There has been a lot of debate recently around the quality of life of secondary breast cancer patients. This has been brought about by the rejection of a drug targeted at patients like me. It is one of a long line of drugs that have been rejected by NICE due to the huge cost the drug companies charge. I understand the predicament and I wouldn't like to be the ones having to balance treating patients and a reducing budget to do it with. What makes it harder is the Cancer Drugs Fund, which was the compromise set up specifically for these cases, isn't a perfect solution, it only covers England (sorry to all you cancer patients in Wales and Scotland) and it only runs until 2016 with no plans in place for what will replace it.
Of course all this makes me angry but what really upset me was a well respected journalist writing about the rejection and saying our lives weren't worth it in the process. She described these drugs as false hope as they weren't curative. This is such an insulting thing to say as if you extrapolate that argument it means that from the point of a metastatic cancer diagnosis (when the cancer can be managed but not cured) we should be left for nature to take its course.
The thing is, treatments given after an incurable diagnosis are given to control and relieve symptoms and side effects, and chemotherapy is often given for this purpose. Drugs are also given to try and stop the growth of the cancer and control it to give periods of remission. It was in one of those periods of remission I was able to be the chair of my industry institute. Not too shabby for an incurable cancer patient.
The main thing discussed is quality of life. People who don't understand the journey or what it's like always bring out arguments like 'these strong treatments affect quality of life so much that these patients are killing themselves by taking them' and 'where is the dignity in that?' Maybe that is what this lady thought by calling palliative chemotherapy treatment 'false hope'?
This makes me think about quality of life, as you will have read in my last two blogs it's a big issue in my journey at the moment, as my life has changed forever now. My life is being in bed or on the sofa. It's having friends visit for a few hours a day to keep me company. It's having relatives stay to give me a break from having to look after myself.
Sure, life doesn't look like what it used to, but it's still a life. I'm still able to contribute to society through these blogs, through helping others in a support group, giving awareness raising speeches, being a friend, a daughter and a sister.
How can anyone else judge this and deem it not worthwhile? We support many people in society with care and medication who have a much lower perceived quality of life than I do, so why judge me for mine? I write to try and help people understand what living with secondary breast cancer is like from a very honest point of view, but until you have walked in the shoes of someone with an incurable diagnosis, you are not able to judge.
I mourn the loss of my old life, but I am making the most of what I have right now. You will be pleased to read I have taken the jump and confirmed two holidays. The first is to the Amalfi Coast just before the end of treatment. It will be amazing to look out onto the sea and the view and feel the sun on my face for the first time in a year.
The second trip is with my best friend Ross. We are going for a week of glamour and glitz on Lake Como in July. It will be busy and crazy and wonderful, and I can't wait. Of course I will spend lots of time in my room on both trips but to just be away and looking at a different view will make it all worthwhile.
That's the thing with treatments giving us more time. To a healthy person, or even someone who has had a primary cancer diagnosis, all the treatment, side effects and changes we go through for six months seems crazy. But for me and my friends and family? Six months is enough time to have that last holiday, make some new memories, share some more love. Those people are going to have to live a lifetime without me in their life, so a treatment that can give me more time gives them all more time too.
For more information about secondary breast cancer, visit www.breastcancercare.org.uk/secondary