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.

#BusyLivingWithMets A-Z of 2019

2019 has been a long and emotional year. My medical team predicted I’d be dead by now, so this #BusyLivingWithMets blog post is to celebrate some of the wonderful things that have happened to me in 2019. It’s also to say fuck you cancer I’m not dead yet! I would say my cancer should try harder in 2020, but that seems rather a stupid thing for me to say!

But enough waffling! Here is my 2019 alphabet of life as I stay #BusyLivingWithMets and sticking my tongue out at my incurable but currently treatable secondary breast cancer. Enjoy!

The #BusyLivingWithMets alphabet

A is for AFCRD aka AFC Rushden and Diamonds. I love that club! The support I’ve had from people there has been incredible and sums up what a fan owned community club is all about. 💎

B is for blogging. I’ve loved blogging this year and have been very grateful for all of the support I’ve had. I even won blogger of the year at work! 🎉🏆

C is for campaigning as part of METUP UK. The ladies of METUP UK are fantastic and have been a never ending source of support, information and friendship in 2019. Check out the web page!

D is for Disney movies. I’ve seen several brilliant Disney movies this year, particularly Aladdin and Star Wars Episode 9.

E is for Episode 9. Seriously it was well worth waiting for! After my diagnosis when I was given 6 months at most I never expected to see that movie.

F is for fantastic friends and colleagues. I couldn’t have got through 2019 without them. That includes my wonderful friends and followers on social media who are always willing to help me, cheer me up and reassure me when I get scared over the waking nightmare that is life with secondary breast cancer.

G is for Gloucester History Festival. Thanks to this awesome festival I’ve met some of my idols this year including Kate Adie! That was a dream come true!

H is for handfeeding animals! This year I’ve been lucky enough to handfeed lots of animals including alpacas, lorikeets, deer, lemurs, owls, eagles, goats, hens, geese, meerkats, a komodo dragon, cats, dogs, giraffe and rhinos! As a bonus I still have all my fingers and thumbs!

I is for Invisible Women by the jaw droppingly brilliant Caroline Criado Perez. The book which details her research into how women are ignored by a lot of policy makers is a life changing read. Once you’ve read it, you will never see the world the same way again.

J is for jigsaws. When we go to Norfolk my husband and I take jigsaws with us and have great fun completing them. We even had a photo of us feeding a giant Galapagos Tortoise turned into a jigsaw!

K is for kindness. The kindness of friends and strangers this year has overwhelmed me. Kindness should rule the world!

L is for living. Against all odds I’m still alive and loving my life. I plan to stay that way!

M is for my medal. I got a very special medal this year which was incredible! I still can’t believe I have one! It’s my pride and joy.

N is for Norfolk. I love Norfolk! I’ve spent over 2 months there this year and loved every second, especially my beloved Stiffkey.

O is for Outlander. I fell head over heels for the show and the books this year. Outlander is phenomenal. If you haven’t seen it or read the books, do it now.

P is for Phil who is my wonderful and incomparable husband. He is my light in the darkness. I could write whole blogs on him and not even begin to cover how much I love him. He is my world.

Q is for the Queens of Six The Musical. I saw this show in June in London. It is amazing, feminist, funny and generally fantastic! I’ve booked tickets for the tour in Cheltenham and I can’t wait to see it again.

R is for Redwings Horse Sanctuaries. I love going to Redwings. There is always a horse or donkey after cuddles and fuss. If you haven’t visited one then go now! 🐎

S is for Stiffkey. Stiffkey = heaven on earth. Stiffkey = pure happiness. Simples 😍

T is for trekking! I’ve been lucky enough to go trekking with alpacas several times in my beloved Stiffkey in Norfolk. Walking with alpacas along the Norfolk Coastal Path is the most relaxing feeling in the world.

U is for useful. When I was first diagnosed with terminal cancer I felt terrified of being a useless burden. But in 2019 I’ve still felt useful and that is a special feeling. What’s even better is that with the help of my awesome counsellor at work, I’m starting to realise that I don’t have to be useful for people to care about me. My real friends and family will care about me regardless of how “useful” I am.

V is for Vicky Hutton my inspirational and wonderful personal trainer. She taught me to love exercise and without her I doubt I’d have been fit enough to make it through 2019 💪. She has advanced lung cancer and is defying expectations as she lives an incredibly active life doing long runs for fun.

W is for work. When I was first diagnosed with terminal cancer I was ordered by multiple doctors to quit work. 2 years later I’m still working full time and loving it!

X is for X. I got to vote in a general election this year. The result wasn’t what I wanted, but I’ll always celebrate getting to vote. There are millions of people worldwide who are still fighting and dying for the chance to put an X on a ballot paper.

Y is for yes. I always used to let my fears and worries rule me. Now I just don’t have time for regrets, so I say yes to as much as I possibly can!

Z is for zoos. I’ve visited lots of zoos and animal sanctuaries in 2019. I love animals. Visiting a well run zoo or safari park is one of my favourite activities. I’ve cuddled rabbits at Cotswold Farm Park and held snakes at West Midlands Safari Park. I’ve smiled at the Patagonia Mara of Amazona Zoo and held a baby alligator at Crocodiles of The World. I love zoos!

In conclusion

This blog is dedicated to the 11,000+ British people who were killed by breast cancer this year. Breast cancer is not pink or easy. It kills more Brits than gun violence, domestic violence and terrorism combined.

Thank you so much for reading this blog. Seriously thank you. This A-Z has been a snapshot of the highlights of the last year. It doesn’t cover everything, but hopefully it shows that I’m #BusyLivingWithMets and desperate to live so that I can keep making wonderful memories. The only way that can happen is with drug access. The problem is that as the ICR outlined during 2019, drug access is still rubbish in the UK. In other countries I’d still have options before chemo. In the UK I can’t even get on a clinical trial. That’s why METUP UK is demanding change. So that 35 year olds don’t have to try and cram a lifetime of living into months.

I hope that I’ll be able to do a blog like this at the end of 2020, but who knows what will happen before then. All I know is that I adore my life, but that I’m running out of time.

Thank you again for reading and Happy New Year.

A letter to the NHS

Hi NHS,

My name is Kit. I’m 35 years old and I have secondary breast cancer. I was diagnosed de novo at stage 4 nearly two years ago. Since then I’ve spent lots of time dealing with you. It hasn’t always been easy for either of us, so this is a letter telling you how I feel. I want to clear the air so that we can be friends. It feels a bit like writing to Father Christmas. I don’t know if you’ll ever read this, but I hope so. I also hope you don’t hate me afterwards as I really need you in my life right now. I know nobody likes really long letters so I’ve tried to focus on the key issues we need to discuss.

Firstly please know that I love, adore and respect the NHS. Criticising you makes me sad. But honestly you aren’t making things easy for me.

Access to drugs for stage 4 cancer patients needs urgent reform. I’m young, strong and healthy, but I might be starting chemo next month which will slowly but steadily destroy my body. There are alternatives out there, but your rules on treatment lines mean that I can’t access them. Over 11,000 British people will be killed by breast cancer this year. Most of us could live for years with better drug access and investment in newer radiotherapy technology. I’m working full time despite having terminal breast cancer. Your staff keep telling me to take it easy and not exercise or work, but I’m still young and have a lot to offer. How about meeting me halfway and offering access to new and innovative treatments being developed by skilled researchers across the world. At the moment I’m facing death knowing that you could extend my life. That makes it very hard to be friends with you.

If drug access is too much to ask for, can we discuss your long term strategy on cancer? Awareness and prevention are great things to work on, but your strategy doesn’t seem to cover people living with incurable cancer now. When I see ministers talking about you focusing on catching cancer early I feel a bit sad. It’s like you are leaving those of us who are at stage 4 to die in the corner. I know you wouldn’t want to do that. Would you? Besides even if you catch breast cancer early, up to 1 in 3 people will have their cancer come back anyway – often at stage 4 which is the stage that kills. How about focusing on stage 4 for a bit? There are literally thousands of us hoping for a minute or two of your attention. My oncology unit has over a dozen primary breast cancer nurses. We only have 1 part time secondary breast cancer nurse who is incredible. But she is on a temporary contract and I’m really scared of losing her. Stage 4 really does need more than part time and temporary help.

If drugs and staffing aren’t good conversation starters, can we have a chat sometime about my GP surgery? They have some great staff. They also have some mean ones who make me go home and cry. Yesterday I went to the surgery for my monthly injections of zoladex and denosumab. I have a weakened immune system due to cancer treatment. As such the surgery waiting room is a very dangerous place for me to hang out. Normally I ask the receptionist and they let me wait in a side room to reduce the risks of me catching something and possibly dying as a result. Last time I had a cold I spent 5 days attached to an IV in hospital. My immune system sucks! Yesterday though the receptionist told me I should sit in the corner and I’d be fine. I explained I wasn’t prepared to do that. The GP has told me never to do that. Her response was that she knew I’d be fine as I go to work. Yep sue me I’m dying, but I still have bills to pay. I had to point out that generally my colleagues don’t come into work with contagious diseases before she reluctantly agreed to find me somewhere to sit. At the time I was annoyed, but now I’m already stressing about what will happen next time I go to the surgery. Other receptionists have suggested I could cope without my thyroid drugs – one of your wonderful surgeons removed my thyroid 5 years ago so I really can’t cope without the drugs. There are more problems, but I don’t want to discuss those issues in public. I am literally getting sick with stress every time I have to deal with the surgery. So I’d really appreciate it if you could ask them to always be kind to sick and scared people like most of their colleagues. Thanks in advance for that.

Finally NHS I just wanted to ask if you had any thoughts on how money is spent at the oncology unit by your hospital managers. The oncology unit is largely paper based, a bathroom ceiling in the ward is falling down, the only entertainment comes from donated jigsaws and the booking line doesn’t even have an answering machine. Computers (the few that they have) are ancient. Chemo awareness briefings are done using a laptop running Windows XP. The chemo rooms are so crowded that patients can’t take anyone with them to appointments. The unit needs investment. That has to come from your budget or the charitable trust that raises funds for the unit. The charity does great work but seriously NHS you shouldn’t be relying on them to buy chairs for chemo. I wish that my oncologist had access to a tablet or laptop with all of my medical records on. At the minute most of the appointments are taken up with her checking handwritten notes! If it isn’t in the notes she has to go and find a computer in another room. It’s 2019 and my oncology unit is still heavily reliant on pen and paper. NHS it makes you look bad, although the sky ceilings the charity has recently been installing do make you look pretty as well.

I know this letter sounds mean. I don’t like criticising you. When you are great I boast about you. But the other day someone told me how lucky I am to be sick in the UK as we have the NHS. I really wanted to agree with them, I really did. However, despite some superb staff working in your hospitals and surgeries I couldn’t agree. That made me very sad. So NHS I wrote you this letter. I doubt you’ll ever read it. I know lots of people will disagree with me, but I just had to let you know how I feel. I love you too much to lie to you. So thank you for everything and please don’t hate me. Regardless of everything in this letter (and all the things I left out) I love you.

With the warmest regards,

Kit

Can’t I just have a day without cancer creeping in?

I have a killer inside of me. A killer called secondary breast cancer (aka stage 4 aka metastatic breast cancer).

Having stage 4 breast cancer is terrifying. Knowing that I’m very unlikely to reach my 40th birthday is gut wrenching. But what has shocked me the most is the impact it has on a daily basis. I’m going to die of cancer, but in the meantime I feel like I’m dying of a million little cuts across my heart and soul.

People ask me about how I am and how I’m coping, but how do I explain it to someone not facing their own mortality?

How do you explain that feeling of dread as you open Twitter? That moment of hope that nobody else you know has been killed by cancer today? The stab of agony when you realise that another follower is dead because of cancer? How can you explain that feeling of grief mixed with fear that you might be the next one to die? Most women my age are wondering who will be their next friend to get married or have a baby. I wonder who will be next of my friends to die.

Before I was diagnosed with secondary breast cancer, if a tv show or movie release was delayed I’d be annoyed. When I heard that the next series of Dr Who wouldn’t be released until 2020 my first thought was whether I’d be alive to see it. I still don’t know if I will be, although I really hope so. When I tell people that though they usually tell me to either stop being morbid or to prioritise as “it’s just a tv show”. It’s easy to say that when unless you are hit by that sodding bus cancer patients are always told about, you will get to see it.

Seriously if anyone you know is ever diagnosed with terminal cancer, don’t say that they could have been hit by a bus. I’ve been told that by so many people that I have a phobia of buses.

I realise that this blog makes me sound like a morbidly miserable woman. Maybe that’s a fair description! But the truth is that I still love my life. I’m constantly doing new things and making memories, but I can never forget the killer inside of me.

I went to a football/soccer game today and some of the fans were singing “I’m Rushden ’til I die”. At the time I was really enjoying the match, especially as my beloved Rushden and Diamonds had just scored. But when I heard that chant I cringed in my seat. All I could think was that I am nearly 2 years into a 2-3 year life expectancy. The killer inside me yet again crept up to remind me that I can’t escape from it. I can’t run away from this killer. It’s already moved in.

So yeah at the moment I’m not suffering much from the physical side effects of incurable breast cancer. I am however struggling a little with the psychological impact of having a permanent lodger in my body trying to kill me. I see a counsellor regularly and take antidepressants. I’m not ashamed of that. My reaction is completely normal. If anyone dying of breast cancer aged 35 says they aren’t slightly depressed they are either lying, high, insane or they have a really shite life. I love my life – of course I’m slightly upset about leaving it 40+ years ahead of schedule!

But I’m still alive and loving my life. I’m constantly hoping for a miracle treatment to be made available. I’m still fighting the pretty and pink image of breast cancer. I dream of a world where breast cancer charities prioritise stage 4 – the stage that kills 30 British people a day. I visit animal sanctuaries and watch football games. I work full time. I love being alive and spending time with my wonderful husband. I just wish the killer inside me could just stay silent for one day and not rear it’s ugly head. Surely one day off of the cancer rollercoaster isn’t too much to ask for?

Cancer and diversity

In some ways cancer is the ultimate supporter of diversity. It doesn’t care who it attacks. It just wants victims of any age, race, sex, religion or income group. It will go after the disabled and the non-disabled.

Tragically it’s when you start to look at cancer treatment that discrimination enters the arena. There are those with money. There are those without money. That will be the focus of this blog – looking at the myth that all cancer victims are equal in the UK. I’ve picked on the UK as I’m British and in theory we have universal health care, regardless of ability to pay. This blog will probably annoy some readers. I aim to tell the truth from my point of view.

The cost of life?

The uncomfortable truth is that many cancer drugs in the UK are only available to those who can pay for them – either directly or through private insurance.

This can be for a couple of reasons. Often the drug is restricted to a specific treatment line. A line is literally a series of steps with various treatments listed on each line. For NHS patients with stage 4 the lines are fixed. You get just 1 treatment per line. As treatments stop working you step down the lines until you die or run out of lines (and die).

For example my former drug Palbociclib is for first line treatment only at the minute (unless you are on a trial). That means if you have already had treatment(s) for stage 4, you can’t access it without paying. It is allegedly working very well for many of those paying to access it. I’m furious on behalf of the people who can’t pay for access to drugs like Palbociclib. For stage 4 patients I think rigidly fixed lines are barbaric and should be reformed or even scrapped. Give patients the drugs we need to live when we need them. If they don’t work then try something else. Simples! At least in my opinion!

The other main reason that patients seem to end up being asked to pay for life extending treatments is that they simply aren’t available yet on the NHS. They haven’t been assessed by the inappropriately named NICE. Even worse they have been assessed and deemed to not be cost effective. Palbociclib initially struggled with that until it was finally approved for first line treatment. I was lucky. That approval came in less than a month before my de novo diagnosis with secondary breast cancer aged 33. I might be biased but I think it is very cost effective. I had over a year of high quality life on it where I could actually forget I have cancer sometimes. Not bad for someone told to prepare for my imminent death! In my humble opinion my life is priceless. Now I’m on a new treatment and one drug away from starting chemo and being advised to quit work. That’s a depressing prospect.

I believe all cancer victims deserve access to new and innovative treatments when we need them. The incredible Institute of Cancer Research (@icr_london) has written a terrifying but brilliant drug access report. It shows that the excessive delays in getting new drugs to British patients are killing people. Patients should not be dying while committees debate whether a drug is cost effective. Stage 4 patients like me can’t wait 2-3 years for decisions. I was only given 6 months! The ICR report shows a wait of over a decade from patent to patient in the UK. These delays are killing thousands of people. For those with rare cancers the situation is even worse. For several cancers very few or even no new drugs have been approved in recent years. The system is broken.

I’m 35 years old and my biggest, wildest dream is making it to 40. Whether I achieve that dream should not be based on the size of my bank account. Drug access saves lives and should never be restricted. Everyone deserves a chance to live. I support the vital work of the ICR as they campaign for more drug and trial access. They are fighting to save lives. I thank them.

Dreaming of a longer life

That leads me on to private medical insurance and healthcare. This is where people either through work schemes or their own initiative have an insurance company that can fund their healthcare. Alternatively they can fund their healthcare directly from savings or salary. Fair play to them. I have no issues with private medical insurance. I would be a hypocrite if I did – my family used insurance to get me medical care when I was a child. Without it I might already be dead. However, I no longer have insurance.

I saw people suggesting recently on social media that private medical insurance and healthcare is available to all as a viable and sensible option – just pay for it. That is what I object to. For many people private medical insurance and healthcare is definitely not a choice. It certainly wasn’t for me when I became an adult. Somebody suggested a £5000 test on a forum a few months ago. Hands up if you have that much money? I only have a £3000 limit on my credit card! I hate thinking that I could live for longer if I had the cash. I see celebrities in the media celebrating their cancer treatments without mentioning that they have private care. I don’t blame them, but it creates an unrealistic view of what is available to average patients on the NHS. Hopes are raised and then dashed when patients realise they just can’t afford to live. Media reports need to be responsible and honest about how treatments are funded.

Moneysavingexpert.com lists some 2018 prices for health insurance for healthy 35 year olds. £848 a year was the cheapest. That is not a price that is accessible to everyone.

Unequal access

Uncritically promoting private healthcare fails to recognise the particular barriers placed in front of people with protected characteristics under the Equality Act of 2010.

Disability is a protected characteristic in the UK. You should never be discriminated against because of your disability. However, getting medical insurance with a disability is challenging – to put it mildly. Even if you can get insurance cover, existing conditions are usually excluded and premiums are higher than they are for non-disabled people. I have 2 disabilities (excluding cancer). Private medical insurance was just not accessible for me. I gave up on trying to get medical or life insurance due to barriers like needing paid for GP reports, 3 hour interrogations about my health by strangers and being asked why I wasn’t dead yet. (Apparently the insurance broker would have killed herself rather than have my medical issues. I wonder what she would say now I have cancer?)

It is also worth noting that disabilities can make it harder to exercise and be “healthy”. This raises premiums which pushes private healthcare further away.

Age is a protected characteristic. But the problem with young people is that we often think we are immortal. I of course know better now. However, many young people I know won’t pay for private medical insurance. After all they are unlikely to need it when they are young. They are less likely to be in jobs that provide insurance. Plus when you are scraping together a deposit for your first home every penny counts. In a country with free, universal healthcare why “waste” money?

Sex is a protected characteristic in the UK. However, women are more likely to be in low paid jobs. They are more likely to be carers and doing unpaid caring work. Women are far less likely to have the money for private healthcare.

Also as I’ve noted above, why should people have to fund life saving treatments in the UK. We all fund the NHS. It is not unreasonable to expect they will provide. I don’t object to private healthcare. If you can afford it then I am pleased for you. Just don’t make assumptions about what other people can afford. Support the ICR. Campaign for access to new and innovative treatments for all.

Crowd funding treatments

I realised I needed to mention crowd funding. The idea of people having to beg for money to live sickens me. We are a member of the G7. We are a very wealthy nation. Begging should never be required. Also the concept worries me. Who will get the most money? The tragic but pretty mother with crying children? Or the plain and tired single woman who asks quietly if you could help her? Both women deserve aid from the state to live and live well. They shouldn’t have to rely on the kindness of strangers.

Advocates and fighters

I realised after my diagnosis that if I wanted the best the NHS has to offer then I would have to fight for it. Cancer patients seem to be constantly educating themselves so they can fight for the best treatments. The incredible Pamela Northcott Fund helps people like me fight for what we are entitled to. I just wish that we could focus our energy on fighting cancer rather than the NHS and NICE.

Conclusion

I thought a lot about how to end this blog. However, I decided to leave that job to Aneurin Bevan, the father of the NHS:

No society can legitimately call itself civilised if a sick person is denied medical aid because of lack of means.