Myth 3 – stage 4 patients should always be grateful and positive
- “Don’t be negative”
- “But ten months is loads of extra time”
- “You sound bitter”
- “That sounds angry and aggressive”
- “You should be grateful for the efforts of researchers and charities”
- “Be patient”
These are all things I’ve heard since I was diagnosed with secondary breast cancer in November 2017 aged just 33.
I should state upfront that I have massive admiration for cancer researchers. I think the Institute for Cancer Research is particularly awesome. I really do appreciate the scientists who developed Palbociclib. It is keeping me alive. These are great things. Cancer charities (especially the smaller ones) do incredible work.
The reality is though that I’m 34 years old and I am being killed by cancer. I have a disease that on average gives me roughly 3 years before I suffer a horrible death. I love finding people that have lived with stage 4 for 10 years, but that would see me to the grand old age of 43. Wow! I will never have children. Saying that might make me sound negative, but I’m being realistic. I don’t have time to be patient. Without a miracle treatment my remaining life will be best measured in months not years. Of course I’m bitter and angry sometimes, especially on the bad days in the dark hours of the night when bad thoughts love to attack me. I challenge anyone to be 100% positive with a stage 4 diagnosis. On good days I’m happy and love my life but I still know what is coming.
If I challenge a researcher or charity to do more for stage 4, that isn’t me trying to be ungrateful. I’m not criticising everything they have done to help people like me. I am pleading with them to save my life. I dream of a cure but will happily accept chronic. I believe in ambition. 10 months is great, but it is still only 10 months. My friends are planning weddings and babies at the moment. I’m planning my end of life care. Ideally I’d like a bit longer to live and cause chaos. I’m great at causing chaos! When I was born HIV was a mass killer. Now drugs have changed it to a serious but survivable illness for most. Let us have hope and aim for the stars. Please.
I’ve seen several tweets recently from cancer researchers complaining about people demanding more treatments. I really hope they understand it is nothing personal. If it meant I got 10 years I’d beg Putin or Trump for help! I suspect most patients would as well. I really admire what researchers do, I just want more! Yep I was one of those children who wanted their Christmas presents “now” and not on Christmas day. I wanted more presents then 😂. I still do!
In terms of the major charities there has been a LOT written about their lack of funding for stage 4 and bad habit of ignoring us. I make no apologies for demanding better from them.
In terms of access to new and innovative treatments I am really not grateful. The Institute for Cancer Research did a drug access report that showed the delays in getting new and innovative treatments approved. Assuming that they are approved. The system is broken and needs to be reformed. Cancer patients don’t have time to wait for approvals and cost benefits analysis. I’m selfish. If it will save me it is worthwhile. Unless I’m not worthwhile? 😢
Finally there is an ongoing discussion about which hashtags to use to raise awareness of and encourage research into secondary breast cancer. People are trying to decide how positive these hashtags should be. I can see both sides. Anything too negative risks people turning away as they find it too depressing and scary. Anything too positive risks people not realising how many are dying due to secondary breast cancer. I think we need a balance. We need to show that we are living longer and living well, that we are worth the investment. However, the fact is that 30 British people a day are killed by breast cancer. This needs to change. We deserve better. If getting better access to new and innovative treatments involves getting angry, negative, positive, bubbly or even just running for election as an MP then I’m there. I would even do a waltz outside of Buckingham Palace! I will do everything I can to live. I have to. I owe it to myself. I owe it to everyone who loves me. The only thing that outrages me is having to beg for my life. Anyone who only supports us after being begged and shown lots of positive contributions that we are making to society should think very hard about their own morality.
In the meantime I’ll keep showing positive and negative emotions. After all I might have cancer and be #BusyLivingWithMets, but I’m still human. As such I have way too many emotions! Thing is though that emotions remind me I’m alive. Alive sounds pretty good to me!