It's good to whinge now and then. Get the frustrations out and move on. I've been winging for a week now, because the pain in my joints is getting worse from the Exemestane and it's particularly bad today.
I wrote this a week ago. Probably went to sleep after taking the pain killer. Now, I want to complain about my gut. Ever since I went back on the Exemestane at the end of July, I have had bouts of really bad gut pain, or pain just under the ribs, where my hiatus hernia used to bother me, and throw up anywhere between 1-5 times. I did see the Professor once, but he didn't seem fussed. Of course it's not his gut and not his day completely washed out.
I am having one of those days today. After a fitful night of waking up to go to the bathroom, I felt very nauseated and took a Maxalon, my wonder pill against nausea. Well, well, well. Within 5 minutes I was vomiting.
I am very frustrated, as you can tell by now. I was supposed to go to a meeting this morning in my community volunteer capacity. I really wanted to go, to learn. I had to cancel. Grrrr.....
I am frustrated. I have come up with a project to help community harmony and am not amused that my body wants all this attention. We are having a mind/body disagreement at the moment. It goes like this:
Body: Hey babe, I want you to pay attention....
Me: Ignore it...
Body: OK, sorry I called you Babe, but will you listen to me?
Me: Oh, you talking to me? What's wrong.
Body: I don't know... grumble....
Me: Well, let me know when you know....
Body: You don't even care....
Me: Of course I care, but I can't do anything if you don't know what's wrong with you? You look great! You look healthy, the doctors told you all your lab tests were normal....
Body: NOT ALL!
Me: So, the cancer markers are up a bit. That's nothing to worry about.
Body: I'll show you..... (the body heaves, shoves, produces pain in unlikely places)
Me: OUCH! You don't have to do that!
Body: Yes I do. If I don't make you really sick, you don't listen to me. I am just giving you some warning signals that all's not well.
Me: OK, OK. I GOT IT. But if they can't show anything wrong in the lab, they have no idea why you keep warning me. And you are driving me crazy.
Body: Well, it's your funeral. I am warning you. PAY ATTENTION.
I pick up the phone and call the doctor. He is away this week.
OK, so there's a bit of artistic license there, but really.... I am very frustrated, but writing it down makes me feel better. Roll on next week.
Wednesday, September 10, 2014
Monday, August 25, 2014
One step forward, one step back
My big fat 70th birthday seems a long way away already. Granted I've done quite a lot, but there's been movement in the negative direction of my cancer and it makes me weary. Is this how it's going to be? How long? Do I have time to do all the things I want to do? Will I see my grandchildren grow up and have their own children? Existential questions that have no answers. I don't like that. I need to know how to plan things, even though I am pretty good now about being flexible with my time and energy.
OK, let's talk turkey. The Big C. I saw the professor on 23 July, a couple of weeks after seeing my GP for a bout of heavy vomiting, which pulled a muscle in my chest. Felt like I had hairline fracture of the ribs. It wasn't. And my regular blood tests were perfectly normal. I joked that I am healthy as a horse, the only thing wrong with me is metastatic breast cancer. We laughed. Cheery thought.
So, I went to see the Prof with some trepidation. My fears were somewhat confirmed. The cancer markers have risen, so I have to go back on Exemestane. Actually, he gave me a choice of either Exemestane or Tamoxifen. I recalled all the horrible side effects of the latter and chose the big E, knowing full well that it will make me a cripple, or at least cause great pain in the joints. Well, I was going to deal with that - with acupuncture.
I had been going to an acupuncturist for almost 15 years after a nasty ankle injury that would not settle. My guy is an amazing Traditional Chinese Medicine (TCM) doctor, who has sorted out most of my aches and pains and hormone imbalances over the years. When I go to him regularly, everything seems to be less extreme. Unfortunately, his fees have gone up over the years, so I haven't been to see him for over a year. Now, at the Chris O'Brien Lifehouse they are offering all sorts of allied services, including acupuncture – at half the price. Yes, I decided to try it out. The woman is very good, but the first two treatments were so deep (with electricity) that I was exhausted for two days after treatment. Last week I asked her not to use electric current. It was better, but still not as good as my old man. I am torn whether to go back to him or not. My private health insurance doesn't pay for acupuncture.
It's a funny thing about acupuncture. People think you have to 'believe in it' to think that it works. What utter nonsense. I don't 'believe in it'. It works for me. Chinese herbs don't, but acupuncture does. It works, because my man knows what he is doing. He is steeped in the tradition. Each time I see him, he takes my pulse and treats me according to what his examination of the moment requires to balance my metabolism. He is not a western trained medical doctor who has taken a 6 months course and thinks he is now ready to DO acupuncture. Not that the woman at Chris O'Brien is like that. She is not. But somehow I sense a difference and I can't put my finger on it and that bothers me. I have to reflect on that.
I feel like I am at the beginning of an unreal reality, if that makes any sense. I know I will never be the same as I was, but I can't figure out – yet – what I'll become. In other words, how to minimise the various side effect that may come my way, not lose hope and continue with the things I love to do – write and get involved in social justice issues. I feel very unreliable and fear that this may become a permanent feature of my life. How do you manage things within total uncertainty? That's another thing to ponder.
Well, now that I have completely depressed myself, I guess I will stop thinking and look at a picture of my son and his family who are in far away Florida and pray that I will make the visit this coming November. I've been planning a visit for the past two years, with no success. Maybe this will be the best birthday present from the Universe and I'll make it this time? I hope so.
OK, let's talk turkey. The Big C. I saw the professor on 23 July, a couple of weeks after seeing my GP for a bout of heavy vomiting, which pulled a muscle in my chest. Felt like I had hairline fracture of the ribs. It wasn't. And my regular blood tests were perfectly normal. I joked that I am healthy as a horse, the only thing wrong with me is metastatic breast cancer. We laughed. Cheery thought.
So, I went to see the Prof with some trepidation. My fears were somewhat confirmed. The cancer markers have risen, so I have to go back on Exemestane. Actually, he gave me a choice of either Exemestane or Tamoxifen. I recalled all the horrible side effects of the latter and chose the big E, knowing full well that it will make me a cripple, or at least cause great pain in the joints. Well, I was going to deal with that - with acupuncture.
I had been going to an acupuncturist for almost 15 years after a nasty ankle injury that would not settle. My guy is an amazing Traditional Chinese Medicine (TCM) doctor, who has sorted out most of my aches and pains and hormone imbalances over the years. When I go to him regularly, everything seems to be less extreme. Unfortunately, his fees have gone up over the years, so I haven't been to see him for over a year. Now, at the Chris O'Brien Lifehouse they are offering all sorts of allied services, including acupuncture – at half the price. Yes, I decided to try it out. The woman is very good, but the first two treatments were so deep (with electricity) that I was exhausted for two days after treatment. Last week I asked her not to use electric current. It was better, but still not as good as my old man. I am torn whether to go back to him or not. My private health insurance doesn't pay for acupuncture.
It's a funny thing about acupuncture. People think you have to 'believe in it' to think that it works. What utter nonsense. I don't 'believe in it'. It works for me. Chinese herbs don't, but acupuncture does. It works, because my man knows what he is doing. He is steeped in the tradition. Each time I see him, he takes my pulse and treats me according to what his examination of the moment requires to balance my metabolism. He is not a western trained medical doctor who has taken a 6 months course and thinks he is now ready to DO acupuncture. Not that the woman at Chris O'Brien is like that. She is not. But somehow I sense a difference and I can't put my finger on it and that bothers me. I have to reflect on that.
I feel like I am at the beginning of an unreal reality, if that makes any sense. I know I will never be the same as I was, but I can't figure out – yet – what I'll become. In other words, how to minimise the various side effect that may come my way, not lose hope and continue with the things I love to do – write and get involved in social justice issues. I feel very unreliable and fear that this may become a permanent feature of my life. How do you manage things within total uncertainty? That's another thing to ponder.
Well, now that I have completely depressed myself, I guess I will stop thinking and look at a picture of my son and his family who are in far away Florida and pray that I will make the visit this coming November. I've been planning a visit for the past two years, with no success. Maybe this will be the best birthday present from the Universe and I'll make it this time? I hope so.
Wednesday, July 23, 2014
Another milestone
I am going to be 70 only once! - I told myself as I planned a celebration and thanksgiving for all the good things in life, my family and friends, and the beauty of life and nature. 'It's time to turn away from the dark things that are afoot in the world today, the hate, the intolerance and the inability of people to get along. For once, I will focus on the positive, the beautiful and awesome'. And I did.
It actually started with my friend Marianne's decision to organise a party for me with our mutual friends. Marianne is my oldest friend in Australia. She called me to introduce herself two weeks after my arrival, as she was friends of my family in Melbourne. We have been friends ever since and she has been my rock when things became hard for a while.
While Marianne 'did her thing', I thought it would be nice to have my own party to thank all the people who have supported me during my illness last year. As I don't have much money, I negotiated a very reasonable per head price for a party with my local cafe, which opened about the time I was first diagnosed with cancer in 2006, and where I have been a 'regular', with all my ups and downs.
Both parties were sensational. The Cafe Cabaret was first. I had friends from almost every aspect of my eclectic life - family, writers, filmmakers, singers, actors, scientists, journalists, community organisers, etc, etc. My friend Dahlia Dior adapted Sophie Tucker's 'Life Begins at 40' monologue to 'Life begins at 70' and sang Edit Piaf's 'Non, Je Ne Regrette Rien', which brought the house down and everyone in the cafe sang it with us. Then, my multitalented actress friend, Abi Rayment read the poem my friend Sue Cartledge wrote for the occasion. And, of course I gave a big thank you speech for all that people did for me during the past year. One of the most touching moments for me was when James Balian, a writer I greatly respect, but don't know very well, dropped by 'just to give you a hug', because he didn't have time to sit down with us. His thoughtfulness really made my evening.
Marianne's party was different. It was all old friends who have known me for a very long time and with whom I have had very close personal bonds almost from my arrival in Sydney in 1991. It was amazing. The food at both events was sensational. I am still watching my weight from it (just kidding). I think the T-shirt from Tunde is very appropriate for my week of celebrating My Big Fat 70th Birthday.
And a heartfelt thanks to everyone who enabled me to forget the Big C for a whole week. It was a wonderful respite. Thank you.
Tuesday, May 13, 2014
Mind/Body days
Thursdays have become full, navel gazing days. Sorry, I should say personal growth days. A day when I focus on both my mind and body to get well, or at least better, from past misadventures.
OK, so what's with the mind, you might ask. Just very briefly, I have had what some people call: an interesting, or eventful, or amazing life. Oh yeah? Well, if you can call losing a twin sister in war, escaping from a revolution, being raped, beaten, and who knows what else by spouses and others, etc, etc. Yes, I have had an interesting life. I don't talk about it normally, but the fact is that I have had many episodes that engendered post traumatic stress - the nightmares, the fears, the ruminations (that's what it's called, I am told, when your mind goes round and round with the old stuff). Yes, I've learned to cope and got on with life. Or did I? Since my brother died last December, some of the old ruminations have resurfaced and with the constant reporting of events in Syria and what's happening with the children there, some old scars from being a child refugee and stateless person for 16 years have also reopened.
One day, I just had enough.
'Isn't it enough that I have cancer, I now have to revisit all this crap too?' I cried into the emptiness of my apartment. I realised that, in order to deal with my metastatic breast cancer (official diagnosis now), I will have to lay the past to rest, or I won't cope. So, I took my own advice to my mother, whom I tried to get to see someone in the 1980s to deal with her Holocaust trauma, and referred myself to STARTTS, the NSW Service for the Treatment and Rehabilitation of Trauma and Torture Survivors. I am now going through Cognitive Behaviour Therapy (CBT). It's kind of interesting in an intellectual way, but am not too keen on having to write down how I feel, what I think, etc. I mean how do I know? It passes and I forget. Maybe that's how I coped before, just putting it out of mind. How do you undo a lifetime of habits that worked, but apparently now don't work as well? A conundrum
So, now to the body part. I have my session with the psychologist at 10am and then at noon I go to the new and fantastic Chris O'Brien Lifehouse, where Michael, the exercise physio, puts me through my paces in cardio exercises to improve my strength and balance. It's much more pleasant than the psycho stuff, but since I hate the gym, it's still a challenge.
Tomorrow is Thursday, but it will be different. I will go for the CBT, but at noon I will be facing The Professor to learn how my cancer is doing. I am not looking forward to it. I haven't been feeling very well for the past couple of weeks. The pain in my joints is getting worse and now I also have pain in the chest area. I haven't gone to the emergency to check whether it's a heart attack, because I have so many aches and pains that I am pretty sure it isn't. How do I know? Well, of course I don't, but I've been doing chest muscle strengthening exercises, among the many others, so it stands to reason that they are probably screaming for me to let them be.
Nevertheless, I am a cautious madam and have a long list of grievances and questions I take with me to the Prof. I'll spare you the details for now, but will report in my next missive.
OK, so what's with the mind, you might ask. Just very briefly, I have had what some people call: an interesting, or eventful, or amazing life. Oh yeah? Well, if you can call losing a twin sister in war, escaping from a revolution, being raped, beaten, and who knows what else by spouses and others, etc, etc. Yes, I have had an interesting life. I don't talk about it normally, but the fact is that I have had many episodes that engendered post traumatic stress - the nightmares, the fears, the ruminations (that's what it's called, I am told, when your mind goes round and round with the old stuff). Yes, I've learned to cope and got on with life. Or did I? Since my brother died last December, some of the old ruminations have resurfaced and with the constant reporting of events in Syria and what's happening with the children there, some old scars from being a child refugee and stateless person for 16 years have also reopened.
One day, I just had enough.
'Isn't it enough that I have cancer, I now have to revisit all this crap too?' I cried into the emptiness of my apartment. I realised that, in order to deal with my metastatic breast cancer (official diagnosis now), I will have to lay the past to rest, or I won't cope. So, I took my own advice to my mother, whom I tried to get to see someone in the 1980s to deal with her Holocaust trauma, and referred myself to STARTTS, the NSW Service for the Treatment and Rehabilitation of Trauma and Torture Survivors. I am now going through Cognitive Behaviour Therapy (CBT). It's kind of interesting in an intellectual way, but am not too keen on having to write down how I feel, what I think, etc. I mean how do I know? It passes and I forget. Maybe that's how I coped before, just putting it out of mind. How do you undo a lifetime of habits that worked, but apparently now don't work as well? A conundrum
So, now to the body part. I have my session with the psychologist at 10am and then at noon I go to the new and fantastic Chris O'Brien Lifehouse, where Michael, the exercise physio, puts me through my paces in cardio exercises to improve my strength and balance. It's much more pleasant than the psycho stuff, but since I hate the gym, it's still a challenge.
Tomorrow is Thursday, but it will be different. I will go for the CBT, but at noon I will be facing The Professor to learn how my cancer is doing. I am not looking forward to it. I haven't been feeling very well for the past couple of weeks. The pain in my joints is getting worse and now I also have pain in the chest area. I haven't gone to the emergency to check whether it's a heart attack, because I have so many aches and pains that I am pretty sure it isn't. How do I know? Well, of course I don't, but I've been doing chest muscle strengthening exercises, among the many others, so it stands to reason that they are probably screaming for me to let them be.
Nevertheless, I am a cautious madam and have a long list of grievances and questions I take with me to the Prof. I'll spare you the details for now, but will report in my next missive.
Monday, April 28, 2014
Doing the Limbo dance
I just posted something I wrote earlier this year. Why now? Because I forgot to post it and things have been pretty hectic since then.
Yes, things have progressed pretty well so far this year.
First of all, I am back at my temping job on a regular basis, although I have still not managed a full six hour shift. I do phone interviewing for the NSW government's Population Health Survey. I've been doing it for 10 years now. It has very flexible hours and the people are great. It's an interesting mix of students, professionals between jobs or in the throws of career change, housewives with small children and grandmothers with various health issues like me. Originally I started to work here when I was working on my never-to-be-completed documentary, just to make sure that I have some income coming in while I spend all my money on research and development and writing a sci-fi screenplay. When the documentary fell through, and the screenplay got only a 2.5 star from a Hollywood reader, I continued 'until I re-establish' my freelance writing business. Well, the proverbial sh...t hit the fan with my first cancer encounter in 2006. I stopped working and the lovely people at NSW Health received me with open arms when I returned a year and a half later. Their support and the knowledge that I can go back any time, has been really helpful in not losing my link to the real world during all my travails. So, I am back. I try to work three 5 hour shifts a week, but I don't always make it, but every bit helps.
And while we are on the job front, I also have a freelance editing assignment, so I think I can safely say that I am back in the saddle as far as work is concerned.
On the health front, I am still madly doing my brain training exercises and I am happy to report that, according to Lumosity, I am in the 99th percentile in brain performance for my age group, so it seems that my brain is back from the chemo fog for good.
On the not too optimistic front, it seems that, while the cancer is improving - meaning that the abnormal level of the cancer marker in the blood is lower - it has not gone back to normal, and my understanding now is that the doctors are not expecting it to go back to normal. I got this not from the Professor, but his stand-in during my last visit, when the Prof was incommunicado due to a knee replacement. I am going to see him in two weeks, when I will double check. In any case, the current prognosis seems to be that the Exemestane is controlling the cancer for now. If it stops doing that, then I will have to have more chemotherapy. And this on and off chemo may be for the rest of my life, which can be anyone's guess how long. As I've said somewhere before, I am told that people live like this for decades. And can I get the abdominal port out please? No! Apparently that can stay in for more than a decade also, and while it was easy to put in, it may be tricky to take out. I'll have to check that one too. Having talked with the new oncologist, I am not sure whether they want me to keep it in because it's complicated to take out, or because they expect me to have more ascites down the line. Neither possibility is very comforting.
In fact, this whole bloody cancer 'journey' (I hate that expression - a journey is a joy, this is a nightmare) is not very comfortable. Unfortunately, it looks like it isn't going away, so a couple of months ago I decided to do some things differently to be able to cope. As a result, I enrolled myself to get help for my post traumatic stress disorder that I had acquired way back when, as a child refugee and other various places. The reason being that I want to clear my head from past garbage to be able to focus on dealing with the cancer in the future. Three weeks ago I started the evaluation process with STARTTS, so I am in the best hands for both my physical and mental health. It's a pretty cool feeling, I must say, and feel I can dance the limbo for as long as it takes (remind me I said this when I start complaining again!)
Yes, things have progressed pretty well so far this year.
First of all, I am back at my temping job on a regular basis, although I have still not managed a full six hour shift. I do phone interviewing for the NSW government's Population Health Survey. I've been doing it for 10 years now. It has very flexible hours and the people are great. It's an interesting mix of students, professionals between jobs or in the throws of career change, housewives with small children and grandmothers with various health issues like me. Originally I started to work here when I was working on my never-to-be-completed documentary, just to make sure that I have some income coming in while I spend all my money on research and development and writing a sci-fi screenplay. When the documentary fell through, and the screenplay got only a 2.5 star from a Hollywood reader, I continued 'until I re-establish' my freelance writing business. Well, the proverbial sh...t hit the fan with my first cancer encounter in 2006. I stopped working and the lovely people at NSW Health received me with open arms when I returned a year and a half later. Their support and the knowledge that I can go back any time, has been really helpful in not losing my link to the real world during all my travails. So, I am back. I try to work three 5 hour shifts a week, but I don't always make it, but every bit helps.
And while we are on the job front, I also have a freelance editing assignment, so I think I can safely say that I am back in the saddle as far as work is concerned.
On the health front, I am still madly doing my brain training exercises and I am happy to report that, according to Lumosity, I am in the 99th percentile in brain performance for my age group, so it seems that my brain is back from the chemo fog for good.
On the not too optimistic front, it seems that, while the cancer is improving - meaning that the abnormal level of the cancer marker in the blood is lower - it has not gone back to normal, and my understanding now is that the doctors are not expecting it to go back to normal. I got this not from the Professor, but his stand-in during my last visit, when the Prof was incommunicado due to a knee replacement. I am going to see him in two weeks, when I will double check. In any case, the current prognosis seems to be that the Exemestane is controlling the cancer for now. If it stops doing that, then I will have to have more chemotherapy. And this on and off chemo may be for the rest of my life, which can be anyone's guess how long. As I've said somewhere before, I am told that people live like this for decades. And can I get the abdominal port out please? No! Apparently that can stay in for more than a decade also, and while it was easy to put in, it may be tricky to take out. I'll have to check that one too. Having talked with the new oncologist, I am not sure whether they want me to keep it in because it's complicated to take out, or because they expect me to have more ascites down the line. Neither possibility is very comforting.
In fact, this whole bloody cancer 'journey' (I hate that expression - a journey is a joy, this is a nightmare) is not very comfortable. Unfortunately, it looks like it isn't going away, so a couple of months ago I decided to do some things differently to be able to cope. As a result, I enrolled myself to get help for my post traumatic stress disorder that I had acquired way back when, as a child refugee and other various places. The reason being that I want to clear my head from past garbage to be able to focus on dealing with the cancer in the future. Three weeks ago I started the evaluation process with STARTTS, so I am in the best hands for both my physical and mental health. It's a pretty cool feeling, I must say, and feel I can dance the limbo for as long as it takes (remind me I said this when I start complaining again!)
Tuesday, February 25, 2014
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......
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......
Saturday, February 15, 2014
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.....
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.....
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