Apr. 24, 2016

Questions need Answers?

Ok I need to focus on a lot of things today. Firstly I have questioned why I am doing this blog, initially it started out as a record of what I was going through so that my kids would know why things were the way they were. I then decided to share it with the world so that people would know what it was like to live with Metastatic Disease. This was not to make people feel bad for the things they say or do but just raise awareness of the disease and that it can strike anyone and to make people aware that it is NOT curable. And now it has also turned into my fight to advocate for more to be done. I now have to refocus and make sure I am covering all angles.

So here's where I'm at:

I want to talk about what it means to me to be brave. I’m not afraid of dying at all, I just don’t want to die. I am going to be walking around every single day for the rest of my life with cancer eating away at my insides. Cancer is always making decisions and choices  for me BEFORE I get to make them on my own. Unless you go through this personally, you will never know the ultimate strength it takes. The number of friends I’ve lost in the last 6 months to metastatic cancer is more than the fingers on both my hands. A couple of them, hit me extremely hard.I am looking at all the avenues available from alternative cures and therapies to clinical trials and that alone is exhausting. I am doing regular bodytalk sessions which keep the side effects of drugs and treatment at bay. I have to deal with a bloated body so my clothes don't fit properly, the tiredness that comes from cancer and off course the dreaded pain.

The hardest part about it is trying to tell people that I am still sick and I still have terminal Stage 4 cancer when I look what people say "so well". It gets exhausting and sometimes I can’t be bothered so I just pretend like I am okay and be on my way.

Then there is the scan, well, I got it done during the week from neck to hips, and thankfully it shows no progression, now I need to see the pain managment(pallitive care) team to stabilise pain. I still wonder though why the pain has increased so much if nothing has changed. Well that is something to talk to my pain nurse about.

And then there's advocacy, 460 women and men die yearly in Ireland from Metastatic Breast Cancer yet nobody talks about it, very few are even aware of it and none of the breast cancer organisations highlight it. Well this year hopefully that will change, later in the year Pfizer will be launching their story half told campaign, two of the leading breast cancer foundations will be launching different programs for metastatic patients later in the year and I have been asked to attend a conference in Milan in September to represent Europa Donna Ireland as a Metastatic Patient. It has been very hard work to find out this information and achieve what I have to date but this has all come about from the fact that I travelled to Boston last October.

There's also great therapy in accounting for how I am feeling and where I am in my cancer journey. I want to thank everyone for taking the time to read my blog and for sharing it as knowledge and understanding is power.