News

Today we feel incredibly fortunate to be able to introduce you to the wonderful Katie who you may also known as @kates_cleavage. Katie is an English teacher and writer from Hertfordshire in the UK. Last year she was diagnosed with secondary breast cancer (with mets in her left hip) and now, in her own words, she is navigating stage 4 breast cancer at the age of 30.    

We hope you enjoy Katie's blog as much as we have. We're sure you'll agree that it so beautifully expresses those complex emotions that we know will be (sadly) so familiar to so many women in this community.

The Big Bad: Recurrence and Life Beyond It

"I want to start by sharing an excerpt from the memoir I penned during my primary diagnosis at twenty-one. I wrote over 40,000 words during my treatment; it was a means of navigating the unknown, of making sense of the changes I was experiencing. The last thing I penned, before abandoning the project for living beyond cancer, is below:  

‘Fear pulsates through my temples, pressing hard against my skull, urging my thoughts to enter my brain at a much faster pace than I would like. Here in the breast clinic waiting room at the University College London Macmillan Cancer centre I find myself repeating the same question repeatedly to myself and to my nervous father sitting next to me: what do I do if it has come back? I am wondering if my cells have begun again to fiendishly tangle together, like a pair of messy shoelaces, forming that suffocating mass inside my breast. Over the past year, I have experienced a multitude of phantom aches and pains. At one point, I went to my oncologist with a persistent tenderness in my ribs that an ultrasound deemed entirely fabricated by my fanciful imagination. On another occasion, I became entirely obsessed with a supposed swelling in my abdomen, which again did not prove to be a massive tumour crawling like poison ivy through my intestines. This is the nature of the fear that I am sentenced to live with for the rest of my life. The inconsolable fear of reoccurrence is enough to tempt you into putting an end to contemplations of a happy future. My fear is not especially unique, from reading other women’s blogs I have noted a serial trend in those entries made as soon as the wheels of remission start gaining motion. We ‘survivors’ make it our business to fixate on the probability of reaching the finishing line, of touching base at the house of complete remission.’

That was the last I wrote on cancer back then. You see, I wanted to step outside of that fear, relegate it in my mind. I suppose I mainly succeeded. For five years of remission I qualified to become a secondary English teacher, travelled, fell in and out of love, lived my life with a view to having a long future.  

The Big Bad did return though, in 2016 with a new primary tumour in my left breast. I felt somewhat frustrated that all that fear had come back to justify itself. The new tumour was found in my yearly scan: an essential part of the monitoring process after any cancer diagnosis. I will wrap this chapter of my life up by saying that it was dealt with via a second mastectomy and little else medically speaking. Caught early, I did not have to endure any further treatment. Part of me wonders whether this was a mistake. However, it does not serve me now fixating on this. One again I moved on, but emotionally the fear had resurged with this second diagnosis before thirty.  

In 2019, slap bang in a brand new year, I was diagnosed with secondary breast cancer. A dull hip ache sent me advocating for scans and investigations. This wasn’t easy, I had to have some very difficult phone calls to get the secretary to organise a bone scan. What’s more, it took four tests, including a bone biopsy, to determine that it was cancer. How do I feel now? Sometimes tired, sometimes scared, but mostly alive. Knowing that you will need to dedicate your life to healing, one day at a time, is overwhelming. But I like to think that it is not outside of the realm of possibility. Fear is life limiting, it poisons your present moment, and that is all we really have, cancer or no cancer. I am not immune to fear: it resurfaces with every three-month scan. Scanxiety takes hold but not when I do not let it. As I write this, my results are next week. Until then I will focus on what I have: a lively, life affirming classful of kids ready to learn with me, a safe home that I can return to a place of self-care, and a dream that keeps me alive. I will finish my book, but it won’t be about cancer. Not directly anyway."  

Thank you so much for sharing your wonderful blog with us, Katie. We can't wait to read more of your writing in the future!  

We're super excited about today's amazing guest blogger. We're delighted to introduce you to Danielle. Danielle was diagnosed with HER2+ breast cancer in 2018 and, only a week later, she discovered that the cancer had spread to her liver. Danielle says lives in Kent with her husband, Tim, and their adorable daughter, Joey. She says that she doesn't let her disease define her; she uses it as her motivation to live every day to the fullest with her wonderful family. You can find Danielle @raising_joey where she talks about all aspects of living with incurable cancer.  

In addition to sharing her own story on social media, Danielle is also one of the co-founders of @metastatic_mammas; an incredible support network for parents living with stage IV cancers.    

Here's Danielle's story:  

"Since being diagnosed with stage IV breast cancer in November 2018 aged 29, life has taken some weird and wonderful turns as well as some pretty heart-breaking and terrifying ones too.  

After picking myself up off the floor for the sake of my 6 month old daughter at the time, I decided that I wanted to be a part of the changing narrative that is life with terminal cancer.  

When I first heard that my breast cancer was incurable I was in complete despair. I searched high and low on the internet for stories of survival from other women with the same diagnosis. However, I couldn't find any.  

What I did find was a whole host of ladies (and men) with all different types of cancers and they were all LIVING well with their disease.  

I realised that I had to make this journey of mine through life, albeit a completely different one from what I had planned, a story that my daughter would be proud of.  

 I stopped moping around and started taking action. I had 6 rounds of chemotherapy as well as 2 continuous targeted therapy drugs, Herceptin and Pertuzumab that I still have now every 3 weeks. Whilst on chemo I decided that I wanted to raise money for cancer research by running 10k for Race for Life. I managed to get a group of us together and collectively we raised £6000. From there a fire was lit in me to keep sharing my story and keep raising money as my own defence against cancer.  

I decided to apply to be the subject of a campaign called 'The Worlds Most Precious Stone' and actually got the part. A film crew from Paris followed my hair loss journey and made a lock of my hair into a yellow 1.59carat diamond to symbolise hope, strength and light. A Parisian jewellery designer then created it into a diamond necklace that was on display in The Cancer Centre for Immunology in Southampton Hospital for breast cancer awareness month in October 2019. The film was shown on billboards in Times Square and online and managed to raise over £11,000. The diamond necklace was given to me to pass on to my daughter Joey.  

Since then, I have had many opportunities to tell my story and raise even more funds for charity including on my own social media where I tell all sides of the story about life with incurable cancer; the good, the bad and the ugly. I proudly raised over £2,000 during the UK lockdown by running a marathon in my living room; it took 8 hours and over 66,000 steps but I wanted to show the world that even in times of complete uncertainty, anything is possible.  

I receive messages every day from young women telling me they are now more aware of their own bodies and actually check for changes in their breasts which I am so pleased to see.  

However, the best messages I receive are from newly diagnosed cancer patients who have found my story and felt some hope that there can be life; a beautiful, happy life, for them too despite living with this cruel disease.  

For anyone diagnosed with cancer there are really scary times, extremely tough days and complete uncertainty about the future. But they are all of the things that are out of our control. All of the beauty we find in life after the diagnosis, all the drive to make a difference, all the love we have for the simplest things and the happiness we find just to be here; they are all choices. We cannot control cancer... but cancer cannot control us either."  

Thank you so much for sharing your story with us, Danielle. You inspire us every day!    

We have a new guest blogger today! We’re thrilled to introduce wonderful Joanne aka @reallyratherannoying

Like so many in the cancer community, Joanne has spent much of this year shielding and she has documented her feelings throughout – on the good days and the bad.

Joanne has written a wonderful blog for us today in which she explains what it is like living with cancer in a time of coronavirus and what that has meant for her.

Here's Joanne's story:

"I swear a lot these days. I didn’t used to but now all the time in my head and too often in my speech.  I grew up in a house where no one swore, the first time I said sh*t I was ten, I didn’t know what it meant I’d heard someone at school say it so I thought I’d try it out. My mum was horrified, I cried, I never swore again until just recently. I blame cancer……and coronavirus.

I’ve had cancer for three years, well probably longer but undetected. Secondary or metastatic breast cancer, that’s were the cancer has spread from the breast to other parts of the body. Mine is in my bones and stomach lining. Because of the nature of my cancer I’m able to take a reasonably new drug called Palbociclib. I’m lucky it’s worked for three years with relatively few side effects and I’ve led a relatively normal life. I’ve seen my two children graduate and hopefully next year my step daughter, I’ve got married, traveled to Europe, Africa, Asia and Australia. I’d probably have been to the USA too if they didn’t have that overly weird president. Life was, well not great let’s face it who wants incurable cancer but it was as good as I could make it.

Then something happened in China that turned mine and, too be fair, the whole worlds’ lives upside down.  Coronavirus, Covid-19, call it what you will it’s a damn nuisance. In April as the whole country was in lockdown I sat by the phone nervously waiting for the results of my latest CT scan. Would the cancer still be stable? I’d already outsmarted the average time on Palbociclib so every three months the wait for results became increasingly anxious. The call came in, still stable BUT….It was a big but, the breast team, having reviewed my medication and general health in the wake of the global pandemic, decided that I should take a three month break from the medication. They had weighed up the odds and given my propensity to low white blood cells agreed that the risk of my cancer growing was less then the risk of my catching and recovering from coronavirus. I was devastated and extremely nervous, feeling I was being asked to put my three years of stability and hope at risk but what could I do?

Reluctantly I agreed, treatment was paused and I started on a new regime of taking Letrozole, my other cancer drug, alone and just hoping I would stay safe. Two weeks later my worst fears were realised as I started to get severe pains in my right hip and pelvis. Over the next couple of days the pains became increasingly bad, I could no longer sit comfortably or indeed walk. I rang the Christie hotline and minutes later was taken by ambulance to my local A&E, not exactly were you would choose to go in a global pandemic with a compromised immune system. I was admitted onto a ward for investigation without a coronavirus test, that didn’t seem right but when I queried it I was told by the ward nurses if I didn’t get one in A&E they wouldn’t be giving me one - WOW. I just hoped no one else on the ward had it. For two days I had scans and X-rays , checking for spinal compression or broken bones but nothing appeared out of the ordinary, apart from the pain which was managed to a reasonable level by my old friend morphine. With no visitors allowed the only possibility of banter was with the nurses, too busy chatting about tik tok, the patients, too old to hear me or the people delivering the food, who claimed tuna bake was suitable for vegetarians. Thank goodness I’d had the foresight to pack my kindle and phone charger.

The tests revealed nothing untoward so I was released back home with a bottle of morphine and absolutely no idea where that pain had come from. For days nothing changed still sore, couldn’t walk properly, couldn’t sleep and the morphine made me so miserable I was swapped onto a synthetic alternative. I madly researched what it could be. Then I read stories of ladies having terrible joint pain on Letrozole, could this be the cause of my issue? Was the Palbociclib masking these unwanted side effects. Turns out there are a number of different brands of Letrozole, ranging from the current ones I was taking at £2 a packet to the crème de la crème at £90. My wonderful GP listened to my reasoning and agreed to prescribe the crème de la crème and the results were surprising, over the next few days the pain subsided walking became easier, all be it at first with a stick and I started to sleep. I had another CT scan and waited anxiously for the results, hoping for the best but fearing the worst. The results came via phone call, I was still stable, I could barely believe it and better still could start back on my Palbociclib and even better I could slowly come out of shielding and start to meet with friends and family I’d not seen for four months. Life was great for sixteen hours. Then my daughter texted me, the virus cases in Greater Manchester were rising to a dangerous level we were being told to stop socialising in our homes and even our gardens. What the hell? I’d not even got to that yet, the news was devastating, hopes of slow return to the ‘new normal’ dashed. You could not make this year up.

But as I sit here today on a chilly bank holiday weekend we have been released from these extra restrictions and by Wednesday will able to have friends round again albeit under the social distance rules. I’ve survived those horrible three months, but who knows at what long term cost to my health? Many who’s cancer treatment was paused or diagnosis delayed face an uncertain future, many cancer patients will die needlessly as a result of the restrictions of the pandemic. As we all move towards our new normal let’s not forget those who have suffered and continue to do so.

Follow me on Instagram @reallyratherannoying because let’s face it that’s what life with cancer is."

Thank you so much for sharing your story with us today, Joanne. We suspect Joanne’s words will seem familiar to so many and we hope you find her blog as powerful as we did. We know that this year has been very difficult for so many but Joanne has so beautifully expressed the fear and uncertainty of so many brave people in this cancer community.