EDIT: this post is not about issues with the NHS…I LOVE the NHS. It is sadly at a crisis point but the staff, despite this, have always provided me with exceptional care and for that I am very grateful. This post is about something entirely different. It is about a very personal view I have on whether or not to have treatment in the future. This view wasn’t brought on by recent events but was, as many of you know, also documented in my book. I always said I would have treatment once and never again. I have received many hurtful replies to this post that have upset me deeply. I hope the intention of the post is no longer misunderstood. With love xxx
Since I was discharged from hospital a couple of days ago I’ve been think and I’ve come to a firm conclusion…I’m done…let me explain.
When I went into hospital on Friday 29th December I had a bit of chest pain. I wouldn’t even say it was significant chest pain. It was just there. All.The.Freaking.Time. Instinct, however, took over, as it so often does for me, and I found myself heading to a&e. After several hiccups, including my notes being lost and the staff thinking I’d already been seen, I was eventually seen.
When I was seen the Dr’s main concern was my heart. An ECG (heart trace) was done – all fine. Blood pressure checked – low. Pulse checked – high. And then they listened to my chest and everything changed.
‘Your breathing capacity on your right side is reduced,’ came the worried response of the Dr caring for me. ‘We are sending you for a chest X-ray.’
So, off I went like an obedient child. I was taken on the hospital bed because, despite the fact I had run and done yoga that morning, someone with a reduced lung capacity isn’t expected to be able to walk. Someone….not me.
Moments later I was told that I had fluid on my right lung.
‘No, no, no,’ I tried to explain. ‘That’s just scar tissue. It was there at my last CT scan. It’s totally fine.’
The Drs exchanged a look. ‘Would you like to see your X-ray?’ They asked.
I wondered over with them to look at their computer.
‘Oh, fuck,’ I whispered as I gazed at the screen. Staring back at me was an image of my chest; 2.5litres of fluid nestled beneath my right lung and pushing it up under my collarbone.
‘So, it’s not the scar tissue you saw.’ My dark sense of humour reemerging.
‘No,’ replied the Dr. ‘It’s fluid. A lot of it.’
They explained that they needed to admit me. That I needed more tests and a chest drain.
‘You’ll be in for a while.’ They explained. So, my husband left to get some sleep in preparation for what lay ahead (it was now 1am) and I lay on a hospital trolley in A&E until about 3am. I was then taken to the admissions ward. It was mayhem.
The ward was so overrun with patients that many were sleeping in the corridor in chairs. Seriously! The staff were clearly overwhelmed by the situation. It was heartbreaking to see, not just for the patients, but for the staff. How are they expected to provide a standard of care in these situations?
My trolley was wheeled to the back of the ward and I was left in the corridor. No one told me what was happening. I wasn’t introduced to any staff. I was just left.
‘Fuck this.’ I thought.
I got off my trolley and went over to a staff member and introduced myself. I asked what was happening.
They started to apologise, telling me that the ward had been like this for over a week.
Over a week?! Seriously, how are staff meant to provide care in these circumstances? I took their hand and told them not to apologise because it wasn’t their fault. They brought me water and fruit. A human connection had been made in the chaos of the night. I wonder how many other patients had told them that it wasn’t their fault…
A few hours later a Dr came and took blood tests. They didn’t ask if I wanted blood tests. It was procedure.
‘What are you testing for?’ I asked, although no longer caring as I hadn’t slept for over 36 hours.
After a while I was taken to another ward, respiratory. Things were quieter here and I was given a bed in a bay.
Everyone around me clearly was very unwell with flu symptoms. I asked the nurse if they all had flu. ‘Yes,’ she replied.
I explained that I don’t have a spleen (and therefore a compromised immune system) and what precautions I could take. Moments later I was moved to a side room and advised not to leave it until my discharge. From that moment I was surrounded by four walls, my only solace a window that looked onto a corridor. There was no greenery in sight and I could barely see the sky. This wasn’t a room for providing care or promoting healing….this was a prison. Was I being punished?
Over the following few days I underwent many more procedures. In fact, in less than a week I had:
- 5 chest X-rays
- 2 blood tests (which took 7 attempts)
- 1 cannula
- 1 CT scan
- 3 doses of morphine
- A needle inserted into my chest cavity through my ribs to take a fluid sample (several attempts)…which led to air on my lung
- 1 chest drain (several attempts)
- 2.5 litres of fluid drained from the space around my right lung
- Anti sickness tablets
- Countless blood pressure checks (through the night, preventing sleep)
I was cared for my three consultants, one surgeon, countless nurses and health care assistants and junior Drs.
I stayed in four different wards.
I slept in five different hospital beds.
I, no doubt, cost the NHS £100s, if not £1000s.
And, whilst my care was exceptional and I love and respect each and every wonderful person who cared for me during this time. I am still done.
I am done with being medically treated as a condition not a person.
I am done with tests.
I am done with interventions.
I am done with ‘the standard procedure’.
I am done with the unanswered questions.
I am done with the needles.
I am done with the scans.
I am done with the X-rays.
I am done with not sleeping during the night.
I am done with getting lost in the system.
I am done with hospital food (or lack of it).
I am done with exposing myself to hospital acquired infections.
I am done with being away from my home.
I am done with being confined to a room and not going outside…for five days!!
I am done with having to tell loved ones that I am unwell.
I am done with loved ones seeing me in hospital.
I’m done with not spending the night beside my husband.
I am done with all of it.
I don’t want any more tests. I don’t want any more queries. I don’t want to be a fucking patient any more and, if it came to it, I wouldn’t want anything more interventions. No chemotherapy, no radiotherapy, no nothing. I. AM. DONE.
I asked one of the people who cared for me this past week what they would do in my situation. What they would do if, worst case, they were told next week (when I get my results) that they had a cancer recurrance. Would they have treatment? Knowing that it would only extend their life by a matter of months, at the expense of any level of quality of life. Or would they turn it down? Embracing a potent
‘I really can’t answer that.’ They replied, with the most honesty I’ve ever had to that answer. ‘No one can answer that unless they were in your exact situation.’
And that’s the reality. None of us know what decision we would make until we are faced with any given scenario. I didn’t know that I would have a positive attitude when faced with stage four cancer, but I do. I didn’t know that I would love my body more after the addition of my colostomy bag and all of my scars, but I do.
This is my decision now, in the face of potentially life changing news, once again. My decision may change. But today, I am done.
Before I finish this post I’ll tell you what I’m NOT done with; I’m not done with yoga; I’m not done with running; I’m not doing with walks in the woods or on the beach; I’m not done with holidays; I’m not done with adventures; I’m not done with movie nights, cinema dates or theatre trips; I’m not done with weekends away; I’m not done with days out; I’m not done with seeing my friends or playing with the children in my life; I’m not done with time with my family; I’m also not done with my second book!
I wish you all a happy and healthy day.
Love and light, Fi xxx