In like Sisyphus.

It's been over a month that I saw the Professor and heard the good news that my blood test was normal. At the time I complained that the 'port' irritated my gut and I was in pain after exercise. The Professor duly checked me out and said: 'that's not ascitis, that's fat'. And that was that. Since then, every time I did a heavy workout at the gym I had horrendous gut pains for 3-4 days. I would rest for a week and go back for more when the pain had gone.

Well, the same thing happened last week and I had had it. 'I am feeling like Sisyphus' - I complained to a friend. Every time I come up for air, feel healthy and back at work, back at doing exercise, back into life, my gut gets sore and I have to cancel my engagements and rest. I need a break from being sick. I want to live, not just exist.

Well, of course the reality is that I am slowly getting back into my stride, but I am impatient.  I have always done too much and expected to be able to go on like that until I dropped dead at some ripe old age - certainly older than my parents.  Well, I've outlived my Dad, but am rapidly approaching the age when my mother died 27 years ago. The truth is that both my parents died dramatically, very suddenly. My Dad of a heart attack went after three days and my Mom within an hour of having a massive stroke. My brother has been unhealthy for years, suffering from various chronic diseases, and died last December five days shy of his 80th birthday. Since we live 10,000 miles apart, he in Miami, me in Sydney, I wasn't there to watch his decline.

I guess this is a long way of saying that I am not used to watching people deteriorate with age and chronic illness and I find it hard that I am the first with whom I am up close and personal.  It's not a good feeling, despite the fact that intellectually I have accepted the probability that my life may be a series of periods of wellness and decrepitude in the future. My brain may accept it, but my spirit does not. I hate the situation and I am trying to get the discipline that is needed to change things. Things like my diet.

While I've been screaming bloody murder about having fluid 'in there' and the 'port' bothering me, I have also turned to comfort food that is probably not helping things. Food I hardly ever eat, like chocolate, unsalted potato crisps and corn chips.

There! I've confessed. Maybe it's my diet that needs changing and not the 'port'. Maybe I need to be mindful of what my friends tell me about diet and exercise.  Maybe I should go back to my healthy eating habits and just go swimming and forget about weight training that I absolutely hate. Maybe....

In the meantime, the good news is that I have been back at my temping job for the past 3 weeks (this is the fourth) and I started to make some money. I did finish a big editing freelance job and I am half way through a short play about the Swami Vivekananda (deadline: 1 March). And, I have started to reenter my volunteer world with Amnesty International and the Sydney Alliance.

Like I said, I do overextend myself, but I also take care how much I do. And I am truly thankful to the people around me who help me do that. For example, this Sunday my Amnesty group had a fabulous program with Asylum seekers (a big topic here in Australia), and I was supposed to be one of two people who officially did the photography.  Well, I lasted two hours (and about half of them on the web-link are mine), when one of the young girls noticed that I looked very tired. As soon as she asked me if I wanted her to take my camera and continue taking pictures, I realised just how exhausted I was. And two women kindly walked me to my car, as I needed my walking stick that I haven't used for weeks, to get up the steep hill. It's moments like that when you realise you can still contribute, but you have to know your limits and get out when you need to, so you don't disturb others at whatever function you are at.

This is one of the biggest lessons I still have to learn. Appreciate what you CAN do and don't fret over what you can't. Life still has meaning and value. So easy to tell that to others......

Back in the swim

January is almost over, but I still feel the negative pull of last year.  Today I attended the funeral of Adrianus van As, a venerable gentleman of 94 years of age.  One can say he had a full life and it was time to go, but Adrianus was one of those few amazing people of principle, who stood up for what he felt was right under the worst period of Holland's history in World War II, and he saved hundreds of Jews from being deported to their deaths. I always feel that people like Adrianus should live forever, to guide us in doing the right thing. As his son, the pastor who officiated at his funeral, said,however,  'besides  being a hero, Adrianus was a human being'. I guess. So, human beings must die. Vale Adrianus.

I always felt that my brother Stephan would live forever – at least he would outlive me – even though he was 10 years older than I. He was no hero, just a very clever man, larger than life, who was born into the wrong family and had a very hard childhood that marred him for life. A very human being. Stephan died on 10 December, 2013, just 5 days shy of his 80th birthday.  He lived in Florida, so I was at his funeral via Skype, as I also whispered in his ear on Skype on the day he died. Today, attending Adrianuses funeral, I wept almost uncontrollably and felt embarassed, because I realised I was not crying for the deceased, whom I have had the privilege to get to know through my volunteer work, but for my beloved brother, whom I idolised as a child, but with whom I've had a difficult relationship for most of my adult life.

After Adrianus' funeral, I went for orientation in my temping job, which will restart next week. I have not worked in over a year because of my illness, so today was a major advance to recovery.  I lasted the three hours and look forward to getting on with my life. The day was a poignant mixture of farewell and hello future. A day to ponder.

Mind you, as I look forward to finally earning some money, I have to say that I am not out of the cancer woods yet.  I saw the Professor last week. He told me that my blood test was NORMAL, which means that the Exemestane treatment is working: i.e. it is mopping up the straggling cancer cells. However, he declined to take out the 'port', which bothers me when I move the wrong way in the gym or sit up for long periods. To me that means he is expecting perhaps that the ascitis may return.

Surprisingly, I was not elated at the news that my blood test was normal. It was very strange. It was almost a let down. I was very upset about that. Luckily, on the way home I bumped into Angela, my amazing counsellor. She saw me the next day and explained that I am simply exhausted and, because of that, the good news seems like a downer.  It's normal, she said. Evidently one is so geared up to coping with the negative that good news is perceived as the opposite. Or something like that.

My downer did not last long.  I am over the moon that I can get back into life.  I have been going to the gym a couple of times a week and am up to swimming laps - so far made it to 500 metres. I used to be able to do a mile (1.6km) in half hour, so I still have a long way to go. And, for the past three weeks I've hardly used the walking stick. Woohoo!

ps. I just found this entry that I didn't publish. So, I am publishing it now. Makes sense in April.....