March 2010
G'day
Thanks for all your thoughts and best wishes.
Saw my oncologist yesterday and we are going to play it cautiously and wait another three months and have another set of blood tests. A CT scan has been booked so we can see if it has spread and if so by how much.
He is a bit worried about new research on the side effects of the treatment: weight gain - yes to that; fluid retention - yes to that; diabetes - so far no; heart problems - so far none; osteoporosis - so far none.
I'm happy to go along with that as I don't like the cognitive side effects, the mood swings and other menopause like effects - I've been through menopause six times so far and I'm not too keen on the seventh time.
Cheers
Sailor
The sea is the soul extended - Anon
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March 2010
Hi Jill
The pain summit went well. What are we asking for? Pain as the fifth vital sign - that means it will be included in all observations along with temperature, blood pressure, pulse rate and respiration. That pain and pain management be included in the template used by hospitals and specialists to send a letter back to your GP or other specialist. That all cancer patients be informed about pain management and told ways that they can manage it themselves. That all medical practitioners receive education about pain management. In the general pain area, that chronic pain be seen as a condition in it's own right.
There are a few more things on the wish list that will be raised soon.
cheers
Sailor
A ship is safe in harbor, but that is not what a ship is for. Anon
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March 2010
I guess someone found my tongue in cheek moan about Dorovitch offensive as it appears to have been removed. Strange my poems berating Dorovitch about their late delivery of results last June are still there. Maybe prose is more offensive than poetry. Harker - be careful, I don;t think they are your favourite organisation either.
Well ten days after they took blood I got the results with the following message:
These results have been released under the Privacy Act (Cth) and the Health Records Act (Vic). The results and any interpretive comments on the report are primarily intended for the requesting medical practitioner. We would therefore urge you to seek medical assistance in the interpretation of the attached results,
First time I have had this. The strange thing is my medical oncologist, whom I am seeing tomorrow, always requests a copy go to me. The appointment to see him was made six months ago! Clearly the author of this note does not think I should have a copy of my own pathology results.
However, what were the results. Everything within normal limits except for the blood marker for cancer. It is rising rapidly. So it will be a more scans to see where it has spread to now and then back onto therapy again, to see if it still works. I guess it has always been a case of when, not if!
Cheers
Sailor
I must go down to the sea again,
to the lonely sea and the sky;
and all I ask is a tall ship
and a star to steer her by. John Masefield
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March 2010
Hi Wifey B
Ring the Cacner Helpline 13 11 20. trhey have some really great material on talking to kids about cancer and death. At least in Vic they do, so I assume all others do as well.
Regards
Sailor
For life and death are one, even as the river and the sea are one. Kahlil Gibran
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March 2010
Hi Carolyn2
Firstly it is your right to get a second opinion and you family Dr does not have a right to refuse to refer you to someone. If they do they are leaving themselves wide open to major problems. You however do not have the right to demand treatment. So if your family Dr wont send you for a second opinion when you politely request it, maybe it is time to change family Dr. That may be easier said than done as you may live an area where there are not many alternatives. Ring the Cancer Helpline 13 11 20 and discuss your situation with them. Also try to get connected to a major hospital where your case will be considered by a Multi-disciplinary team - ask the surgeon whether or not he is part of an MDT - if he is not find someone who is. It is well established that you get better treatment and better outcomes when you have multi-disciplinary care.
Good luck
Sailor.
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
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March 2010
Thank you CATS, but how did you know?
Sailor
A sailor’s joys are as simple as a child’s. Bernard Moitessier
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March 2010
Hi Missy Moo
No you are not being irrational, you are being very normal. It is a feeling that I and many others have expressed from time to time. You are having to deal with a lot and don't need some of the trivialities of saome other people.
Hang in there.
Sailor
Any fool can carry on, but a wise man knows how to shorten sail in time. Joseph Conrad
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March 2010
Hi Joanna
Several people have already suggested the cancer helpline and that is great advice. Over the last few months I have had several friends die of cancer. One didn't really have time to tell their family, it was a month from diagnosis to the funeral. One was well past their use by date so the family had been expecting it for a long time. My friendy had a good quality of life up until a few days before they died. Another just decided that enough was enough, any more treatment was futile and just told the family that they were not having any more treatment. One member of the family did not accept it and made life difficult towards the end by keeping on insisting that my friend ought to have more treatment.
Several years ago a colleague diagnosed at the same time as I was, was told that she had at the most three weeks to live - gather the family around. The family came from all over the world, said their good byes and she went on to live another four months. She told me in our weekly telephone conversations that she felt such a fraud, but on the other hand it gave her time to tidy up a lot of loose ends, to write the story of some of the artifacts she had round the place and what they meant to her. We used to joke that if she didn't answer the 'phone when I called on Tuesday and hadn't rung me by Wednesday of each week, then I would get on the web and look up her obituary.
Many, many years ago I heard another story of a young man dying of an incurable genetic condition. Just before he died he asked a friend to get some photo's printed that he wanted to give to different people. The friend complied and when they were delivered the young man wanted to pay for them. The friend wouldn't accept payment and told the young man to have them as a going away present.
So I hope the next days/weeks/months for you are good ones. That they enable you make all those arrangement that you will have to make . That you will have good care and a good quality of life but above all peace.
Regards
Sailor
And when the day arrives I'll become the sky and I'll become the sea and the sea will come to kiss me for I am going home. Nothing can stop me now. Trent Reznor
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March 2010
Hi Chris
Morphine patches are a slow release was of delivering morphine that can mean excellent pain control without the depression and other side effects that some people can have with morphine. What they are trying to do is to give your Dad as good a quality of life as they can. What you need to do is ask for information from the nurses or the treating specialist. Explain that you don't fully understand what is happening and that you have some pretty important questions that you need answers to. If they are too busy at the time ask when would be a good time and make an appointment.
Pain control is something that often is not well managed, but because they are trying to get good pain management doesn't indicate end of life. Good pain management should start from the time of diagnosis and be part of the planned treatment. Cancer pain is something that many patients have quite early on in their journey.
Cheers
Sailor
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March 2010
Ah Teacher Mum
Us university staff (now ex university staff - I guess that makes me a has been!) never know where to look with the antics of some of our adult students. At least you weren't the student who wanted to show me her caesarian section scar when she heard that I had been in hospital for therapy over January. We left with the agreement that I wouldn't show her my scars if she didn't show me hers - and this was in front of the rest of the class. You rapidly learn it is safer not to look and never to comment.
On a more serious note - living with cancer, or the expectation of more cancer, is a right pain. It is learning to manage the 'when not if' scenario. The Cancer Council does run some excellent Living with Cancer programs and I know that they run them in regional centres - give 13 11 20 a call and they can tell you when the next one is. They also have done some 'When Cancer Won't Go Away' sessions.
Hang in there and growl like a Cougar.
cheers
Sailor
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