Being written off

One of my favourite movies is the 2019 version of Aladdin. In that movie there is an amazing song called “Speechless”. I particularly love one bit of the lyrics:

“Try to lock me in this cage, I won’t just lay me down and die. I will take these broken wings, and watch me burn across the sky.”

Those lyrics struck a chord with me and sum up how I feel about being #BusyLivingWithMets due to secondary breast cancer aged 36. My body is seriously messed up, but I’m not planning on dying or giving up anytime soon. I’m going to burn so brightly that the whole world can see it. That is if the NHS and the rest of the country lets me…

Why do I say that? It’s because after 3 years of being a secondary breast cancer patient in the UK, I can only conclude that a large chunk of the NHS and the UK in general wants to throw me in the dying cage and leave me to die. Sounds rather dramatic and paranoid I know, but please hear me out! I know there are great NHS staff, but as a system the NHS is failing cancer patients like me. I have 3 key pieces of evidence to support my argument:

Evidence item 1 = fixed treatment lines. Stage 4 patients like me rely on new and innovative treatments to stay living with a good quality of life. With drugs and other treatments we can keep working, raising families and contributing to society. Yet fixed treatment lines mean that new and innovative treatments are often restricted to newly diagnosed patients. Imagine going into a shop with 5 aisles to buy food for a month. Aisle 1 offers curries and roast dinners – but you can only have one item and then you must go to aisle 2. You can never try anything else from aisle 1, even though the food gets less and less appetizing with each aisle. Aisle 5 offers water and sympathy. Once you’ve had that glass of water then you are kicked out of the store and sent in front of a firing squad to die – but they will give you painkillers first. Sound horrible? Welcome to the life of people like me with metastatic cancer. Treatment lines rarely have medical logic behind them – it’s all about the money and outdated assumptions about what life with stage 4 cancer is worth.

Evidence item 2 = the complete and utter lack of urgency to research and release new and effective treatments for secondary breast cancer. I mean it kills 11,500 British women a year aged from their 20s and up, but meh. Breast Cancer Now has the absolutely farcical aim of stopping the deaths by 2050. To put that in perspective that is 345,000 more dead women. Hundreds of thousands of children growing up motherless. If the government announced that they planned to kill 11,500 people a year for 30 years there would be riots. Instead there are just sad shrugs about cancer deaths. Where is the research? There are drugs being developed, but they are aimed at granting extra months at best. Futures and dreams are being stolen every day. When clinical trials run they look for perfect patients and exclude many on seemingly arbitrary grounds such as how many treatments someone has had. Even having two types of chemotherapy can exclude many from trials and deny them hope. Even if new drugs are developed they still have to get past NICE. The appallingly named group who decide whether extending lives like mine is value for money. More often than not they decide we aren’t value for money and steal our hopes of a miracle. Even if they approve the drug it is often limited to newly diagnosed patients. Back to the aisles of death it is.

Evidence item 3 = covid. Where to even begin with this one? I’m still reeling from the sickening shock of a former supreme court justice being allowed to say on tv that the lives of people like me with metastatic cancer are “less valuable”. That was a knife to the heart. During the covid outbreak cancer patients have been treated like shit. So much has been written about this by patients that I won’t repeat it all here. But try and imagine being told that if you catch covid you won’t be treated in ICU. Being pressured to sign a DNR order and told they wouldn’t even try to resuscitate you if you stopped breathing for any reason. Being asked to consider writing an end of life care plan that would state you don’t want to be taken to hospital. Being encouraged to stop the cancer treatments keeping you alive. All of which is “for your own good”. All of which happened to me on the day I entered shielding. I’ve since come across countless cancer patients who have died after treatments were stopped or clinical trials halted to free up resources for covid. I’ve seen cancer research charities celebrating stopping cancer research to help with the covid fight. I’ve seen the whole country be locked down due to 350 covid deaths in a day and while I’m glad about the efforts to stop covid deaths I also feel heartbroken. Because where are the efforts to stop cancer deaths? 450 British people a day die of cancer. Everyone from babies to pensioners. Where are the national efforts to save us? Apart from being diverted onto covid work? It really does feel like cancer is the forgotten and even accepted c. On days like today it’s hard not to think about how many people agree with the **** Sumption that cancer patients lives are “less valuable”. With the constant talk of locking up the vulnerable and shrugging off covid deaths in people with “underlying health conditions” it can be hard not to take this hatred towards people like me personally. Because that’s what it is – it is hatred and a feeling that our lives aren’t worth wearing a face mask for. A feeling that we’re going to die anyway so whatever. It’s a constant feeling of being dragged down.

So yes I plan to burn across the sky for as long as I can. I won’t just lay me down and die. But I could definitely do with some help to stay airborne. At the moment it feels like too many people are grabbing my broken wings and dragging me back to earth.

Before anyone replies saying not all NHS staff etc, please just don’t. I know it isn’t all NHS staff and that the NHS is under pressure. But I’m angry (to put it mildly) that cancer patients are the seemingly acceptable collateral damage of this outbreak.

As always thanks for reading. Please stay safe, learn some cancer signs to watch out for, wash your hands, make space and if you can – wear a mask.

A letter to defend the humble face coverings aka masks

Dear world,

I wear a face mask due to COVID19. I wear it when I have to enter buildings and when I feel crowded in open spaces. I’m usually the only one.

I’m 36, reasonably self conscious about my appearance and I suffer from severe claustrophobia, especially when it comes to face coverings. I also have temporarily treatable but unquestionably fatal secondary breast cancer. My treatment for that batters my immune system. Without radical changes to research, clinical trials and political priorities I’ll be dead before I’m 40.

I have a range of facial masks. Many of them are definitely what I’d call precious and cute. The gems in my collection have hedgehogs on and were from Brockworth Hedgehog Rescue. Hedgehogs are beautiful creatures struggling to survive so I like any way that I can help them. I also have boring and plain masks that do nothing for my appearance, apart from emphasising my chubby cheeks and neck. Oh well even terminal cancer doesn’t solve image issues, instead it makes them worse – typical 🙄. I even have some disposable surgical masks for when I visit medical centres. After all its where I feel most at risk so want my highest grade masks 😷

Non medical masks (the types the likes of us are asked to wear) provide minimal protection to their wearer. They don’t harm the wearer. Take it from me you can still whistle, shout, scream, talk and cry. I hear you can puke into them easily enough, but that doing so has gross side effects with the puke going everywhere! But they are there primarily to protect others. They reduce the risk of users being asymptomatic carriers infecting other people against their knowledge or will.

So if homemade face coverings don’t protect me that much, why do I wear them? It’s to protect other people. I’m shielding at home so there is limited risk of me being infected, but I could be. I visit medical centres for cancer care. I could become an accidental killer. It’s literally that simple.

I’ll admit I love some of my face coverings and my husband has a Star Wars mask he loves! They give us another way to express our personalities, so why wouldn’t we wear them?

Although I’m Buddhist there is a Jewish phrase I love:

“Whoever destroys a soul, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world”.

What can I say other than I love the idea of saving a world by doing something as easy as wearing a mask. Disaster movies always make it look so much more difficult! If nothing else I have to hope that I inspire others and give them confidence to wear masks. Who knows, maybe just maybe they could be asymptomatic carriers and by wearing a humble mask are prevented from infecting other people like me. I would, after all, like to live long enough to die of breast cancer.

Why wouldn’t you wear a mask (unless you are physically unable to do so?) Do you really want to destroy a life and the entire world?

A photo of me wearing a Panda mask.