So our little task-force went on to achieve a lot since our first meeting two years ago!For anymore information on the Metastatic Breast Cancer: Wales Campaign please check out MBCWALES.co.uk - it will be merging as part of the METUPUK site in due time! Apologies, I have met with the Health Minister and of course had the launch event... I will update when I can :) The Red Flag Info-graphics for Metastatic Breast Cancer have finally been launched in England and Welsh in Wales! They are a now a part of the End of Treatment summary in the Primary Breast Cancer Pathway. They will also be flagged at GP's and widely circulated. For more information on the wider use of the info-graphics please see the ABCD website
You may or may not be wondering why I have not updated for a while. Well the truth is I have been updating more than ever!
​ Since starting Trodelvy I have been doing a 60-90 second vlog everyday and have been uploading them to Instagram. The goal was to monitor and share the side effects of this relatively new drug and make it seem less scary. I also wanted to use the opportunity to further raise awareness on the the crazy challenges that have to be faced whilst navigating a terminal diagnosis. Now I am about 134 days in... And it occurred to me, I should probably make the vlogs available here too. But for now a simple insta widget will have to do. I hope you get something from them :) I've completed a quadtriptych of illustrations from my time in hospital. Each of these moments have stayed with me massively, I plan to write about them soon. I wanted to capture the feeling of being 'invisible' on a cancer ward while the world goes by. I hope you enjoy them and the vivid memories they evoke.  "Am I able to have some paracetamol and codeine now please?" - The tranquility of the sunrise disrupted by the rattling trolleys, swishing disposal aprons and the shrill voices of the health workers starting their day. My favorite thing to do on the ward was to watch the first light in the dead silence before everyone woke up. During breakfast, I liked to watch the cars fill up the parking spaces, people would beep, argue and struggle to park. It was entertaining and pointless.  "We are a big family, but a private one" - This one was inspired by 'Bev'. She was newly diagnosed, and couldn't lie down. She was bedbound, but would sit hunched and small, taking up very little space. Her really bad cough would be muffled at night to not disturb us. Her phone never rang, and her days were spent in this position, breathing heavily with her eyes closed. 'Bev' was a kind soul, but wanted to be left alone.  "Please, just make me feel better or let me die" - Pushed to the absolute brink, hair falling out in clumps, getting sicker with no clarity and being jabbed, pulled about until driven to breaking point, with no familiar face to cry too. This was my worst point, 0.0 WBC and pre blood transfusion, 40c temp, burning nose, throbbing bones, sore throat and mouth, dehydration and light sensitivity. At my lowest, I met Dr Khadija Stone, you can tell when someone cares.  "Beep. Beep. Beep. Beep. Ding. Ding. Ding. Ding"
- 'Lorrie' was bed bound and was stuck in this position, her machine kept going off because they cannulated her in the crease of her arm and the pressure kept blocking the line. She often had her eyes closed and was very quiet, ironically due to her machine she became the loudest on the ward. I shared a cake with her, she smiled. Reflections and speaking from the heartHere we are again, again. It’s 7 days until my Stage 4 anniversary of 3 whole years and coming up to 7 years of Cancer dictating my life. I re-read my 24-year-selfs writings on this blog over the weekend. A tough read, albeit quite cringey reading at times, but I guess we all may experience some of this when we revisit our naiver selves and their outdated state of reality. I think that’s the great thing of putting yourself out there a little bit; someone, somewhere, at some time will come across that 24-year-old and will relate to her freshly documented experiences... And forever in that space I will forever be that young woman trying to make sense of the new expectations on life I was not prepared for.  After the rough ride of 2016 and the post diagnosis world of primary breast cancer, Nick and I had to rejig everything. We had some modest savings pre-cancer, and I was through various application processes for further education in Copenhagen and Amsterdam. Nick had completed his QTS and we were well on our way to start our dream lives. But, I recall the cold realisation seeping into me post treatment, that we were not going to be able to pick up our lives and ‘carry on’. Far from it. I was now intertwined to the Welsh health system for at least the 5-year discharge benchmark for primary BC at the time.
I had to be ‘normal’ again after being poisoned, chopped up and burnt. Then alongside general life, I had to contend with getting stabbed in the ovaries every 28 days, kept in a crippling suspended menopause. I was left with no lymph nodes in my left arm, no breast, a low immune system, I was on a clinical trial for 2.5 years which involved a daily dose of Palbociclib. I felt like a fraud at work because the long hours and travel would absolutely destroy me (Messing about with wigs, weight gain and severe fatigue, a cut on my arm could lead me to a strange cities A&E in the middle of the night) but I didn’t want to lose that bit of independence I had too. But I knew I would never really be myself again. Fast forward to the secondary diagnosis of 3 years ago... Patchy updatesThings have changed since I’ve last checked in. Lets see:
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"It was a little bit like well, you're dying anyway, so there's nothing much we can do for you." Ahead of the debates due to take place in the Senedd on Wednesday 19th Oct, Rhiannon has done some great coverage around the need to Secondary Breast Cancer specialist nurses in Wales. Unfortunately due to more turmoil in Westminster it doesn't look like the piece will be on BBC Wales politics at 10 tomorrow anymore. A shortened version of the original story will be shown on 'Wales Today', either today or early next week. A day of two halves
As I was driving up to Cardiff this morning I really was not in the best place. There has been an influx of deaths recently in my circle, along with an impending CT scan combined with a blood test which I know will tell me my tumour markers are still rising. I was not feeling particularly in the mood to be in a space where red tape seems to exist for the hell of it.
There were a few factors which had wobbled me before the petitions committee meeting today and I was starting to feel a little messed around. Everything seemed a little ad-hoc and rushed last minute, despite having 31 days to prepare.
I heaved myself out of the car and took a little stroll to the bay front and sat overlooking the water with a cup of tea. I kind of ‘phased out’ for about 5 minutes, just feeling the Autumn sun on my cheeks and going down a hypothetical rabbit hole of what would need to start going wrong for me to end up like Sally, Wendy and Nina. God... I hate it when I have a scan coming up. Reality quickly snatched me back with a pocket buzz, it was Mags. She was waiting to meet me outside the Senedd, it was only 12.55. Great stuff! – we can chat while we wait. ​ 
I created MBC Wales as a sort of off shoot of MetUpUk aims focused here in Wales.
MBC Wales' goal is to be an information site to encourage people to sign the new petition I am launching on the back of the monthly meetings I have with David Rees MS, Stephanie Grimshaw, Head of SBC Macmillan in Wales 'Mags', retired SBC nurse Ann Baker and breast surgeon - Zoe. Please check out the open letter for a concentrated compilation of what we are calling for with this petition. How music has become a coping mechanismGrief is unexpressed love with nowhere to go – Katie Thomas RA Most of us have thought about our funeral songs. We want to pick something that resonates with our experiences but also sums them up. We want a reflection of us, our legacy to make our loved ones feel something, whether that is a giggle or tear. This is grief. This is allowing the music to take control of your emotions and allow you to ‘feel’ yourself and begin the grieving ‘process’ (I hate that term). I love living in the immense, disorientating ‘Grey area’ that is ‘Life’. Like many others, I turn to the creative spaces externally and internally to try and make sense of the world and my place within it. At times where I feel like I am drowning in my own head, and I need to make sense of my thoughts, I turn to writing. When I feel like I have things figured out and am looking for confirmation, I paint. And when I need to let go, I listen to music and if my body is willing, I dance. Music is just incredible; it can change your state of mind and shake you fundamentally to the core. Music can make you cry, laugh, ‘rage’, shocked, but overall, it makes you really feel something and it doesn’t matter if you are listening at home alone or at a club packed to the rafters, all swaying to the same rhythm, you always feel like you are not alone – almost like you are a part of something bigger. Like many others before me, many of my strong childhood memories are of music. I can recall a collective of early summer mornings. The smell of sun cream in the air as my mum brushed my hair to ‘The Beautiful South’s’ Don’t Marry Her. There were also times when music would fill me with anger and frustration, crying on the stairs as my father would drunkenly belt out 'Robbie Williams' Angels after coming home in the early hours. I remember the countless times I would be staring at the dark ceiling being awoken to the first chord of the song, my gut would fill with dread knowing he was ‘on one’. My first core memory of sharing music was in 1996...
​I am incredibly grateful I was able to talk about being your own advocate and the reality of living through end of your life on BBC Radio Wales this morning.
I was very nervous so please excuse the giggling at times. I tried my best... so please consider a listen and see what you think. Could 'pride' be masking something more sinister?Oh, how I wish this post would reflect the title, just based on petty English vs Welsh football rivalry. But no. I am someone with little interest in football, I grew up with a football hooligan father and in my household, football was law. I had a healthy interest in the sport as a child, I played it, wore the merchandise and even had a season ticket to Cardiff FC, but it didn’t take long after growing up, to realise my father was on the wrong side of football culture. I am talking the dark underbelly which perpetuated toxic masculinity and glorified violence. But that was just a subsection of football violence loving fans and what has this to do with a cancer blog right? Bear with me... ...Is still not a thingSo, I am a bit late with this update and although not much has changed after the Welsh elections as of yet I am confident waves are being made. In April, I think the noise we managed to make (Thank you to everybody that pressured their political representatives) was a big one and the lack of cancer plan in Wales gathered some attention in the newspapers! I feel like I need to shout and draw attention to the issues on the battlefield I am currently dying on (A political analogy, not a cancer one!) , but I do tend to go into a slightly quiet mode for a few weeks after, it's a bit uncomfortable having your personal life sprawled about, open to scrutiny, but if it helps, it helps right?
We were quite lucky enough to make the front page of our local paper. It you gotta give them your story to get across the overall message then I think it's worth it.
If you would like to have a read check out the Mirror or Wales online Nick being brave and speaking up from a partners perspective.I was invited to discuss some of the issues around SBC diagnosisSo a few weeks ago, I was invited to talk on an international podcast called 'Your Killer Life'. If you can get past the excessive giggling (I was nervous), then I think it is a great summary of where the failures lye, when it comes to making secondary cancer chronic. But it is not as 'heavy' a listen as you would think. Please pop it on in the background and give it a listen . I'd be curious what you think? I hope I made some important points clear enough and i'm happy to elaborate on anything if need be. Its on Spotify - https://open.spotify.com/episode/3L1nL3QzfQzMCq4gRz0cLP... The website - https://podcasts.bcast.fm/e/xnvp165n Youtube - https://youtu.be/Okl2M9JwF44  Wales is falling behind...If none of this makes sense, please read the original post.
Can I just first say a massive thank you to everyone that has emailed members of the cross party group for Cancer (CPGC). My social media inbox's have been overwhelmed from people wanting to help. If I did not manage to get back to you then apologies, - this would have been because I had already gotten a reply from the Government/ Cancer groups and was busy working through their sent attachments. Now without further adieu lets get into what happened in the last 24 hours. 1) David Rees MS got back to me on Twitter and assured me they had meeting minutes for a more recent meeting with the CPGC. It had just not been updated on their website yet. 2) I have been seeking advice on the Welsh health system/ politics from a lovely chap called Andy, and he works for Cancer Research UK. He sent me the report from an inquiry into cancer waiting times when the CPGC met in November 2020. What is relevant here is the fact this report calls for the need of a new cancer strategy... He also let me know the last CPGC meeting took place last Tuesday and now the Senedd has gone into a 'pre-election' period, meaning this wont even be looked at again until the elected party has settled in (In May). For clarity and transparency please see my reply below, but for privacy reasons I cannot share Andy's original email. A call for support - where is the cancer strategy?Wales has no concrete cancer strategy as of 22/3/20. Have you heard about it on the news? Don't be daft. We are sick of meetings, audits and wishy washy abstract statements. We have been left on our own, everything from delays to DNRs and guess what? Now the welsh government have given us a huge FU with no cancer plan. The World Health Organisation recommends every nation should have a cancer delivery plan and now we are the only nation in the UK without one. I guess approx 9000 people dying from cancer in Wales EVERY YEAR is undeserving of a concrete plan with accountability. Can we STOP pretending COVID has been causing all these issues? All it has done is expose how fragile our health system really is. If we had a competent government we could have treated COVID and cancer... the fumbling, apathetic, ignorance is getting freaking exhausting. We at least deserve a fucking plan. Total Health featureI am stunned at the lack of urgency in finding new treatments. Cancer Research UK are making around £634 million in a year and they have yet to find an alternative to chemotherapy, which can be barbaric. Breast Cancer Now say they aim to make secondary breast cancer chronic by 2050. That is far too slow, and they are not transparent in their goals or pathway.  |
A ' no holds' page about my life with incurable advanced Breast Cancer, in the hope it will give a realistic, detailed account to other young women going through the unfortunate illness.
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