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Rebecca Langley 2 July 2021

The real effects of CPR

My DNACPR is not a wish to die but a wish not to suffer
Guest post Do not resuscitate (DNR)

Today’s guest post comes from Rebecca who believes that we need to be able to talk about death and dying, and be able to write down our wishes, regardless of what they are.

We are not very good at talking about death and dying as a society. I often get some raised eyebrows in response to my expressing my wishes for end of life care, and Advance Directive paperwork. But for me it’s almost become normal, something that I have felt much more at ease about since writing down my wishes.

At the age of 30 I was diagnosed with stage 3 bowel cancer, a diagnosis nobody wants to hear. Unfortunately for me, my ordeal didn’t stop there. After major surgery to remove my colon and four tumours, leaving me with a permanent ileostomy, I returned to hospital six weeks later for adjuvant chemotherapy. This of course brought with it huge anxiety of the side effects I would experience for the next six months. I went into the first session as optimistic as possible, but fully aware of how tough it was likely to be.

After returning home from the first cycle, I remember feeling ‘not quite right’ that evening and assumed it was just my body’s reaction to the chemo. I went to bed, and my sister slept on my floor as she was aware that I was deteriorating. After a bad night, she phoned the ‘Chemotherapy Hotline’ and they advised her to call an ambulance.

As the paramedics arrived, I had my first drug-induced seizure and was taken into A&E. That evening I was moved to the oncology ward, before a second seizure the next morning. This was followed by a series of four cardiac arrests.

My mum received a phone call telling her that she should get to the hospital as quickly as possible, and she ran to find me being pushed by the duty crash team towards the Intensive Care Unit, where they worked to stabilise my heart rhythm and then, put me into an induced coma. The rest of my immediate family made their way to that relatives’ room, not knowing if I would survive.

I was woken from the sedation three days later, surrounded by my family, completely unaware of everything that had happened. My memory of the last few months had been wiped, I couldn’t even remember my cancer diagnosis or why I had a stoma and bag.

It took a few days for me to become more aware of what had happened, the rib pain from chest compressions was a physical reminder of that, but I couldn’t conceive of what had happened!

After a week in Intensive Care and High Dependency Unit, I was moved to the cardiology ward where I started the long and painful journey to recovery.

When I was in ICU I weighed 42 kg and couldn’t stand up without crippling pain and the assistance of physios. I had been crushed mentally and physically. After everything I had been through with my cancer diagnosis and surgery, I had to start all over again.

Four years on I am in a much better place, I am fitter and stronger than ever, and I have returned to work part-time. But it’s not been easy!

My recovery has been traumatic for me, and for those who have supported me. I am still in pain, and have to be careful not to overdo things. Mentally I am exhausted, I have had a huge amount of psychological help and I know that I will need more on the future.

My scars are all invisible: my stoma, my fractures (ribs, sternum and three vertebrae from chest compressions), and my PTSD. It is hard to explain this to anybody.

About a year after ICU I asked my GP for a DNACPR. I then later found out about having a ReSPECT form, and Advance Decision, both of which I now have. My family and friends know about my wishes not to be resuscitated, or “have any care that would extend my life without quality of life”. I may live until I’m 40, and I may live until I’m 80. None of us knows. What is important to me is that I die peacefully. My paperwork is not a wish to die but a wish to not suffer. I feel comforted knowing that there won’t be a discussion at a highly stressful time, were anything to happen to me prematurely.

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