This is actually my first post because it has finally dawned on me that although I have been replying to people since I joined in May my own worries and questions were tagged on to the end of someone else's post. Please forgive me on that one and put it down to me being a total non tech person. This site has been an answer to prayer for me and is full of the most amazing , knowledgable and empathetic women. Without you I think I would have cracked up a long time ago. There are so many of you but I know you won't mind if I single one of you out. Suzuki ! No matter what is happening in her life she has a kind helpful word for everyone. I hope you don't mind if this is a long post but I really need your help and advice. Also I do not want to mention my hospital or location for obvious reasons but I can say I live in Ireland . I really do hope that medical teams do not log on to this forum as the details would be recognised by them. Or maybe I am just being paranoid
I am writing today because I think that psychologically I am at some kind of breaking point. It really all comes down to my medical team leaving me in some kind of limbo. I was diagnosed with stage 3 PPC in May 2011 after many years of knowing that something was not right but my GP at the time put it down to IBS or anxiety. 15 years went by getting the same story.
Then my life changed. I took early retirement and went back to my childhood home to care for my elderly mother. I was more concerned with her health than mine and just lived with what I had been told was IBS until in 2011 I could not ignore that I had gone up 3 dress sizes and when I was trying to sleep I could not move without wobbling and needed the loo many times during the night.
Fast forward through being spotted by a vigilant locum, immediate hospitalisation , lots of tests and the now familiar CA125. Then on my birthday I was told the shocking news although by now I had a good idea that the news was not going to be good. I did tell the oncologist that I did not want to know the prognosis as I would deal with it better not knowing immediately. I have seen this man only once and that was so he could meet me and authorise my treatment. Ever since during my six monthly check with oncology I have met a succession of junior doctors and my questions are answered by my liason nurse. I meet with my really nice gynae every 6 months and he has been the one to order the few scans I have had . The last one was in May 2014 and I was told there was no evidence of disease.
This brings me to the CA125 test. I am aware that this test can show a false positive or false negative but as someone who had a count of 8000 on diagnosis that came down rapidly with carboplatin and taxol I argue that I must be someone who shows a true positive. I get a negative response from my nurse each time I mention it as she quotes the oncologist as saying it only makes women anxious. As my last one was in 2012 my new GP ordered one in May this year which was 17 and I was much relieved by that. Maybe I shouldn't have felt relieved especially as I don't feel particularly well and have unexplained pains which I was told were age related at my last check up . At that same check up last month I was told I was now being discharged as disease free and would just see the gynae every 6 months.
I am really sorry for bring so long winded but from reading all your posts over the past few months I see a huge difference between my experience and most of yours. For instance most of you talk about debulking surgery. Is this only for Ovarian cancer or does it include PPC as it certainly has never been suggested to me as an option. Most of you seem to have a huge knowledge of the various treatments and clinical trials. It is never up for discussion for me and I feel that any questions I have just irritate them. If I mention any worrying symptom I am told to see my GP or that it is just my age.
Over 4 years on I am now getting very weary , despairing and sad. My dear mother who I continued to care for died in Jan and so my reason for getting up every day and putting my best foot forward is not so clear anymore. Maybe I am just going through a bad patch and need to get back to that positive attitude I had during my treatment. If I could just find someone else who can tell me that they went from stage 3 PPC to being told over 4 years later that they were disease free with no surgery and just one 6 month course of chemo then I will have to take it as real . I will even believe that my aches, muscle weakness and extreme fatigue are just age related.
If any of you lovely women have patiently read this long post I must say first of all thank you . I would love to hear your comments . I admire the bravery of each and every one of you and I hope to get back my mojo soon. You have all kept me going in my lowest times. God bless you all
P..S. Is a photo compulsory as the only one I have on me now is a passport photo that makes me look as if I am already dead !