We learnt that the echocardiogram raised no concerns and The Prof. was not concerned about the results of the bone scan or the CT scan.
I left the appointment feeling confident that I was in good hands, although I sensed that he didn’t fully understand my need to have as much information as possible, preferring that I focus on the present issues at hand. Steve seems to relate more to this approach, and whilst I understand that my focus has to be on the ‘now’, I get unsettled by unanswered questions and so I appreciated the answers about genetic testing, CT results and my prognosis.
So, I now know;
The Prof. was not concerned about the results about the bone scan and whilst relieved that the cancer does not appear to have spread, The Prof. appeared to dismiss my question about what Dr Salsbury had said about the scan picking something else up ... I had not thought to challenge this at the time as I really do feel I'm safe hands .. however having two professionals saying different things means this matter is unresolved for me...So not a concern for The Prof. but something I will look further into!
Genetic testing is not a priority in terms of my treatment at the moment, and I was advised that I will need to seek this via my GP. Not a priority in terms of my treatment may be but a priority for me in terms of my family and I will be making an appointment with my GP in the new year. There is history of breast cancer in my maternal family. My Nana, Aunt and a second cousin have had breast cancer. My Cousin died from the disease.
The Prof is aware of the adnexal cyst (?) picked up in my CT scan, but he told me that it wasn't a priority in terms of my treatment…But a priority for me in terms of piece of mind …I had already spoken with the GP about this and an ultrasound scan is already booked in on 8.1.14. The Prof was happy that I continue with this appointment.
The prognosis….After satisfying himself that I really did want to know, The Prof. keyed in my cancer details into a prognosis tool on his PC . We were ‘initially’ told that with treatment, my prognosis at 5 years is over 90% survival and at 10 years is 70%.
Steve and I looked ‘smug’ at each other and I was well satisfied and relieved given the Nottingham prognostic tool results!!!
The scene that followed, however wiped the ‘smugness’ from the both of us… As Steve and I made comments of relief to each other, we could see that The Prof. became distracted and his face ‘dropped' as he told us that he had forgotten to key in some important details in the prognostic tool……
The Prof. duly explained that with the addition of the missing details; My prognosis at 5 years is 65% survival and at 10 years is 30%.....
Worry not say I …knowing ones odds, means knowing what odds one needs to defy…
Having a prognosis may not be helpful or appropriate for some and I wouldn’t recommend that it is sought without serious thought before hand. I knew that with my level of self awareness that my prognosis was going to be of help to me, after all knowledge is power! Steve has been very supportive in my decision to seek a prognosis; however he, himself would not choose to know. Danny, a little like me, told me that he would prefer to know.
Prognosis for me means empowerment and opportunity. I am not preoccupied with the percentages given to me and I remain robust in my determination, however the reality is that I am facing a potentially life limiting disease and I chose to take control and ‘quality assure’(QA) my life .
Those in my ‘social work’ world understand the concept of ‘QA’… an opportunity to take audit, checking in on whether you are making a difference and getting a grip if you are not!!
I remember at the age of 14 when I spent the summer in Spain at ‘English Summer’ with my paternal family. I was having the time of my life and did not know that my mother was dying when I left for Spain. I’m told that my mother didn’t know she was dying either.
Some of my last memories of my mother were laced with 14 year old anger and ‘stroppiness’ as she had not been responding to my letters (no mobile phones and emails then!!) As a 14 year old I thought that she simply didn’t care, where in fact she was too ill to write. I never saw her alive again and we never got to say good bye. I remember being tormented with guilt and regret for a long time and to a certain extent some of the guilt has never really left me.
I believe that had I known she was dying, or had she had known, there would have been opportunities on both parts that might have made a difference to each other. I’m of course not planning on going anywhere for a long time, but the point is, because of what I know there isn't going to be any regrets in my life. This will mean prioritising the important things in life like spending time and memory making with loved ones.
There are of course no guarantees for anyone and I wouldn't recommend that you wait for your own wake up call...It may be too late ....So my lovely family and friends ... Get 'quality assuring' yourselves!!!
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