Assisted Dying and me

I haven’t blogged for a while. There’s been a few things going on. You know minor, insignificant things like being on a clinical trial for my secondary breast cancer. Waiting to watch the new James Bond. Visiting animal sanctuaries. Not to mention the whole global pandemic thing. It’s been an exciting time!

So shocker I’m still alive and kicking 4 years and 2 months post my diagnosis with stage 4 breast cancer. I’m still dying in my 30s though so don’t party too hard. Unless you don’t like me. In which case party away people!

I’m working extremely hard to live and live well for as long as possible. I love the rollercoaster that is my life. I really don’t want it to end. So you might ask why I’m so supportive of assisted dying and the UK group Dignity in Dying. After all they want to bring in assisted dying for the terminally ill. How could someone desperate to live support that. In my case easily. In fact my question would be why anyone wouldn’t support that. This blog aims to respond to some objections people have raised to me either directly or via social media.

Wouldn’t assisted dying lead to the mass slaughter of the disabled?

No it wouldn’t. The change supported by Dignity in Dying just deals with terminally ill people with a few months to live. If you aren’t dying, then you wouldn’t be able to use the initiative. End of. People of sound mind would have to choose to die in advance, in some cases a few days before they would naturally. There are built in safeguards. Those safeguards have worked in multiple countries. Why not here in the UK? Countries that have legalised assisted dying haven’t seen abuse of the process. I have multiple disabilities not even counting my cancer. Protecting disabled rights is something I care about. If this measure threatened disabled people I’d oppose it.

Suicide is a sin. God disapproves.

Firstly assisted dying isn’t suicide. When I run out of cancer treatment options I will die. I could die slowly and “naturally”. Or I could die the way I’ve lived – on my own terms.

Secondly I don’t believe in any God so why should other people’s beliefs condemn me to a slow and painful death? If you believe in God I’m happy for you. Just don’t get assisted dying if you feel that way.

Thirdly has anyone asked God for an opinion on assisted dying lately? How do you know God disapproves? Maybe just maybe God inspired the creation of the assisted dying drugs to save people from suffering. Maybe God believes in free will and compassion. After all assisted dying for the terminally ill that want it is a blessing and a kindness. I was raised in the Christian faith. I remember how much kindness was part of the faith. So be kind.

You’re being melodramatic and a coward. Dying isn’t that horrible. You’re just suicidal

This was the perspective of someone on social media. My response was to ask them how they knew that. Had they died of cancer recently? They blocked me!

Palliative care is awesome. But it isn’t perfect. Same for hospice care. Have you ever been in a hospital bed screaming silently in agony because your voice gave out hours before from screaming? Only to be told they can’t give you more pain meds yet? I have. I have a disability in my foot. It causes me constant pain. I haven’t had a pain free day in over 10 years. But I still get out of bed every morning, have multiple hobbies and work full time as well as dealing with cancer. I’m no coward. But I also can’t believe my pain will be controlled when I die. After all it never has in normal life, despite many Dr’s best efforts. I’ve felt the pain of cancer eating my ribs. Knowing I’ll feel that again in my dying days gives me regular nightmares.

As part of my cancer treatment I’ve had radiation pumped into my body, voluntarily taken chemo pills which had big red biohazard warnings on the label. I’ve gone through the menopause. I’ve gone through morphine withdrawal by myself. I am no coward. I do all of that to live and live well for as long as possible. Don’t you dare call people like me suicidal. We are literally the complete opposite.

Plus it’s always worth noting that countries who pass assisted dying laws often simultaneously boost funding for palliative and hospice care. So win win that benefits everyone.

But assisted dying shortens lives and deprives families of time with the dying person

Assisted dying shortens death. I have incurable secondary breast cancer. I’m 37. I’m going to die of cancer unless covid etc catches me first. But my death in my 30s is a certainty.

Plus I really object to the whole “what about the family” argument.

Firstly when I die my death will and should be all about me. If you can’t be the primary person of importance at your own death, when can you? I really don’t care about what my family thinks. I’m dying in my 30s so my chorus and verse is “me, me, me”.

Secondly have you ever been around a dying relative? I have. My mother and 3 grandparents. It sucked big time. My mother died in 2000. I’m still traumatised by how she died and that my last memory of her is mum lying on a hospital bed with tubes everywhere and unable to talk. I struggle to remember my grandparents as healthy and active. When I picture them, I picture them dying.

My husband will hopefully live 60 years after I die. Why should his last memory be of me lying on a bed dying? Why should he have to remember me in pain or with bed sores and bowel issues? Why should he have to dread missing my last breath if he dozes off? He shouldn’t have to go through that. Anyone who supports that system is incomprehensible to me. I want him to remember me smiling, not dying.

It’s just wrong. Life is precious

Life is precious I agree. But I believe in quality of life. Everything that makes me most happy involves me being up and out of bed. It involves me having energy and strength. When I lose my strength and mobility I will lose nearly everything that makes me who I am today. I won’t get years to adapt and find new interests. Once I run out of treatments I’m on a one way journey to death. But I want a smooth and peaceful journey. I want to live, but I want more than existing. It’s hard enough dying at my age without the thought of dying as a shadow of myself.

But it will be cruel to the medical professionals treating you if they have to prescribe lethal meds

Under our current laws I can write an advanced care plan for when I’m unable to advocate for myself. As part of that I can proactively refuse treatment that would keep me breathing for longer. I can order the removal of nutrition to hasten my death. I can pick a whole range of ways medical professionals can kill me faster by not treating me. Many British people choose these heartbreaking and undignified deaths to end their suffering. What I can’t do though is ask them to prescribe a drug to stop the suffering. I can’t ask them to end the pain. Doctors are first meant to do no harm. What’s more harmful to me? Declining the thyroid meds I need to live and dying in a particularly nasty way or taking a dose of meds at a time of my choosing and falling asleep forever in the arms of my husband?

What I don’t understand is that for pets there literally is no choice in the matter. If you leave a dog to die “naturally” of cancer you’d probably be prosecuted. If you put the dog down and let it die being cuddled by it’s beloved human you’re a compassionate hero. Why is it the opposite for humans? Am I really worth less care and consideration than a dog?

If I’ve persuaded you about why I support Dignity in Dying, please sign their vital petition and say yes to dignity and compassion – https://petition.parliament.uk/petitions/604383

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 Halloween horror story

It’s Halloween on Saturday. The day when ghosts and ghouls come out to play alongside killers and demons. So here’s the story of a demonic serial killer to curl your toes.

Our story starts in a beautiful, rich and prosperous country. A country with a universal health service which is so beloved that the people celebrate it across the land. A country where all are blessed and mostly at peace.

Why are they only mostly at peace? It’s because there is a serial killer out there. That killer has clearly made a demonic pact requiring lots of blood as it kills 450 victims a day. It kills them slowly and painfully, taunting the victims friends and family who have to stand and watch the killing take place. Obviously in a socially distanced way. After all apparently even serial killers stop their work during pandemics 🙄

As the screams of the victims ring out across the beautiful and mostly peaceful country, their cries for justice are sometimes heard, but all too often ignored. After all as the slasher movie franchise Scream makes clear, there are rules to surviving a serial killer. Be good, happy, healthy, fit, young, genetically blessed, flawless and know your body. Then you’ll survive. Plus don’t listen to the screams of others who aren’t so lucky. After all they clearly didn’t follow the rules – the charity posters made it perfectly clear that only normal non-deities are killed by this dreadful serial killer. Of course those charities are literally covered in the blood of victims they’ve refused to help, but let’s focus on all their positive acts. I mean let’s face it, this serial killer will take one look at pink crosswords and die of frustration looking for the word flamingo 🙄

Plus these victims are annoying so deserve what they get. Don’t they know how triggering and stressful their dying is for everyone else? Even thinking about it can cause deadly serious nightmares! Just die quietly already!

So watch your boring horror movies this Halloween. Those serial killers have nothing on this deadly villain. They kill like 10 people in a 2 hour movie and the villain of our story just says to move over as they ain’t seen nothing yet. You know the best and worst thing about this serial killer taking out 450 people on Halloween? You don’t have to wait too long for a sequel. Part 2 is on 1 November with another 450 victims! But don’t worry – they weren’t positive thinkers so you’ll be safe! Just be positive and perfect! Simples!

Author’s note

One of my favourite quotes is from Scream 3 where the lead is asked what her favourite scary movie is. Her answer is the same as mine – “my life”. Because when your serial killer is literally living inside of you, life is definitely a scary horror movie.

Why won’t you hear us?

I’m a member of a club that nobody wants to join. I have terminal cancer aged 36. Some people prefer calling it incurable cancer, but that glosses over the truth. I am terminally ill. I’ve not reached my final days, but this cancer will kill me, decades before I should be departing life. Unless of course I finally get hit by that sodding bus people keep warning me about.

Even more painful than actually dying in my 30s, is knowing that a hell of a lot of people don’t give a flying fuck about me dying. They just don’t care. They don’t care about a British citizen dying of cancer every 3.2 minutes. 450 of us every single day. They just don’t think about those of us who are dying for a cure. They often feel sorry for us, but apathy stops them acting on that twinge of sympathy.

Many of us aren’t old as we die of cancer. We are being slaughtered in our prime while most of the world walk on by. Even some of the charities meant to fight for cancer patients turn their backs on our tears. Yet I’m called bitter and twisted for wanting people to care. I know some do, but they are in the minority. The simple cold hard truth is that too many people are willing to close their eyes.

Just look at what happened during COVID19 and lockdown/shielding. Cancer patients, especially those of us on the terminal list were thrown on the bonfire. Our lives were deemed acceptable collateral damage. My oncologist told me that if I got COVID19 I’d be turned away from the ICU. After all that bed could be used for a 95 year old with their life ahead of them. Thousands of patients had their cancer treatments stopped, changed or delayed. Clinical trials were stopped. Research was stopped as scientists gleefully posted on social media how they were abandoning cancer research to work on COVID19. Charities celebrated how they were able to rapidly start supporting work against COVID19, as they casually mentioned about stopping cancer research.

We were left to die with a frailty scale that said because we were terminally ill we should be at the back of the treatment queue. Until you’ve been told in black and white that you aren’t worthy enough to live, that you can be denied treatment, you can’t understand how that felt. The NHS and policy makers deliberately ignored the fact that with access to drugs and treatments, many terminal patients can live for years. They just put people like me in the “dying so what’s the point” pile. Fuck them – I can and regularly do walk 5 miles a day, around my full time job. I’m nowhere near dead yet.

My friends have been dying, at even faster levels than normal. The wonderful Amy who died after her last chance trial was cancelled in lockdown, leaving her lovely mum Fiona heartbroken. Sean who won the hearts of millions doing a BBC News interview died this week leaving behind a wife and baby. So many people and so many heartbreaking stories. COVID19 killed 189 in the last 24 hours. Cancer killed 450. To fight COVID19 our country is doing lockdowns, masks, mass testing and throwing millions into research. And that’s just this week. To fight cancer this week, some people will wear pink tomorrow and eat cake. As I said it’s hard to escape the conclusion that people just don’t really care.

When people like me try to discuss our reality, policy makers talk about spending millions on awareness and prevention. Awesome news for the next generation, but why should my friends and I be the awkward elephant in the room? Why aren’t we prioritising those of us who are literally dying for a cure? What other field of medicine puts saving lives at the bottom of the priority queue? Imagine if COVID19 patients couldn’t get treated until we had a vaccine. If they were told to be positive and kind as they choked for breath. Because that’s what happens to stage 4 patients like me. When we discuss our reality we know that inevitably some primary patients will tell us we are scaring them, that our reality is stressful so could we shut up or at least use trigger warnings on our posts. Well I find celebrating survival of primary patients stressful as it reminds me of what I’ll never have. So could their bell ringing pink fun runs be hidden behind a trigger warning?!

I know there are great and supportive people out there, but they are the minority. Most people don’t hate terminal cancer patients, they just don’t think about us. And that hurts. That’s what breaks my heart. Well that and the look my husband gets when he starts thinking about what’s happening to me. The look he only gets when he thinks I’m not looking. That doesn’t just break my heart. It shatters it.

Would someone please shoot the grim reaper?

Warning you may find this blog upsetting.

I was diagnosed with secondary breast cancer 35 months ago today. I was told I’d be dead in six months maximum. I’m still slowly dying, but I’m nowhere near dead yet. But I will be one of these days. I’m 36.

My now ex oncologist predicted in March I’d be 6 feet under by November. 23 days to go. I would spend tomorrow planning for my imminent death, but I’m too busy as I have 8 hours of work to do. Plus a gym session. Oh and setting up a new scanner, cleaning the bathroom and doing the laundry. Yep I’m definitely going to die by November.

I’m thrilled to be alive and living my life to the full, but readers can I let you in on a big secret? I’m tired. So so frigging tired. It’s hard being chased by the grim reaper. It’s especially hard to be chased by the grim reaper when countless medical professionals act like you’re a cast member of the Walking Dead. Because that’s what life with stage 4 breast cancer is for me, it’s having to constantly justify your right to life and to medical treatment. It sucks.

It isn’t all medical professionals. My team at the Royal Marsden has reduced me to tears 3 times so far in the 2 months I’ve been working with them. They had me in floods because they treated me like a human with a life outside of being a cancer patient. Instead of talking about progression, fear, pain and death, they talked about my future. They were honest about the fact that secondary breast cancer kills 100% of victims, but they were kind and positive about me being physically fit with treatment options.

But many other medical professionals are working on the horrifically outdated and incomplete pathetic excuse for data collection on British secondary breast cancer patients. FYI not all trusts even know how many secondary breast cancer patients they have! They are working on the basis of what they think they know about stage 4 cancer. Which it turns out isn’t much! To give just one example, in March just before lockdown I had a bad day. I had a stomach bug and was violently sick. In the process I pulled a stomach muscle badly. Out came the on call GP. Amongst other things she:

• Addressed all questions to my husband.
• Refused to call me my name and referred to me as patient.
• Asked my husband if we had respite care lined up as he looked tired.
• Stated it was clearly progression to my stomach.
• When I protested I’d been in work the day before, she patted me on the leg and said I was very brave. She then proceeded to ask my husband how long I’d been hallucinating.
• Finally she asked me which hospice I wanted to go to. I thought she said hospital, but she responded with “no a hospice dear. It’s where people like you can get end of life care which is what you need”. 7 months later and I still remember her exact words. I told her to f*** off. She threatened to have me sedated at which point my husband ordered her to leave. It was a great visit!

This nurse was a radical example of the way some healthcare professionals act, but she is in the majority of those I’ve had the privilege to meet. I still remember in the weeks after my diagnosis about how many medical staff called my husband carer and me dear or sweetie. We prefer our names! I’m still a very strong willed, physically and mentally capable individual with a mind of my own.

What terrifies me about these encounters is what happens when I’m not able to advocate for myself? What if I’m knocked out after a crash or get electrocuted in an accident? Will I be treated or will they refuse because of my secondary breast cancer? In my last face to face appointment pre covid, my now ex oncologist laid out some ice cold truths. She explained if I got covid I wouldn’t get an ICU bed or ventilator. She explained they were needed for patients who “have more than a few months to fight for”. If I’m in an accident she detailed how restarting my heart or doing CPR probably won’t happen for the same reason. I’ve made an advanced directive but even that isn’t enough to guarantee access to life extending treatments – the story of my secondary life. They actually made me put a dot on a line to say how much effort they should make to save my life from the grim reaper.

I was made to feel like I should be grateful for the reassurance I’d be on good pain drugs as I die. I follow Dignity in Dying. I’ve seen footage of how some people with my cancer die. Some go peacefully and pain free and some are just grateful they’ll no longer be in any pain as they can’t physically scream anymore after tearing their vocal chords to bits. Both options bloody sicken me.

This country and our major cancer charities won’t invest in research or treatments that would let people like me live. Nor will they let us die in peace in a place we love. I want to spend a perfect day with my husband in my beloved Norfolk. At the end of the day I want to be held in his arms as I go to sleep after taking some prescribed pills. I want to drift off at peace surrounded by nature and the sound of the sea.

But our inhumane laws and our completely broken system of cancer research and drug access means I won’t be helped to live, nor will I be given the option to peacefully die. So to put it mildly I’m furious. Hence I want the grim reaper shot before it can reap me. It’s Halloween in a few weeks – the last day of breast cancer awareness month as it happens. Surely finding the grim reaper should be easy?

I KNOW that stage 4 cancer needs more and it needs more urgently. That’s why I’m a member of METUP UK who are fighting for change to stop the deaths. We don’t think 31 British women a day should die of breast cancer. We demand change. Join us? There’s only death I want to see – the grim reaper. Maybe then my friends will stop dying of cancer – many aged 30-50.

https://linktr.ee/METUPUK

No I’m not pregnant!

I appreciate that this might sound like a random title for a blog, but hopefully all will become clear.

I’m 36 and I have secondary breast cancer. I don’t have children. Amazingly the second statement about children seems to upset more people than the statement about me dying but that’s another blog entirely about the endemic sexism in 21st century Britain. All I’ll say here is that it’s perfectly possible for a woman to have a wonderful and fulfilling life without babies.

Let me tell you a secret. I never wanted children. Ever. But when I was diagnosed with secondary breast cancer aged 33, my womb suddenly became one of my defining features. Which is slightly ironic as due to monthly Zoladex injections, my womb is basically useless. My ovaries have been shut down as part of my chemically induced menopause and as a result my womb is more barren and dry than the Sahara. I have an even bigger secret. When I was diagnosed I thought that at least one positive would be that people would stop asking me if I was pregnant. They’d stop commenting on how my life wouldn’t be complete until I pushed a human out of a tiny hole between my legs. I was SO wrong!

“Is there any possibility of you being pregnant?” is asked at nearly every medical appointment. At first I thought they were worried about me, but then I realised they were worried about damaging a theoretical collection of cells, rather than the health of the woman in front of them. I get asked before every scan, every dose of radiotherapy, at the start of new treatments and whenever else doctors decide to ask. And frequently I then have to prove it with a pregnancy test, just because I’m of a certain age. FFS it really annoys me.

At first I responded with the truth – it’s none of their business, but in order to protect a theoretical collection of cells it apparently is their business and they can deny me treatment or insist on a pregnancy test. Apparently having a sense of privacy isn’t allowed.

Next I tried brutal honesty. I have secondary breast cancer in my hips and pelvis. Weight makes those bone mets hurt more. What sort of an idiot would want a baby when their body is already falling apart? After all the last thing my husband needs after I die is someone who pukes and goes toilet frequently. He’ll have enough of that to deal with in my final days from me. Plus my father in law has been a complete twat to me and I hate his guts. Knowing my luck the kid would take after his grandfather and that would not be fair on my hubby. Plus there’s the whole not wanting kids thing. But the honesty thing never really works out and usually leaves doctors saying how sad it is to see me denying my maternal instincts and that I’m just saying these things to protect myself from the pain of enforced sterility. Sigh – they still ask for a pregnancy test though or at least a confirmation that I’m not pregnant. I just can’t win, especially when they remind me Zoladex isn’t effective birth control. I know that!

I recently tried to get on a trial which involved a lot of tests and scans over two days. Before every test I was asked to confirm my name, date of birth, address and pregnancy status. Seriously I wanted a sign to carry around saying no I haven’t gotten pregnant in the last two hours! Although getting pregnant would have involved more fun than being stabbed with needles, poked and flooded with radiation. It would have been a much more fun type of poking. FYI never say that to a Dr – I found out the hard way this week that they rarely laugh at such jokes.

Other responses that cross my mind when asked the pregnancy question have included:

• Actually I’m pregnant with triplets can’t you tell?
• No I just had a big lunch!
• Why? Are you looking for pregnancy advice?
• I knew this top made me look fat!

But these answers are met with frowns and shaking heads. Nobody ever laughs ☹

But I have to laugh. Because if I don’t I’ll cry. Most women my age are having babies while I think about funeral plans. Hell one woman I went to school with is about to be a grandmother at 36. But I’m constantly reminded that thanks to cancer I’m broken. No babies here. Which is probably a good thing, but do they have to remind me of that quite so often?

Finally, the question about whether I’m pregnant reminds me of an experience I had with a hospital volunteer when I was first diagnosed. She came to see me armed with leaflets. She was giving me leaflets about surviving cancer and protecting fertility. She gave me that leaflet with a smile as she said that would clearly be of importance to my husband and I if we wanted more children (more? was my first response). I then pointed out that I’m stage 4. She took the leaflets back off me and apologised saying she didn’t have any leaflets left on coping with being childless. But as she rummaged through her pile, she brightened up saying “here’s the leaflet on end of life care”. That was 34 months ago and I still remember it like it was yesterday. The feeling of being relegated from living woman with the potential to create life to a dying woman in need of care was agonising. And every time some radiographer says “are you pregnant”, I feel that all over again.

Sod saving tatas – how about saving lives?

I’m a little angry right now. I’ve just seen my first #SaveTheTatas hashtag of the year.

Breasts are awesome – apparently anyway. Personally I was never that keen on mine. Growing up people made comments about how small they were and upset me throughout my childhood. As my breasts grew so did my feelings of hatred towards my own body. Now I’m grown up my breasts are literally killing me. I have currently treatable but inevitably fatal metastatic/secondary/stage 4 breast cancer. As a result I’m a little bit biased against breasts which might be influencing my views on #SaveTheTatas.

Don’t even get me started on tatas. They are breasts. If you really want to then call them boobs or tits. But since I was dragged kicking and screaming into the hell of metastatic breast cancer I’ve heard breasts called:

• Tatas
• Melons
• Lemons
• Eggs
• Pineapples
• Titties
• Boomerangs
• Bouncing Betties
• Cans
• Jugs
• Cannons
• Bazookas
• Puppies
• Booby woobies
• And many more equally dumb names 🙄

Seriously I don’t have booby wooby cancer. I’m not dying because of lemons or melons. If nothing else these stupid names have limited my diet by discouraging me from several fruits I used to love.

But most of all when we talk about breast cancer we need to stop trivializing it. News flash – breast cancer isn’t bloody fun. It’s the disease that kills thousands every day. 11500 women die of it every year in the UK and 80 men. That’s a death every 45 minutes – in just one country. I’m 36 and I have no clue if I’ll be alive on my 37th birthday. The odds are against it as I’m almost at 3 years of being #BusyLivingWithMets. We don’t urge lung cancer sufferers to wear bright tshirts and have a stupid name for lungs. We don’t tell bowel cancer patients to wear brown tshirts and talk about having poo poo cancer. So why is breast cancer treated like a f***ing joke and pathetic names used to avoid the word breasts. They aren’t Voldemort FFS – we can name them!

What gets me most of all is that I don’t give a shit about saving my breasts/tatas. I care about saving my life. If I was told today that losing my breasts would save my life, I’d cut them off myself with a wooden spoon. Sod saving breasts. Women are more than our breasts. Lives need to be saved. If we stop the deaths then we can focus on saving breasts. 31 British women a day die of breast cancer. 116 US women. Those of us who are dying for a cure matter. If people need over sexualized funny pictures to persuade them to help save our lives, then I’m sorry but they are not good people. In fact they suck!

So this breast cancer awareness month, how about we put the fruit back in the food aisle and focus on saving lives not breasts. My breasts won’t hug my husband when I’m dead. My breasts won’t cheer on my beloved football team or walk over the Norfolk marshes. Only I can do that. Oh and I could do all of those things perfectly well without breasts.

Rant over 😊

PS join METUP UK on Instagram, Twitter and Facebook to see the deadly reality of the pink ribbon cancer. Or visit our website https://metupuk.org.uk

Just fuck off already cancer. Seriously just fuck off

I write this blog with tears in my eyes and pain in my heart. Chadwick Boseman, best known for his iconic role as the Black Panther, has died of colon cancer. He was 43. A man who inspired children and adults across the world has been killed by the most evil serial killer in history and it breaks my heart. I don’t just mourn his death, I also mourn the thousands across the world that have been killed silently by cancer in the last 24 hours. They might not have been famous, but they deserved so much more life. As do all of us with stage 4.

People talk about the need to be positive with cancer. The need to be dignified and die peacefully. They can sod off. I’m 36 and have secondary breast cancer. I’m going to die in my 30s. What the fuck do I have to be positive about? I’m dying because of a dodgy PTEN gene, combined with the inevitable consequences of a world that just doesn’t care about stage 4. My death will be seen as inevitable and sad, but in the grand scheme of things, just another random tragedy.

Just last night on Twitter, several people were discussing how women need to take responsibility for their health issues. Apparently we need to watch our weight, eat healthily, exercise and rarely drink. I can only respond with one word. Bullshit!

I was in the gym 4 days before I was diagnosed de novo at stage 4 aged 33. I ate healthily, rarely drank and never smoked. My BMI was 17.2. The person I was training with was my amazing personal trainer Vicky who is incredible. She has stage 4 lung cancer and is as fit as a fiddle. She always has been. But still people ask her if she smoked. They ask me if I ate the wrong thing, or if I regret getting drunk at university. They seek to blame us so that they can feel better and safer, believing that cancer will never strike them. When Vicky and I protest our innocence of these heinous crimes we are accused of, we get sympathy and compassion. We are the deserving victims, the ones who have “earned” sympathy and compassion for our plights.

But so what if I had given in to peer pressure and smoked a cigarette? So what if I liked takeaway food and a Malibu and Coke? So what if I had a lie in instead of exercising? The last time I checked those were not capital crimes carrying the death penalty. They are not prohibited in any religious text I’ve ever read. To “sin” is human, but to get stage 4 cancer is apparently a sign of an unforgivable crime. Imagine if instead of being judgemental twats these people campaigned for research into stage 4 cancers. If they said that people with stage 4 deserve to live. Because we do.

I love and hate the hashtag #BusyLivingWithMets with equally strong emotions. I love it because it inspires me and shows what stage 4 people are capable of. I also hate it because it feels like we are having to justify our existence. At the worst times of our lives we have to be superhuman and achieve wonders to prove that investing in drugs and drug access for us is worthwhile. We can’t just exist, we have to be paragons to make people care and empathise with us. And that sucks. Now I know some people will be reading this saying “But I care”. That’s great – what are you doing about it? Don’t shame me or other stage 4 patients for speaking our truths or being humans with all of our inherent flaws and weaknesses. Fight for us. Lobby the governments and charities to do more for stage 4.

But if you do nothing else today mourn for the loss of an inspiring role model. A man who gave children and adults dreams of a world where they would not be defined by the colour of their skin. A man who promoted multiple good causes and gave smiles and happiness to millions. A man who was secretly the ultimate example of being #BusyLivingWithMets. A man who died far too young.

#WakandaForever

Where is the exit?

Imagine being in a large room with an axe swinging over your head getting lower and lower with every swing. But before you panic, there are several open doors of hope that you can run through and escape! It’s a fun and adrenaline filled game!

You run towards the first door to be stopped by a voice telling you to drink some poison before you can go through the door. You do so, only to see the door slam shut in your face. A voice tells you that the door isn’t going to open as consuming the poison made you ineligible to go through the door. The axe swings a little lower but you aren’t worried yet, after all the system is there to help everyone. There must be a reason why everyone talks about their life changing encounters with the axe and wear perky pink ribbons to raise money to stop people getting in the axe room.

You run to the next door, trying to escape the axe as the door slams shut in front of you. The voice tells you that the computer has randomly assigned you to the group that has to stay in their axe rooms. As it speaks the axe swings lower.

You run towards the third door starting to feel a little panicked by now. Before you can get near the door you have to walk through a fire which is designed to burn away the axe above your head. Yippee you’re saved! Only the fire doesn’t work and the axe swings lower as the door of hope slams shut in front of you. As the fire didn’t work you can’t go through the door.

You run towards door number 4 feeling very scared now. You are almost through the door when you are yanked backwards and the door slams shut in front of you. You ask why and the voice says that there are ill people out there on the other side of the door. You can’t go through, but don’t worry – it’s for your own good. As the voice speaks you feel the axe in your hair. Running is getting harder as random obstacles keep tripping you up.

You see a fifth door emerging, but it turns out that you have to pay to get through the door. For people without money there are sympathy cards in front of the door. At this point you start to feel exhausted but you keep going, drinking every potion and swallowing every pill you are offered. People keep shouting encouragement saying that if you are more positive and fight that you’ll win the game and escape through a door.

As you run towards the 6th door it too slams shut. You scream in frustration and terror. The voice tells you off for not asking nicely to be let through the door. By suggesting that the voice was being unfair in blocking your escape, you’ve been mean and hurt the voices feelings. As a result the door is permanently blocked off. At this point you are having to duck to avoid the axe. As you duck again the voice reassures you that in 30 years nobody will have to duck to escape the axe. All you can think is – what about those of us ducking the axe now? Can’t we be a bit more ambitious in our targets?!

At door 7, the voice regretfully says that because you tried door 2 first you are no longer eligible to go through door 7.

Suddenly door 8 appears and you run towards it with all of your strength only to be told that the door is now closed due to cost cutting. Resources are being focused on stopping people entering the axe room altogether. Isn’t that wonderful news?!?!? Don’t worry 7 pence in the pound is now going on people in the axe room. The voice pauses at this point so you can say how generous the voice is being.

Finally you approach door 9 and the voice sternly reminds you of how lucky you are as you get to go through the door. You celebrate escaping the axe, only to look round and see what is in the room. Doctors urging you to sign do not resuscitate forms. Nurses encouraging you to be positive and peaceful as you are laid down on a hospice bed. People telling you that drinking magic tea, eating grass and staying positive would have allowed you to escape the axe earlier. You look in the mirror and realise the flames and poisons have changed you physically beyond recognition. The tubes suddenly start to stick out of your body as people reassure you they’ll wear pink in your memory. You see there is another door out of this room and everyone applauds you for being brave and strong as you go through it. There’s one thing in the new room. A coffin with your name on.

Does this game sound fun, pink, positive and peaceful to you? Does it conjure up images of angels and pixie dust? What do you mean by no? The voice was so supportive during the game! Why aren’t you grateful? Clearly you hate people who avoided entering the axe room. As for the escapees – you clearly despise them. But to improve things and shut you up we’ll run a survey to gather opinions so we can do a low key press release before we return to sprinkling pink pixie dust.

Seriously though, this “game” is real life for the vast majority of metastatic/secondary/stage 4 breast cancer patients. Doors get slammed in our faces at every turn. As a result energy we could be using on making memories and spending time with our families is spent fighting our cruel and broken system. The major charities are failing us. It’s only small charities and groups like Make 2nds Count and MET UP UK that are throwing everything into trying to stop the deaths. Because there are deaths. 31 a day die of breast cancer in the UK alone. Many of them young. There are options and doors of hope for them, but the NHS, Nice and others conspire to put as many obstacles in the way as possible. We are deemed poor value for money to save. We are expendable and acceptable collateral damage.

Cancer isn’t a game. It is a massive killer. Prevention and awareness is all very well and good but it won’t save everyone. People will always slip through the cracks. Surely they and people like me deserve at least a few doors of hope being left open? Give us a chance and watch us shine. Or continue to write us off and watch us die. 450 British people died of cancer today. They will have been of all races, ages, social classes and backgrounds. They will have all been different and wonderful individuals. They only had two things in common. Firstly they were all failed by a broken system and people deliberately denying them hope. Secondly they all deserved better.

As always thanks for reading x

Unshielded but dreading a return to my cage

Today was officially the first day of life post shielding. Although I’m only 36, as I’m terminally ill with secondary breast cancer I was one of the over 2 million shielding at home. Don’t I look like I’m dying! Sadly I am, despite appearances to the contrary.

Me on a swing in early July 2020

I have to raise my hand and admit a secret now. I stopped shielding on 6 July so I could spend a week in my favourite Norfolk pub and go on lots of amazing walks. At that point I had been caged in my home apart from medical appointments for 111 days. Don’t get me wrong, I’m bloody glad my cancer treatment continued as so many were left without treatments, but when literally the only people you see outside your home want to stick huge needles in your arms and stomach, it is HARD to enjoy those tiny snapshots of liberty. I shielded for 111 days and when I stopped my mental and emotional health were in tatters.

Don’t get me wrong, I’m still absolutely bloody terrified of getting corona virus. I want to live long enough to die of breast cancer please. I’ve said that a lot lately, but I mean it, even though my lifespan might only be measured in weeks (reminder I’m 36) depending on the results of my PET scan next week. Crossed fingers are much appreciated! Sadly due to our poor quality support for stage 4 patients like me, even good scan results are only delaying the inevitable. So despite my terror of COVID I need to live my life to the fullest for as long as I can. I owe myself and my beloved soulmate and husband Phil nothing less than memories to last him the lifetime I won’t be there for him in person. That’s why I broke shielding early.

I have an even bigger secret that might horrify or inspire other shielders. Thanks to some wonderfully creative and caring colleagues I was able to work from home for all of shielding. However, I returned to the office on 13 July and have been back in now for 3 weeks. I sit in an isolation room, maintain VERY strict social distancing, hand hygiene and face mask wearing. My marvellous colleagues have gone out of their way to protect me. My entire office is disinfected every night – my office is also less than 20 metres from the cafeteria, shop and toilets. It means I can do the job I love and feel safe with minimal interaction. Oh and my mental health is 100% present and accounted for. Well it was until I saw the news.

There are rumours emerging of an even bigger shielding programme coming this winter. Many shielders sound happy about this as they think it is too early to end shielding. I on the other hand had a panic attack on the spot. Just 3 reasons for my terror are listed below:

1. I don’t want to be forced back into a cage aka my house to see out what will probably be my last autumn and winter. Last time I felt stressed, depressed and cried every few hours. I’d done nothing wrong and yet I had less rights than a prisoner. Technically I wasn’t allowed a single hug or kiss from my hubby. To add insult to injury I kept being told it was for my own good.
2. I had to beg on my hands and knees to be allowed to return early to work this time. I don’t know if I’ll be that lucky next time and I love my my job as it helps me stay sane and stops me giving into demands from my GP and oncology unit to be a good quietly dying cancer patient who takes it easy. F*** that, I’ll rest when I’m dead.
3. Lockdown and shielding was catastrophic for stage 4 patients like me as we were unofficially designated acceptable collateral damage. At least 3 women I know were killed by the decision to halt trials and treatments in some areas. All under 60 with one aged 37. Even now patients like me are in a permanent state of fear. If my scan next week (which is 2 months late) is bad I’ll need a trial. Hardly any are recruiting due to the sickening decisions made by the Government, NHS and certain major cancer charities to divert vast resources from cancer to covid. That means my “options” are life changing and health devastating IV chemo or death. F*** cancer and f*** the NHS. Their bureaucrats released two lethal documents during lockdown:
   1. A document ranking cancer patients. If resources ran low then patients would be prioritised for treatment access. Even though I’m physically fit and can do everything apart from bend easily to do my shoes up, as someone predicted to die within the year I was bottom of the list for access in case of shortages.
   2. Secondly they released a so called clinical frailty scale to decide who amongst the population would benefit from ICU access and active life extending efforts if they got COVID19. The healthiest were given a score of 1 or 2. As some whose oncologist had arbitrarily given me 6 months at most to live, I automatically scored 9 which was the lowest score possible. In other words, despite me being able to do 10 miles in under 20 mins on the spin bike, I wasn’t deemed worthwhile or healthy enough to live. Resources would be wasted on little old me. But an obese 80 year old bed ridden man with a dodgy heart would be prioritised above me 🤦🏻‍♀️😪

Those documents shattered my faith in the NHS. If I got COVID19, my local health trust was releasing videos defining how I’d get a supportive and compassionate death and that I wouldn’t be abandoned. Oh thanks a f***ing bunch. Last time I checked patients weren’t allowed to be helped to die in this country, even if they ask for it. But even if they miraculously moved me into a hospital bed, denying me the right to die in Phil’s arms at home, all they would do is give me pain pills and kill me by deliberate neglect. Yeah that really made me want to go out and applaud NHS staff 🙄🖕

If shielding is reinstated and possibly enforced as per some suggestions it will kill me. It will reduce my fitness which is key to holding back cancer. It will remove my ability to make memories. It will remove my independence and freedom. It will kill more of my friends. I’ll have to watch the media focusing on elderly shielders and mostly ignoring those of us who are young and vibrant. I’ll have to listen to shielders with predicted normal life spans calling it acceptable to spend 18 months locked in if it allows them to live for 60 years. I’ll have to keep fearing my life extending cancer treatments being stopped at any point.

But I need to be fair – it will after all be for my own good. How wonderfully compassionate of them.