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How it all began – 8 years of #BloodyCancer


If you’ve been reading my posts so far, thank you! I decided to do a blog once I had been told that I’d be starting treatment for the Leukaemia I have been living with for 8 years, but you might be confused and rightly so, because who waits for 8 years to have treatment for cancer?! Well, those like me, who have CLL (Chronic Lymphocytic Leukaemia).


Let me take you back to when this all began in 2014… That year, Valentine’s Day, was my 50th birthday and I had an amazing night out to celebrate and an early flight to Melbourne, Australia the next day to run a relationship skills programme for a global client. I was the fittest I’d been for years and the slimmest too – life was really good and a few months before I’d moved to my dream home in Wales. My work life, social life and life in general were fabulous and I didn’t let a minute of my life go to waste. However, around Easter that fateful year, I had to slow down and really couldn’t understand why. I felt so fatigued and lacked the usual high energy which characterised me. I thought that I had picked up a virus from all my travels (after Oz, I’d been to Latin America and several European cities too, only touching down in the UK for weekends). I booked an appointment with my GP on one of the rare weekdays I was in the country and expected to be told I’d got a virus or bug and be sent on my way with medication.


However, my GP decided to rule in and rule out a number of possible diagnoses by running some blood tests and, after a couple of days, I was summoned to see a Haematology Consultant at the nearest hospital (which meant crossing the border to England). In preparation for the consultation, I had more bloods taken and settled back into the waiting room, completely ignorant of what I would be hearing just 10 minutes later.


My name was called and I sauntered into the consultant’s office, expecting to see a doctor only, but sitting at the desk with her was a Macmillan nurse and straight away, without a word being uttered, I knew – it was cancer. I was very calm and steadied myself to be able to listen actively to all I was about to be told, but the quivering voice and sympathetic eyes of the consultant gave away the game – this was not good news!


Although I was determined to listen, remember and ask intelligent questions, I realise that I didn’t manage to do this terribly well. I heard snippets like “chronic,” “slow progression” and “incurable.” I also gathered that they were concerned about me being there alone and having a long drive home – “did I want to call someone to collect me?” they asked. In the style which was to continue for the next few years, I confidently stated that ‘I would be absolutely fine’ – fine being the word which I would use every time people asked me how I was.


You see, you can live and feel relatively ‘fine’ with CLL for a while. I came to learn that CLL is most often diagnosed in men in their late 60’s and early 70’s – great, I had an old man’s cancer! Whilst it’s not curable, treatment is avoided for as long as possible as it is brutal and so you must reach the point in the disease when the symptoms are so bad that it merits intervention. Many people who are diagnosed in their 70’s die with, rather than from, CLL; but that’s because of their age and I was only 50 so knew that there would be a point where the cancer progressed and took me from the ‘active monitoring’ stage to the next phase which would require chemotherapy.


For the best part of 7 years, I limped on; living with increasing fatigue and progressing from sporadic and mild to severe and constant pain. I had to avoid contracting any infection as my immune system was so compromised and I took an increasing number of drugs to enable me to function and continue to work. I lived for almost 6 years trying to ignore the fact that I had cancer, powering through to continue to work and travel, maintain a social life and campaign for the causes which are important to me. I was open about my illness to everyone and would find myself explaining time and time again why I wasn’t being offered treatment – it was obvious that having cancer, but no treatment, caused most people significant cognitive dissonance.


Staying in a state of resigned denial worked for me until early 2020 when the pandemic took hold and my immunosuppression meant that I was assigned a label – CEV (Clinically Extremely Vulnerable) and so, on March 8th of that fateful year, I entered a period of what, in the UK, was called ‘shielding’. In essence, I was to have no physical contact with anyone, not leave my home (at the time this included not even being allowed to take the recycling boxes to the top of the lane!) and to use anti-bacterial spray to clean anything which entered my home. The Government provided weekly food parcels, and, like the rest of the world, my life was turned upside down. Work was cancelled and I, like everyone else, scrambled to find ways to continue to earn an income, pivoting from face-to-face meetings to virtual ones. The next 18 months were tough; not only was I trying desperately to earn enough to pay the bills, but I also had the added pressure of shielding. This was slightly easier when the lockdowns were in place, but more challenging when others regained their freedoms and I was stuck at home, only being able to venture out for medical appointments.


And so, it was, after more than 2 years of continuous shielding, that my health took a turn for the worse. Despite having no contact with anyone other than health care staff, I was getting repeated infections which required immediate antibiotics, I had two episodes of trigeminal neuralgia (they call it the suicide condition due to the severe and unrelenting pain) and my body was covered with bad bruising. My relationship broke down and my long-term partner moved out (a mutual decision due to the very restricted lifestyle I had to lead) and my business slowly declined. I was gradually reaching rock bottom health-wise, but also emotionally and mentally – I knew that my blood test results were pointing to the need for intervention and this was confirmed in July 2022 by my Haematology Consultant.


Once I had been informed that my chemotherapy would commence I had mixed emotions; relief that they would begin treating me finally, but also anxiety because I knew that the 12 month treatment process would be, according to my CNS (Clinical Nurse Specialist) both ‘brutal and aggressive’. However, as you will know from my blog posts prior to this one, I am determined to face this challenge with positivity and gratitude. CLL is a strange cancer for many reasons and, whilst there is no ‘good’ cancer, I am fortunate that I had a few years of being as active as I could, and I hope I made the most of it! Now I have no choice but to cope with the disabling symptoms and additional side effects of the chemotherapy and so have had to accept the limitations to my life with resignation. However, I may be down, but certainly not out and I am determined to make the best of this next chapter of my life, so watch this space…..!


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About Me

Angela.jpg

Hi, I'm Angela, also known as 'Space Angel ‘, on Twitter and 'Snakey' to my family (both monikers require a long story to explain!). I'm 58 and the proud mum of Charlie, my 26-year-old son. I live alone in my cottage in Llanrhaeadr Ym Mochnant, a beautiful village in the Tanat Valley in North Wales, and the location of the tallest waterfall in Wales.

#BLOODYCANCER

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