At least, that’s my theory....

    I stand on the left foot and raise the ankle 10 times. That’s not hard. I then stand on the right foot and repeat the exercise. That’s a good deal harder as the ankle doesn’t get the signals as clearly from the brain – but it works. Well, if it fails, I add another lift – each failed one doesn’t count. 10 times. The ankle feels weak, but with willpower it does what it’s told.

    I stretch the right arm hard across my body and twist at the hips. 20 times. I keep the stretch of the arm, 20 deep breaths. Good for the lungs, which sometimes get wheezy.

    Nearly there. Just two more things to do. I do alternate ankle-raises making sure the knees are well involved with the process, 100 of them this time. I need this action to improve walking. It demands concentration.

    Finally, I stand balanced flat footed, and knee-bend down almost to a squat, 20 times. Good for flexibility.

    Then a mini-cool down recovery period. I stand on tiptoe as still as possible for 20 deep breaths. For me, this is very hard and I need to concentrate in order not to lose balance. I surely need that bodily balance.

    By end of this, my hips feel rubbery, as do my knees. I have to lock them into position consciously or I’ll sink. Some days are worse than others. After the seizure the night before last, I have lost about 20% of the strength and freedom I had the day before. How quickly I get it back depends on what happens in the next few days.

    This exercise routine is very important to me in every way. I do more exercise later in the day, but if there’s one thing I have learned from a chronic debilitating disease, it is how vital it is to retain as much physical strength as I can, even if it’s only in areas of the body where it’s possible and where others have to be ignored.

    And so to breakfast. But you have had enough of the first hour of my day, if you’re healthy and don’t even have to contemplate these things. I am thinking that this very simple stuff may be useful for others where their lives have suddenly and radically changed, or for those who care for them. Of course, it’s different for everyone, so check with your doctor first!