I have decided to start a diary of my experiences with Prostate Cancer. I know it's a bit (read a lot) retrospective but things have happened that I am worried that I will forget and may be useful later.
I seem to remember a fait bit – dates, good days, bad days etc but with so many things happening it is easy to forget some of them.
My latest incident (which got me thinking about diaries) involved blood in my urine which gradually turned from a few drops to quite red. Initially it was only when I voided naturally and nothing was coming from my catheter and so I wasn’t hugely concerned but it soon started coming from my catheter as well and at that point I took myself to the Emergency Dept at the local hospital. I was given a saline drip and drank a lot of fluids and after a while the red became pink and today at home it is good ol’ wee colour.
As you may be aware one of the side effects of the surgery that I have had is impotence. I have been gently (and I mean gently) encouraging things along in a hope that my ‘manhood’ may return to some of its former glory and may damaged things in the process. The ‘fly in fly out’ (FIFO) ED doctor that saw me suggested that it was an unlikely cause and put it down to alcohol consumption. Given that I am drinking very little since my surgery I am having some difficulty believing that. So she doesn’t think that what I did in the way of encouragement is the cause and I don’t think that alcohol is the cause it leaves me in a bit of a quandary. Hence the diary!
I am sure that many of you keep diaries of the daily goings on and find them useful. I think that those with Breast Cancer are given a diary upon diagnosis.
Apart from that all is ‘good’. I had my Mother here for Christmas. I lost my Father to non-Hodgkinsons Lymphoma in 2003. It was the first time that I have seen her since all of this started. As you would expect she was pleased to see that her first born hadn’t wasted away to a shadow of his former self. She was also pretty pleased to see the rest of my family again too.
I trust you all had a good Christmas and laughed a lot.
Cheers (and beers)
I actually regret not keeping a diary through my experiences. I think that it may have assisted maintaining a perspective.
When my friend died in June 2008, his wife rang me one day and cried after she had read his diaries. WHile we had been friends for 30 years, we became chemo buddies during 2007 -2008 and I was of course devastated by his death.Anyway, his wife had never realised how bad things were for him until she read the diaries.HE wasn't a "writer" and I think to put things down on paper must have helped him enormously.
It would also be a good record of the more mundane things that doctors want to know but that sometimes we forget.
Glad that you had a great Chrissy with your family. I know when I was sick my parents found it to be very difficult.
Some people find it helpful to keep a diary and I have heard many storied of people who have been helped by doing just that. One of the most creative stories I have heard is about the person who had a journal sitting on the table in the hall and any member of the family could write down their feelings in it during the treatment journey. Another person recorded their feelings during the treatment journey through paintings - I have seen them and they are the most evocative and moving series of painting that I have ever seen. So if people want to do that then that is absolutely fine. There are some great stories of peoples experience and some of the things they have done, entitled "You Can - Stories from the Cancer Experience" at http://www.nemics.org.au/Display.aspx?tabid=2731
Me - well I am not the diary type. I have written about my experiences often enough, but find that my story actually changes with the telling as I seek to learn from my experience, find meaning from what has happened and try to establish an identity that incorporates what has happened to me over the past eleven or so years since I was diagnosed. If I want the facts then that is in my medical history, or the record of my blood tests and many scans.
Sometimes I sit through meetings of 'consumers' (hate that word) and wonder what I am doing wrong. I haven't kept a diary or journal, I haven't used complementary or alternative medicines, I haven't done yoga or listened to meditation tapes, I haven't changed my diet or lifestyle - gone vegan or organic- I haven't seen a naturopath or a kinesiologist: I have just tried to get on and live my life. As I said, clearly, there are times I am left wondering what I am doing wrong by not taking up all these possibilities, as I am well past my statistical 'use-by-date' and I have not yet become resistant to treatment.
So if you find doing these things helpful, that is fine and if it works for you I am delighted, but it may not work for everyone.
Have you stood by the ocean on a diamond hard morning
And felt the horizon stir deep in your soul? Eric Bogle, Safe in the Harbour
I have kept a diary, from the first visit to the gyno who told me that it was cancer. Even now, each time I have any procedure, including my colonoscopies, I write something down. I don't try to dwell on what has happened, but it sure makes interesting reading. In some ways I feel that it is therapy for me when I put my feelings down in writing.
I have kept a diary of sorts, mainly dates of when what happened. My friend bought me a diary when i was hospitalised and its been fantastic although its rather large and heavy to carry around.
I have looked back and pulled out some relevant dates which was helpful in me being able to get my peg removed. Some of the dates i found quite incredible that the amount of time had passed in between.
Good luck with it and i hope you find it useful and helpful.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.