Yesterday, Dr Lisa, told me that only one of the three liver function measurements from my blood test was abnormal. It was at 68, instead of the normal 60. So, thankfully, my liver is working excellently.
In simple terms, as long as my liver functions well, I will have a healthy life. I am feeling very well, with reasonable energy and only suffering from chemo side effects. The main one that continues to bug me is the numbness in my fingers and toes. This seems to have continued to escalate. Dr Lisa says to be patient. It will begin to subside soon, taking between two and twelve months to disappear.
For six months I received the main chemo treatment being three chemos over three days, every two weeks. My tolerance was good with not many side effects and no serious problems – no trips to emergency like some I have talked with. Just as well as I had planned my activities during the eleven days between treatments with no expectation that I would have to adjust. So, imagine my surprise when treatment no. 11 was delayed a week! It resulted in a three week instead of two week gap between treatments to fit in with my existing bookings. Overall, I have been able to live pretty normally.
I will always remember the love you showered upon me when I advised by email and letter of my situation. The dozens of emails, some phone calls and visits showed me how much I and my family are loved. All your good wishes and prayers added to my optimism and confidence as I began my treatment. Three of you who have also received chemo for your cancers helped me by ringing and sharing your stories. I remember thinking and drafting my blog entry to advise how I wanted to be treated when I was finding some concerns expressed to me to great to bear. Thank you for respecting my wishes. Your good wishes and prayers are being answered and continue to sustain me.
So far there have been four CT scans. The second showed a 30% reduction in the cancer in the liver, followed by another 9% in the third and then stable to the fourth. The measurement is based on the two large lesions. When we looked over the four sets of scans, the liver looks much clearer now. It seems most of the little lesions, which looked like a milky cloud, have disappeared. Dr Lisa says it is reasonable to describe the cancer as dormant.
Now I am in maintenance mode with Avastin chemo once every three weeks plus eight Xeloda® Capecitabine chemo tablets a day for two of the three weeks. A CT scan will be taken every three months to monitor the cancer. My hope is that the cancer remains dormant for a long, long, long time!
I am also grateful to my fellow Australians for making my journey much easier on my mind and pocket. During my journey we have been aware of the debate and angst in the USA over public health benefits. While Americans think education is a public good, they do not think the same of health. Australia follows the European model where we regard health as a public good, like education. I can assure you that this has provided me with enormous comfort. I remember leaving Dr Lisa’s office with my daughter after my first consultation and stepping on to the footpath and being so aware that my fellow Australians were supporting me. I understand that each round of the three chemos cost about $10,000. I only had to pay a few hundred dollars. This cost does not include the use of the public hospital day facilities. The label on my Xeloda® tablets states they cost $1,383.92. I am only charged $34.20. Under our system, anyone is fully treated and, if unable to bear much financially, it is all for free. Under our system, Barbara and my financial situation remains intact.
I am reminded of studying Mazlow’s Hierarchy of Needs, represented on a triangle, the needs go from physiological to safety to love/belonging to esteem to self-actualisation. The lowest two – physiological and safety – are regarded as hygiene factors. This means that humans need these in place in order to feel basically OK. The three higher needs are motivators but people are unlikely to be motivated by these if the hygiene factors are not in place. I see public goods such as education and health as part of the safety level. It is interesting to note that the Nordic countries always rate highly on a ‘happiness’ index. They are among highest taxed countries in the world, most generous in overseas aid on a per capita basis and big providers of the public good to all their citizens. I think I would not be as happy as I am or feeling so well looked after, if Australia did not have a strong public health system.
Which brings me to the Sydney Cancer Centre at Royal Prince Alfred Hospital. The care, service and attention I have received there over the last seven months has been excellent. As Alison said to me at the beginning: it might be a world standard facility but they are stretched. This is true. I have seen the nurses very tired at the end of a long day. But, patients are always well looked after by all staff. We patients just need to be patient!
How am I feeling at the moment? Frustrated by the continuing numbness in my fingers and toes! Waiting for it to start to subside. On another angle, it is remarkable to have a sense of numbness and feeling at the same time. I have had some funny instances resulting from dropping items due to the numbness. Two more serious ones occurred since my previous blog entries. I was about three rungs up the stepladder that was leaning against the brick wall between us and the neighbours. I was chipping cement rendering from the top of the wall. The phone rang. I scurried down. Next thing I knew, I was sitting on my bottom on the pavers. I have no recollection of falling or landing! Shortly after I was holding a hand held sledge hammer. Next thing, it was on the ground beside but not on my right foot! Again, I had no sensation of the hammer slipping through my fingers. Needless to say, I am taking more care now. I have to use my eyes much more. I cannot assume my hands and feet will automatically do things.
People are interested in my feelings. Much of my blog is like a diary. When I share the activities I am undertaking, these reflect my feelings. These activities and places help provide a sense of happiness and meaning. I have enjoyed seeing many friends and family members in many places over the last seven months. I am so aware that the people in our lives are such an integral part to the meaning and enjoyment of life.
Where better to finish than to thank my close family for their love and support. The news was a shock to us all, requiring time for adjustment. I think now that things have settled down and we are ‘normal’. My family has made it very clear how much they love me and want to be with me. We have seen my brother three times this year. Our eldest and his wife came home from Edinburgh and, with our daughter, are living with us permanently at the moment.
So in a time of challenge I feel very blessed, very well and well looked after.
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