1. I don't want to die in a hospital bed or on a ventilator. We rarely have the ability to choose what our deaths look like so I am unlikely to be able to die on lush green grass by a babbling brook, with warm sunshine on my face, flowers in my hair, and a white unicorn at my side... But I know I definitely don't want to die hooked up to bleeping machines in a windowless hospital space with the smell of sanitiser in the air and the next patient desperate for my vacated bed.
2. My husband and I walked from Paddington down to London Bridge for a routine hospital appointment last week to avoid using public transport. When we got to my hospital, he wasn't allowed to come in with me so he went and sat in an empty pub and chatted to the bar lady about her lung disease and how many bottles of hand sanitiser had gone missing in the past week!
3. I campaign for access to medicines. Even as this crisis is seeing cancer patients refused their medication for their own safety, I am continuing to talk to people about the formal restrictions in place preventing clinicians from being able to prescribe the best medications for each of their patients. Before COVID-19, HER2+ metastatic breast cancer patients couldn't access Herceptin after they'd experienced two lots of progression, perhaps after this crisis they will be able to… Conversations about other healthcare issues must not stop.
4. Treatment of conditions other than COVID-19 cannot stop. We don't want to see a wave of increased mortality in patients with unrelated illnesses such as cancer or diabetes because the medical establishment was distracted and failed to look after them properly.
5. I feel most unsafe and at risk of infection in hospital around healthcare professionals and sick people. Please, if you have symptoms of the coronavirus, stay home unless you absolutely have to seek medical advice. Some of us still have to see our medical teams regardless of this pandemic, so avoid spreading it to an environment where vulnerable people may be exposed if you possibly can.
About Emma Robertson
”I was diagnosed with ER/PR+ primary breast cancer aged 31, at the beginning of 2013. Having been through 9 months of tough but “curative” treatment, it was a relief to be sent away with a packet of pills labelled Tamoxifen. Unfortunately, after a year of taking this drug, I presented with swollen lymph nodes and further tests revealed secondary breast cancer with lung, liver and bone involvement. This was early 2015 and it was a devastating diagnosis to be given at 33 years old. Treatable, the Dr said, but not curable.
Fast forward to 2020 and I am still being treated for my incurable disease. I live on a one hundred and twenty year old Narrowboat in West London with my husband and cat and have taken up beekeeping. I campaigned with Just Treatment for others to be given NHS access to the CDK4/6 inhibitor Palbociclib and love to make mischief by asking difficult questions.”
You can read Emma’s blog about activism, advocacy, bees, boobs, and cancer, here.