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.

What the cancer world needs to learn from the COVID19 response

I have secondary breast cancer aged 35. I’m receiving oral chemo and steadily running out of NHS approved treatment options. I also live in the UK which has the 2nd highest death toll in the world from COVID19.

This blog is about 5 lessons I think cancer researchers, patients, medical staff, policy makers and big cancer charities need to learn from the response to COVID19. I’m not a medical professional or a scientist. I’m just a 35 year old angry at the failed approach to the global health crisis that is cancer. I’m being left to die by a broken system. Hence I’m furious at the response to COVID19 as it shows what is possible.

Firstly we need to make people aware of the cancer death toll and find a way to make them care. 450 Brits a day die of cancer. They are all ages, races and classes. They are dead children, adults and pensioners being massacred by a cruel disease. That was true before, during and after COVID19. Where is our daily press conference, media headlines and expressions of grief from politicians and celebrities? Cancer is slaughtering people and the world is turning it’s back on victims 24/7. So lesson one is we need attention and publicity. Come on major charities – speak up.

The second lesson is that clinical trials in the cancer world needs major reform. During the COVID19 pandemic clinical trials have been stood up at high speed with the default position being that patients should be enrolled on trials with masses of data recorded to enable research. In contrast cancer trials are stopping recruitment, never starting or being paused to enable resources being switched to COVID19 work. Cancer patients are being left on the oops pile of collateral damage. If we complain the response is “don’t you understand? We are leaving you to die for your own good”. If we protest further the response is “you selfish people clearly want medical professionals and COVID19 patients to die”.

Even before the pandemic clinical trials were a disaster zone in the cancer world. Oncologists leaving trials to be a last resort – at which point the patient often doesn’t meet the ridiculously exclusionary criteria for the trials. The trials are run in limited locations meaning poorer patients can be excluded from potentially life saving research. Trials can take years to get going and then don’t even always publish the results. Sicker patients with brain mets are excluded by default from most trials which only seem to want Olympic health levels to make the results as good as possible. These flaws and many others make cancer trials slow and difficult to enrol on. As a result cancer researchers run entire conferences dedicated to finding a way to fix patients to meet trial criteria and boost numbers – instead of fixing trials to suit reality. So lesson 2 is reform cancer clinical trials. So time to act charities, researchers and policy makers.

Third we need to learn from the urgency associated with COVID19 research. Cancer charities talk about cutting deaths by 2035 or even 2050. In the interim people like me continue dying for a cure. Imagine COVID19 patients being told – just be patient and wait at least 15 years for a treatment. It just wouldn’t happen. The lack of urgency given to research on metastatic (terminal/incurable/secondary/stage 4) cancers is a global catastrophe verging on a crime against humanity. So lesson 3 is that charities need to be accountable. Delays and dithering kills normal people and destroys lives. If cancer charities won’t act then politicians need to make them accountable for their failures. After all what do stage 4 patients need most – more research and a campaign on how losing weight reduces your risk of cancer or kind and effective treatments that give us years to be #BusyLivingWithMets?

Next we need to urgently examine how society looks at cancer patients, particularly those of us who are stage 4 ie incurable. The attitude towards cancer patients in this pandemic has broken my heart and soul in so many ways with a constant stream of terror aimed at our community including:

  • Halting cancer treatments (for our own good of course 🙄)
  • Ranking cancer patients to prioritise who gets treatment with stage 4 patients automatically at the back of the queue
  • Locking us up at home under shielding with no additional mental health support and now talking about shielding lasting months or even years so the rest of society can get on with life. The assumption seems to be we don’t have lives, jobs and families we might want to get back too.
  • Issuing guidance that automatically suggests stage 4 cancer patients wouldn’t be admitted to ICU if we got COVID19, even though many of us are physically very fit or have no evidence of active disease
  • Regular media articles reminding people that they wouldn’t be in lockdown if not for those pesky vulnerable people needing protection
  • Videos of medical professionals reassuring cancer patients that they won’t go to extraordinary lengths if we get COVID19 to treat us – because that would be mean. But they will leave us at home to die where possible so family members can hold our hands
  • Asking stage 4 patients to sign letters saying we don’t want treatment for COVID19 so ambulances etc can be sent to people who are in better shape
  • Cancer resources and researchers being diverted from cancer to COVID19. If patients complain they get blocked by researchers and told they are selfish/want researchers to die/wanting special treatment and are not helping the COVID19 response/hate people/are poisonous and more. All we want is equal treatment to COVID19 patients.
  • The list just goes on and on 💔

So lesson four is that cancer patients need better representation in the media. I rode 10 miles on the spin bike yesterday in under 30 minutes, but I’d be denied access to treatments because I’m “unfit”?! Cancer charities and the media need to show that a stage 4 cancer diagnosis does not automatically equal being on your death bed where drugging you up to leave you to die of COVID19 is viewable as being kind and compassionate. I believe in assisted dying for incurable cancer patients – not just leaving us to die without our consent.

Finally lesson five is that cancer patients, especially those of us who are stage 4, can’t rely on certain major charities to protect us when the going gets tough. Some cancer charities are doing a great job – others should hang their heads in shame. We deserve far more from the largest cancer charities than we are getting. Why aren’t they pushing for these reforms? According to the Drug Access Report by the Institute of Cancer Research it can take 14+ years for a cancer drug to go from patent to patient. Why do I suspect that a COVID19 drug won’t even have to wait 14 days? Cancer Research UK openly admits on their website that they are diverting resources to COVID19 (see image of their own website text below). If the largest cancer research charity in the UK isn’t prioritising cancer patients who will?

As always thanks for reading and feel free to make constructive comments. I believe that there are many more lessons that we need to learn, but these are just a few.

Mental health and corona

This is a blog about mental health in the time of corona virus. It talks about cancer, corona, stress, anger, depression and dying. You have been warned. It doesn’t flow brilliantly but is written to reflect the pressure I’m feeling on my mental health. I’m getting help for the stress, but I’m not going to deny that times are hard. Because they are. I’m 35 and don’t know if I’ll reach 36 thanks to my incurable but currently treatable secondary breast cancer. To be honest I would be worried if I wasn’t stressed out and struggling.

I’m apparently no longer just a person. I’m an extremely vulnerable person with underlying health problems aka I have incurable but currently treatable secondary breast cancer. Now in ordinary times that puts me at the front of the queue for healthcare. In the time of the corona virus it puts me at the very back of the queue and puts me at apparently very high risk of complications which would require significant medical intervention. To put it bluntly – Houston we have a problem.

Ever since the corona virus ramped up its attack on humanity, we’ve been told time and time again that most of the dead have underlying health problems. That healthy people should be fine. Let’s party! Oh wait I’m extremely vulnerable. Oh ****.

Hearing that message about the dying having underlying health problems doesn’t do much for my mental health. Hearing “reassuring” briefings that they would have died soon anyway doesn’t help. I don’t care that I’m incurable. I’m currently working full time from home and still have my health mostly. I exercise as much as I can. I’m not expendable – I’m worthwhile aren’t I? I’ll still get treated won’t I? After all I could have months or years if I find the right drug. I want to live long enough to die of breast cancer please. Please pretty please! I’ll beg!

So the media has reminded me frequently of my mortality, but never mind the state has my back right? They’ll help me. Oh wait – guidance on treating cancer patients if the system is overloaded has come out. All cancer patients are to be ranked in priority order! Don’t panic Kit it’s fine. Oh incurable patients go to the bottom of the queue if they have to prioritise. Oh ****! That comment from the oncologist about having less than a year means I’m listed under priority 6 of 6. Oh ****.

But never mind I’ll still get helped won’t I even if I get corona virus? New guidance issued about using clinical frailty scale measures. Terminally ill people regardless of fitness levels count as 9th tier – out of 9. Oh I’m seriously screwed.

Practically last hope – I’ll still get cancer treatment right? At least until the system is broken and prioritisation comes into play? Well for my own protection, possibly not. We’ll discuss it later on. After all I’m waiting for scan results and my oncologist has already decided that the drug I’m on isn’t working (No idea how) so maybe there isn’t a point anyway. We’ll decide closer to the time – after all chemo makes your immune system weaker and that isn’t good in the time of the corona virus. Remember that terminal patients probably won’t get a ventilator. That’s what the oncologist said. Now I’m stressed. Don’t get stressed out Kit – as they keep telling you this is all for your own good and for the protection of the NHS.

I need to go do something. I’m apparently now extremely vulnerable after all. I need to go for walks and enjoy my life – what’s left of it anyway. Wait a minute my phone has beeped. I have a text message! Please don’t leave the house for 12 weeks. You can open a window for fresh air. But don’t leave the house for any reason. Oh ****. I need a hug but my phone is beeping again. Stay at least 3 steps away from anyone else in your household. Avoid physical contact. Try to self isolate in your room. Sleep alone if possible. Take all meals back to your room. But don’t leave the house for any reason. Oh ****, **** and more ****! What wonderful compassionate guidance for the most vulnerable to this virus – all for our own good.

So overall I’d rank me as a 2 out of 10 for positivity right now. I’ll be honest and admit I’m freaked. I’m worried about the virus, my cancer treatments, my scan results and the impact of self isolating for 12 weeks. I’m also worried about my friends and family – many of whom are extremely vulnerable.

There are things I’m looking forward to. I’m still working and have lots of virtual team building events planned. I have a wonderful husband who I’m not staying 3 steps away from – seriously I can’t do that for 12 weeks! I love him and he is self isolating as well so I’ll take that risk. He and I both need me to. Aren’t I a rebel?! I’m running the @metupukorg Instagram account. Please follow us. I’m following lots of animal related Twitter accounts like police dogs to fulfil my need to see cute animals. I’m counting down my 12 week lockdown. But I’m still stressed out and here to say that’s ok. After all I’m only human – and apparently a very vulnerable one at that!

As always thanks for reading.

Cancer and corona

Warning this blog discusses secondary/metastatic/stage 4 breast cancer and the impact of living with a compromised immune system during the corona virus outbreak. In other words it isn’t a laugh a minute.

I’m 35 years old and I have incurable but currently treatable secondary breast cancer. I’m going to die of breast cancer in my 30s – or am I? The world is facing a probable pandemic of corona virus and as the news keeps reminding us, people like me with a compromised immune system are at most risk of complications and death. So maybe cancer won’t “beat” me after all. Whoo good times! But I shouldn’t be sad as healthy people are likely to survive and only feel ill for a few days. What a relief for them!

Despite that people are understandably terrified about corona virus. Believe me I understand. This virus outbreak is scary. Nobody deserves or wants to be ill. But that doesn’t mean I’m not fuming at people panic buying boxes of soap, hand sanitizer and paracetamol. I’m furious at them. I’m currently sitting at home in pain. Pain that could be controlled by paracetamol. But I’m not taking paracetamol today. I’ve only got a few left and I’ve been unable to find any more for 3 days. I could take oxycodone but I prefer to save those for severe pain as they make me feel sleepy. I just want to be in less pain and able to function. I have a great life despite having stage 4 breast cancer. I work full time, watch my beloved AFCRD play football and have lots of hobbies like going for walks. The humble paracetamol helps me to do that. But I’m running out and that scares me.

I make extensive use of hand sanitizer. Not to fight corona virus, but to fight back against bacteria and germs that could lead to me getting an infection and dying. I wash my hands constantly, but hand sanitizer is an invaluable source of reassurance and comfort. It means when someone leaves the ladies without washing their hands I can use the sanitizer after touching the door. I can use it after shaking hands or receiving change in the shop. It might do nothing to keep me safe for all I know, but it gives me the confidence to live what is left of my life to the fullest and stay #BusyLivingWithMets. But like so many other disabled and immuno compromised people I can’t get any and I’m running out. It might seem like a minor issue, but it’s another source of stress that cancer patients like me don’t need. We want to live and live well. We want to live long enough to die of breast cancer. As for the “people” stealing hand sanitizer from hospitals – I have no words to describe what I think of them. I truly believe that society can legitimately be judged by how it treats the most vulnerable in society. Well I’m feeling a bit judgemental towards some people right now.

But hand sanitizer, paracetamol and even the threat of death from corona virus isn’t what is messing with my head right now. What is breaking me is anger about how it shows that society could help secondary breast cancer patients so much more. But they aren’t and that hurts. So far 3 British people have died of corona and that is of course heartbreaking. Those people didn’t deserve to die. A eulogy to a victim in his 80s is the leading article on the BBC news app. The leading article. It makes me want to scream. 31 British women a day die of breast cancer. 31 of us died today. 31 will die tomorrow. Our deaths are invisible though. Where are our headlines and eulogies? The women and men being slaughtered by cancer are wonderful people too, but we are ignored unless we are celebrities. Imagine if we had a fraction of the headlines, resources and attention. I am imagining it and it makes me cry about what might be.

Billions of pounds are being spent across the world right now on dealing with corona. Research is being massively funded. That’s a great thing. As noted above this is a terrifying virus outbreak. Governments need to do everything to stop it. But why can they do everything for corona and so little for cancer? Our government won’t even implement the moderate recommendations on drug access by our own wonderful Institute of Cancer Research. Those recommendations could save and extend the lives of cancer patients aged 0-100+. We matter too. Don’t we?

To finish up this blog let me make it clear that I support efforts to counter this virus. I understand that people are terrified – I’m one of them. I agree people should do what they can to protect their families. I just can’t help comparing the reaction to corona to the reactions to cancer. Because if you want to talk about a global health emergency, you have to discuss cancer.

31 British people a day are killed by breast cancer alone. That’s more than one an hour. That’s 217 a week dying. We’re in a state of panic buying and emergency legislation for a virus killing approximately 3-5% of victims. Do you know what percentage of people like me with secondary breast cancer die? 100%

Patient and power

Background

Normally when I’m thinking about words starting with the letter P I’m getting angry about words like “pink” and “positivity”. As a 35 year old with incurable but currently treatable secondary breast cancer I really hate pink and positivity!

Last week I took part in an interview with the wonderful lead cancer nurse at my local oncology unit. She wants to change and improve the oncology unit – something I fully support although I don’t envy her with the amount of challenges she will face. During that meeting she commented on me referring to previous admissions for prolonged treatment as being a “guest” of the unit. She wondered why I said guest and not patient. That has inspired this blog about being a patient and the power you have when you are in hospital.

Why I’m a guest of the NHS

I respect and admire the NHS. I don’t think it’s flawless though – I’ve been a guest of the NHS often enough that if they were a hotel and ran a loyalty card scheme, I’d have a Gold Card. They would also have had some scathing reviews on TripAdvisor from me. Some good reviews, but mostly scathing. However, I’m still alive so they are clearly doing something right for now. Despite needing serious improvements, there are some good things about my local oncology unit.

Unfortunately the NHS isn’t a hotel. When I stay at the oncology unit overnight I’m described, viewed and treated as a patient. I’m not a guest. It’s very easy to feel powerless as a hospital patient. Everything is out of your control. Where and when you sleep. Your treatments. What you eat and drink. Who gets to touch you and provide intimate care. When you can leave. It’s all in the hands of the medical team. They have the power.

When I felt powerless

It feels depressing writing this section. Cancer steals everything from me including power, dignity and control. My oncology unit has often managed to help cancer out with stealing these things from me (personally I’d prefer the unit was on my side). I’ve been in the oncology unit overnight several times and lost my power, dignity and control in several ways including, but definitely not limited to:

  • Being told I was imagining side effects to a treatment when I wasn’t.
  • Having to beg for extra pain relief.
  • Being ignored when I rang the buzzer for help.
  • Being painfully touched by medical staff carrying out procedures who laughed when I cried out in pain.
  • Being asked if I planned to behave and accept my Fragmin injection unlike (nurse raised voice at this point so all in bay could hear) “the stubborn little girl” (aka adult woman) in the next bay.
  • Told I wouldn’t be able to leave without permission, even though I was physically fit and wanted to attend a once in a lifetime opportunity.

When I reclaimed my power

After I was told I should miss my once in a lifetime opportunity and stay in the hospital instead, something flicked in my brain. I suddenly remembered that I have power. I deserve dignity and control. I have secondary breast cancer. I can’t afford to miss once in a lifetime opportunities. I was no submissive patient. I wasn’t a prisoner. I was a guest there of my own will. It wasn’t like I had a contagious disease. So I announced I was leaving the next morning. I told them I’d take whatever drugs they’d give me and monitor my health but I had to leave because I’d regret missing the event for the rest of my life. That night was the first time I used the word guest.

Guests have power. Guests expect service. Guests don’t force down inedible hospital food without complaint. Guests will discuss with their medical teams but challenge them as needed. They can still be polite, calm and easy to care for, but they have and want control over the situation. That’s why I now describe myself as a guest of the oncology unit. It reminds me I’m not powerless – I still have some power and control over my life and I will fight to keep it.

Conclusions

The word guest seems harmless, but everything it represents gives me strength and power. When I’m facing a combination of secondary breast cancer, the NHS and a deep rooted lack of self confidence I need all the help I can get to stay powerful and #BusyLivingWithMets.

I’m also using that increased confidence to stand up for myself when I’m at outpatient appointments in the oncology unit. I’m learning to believe in myself and believe that I deserve better treatment. As an outpatient I’m not a guest of the unit, but I still deserve to be treated just as well and respectfully as a guest at a top hotel. That’s why I support the work of the lead cancer nurse as she works to turn a good unit into a patient centric great unit.

PS the once in a lifetime opportunity was incredible and well worth not missing.

Two quotes I keep reminding myself of about needing to believe in myself are below. I particularly love the Eleanor Roosevelt quote.

The most common way people give up their power is by thinking they don’t have any.” – Alice Walker

No one can make you feel inferior without your consent.” – Eleanor Roosevelt

Blue Monday

Today is Blue Monday. It’s also Martin Luther King Jr day in America. He was an amazing man who said many powerful things that can still influence the hearts and minds of people decades after his death. Now that’s a legacy. Today I saw one of his quotes and it really resonated with me as I was feeling cold and blue at work today thinking about my secondary breast cancer.

“In the end, we will remember not the words of our enemies, but the silence of our friends.”

I couldn’t help but think about that quote today when I saw that a petition from a wildlife charity had reached over 40 thousand signatures. Now I love nature and I’ve signed the petition myself, but I can’t help comparing that to the number of people that support petitions to reduce the amount of deaths from advanced/secondary/metastatic breast cancer.

116 people a day are killed by breast cancer in the US. 30 people a day are killed by breast cancer in the UK. Hundreds more will die of breast cancer around the world every single sodding day. It’s a global killer. But despite some incredible advocates working unbelievably hard to make a difference and be heard, very few people are speaking up for secondary breast cancer patients.

The UK charity Breast Cancer Now launched a petition in October 2019 calling for better support for UK secondary breast cancer patients. So far 47 thousand people have signed it. I hate to be brutal but that is pathetic. The charity promoted the petition brilliantly, but people didn’t bother to sign it. However, there are two petitions on the UK government petitions site about banning fireworks with over 300,000 signatures each. Seriously Britain? That pisses me off. I’m worth caring about and so are my friends who are dying every day. 365,000 people signed a petition about not putting nets on hedges FFS. What message does that send to those of us who are #BusyLivingWithMets and desperate to live? Where are the signatures on petitions for us?

I know this blog sounds angry and bitter. I don’t care. I’m angry. I don’t have words to describe how angry I am. Thousands of people in the UK have breast cancer. Thousands of us have secondary breast cancer – the type of breast cancer that kills everyone who gets it. Those of us with the disease are people with friends and family. We are worth investing in. We are worth the cost of new and innovative treatments. But apparently we aren’t important enough to even get people to sign a petition. What sort of a message does that send to policy makers and researchers? What does it say to politicians wondering what would be popular with the electorate?

Statistically every single person in the UK knows someone who has had breast cancer. According to Breast Cancer Now 1 in 7 British women will be diagnosed with it. In the UK a woman is diagnosed every 10 minutes. In other words most adults will have a friend or family member who has been diagnosed. So why aren’t cancer petitions more popular? Why won’t people sign them? Why are people silent?

This blog was an anger blog, but also a plea for compassion. I’m part of METUP UK which is a patient advocacy group. We are shouting as loud as we can along with other advocates and charities. But please consider speaking up with us. Because believe me, Martin Luther King Jr was right. At the moment all I can hear is the silence of my friends and that breaks my heart.

If this blog has inspired you to sign a cancer petition, consider signing the following:

#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.

Prehab, exercise and why words matter

Warning! This blog will contain a very dangerous thing. It will contain my opinions!

News emerged today of an expanded effort to provide cancer patients with “prehab” before treatment. The scheme which sounds amazing aims to get patients as physically and mentally prepared as possible for the torture that is cancer treatment. By doing so the aim is to improve survival rates and reduce treatment side effects. The fitter you are, the better your chances. In other words this is yet another awesome scheme to emerge from the Greater Manchester area. As a secondary breast cancer patient in Gloucestershire I’m left wishing, yet again, that I’d taken a job up North 14 years ago instead of settling in the beautiful South West of England. Manchester actually seems to support cancer patients and I have to admit that I am very jealous.

So what’s the problem?

So why am I doing a blog post about this amazing sounding initiative? Mainly because most of the reporting on it has been rubbish. Also because when this scheme finally reaches Gloucestershire I’m wondering just how eager my oncology unit will be to support it 🤔.

Words matter

Many of the headlines about the scheme have focused on patients being helped to “get fit” and used terminology like “boot camps”. This is problematic for several reasons.

Articles about cancer patients needing to get fit run the risk of alienating those that most need helping. Language matters. The idea of being told that you have to go on a boot camp to “get fit” could leave patients feeling like they have caused their own cancer in some way. When you are first diagnosed “why me” is a question that virtually all patients ask. Recommendations to attend boot camps to get fit pre treatment could cause patients added stress and lead some to blame themselves or to be blamed by others. Certainly the comments on many articles today were overtly blaming patients and playing on stereotypes about unfit cancer patients. The articles also ignore the physically fit and active people that get cancer. Some of the healthiest people I know developed cancer, but were diagnosed late as they didn’t fit the unhealthy stereotype. Conversely some really unhealthy and fat people never get cancer. Words matter and stereotypes can kill. Nobody is too healthy for cancer.

Access

The other thing that has really annoyed me is that the reporting hasn’t highlighted just how limited the access to this scheme is. One article suggested that 2000 patients would take part over the next two years – that is a tiny percentage of cancer patients. A lot of people are literally going to die waiting for access to this scheme. Why can’t it be rolled out more quickly and why aren’t more trusts taking part? That isn’t being emphasised or even questioned in many articles I’ve read.

Good reporting

I should praise the BBC though. Their article focused on the positives of prehab, rather than focusing on victim blaming click bait about boot camps and needing to get fit.

BBC News – NHS to offer cancer patients ‘prehab’ fitness plan ‘to boost recovery’
https://www.bbc.co.uk/news/health-50915913

Away from the reporting I have other concerns.

Time

Being told that you have cancer is literally the most mind blowing, head fuck ever. At that point you need support and help. You also need the opportunity to cry, scream, rage against the fates and in some cases to get hammered or stoned! This prehab initiative sounds brilliant, but patients need to be offered this scheme in a tactful way. Some people just might need time to come to terms with things, rather than starting in the gym within 48 hours. Everyone is different. I hope patients are given time and proper psychological support as well as physical support.

When hospitals just don’t do prehab

I’m a secondary breast cancer patient in Gloucestershire who attends Cheltenham oncology unit as an NHS patient. This wonderful prehab scheme has highlighted my concerns with many aspects of my local oncology unit.

I was diagnosed de novo at stage 4 aged 33. Pre diagnosis I was at the gym twice a week. I hated exercise growing up as I was a mobility impaired klutz. But thanks to my incredible personal trainer Vicky Hutton I’ve grown to love keeping as fit as possible. She has turned me into a fitness fanatic and most of the time I am very appreciative. But my oncology unit definitely doesn’t appreciate me exercising.

My oncologist is constantly telling me off for not taking it easy. Post my diagnosis she warned me against excessive exercise. At one point when I was saying how I’d done a long walk the week before, she asked my husband (in front of me) if I was lying as she refused to believe me. These days I just don’t tell her what I do in the gym. I can’t handle the aggro. I’ve asked for guidance and just get shrugged off. I’ve asked about my bone density and whether there are areas I should be careful of and again got my concerns shrugged away. As a member of the unit told me after my diagnosis, I was lucky as I now had the perfect excuse not to exercise and eat healthy food 🤬. Exercise is not a priority for them. I nearly gave some patients and staff a heart attack when I started doing lunges in the waiting room once! I got offered a magazine, knitting needles and my choice of tv channel to try and make me stop! 😂

As a de novo patient I’ve not had surgery, but I have had radiotherapy. I had no prehab advice or guidance on exercising post treatment. All I was told was to rest as much as possible and not move the treated area too much.

My unit really doesn’t seem to care about promoting healthy lifestyles for patients. There are regular cake sales, as well as constant provision of hot chocolate and junk food for in patients. A patient who said she was off her food was advised to drink wine before every meal to boost her appetite. That included breakfast! The last time I stayed in the unit I was told off for going for too many walks with a “joking” suggestion about putting sedatives in my IV. Apparently walking might be dangerous for me as it could raise my blood pressure, temperature and heart rate. As they were all low I would have thought that was a good thing, but what do I know?! When I said I didn’t want to stay in the hospital bed due to my fears of blood clots, the response was that that was the reason they gave all patients Fragmin injections so I shouldn’t worry. They even suggested that by going for a walk I could catch a deadly infection or have a heart attack. If I stayed in my room I was offered an extra hot chocolate! Well I went for a walk and I’m still alive 6 months later.

So yes prehab for cancer patients is fantastic, but at least at my local unit I wonder how well it would actually be supported. Cheltenham appears to have a long way to go to even approach the proactive approach of Manchester.

Finally as with all these wonderful sounding schemes, I wonder if patients like me with advanced cancer can take part? We’re left out so often that I have my doubts. Being #BusyLivingWithMets is exhausting but I won’t stop exercising. Even if I end up bed ridden I’m sure my personal trainer will come up with something I could do!

But thank you Manchester for promoting exercise for patients. Hopefully one day that will be the norm and experiences like mine will be unheard of.

Dear Santa

Hi Santa Claus,

My name is Kit and I’m 35 years old. I’m a civil servant, wife, feminist, animal lover and a football supporter. I love exercising, debating politics and spending time with my wonderful husband – preferably in Stiffkey in Norfolk! I have incurable but currently treatable secondary breast cancer. In other words I love my life but I don’t know how long I have left. As such I thought I’d write you a letter this Christmas to see if you could leave a couple of much wanted gifts under my tree. I promise I’ve been good this year!

Firstly Santa could my cancer friends and I have access to new and innovative treatments for Christmas? There are lots of amazing treatments out there but they aren’t funded on the NHS. Apparently extending and saving our lives isn’t value for money which is a bit harsh really. Personally I think we are worth it, although I will admit to being biased!

Secondly Santa could you spread some good will to people at the major cancer charities, drug companies, the NHS and NICE? It would be an amazing Christmas gift to feel like secondary cancer patients are a priority. Even if you could just make the general public care about us that would be incredible. 30 British people a day are killed by breast cancer alone, but nobody seems to care. I don’t understand it. A recent petition to help secondary breast cancer patients got far less signatures than petitions about banning fireworks or putting nets over hedges. As long as the public don’t care, policy makers won’t either. Please Santa make them care.

As my third present I’d love to see proper funding for oncology units across the country and the NHS in general. If you could leave a magic money tree under the Christmas tree at the Department of Health that would be incredible. If it means I don’t get the last 4 Outlander books I understand. I don’t want the reindeers pulling a dangerously heavy sleigh after all.

Finally, could you possibly leave a lump of coal under the tree of certain GP receptionists this year? I’m sure you know already, but there are one or two that really haven’t been good!

Thank you so much for reading my letter Santa. I know I’m older than most people who write to you, but deep down I’ve never stopped believing 😊

Love from Kit

PS if the Outlander books do fit on the sleigh as well, that would be fantastic!

Two years down and ? to go

Two years ago today my world crashed down around me. On 7 November 2017, I was 33 years old and my main medical issue was a sore back. On 8 November I was in a hospital bed being told that I had cancer in multiple locations in my body. I think my highly coherent response was “oh”. Within a matter of days I was diagnosed with secondary breast cancer and given less than 6 months to live. As I say my world changed forever. All my faith in the future vanished. I was 33 years old and dying of breast cancer. The future was a forlorn hope.

But two years later I’m still alive and loving my life for as long as possible. I’m not dead! I’m 35 and daring to hope that I’ll make it to 36 (fingers crossed – only 7 months to go until June). I still work full time and work out at the gym regularly. I’ve seen my beloved AFC Rushden and Diamonds get promoted. I just can’t believe I’m still alive.

In the last two years I’ve been promoted at work, raised money for charity, been on holiday to Norfolk multiple times and had some amazing animal encounters. I’ve stood on beaches, attended musicals and concerts. I’ve even met a handsome prince and been to a palace! Through social media I’ve met incredible women and men who have inspired me to fight against our broken system of cancer treatment – more on this in a minute. I’ve also learned who my true friends are and found new friends in unexpected places.

I’ve lived my life like every single day could be my last. After all it could be. All it would take is an infection or bad drugs reaction and I’m dead.

My life hasn’t been perfect though. I’ve had medical setbacks, suffered from treatment side effects and the slow but steady progression of my cancer. I’ve lost social media friends who have been killed by breast cancer. I’ve lost real life friends who can’t accept my new reality. I’ve also had my faith in the NHS and major cancer charities destroyed.

I’ve learned a lot since my diagnosis. One of the most painful lessons has been that the numbers of deaths from cancer aren’t inevitable. Cancer patients are being killed by deliberate decisions to not allow us access to new and innovative treatments. We are dying while NHS leaders focus on prevention and early detection.

My cancer was caused by a faulty PTEN gene. It was 100% impossible to prevent with current medical science. I had no symptoms until I was already at stage 4. I was diagnosed 17 years before I was eligible for a mammogram on the NHS. How does prevention and early detection help me? I don’t care if I sound bitter and selfish. I want to live. I promised my husband I would love him forever. Instead I’m being stolen from him by breast cancer and a broken system that has ignored stage 4 for far too long.

11500 British people a year are dying of breast cancer alone. We are dying because of arguments over whether our lives are worth investing in. When NICE denies a treatment that could keep me alive for longer, all I hear is “you aren’t worth saving”. Well I say that we are all worth saving. We are worth it and we deserve to live. I’m fed up of seeing people like me die when they don’t have to. I’m fed up of secondary cancer meaning second rate treatment. I’m fed up of fixed treatment lines meaning that patients like me are being killed because cruel rules say we aren’t eligible for access to new and innovative treatments. I’m fed up of charities blaming cancer patients for their illness and failing to prioritise helping people like me with incurable and terminal cancer. We shouldn’t have to be grateful for scraps of support. The major cancer charities should be fighting tooth and nail for us. Instead we see pink ribbons, positivity and even more pink. I’m just fed up. No I’m not fed up, I’m furious. I’m hurt and I’m looking for solutions. I don’t want to die while people sit around and talk about change in committees that never actually change anything. That’s why I’ve joined the amazing ladies of METUP UK. We are demanding change and we demand that change NOW. Check out our hashtag #BusyLivingWithMets on social media or our website metupuk.org.uk for more details. Please support us. We will be heard and things will change. They have to change.

I can’t do a blog without mentioning the people who have made it possible for me to reach my 2nd cancerversary. I owe everything to them.

  • My husband Phil. He is my world. I promised him forever and I’m so sorry I can’t keep that promise 😢
  • My friends and colleagues, especially my wonderful line manager.
  • My secondary breast cancer nurse who is amazing. Since she was hired she has been a lifeline and massive help.
  • My personal trainer Vicky Hutton. She has helped me stay fit and even before my diagnosis she changed my life for the better. She has stage 4 lung cancer, but has taught me that I can and must keep living and exercising. I genuinely believe that without her I wouldn’t have lived 6 months after being diagnosed. She has just gotten married and I wish her and Ian all the joy and happiness in the world. Check out her great blog or her Instagram account vickyvstrongerthanc.
  • On 1 September 2018, I was in a rough place emotionally. I didn’t know anyone else with breast cancer and all the local support groups seemed aimed at early stage breast cancer patients aged 60+. Then I saw that a woman called Jo Taylor (@abcdiagnosis) had taken over the Twitter account of Neville Southall. Through following her I’ve come to know countless brilliant cancer patients and made friends with a wonderful group of people. I’ve found my feet, my voice and my support group. Jo has inspired me and countless others to challenge our broken system. She is an incredible woman who is almost singlehandedly changing the world.
  • I have to mention Kate Northcott Spall and the Pamela Northcott Fund. Kate is amazing and is doing legal training so that she can help more patients access the drugs they are entitled to. She is truly a voice for the voiceless.
  • Finally everyone at AFC Rushden and Diamonds has been brilliant and supportive. It truly is an amazing community club.

So to sum up what has turned into a very long blog. I’m alive and loving my life two years after my terminal cancer diagnosis. I’m still living my life and I don’t plan to slow down anytime soon. I’m angry, passionate and determined to help change things. Fingers crossed that I’ll be writing my 3rd anniversary blog in 2020. I wonder what I can do in the next 12 months?!