Gay’s Story
I realise now, as I am trying to put this update together, why I have put off writing this background info about myself. The reason is that I really didn’t want to have to think about that time again, because it was a very upsetting crazy time.
Short version is that I was misdiagnosed. Initially I was told that I had early breast cancer but, after asking lots of questions and pushing to be heard, I had scans which showed that I had stage 4 breast cancer with bone metastases. Once I had this news, the crazy ride began. I started with chemo to shrink the tumour, a double mastectomy with auxiliary clearance to both sides and then I had radiation. I was fortunate that I had a great surgeon who understood when I asked for a double mastectomy and, this turned out to be a great decision, because there was a small amount of cancer in the other breast. I have often felt that I have a guardian angel helping me make decisions about what I should do, as crazy as that sounds, I really believe that. In the last couple of years the cancer has moved into my liver.
I have had various treatments and am now being treated with Eribulin. I also have bondronat to help with my bones. Some of the treatments have worked and some have not worked. I have never had any symptoms from my cancer and I closely monitor my cancer markers to work out if the current treatment is working or whether I need to change to something else.
I did have an unsettling experience in June last year when I developed a strange anemia and the cause could not be explained. I was very spooked and I was sure I was on my last legs. I had to undergo quite a few blood transfusions and it was some time later when my oncologist worked out that it happened because of the cancer in my liver. My treatment was then changed and I recovered from the anemia.
I had no clue about breast cancer and the only person in my family that I knew had breast cancer, was my paternal aunt and I believe she was in her 70s when she was diagnosed. I was 46 when I was diagnosed. The only person I had heard of who had breast cancer in her bones was Belinda Emmett and she had died, so I was really spooked about my situation.
As I look back now, some things I have learnt are:
Even though I am being treated in the public system, I have control of my treatment. My initial oncologist and I were not a good fit. Once when I asked a question she told me “that I would need a science degree for her to answer that”. I was a bit stunned and, after thinking stuff you, I spoke with the breast care nurses and changed to a different oncologist who is a better fit for me and I have not looked back since. I need to feel that the people treating me, are in my corner.
Before each appointment I write down any questions that I have. I know that I can get easily distracted depending on what news the oncologist may give me. I always make sure that I have my oncologist’s attention in the appointment. I am aware that she sees lots of patients and she cannot have all my details in her head. I make sure I have thought about what will be the next step and then I discuss it with her.
Deal in the facts. This is a little hard to explain but some examples are, after I had my breast surgery it was mentioned to me that the pathology techs couldn’t find cancer in the tissue that was removed. Unfortunately it turned out, once they had investigated further, I had lots of cancer. Another time, a fill in oncologist was discussing my scan results and said improvement in my scans was to be expected but I knew this was not true. Cancer is unpredictable and treatments don’t always work. So, by the time I had some scans done in mid 2010, I was very tearful as I lay in the machine because the tech was taking what I believed were extra shots. So through my tears he whispered to me that there was improvement and I said to him, that until he wrote it in his report I wasn’t going to believe it. Thankfully he did put it in his report.
Metastases can be controlled with treatment. I never knew that. When I was first diagnosed I thought I would die reasonably soon and thankfully, that has not been the case.
Sometimes treatments don’t work but it doesn’t mean it is the end for me. At this time, there are still other treatment options available to me.
It has been very helpful seeing a psychologist. I find it helpful to have a safe place to talk about what is going on and all the feelings that I have and she gives me strategies to cope.
It’s never okay to be unkind to other people, just because I am going through this. Everyone has stuff they are dealing with, this just happens to be mine.
I am so very pleased and happy I am still here.
On the family front, my husband Paul and I married and emigrated from Ireland in October 1985 and it has been an adventure. I have two kids, Clare and Owen and a new one Kiernan, who I “adopted” into the family when he married Clare earlier this year. All going well, next April I will be a grandmother and since this is something I never expected to experience, it is great fun sharing this time with my daughter.
Finally, I like to think about this:
Each morning when I open my eyes I say to myself I, not events
have the power to make me happy or unhappy today. I can
choose which it shall be. Yesterday is dead, tomorrow hasn’t
arrived yet. I have just one day and I am going to be happy
in it.
December 2017