Approximately 1 year ago, on 16 December 2020, I started writing my blogs as I wanted to get my dicing with death experience down on paper before I forgot all the little details and emotions that had made me laugh and cry during my time in hospital. Also, I was very certain that I would be able to announce some goods news in February 2021 – the BIG REVEAL!
I had felt very strongly from the beginning of my diagnosis, that I was going to power my way to good health with a massive amount of positivity. I have always been a very positive person so I felt this was well within my grasp. My pacemaker’s pacing lead had been turned off in September 2020 as my own heart had miraculously started working again which was a major unexpected boost, and something the Specialist had told me would never happen. I was continuing my vegan diet and felt in control of my destiny. I was bullish with my business and hit a big promotion. Life felt good. And then – the BEST news – my summer 2020 scan had shown that the inflammation in my heart and lungs had completely disappeared. This was MAJOR news and I cried with happiness. Even the deadpan and emotionless reaction of my Specialist on our video call couldn’t dent my happiness. I had got used to him by now, and had nearly (not quite) given up on trying to make him like me. Even love me! A people pleaser finds it hard to quit.
I quote verbatim “Joanna, you have no inflammation in your lymph nodes”. Pause. Me – “right, well that’s good”. “Joanna, you have no inflammation in your lungs”. Pause. Me – “right.” “Joanna, you have no inflammation in your heart”. Pause. Longer pause. Me nervously “ok that sounds great?” Is this the bit where he tells me that unfortunately I am completely riddled with inflammation in every other organ? I clarify – “so does that mean I am completely clear now of all inflammation?” “Yes”. Me – “Oh wow! I can’t believe it! You have made me so happy!” Him – “Have I?” That was it. No smiling, no congratulations, nothing. You can clearly see what hard work he was/is. Or why I wouldn’t invite him to a Dinner Party. However, I have a lot to thank him for. He wanted to be absolutely sure the inflammation wouldn’t return before he reduced my medication, so he had said we would review again in January 2021 with another PET scan. Although I felt very frustrated at having to wait another 6 months to start looking and feeling like me again, I had the date of my follow up scan consultation etched in my brain as I was absolutely 100% sure I would still be clear of inflammation and my medication could be reduced and I could start losing weight and not risk any more side effects.
So, I thought the blogs I started in December would record my experiences to date and it would lead nicely up to me getting the all clear in February – the big reveal – and I would continue waltzing into 2021 and celebrate with lots of blogs on ‘How positivity wins every time’, ‘Overcome a shocking diagnosis – with veganisim’, ‘Laugh your way to health’, ’20 ways to jazz up an aubergine’ – and so on, you know the type of thing. I was brimming with ideas!
Unfortunately aubergines would have to wait, as I tested positive for COVID on 30th December. I had dreaded getting it and it was before my first vaccination. I truly thought I was going to die or be put on a ventilator. Apart from the pesky heart and lung issues, I am also asthmatic so I waited for the inevitable decline and …..nothing came. It was a miracle! I was ill for two weeks, but only as far as coughing, sneezing and migraines. Thank you very much someone! I will be forever grateful.
15 days after the COVID diagnosis, I had my long awaited PET scan. And then at the follow up consultation in February, I was absolutely crushed to learn that the inflammation had returned to my heart and lungs. It was very likely the effect of COVID and not the return of Sarcoidosis, but because my Specialist couldn’t be sure, he couldn’t authorise any change in the medication. Plus whatever the inflammation is caused by, it still needs to be controlled. My next PET scan was scheduled for July 2021 and I fell into a slow depression. A slow realisation that I wasn’t very happy. And I loathed looking at myself in the mirror. For work, I was there in body every day, but not in mind. I had totally lost focus, found it very hard to concentrate and felt I was just going through the motions. I also drank too much alcohol (not secretly or for breakfast just to be very clear) but if we were socialising I absolutely caned it. I cried a lot. My friends were very patient on nights out when I got very drunk and insisted that my favourite songs (Blinding Lights and Bad Habits) were virtually played on a loop and then told everyone at length how much I loved them. It was a painful time – for them – and the video evidence they have literally makes my toes curl. Apparently alcohol changes voices – I became not so much Pat Butcher, more Frank Butcher. Frightening! I also started eating crisps, sweets or chocolate – Every. Single. Day. I didn’t want to be a Debbie Downer so I carried on as normal arranging trips away and accepting invitations to some wonderful places. I made sure I had a manicure every two weeks so at least my nails looked nice. I had a lot of fun, and some wonderful memories were made, but all the time, I was waiting for something to change for me so I didn’t embrace every moment as I should have done.