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cringey reading at times, but I guess we all may experience some of this when we revisit our naiver selves and their outdated state of reality.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...
... I had experienced my spine crumble in real time in 5 places, hit 10/10 pain twice within 12 days, collapsed twice, given weeks prognosis, preparing for death. Then yanked out of that and given hope to live at least a year more. Four weeks later pulled back into the pain of reality through oncology F’ups and losing my ability to walk and put on a course of treatment (Freaking TAXOL!) I have later found out I probably didn’t need to the extent, which was being presented to me, and in turn has now hindered my treatment lines and trial chances (ah, if I knew then what I did now). I spent 2020 between two worlds, I wasn’t exactly sure what was going on, I just knew I now saw myself as disabled for the first time and life was about dealing with pain and accepting death. #Busylivingwithmets era I decided to live life as much as I could within my means from Autumn 2020 and I went from strength to strength. I persevered with the palliative physio, which became restorative – a miracle! I joined MetUp UK, learnt and became inspired by watching some incredible people live their lives regardless. I attended meetings knowing nothing, kept my ears open and slowly gained confidence. I took control and changed oncologist, changed treatment, understood my cancer better and undertook 16 psychotherapy sessions with Maggie's. I gave into my disabilities and worked with them and have tried to live life even more for today. Of course, it has not been easy, but I know I have tried my very best. I have had 31 years on this earth, and nothing can take that away from me. So, what now? Truthfully, it has been a difficult winter. As you may see from my last post, my SBC has mutated and lost its ER+ edge. So, I now must contend with Triple Negative BC which feels like a different diagnosis again! It behaves very different, is harder to treat and more aggressive and known for being predictably unpredictable. Before the horrendous spinal biopsy and their equally cheery results I had started to slip into a little well of despair. My pain and tumour markers were rising steadily from mid-summer, and I drew as much time out of that as I could, but the mental challenge of feeling my body weaken and get sicker was so horrible. “Will I be in 10/10 pain again? if so just kill me now” or “what's the point? I'm going to get worse”, were common thoughts. The biopsies, the decisions, more friend deaths, the uncertainty and the freaking TRAUMA of having more taken away from you, than you thought you even had to give. White waiting room to magnolia waiting room, strange faces as you offer up your body on rotation, the disappointment of having to cancel things you looked forward to, Sepsis over Xmas. I felt like I was slowly sinking and withdrew from the world. So, I am here again, I started writing at 4.40am and its now 06.45am, in this familiar hazy steroid induced insomnia. I’m day 4, cycle 1 on my new chemo Trodelvy (This drug wasn’t available on the NHS this time last year), and I am a good two weeks past clarity. My main aims are quite simple -
Then boom! Clarity.
Whilst checking my dilated pupils in the mirror yesterday, it struck me hard – If I hit 32, I would have lived ¼ of my whole life with this over my head, and the ongoing grapple I have been having over identity suddenly became so clear to me. I think it’s a bit sad really, I’ve realised there is no more ‘me’ and ‘cancer me’, they are the same now. I am still dying, and every month my body is weakening. I am always surprised at how much the mind can bear and stay afloat. I’m going to lose my hair for the 3rd time, why do I still care about this? Why am I still holding the image of Tass from 7 years ago as what I should be like? Don’t most people look and feel different in every ¼ of their life anyway? One belief which has gotten stronger to me over these past few years, and I know I have mentioned it before... But If I had to take a stab at the meaning of life – For me, life is about your relationship to everything and everyone because the very beauty of life is within its subjectivity. How you and I will look at the rain will be different, why? What has life done to us? Get to know yourself and watch yourself grow, find acceptance in yourself and live for the parts of good you put into the world. It’s hard. Try your best. Take time alone, look at the sky, watch the rain on the windows and follow the last light of the sky. Don’t get swept away. Unfortunately, many people may grow up to realise they are almost ‘stuck’ with the friends and family they have now, and you can get sucked into a cruel trick of seeing your relationships as obligations. You wanted them in your life for a reason, has that reason changed? Spend time with people who truly make you grow as person, talk about the real deep stuff and seek out the ones who will be there for you (In a way you are both happy with) and hold onto them with everything. Life really is too short and too special to allow yourself to be wrapped into obligations, egos and commodities. Stop, look around, feel the air, the temp, the sound – that moment will be gone forever but you were there. Maybe I'm being naïve? Or maybe I’m not. But I try to ask myself why I love to be alive a lot of the time, and the answers may change like the weather, but I like to think they add to the ‘little climate of me’. Additionally, it is so important to analyse your ‘little climate’ from time to time, do you like what you see? Would others like to visit to feel better and/or work in harmony with the balance? Or do they come to dominate or watch with morbid curiosity as your ‘little climate’ wobbles under its own finite coping systems. Your actions will control your ‘weather’ as well as what you allow in. Personally, I like to keep my boarders open, let everyone in for a look. I’m not mysterious, far from it. But I try my best to heavily ‘Tax’ to protect my ‘little climate’, it can be paid by those heavy conversations or an awareness for life, laughter? Moments of real connections and trying your best to make the world that little bit better for everyone that lives in it. I will always try to grow for the better, and with my ‘little thoughts and self-insights' I have discovered I am truly happy with who I am, therefore I will die happy. Life really is an absolute miracle, grab it. |
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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