The irreparable damage of cancer

Pancreatic cancer – an evil disease which has ripped the heart and soul out of my family. It robbed my mum of her life, and it bereaved my dad and I of our most precious person in the whole world. During the difficult days, of which there are many, I have to remind myself that my mum is now at peace, free from the pain and torment that cancer inflicted upon her. But before long, I am reminded of what that cancer has, and continues to do, to my family, even now… some twelve months since my darling mum died.

I haven’t been in the right frame of mind to speak publicly about some of my experiences and thoughts, hence why I have been far quieter than usual this year. However, I now feel it is time to make a start, and I’ve been aided by the Cochrane UK’s Contemplating Cancer series, which is running throughout November, and in particular, an article wrote by the wonderful Sally Crowe, on cancer and post-traumatic stress.

It’s a particularly challenging time at the moment, as we approach the first anniversary of my mum’s death, on 16th November 2020. It’s still difficult to comprehend how we went from our gorgeous family of three – mum, dad and I, on Saturday 16th November, to waking up the morning after, with the frightening realisation that there are just two pieces of our family puzzle left. Our lives changed immeasurably – and not for the better. You see, cancer has destroyed what we had. Yes, the love is still there, the memories are still fresh, and I’m so grateful for them… but they will never be enough. Every day is now cast with an overwhelming shadow of sadness. My grieving dad, who turned 77 today, sits next to mum’s ashes and photograph, sobbing as he talks to her, and asks her to come for him. It just breaks me, over and over again. For me, there hasn’t been a night gone by where my mum isn’t in my dreams. In one sense, I look forward to going to sleep, because more often than not, it’s like she has never left – until I wake up, and the realisation hits you once more. Sadly, they’re not always the nice dreams where we’re together, and happy. They are nightmares. There are usually two scenarios – either mum hasn’t died, and I’m doing everything I can to keep her alive; or she has somehow been resurrected and I’m then trying to stop her from dying again. I find myself wandering around different hospitals, fighting for ‘them’ not to push her to one side, begging for help – much of a reflection on what happened in reality, to then watch her die all over again. I feel myself crying and screaming in my nightmare, to then wake up also in the same state, exhausted and broken, all over again. This is the irreparable damage of cancer, and life will never quite be the same again.

With grief comes a whole raft of emotions, including guilt and anger. Even though I tried everything I could in my power to keep her alive, I couldn’t – and the guilt of that rests heavily. What if… two short words which replay over and over again, as they eat away at you. What if I had complained earlier… What if I had been more forceful with healthcare professionals… What if she had surgery earlier… The list goes on. Then, there’s the anger – the anger with professionals, protocols and systems which played their part in my mum’s premature death, and also the way in which we were ‘dealt’ with – with my mum as the patient, my dad as her husband, and myself as her son. The more one thinks about events as they happened over time, the more intense the feelings are. Last week, Charlotte Squires published this article about communication between patients and healthcare professionals, where she raised many valid points, from her experience as a doctor, but also someone living with advanced Hodgkin Lymphoma. Nobody can ‘get it right’ all of the time, but in the words of one of my favourite poets, Maya Angelou, “people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

There were a number of special people who were absolutely marvellous with mum, and made her feel reassured, and cared for. In particular, there were a number of district nurses who almost became part of the family over a period of months. They were the ones who would wave and say hello to me in our local supermarket when I had nipped out to get some groceries… the ones who came in, sat down, and chatted with us, instead of instantly sticking their heads in the paperwork… the ones who wouldn’t leave until what they had come to do had been done, and done properly. That is, in my opinion, the qualities underpinning a good healthcare professional. Sadly, the good experiences are often clouded by the bad ones, and wow, I could not have imagined the extent to which they would accumulate after mum was diagnosed with cancer. There are so many, that I could probably give Adam Kay a run for his money – diaries of a patient and carer. I’m sure that would ruffle a few feathers.

Let me clearly point out that I adore our National Health Service, and what it stands for, and I am thankful for the millions of people who work within the National Health Service too because they care and want to make a difference. But it would be dishonest of me to say that everything is perfect – because it is far from that. From my experiences, the system is no longer fit for purpose. Processes, supposedly in place to improve efficiency and protect patient safety, seemingly result in more issues than there were in the first place. And sadly, there are a small minority of individuals who seemingly are in the wrong profession – because kindness from one human being to another costs absolutely nothing.

For it is the hurtful, abrupt, and callous words and actions which are remembered, and often haunt patients and their families long after their interactions. Take, for example, the night before my mum passed away, when I asked the nurses who arrived to help me re-position mum on the bed with a slide sheet. The look on her face was enough – as were the huffs, and puffs, and the ‘I’m not happy about this’ remarks. I wasn’t asking them to do it alone – that is what I was there for too. She went onto remark ‘it’s not ideal having her here… we’ve got to protect our own backs you know’ – referring to my single bed, against the wall, where she had collapsed onto into a semi-conscious state in the days prior to her death… not out of choice, but because that’s life, and that is what happens sometimes. At the end of the day, it was what it was – and I didn’t give two hoots to be frank… I just wanted my mum to be comfortable and safe in what were her last moments on Earth. God knows why, but I kept apologising to them – grateful for them being here, but at the same time, ready to tell them to leave. They went shortly after, I closed the door, and then cried against the back of the front door. Just by their attitude, they had made an already horrendous day even worse.

Another, unfortunately memorable occasion was when mum went for a routine appointment with gastroenterology for her existing conditions. Like always, I went with mum, armed with all of the letters and information about what had been happening since mum was diagnosed with pancreatic cancer – because as predicted, this team were completely unaware that she had even been diagnosed with cancer (no surprises there, but the topic of a single electronic health record and communication within the NHS is a whole separate post). What then happened in that appointment blew me away – leaving mum in tears, and at the point where I said ‘come on mum’, and left the consultation room. He had decided to discharge mum from clinic – because in his words, ‘the only reason they used to see mum and routinely scan her liver was to check for tumours. Unfortunately, she had now been diagnosed with pancreatic cancer, and because she’s difficult to treat, there wasn’t much that could be done.’ His closing remarks were the final straw: ‘Why would be bother to look for something that we can’t fix?’ I mean, this was a blow. At this point, mum’s tumour in her pancreas was operable, and there were no metastases. She left than appointment feeling uncared for, as though she was a burden on the NHS, and worried that ‘there was something else’.

Although I could go on, my last example upsets and worries me the most. It was our first visit to the specialist cancer hospital, after being referred from the surgical team at another hospital. After hours in the waiting room, I reversed the wheelchair into this poky, windowless consultation room. These moments are so vivid, that I can still see every single thing that was in that room. We sat, and we sat. Waiting for… well, we didn’t quite know what we were waiting for. Some 90 minutes later, the consultant pops her head in, says hello, and then said the nurse consultant would go through the plan. At this point, we still hadn’t been told what stage the cancer was at, what all of the options were, and what was most important to mum – you know, that kind of important stuff which should underpin shared decision making? The nurse consultant then went onto say that mum would be looking only at palliative chemotherapy. As soon as the P word was mentioned, shivers went down my spine, as mum looked towards me. I could see the fear in her eyes, and it terrified me. Mum just couldn’t speak, so I had to speak up and question this, since we were under the impression that it was caught incidentally and thus early, and was in fact resectable. She went on to say that mum was deemed ‘too high risk’ for surgery and any of the more potent chemotherapies, and so palliative treatment was all that mum would be allowed to have. As tears felt down mum’s face, a stash of leaflets were slid over the desk towards mum, followed by a consent form. We were both so upset, and I couldn’t even find the words to say ‘And what the hell is this?’ She said they wanted mum to join an observational study which would require additional blood tests at each clinic visit. The patient information leaflet was included in the stash of leaflets, which mum could read later if she wished. Mum, being the person she was, just picked the pen up and started signing – unaware of how unethical this was. As a researcher, you do NOT do this, and I had to make that point clear… not that it made any difference. Mum left, feeling as though they didn’t think she was ‘worth saving’, but that they’d get what useful information they could out of her while she was still alive. There are no words.

I have so much more to say, and in time, I will make sure it is all heard loud and clear. Sadly, none of it is going to bring my beautiful mum back – but I hope it can stop the same happening to others. As I have taken part in the #ContemplatingCancer tweet chat this evening, what I’ve seen over and over again is the lasting impact that words and actions can have on those with cancer, as well as the families and carers doing everything they can for their loved ones. Never, ever, underestimate the power of your words and actions – sometimes, we can’t change the future, but a supportive and caring hand can make all the difference.

Written by Simon R. Stones

Simon R. Stones BSc (Hons) MMRS is a multi-award-winning patient advocate, consultant, researcher, and writer from Manchester in the United Kingdom. He is recognised as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with a variety of health conditions, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his late mum. He is currently an Associate Fellow of the Royal Commonwealth Society and a trustee of RAiISE. He is the former President of the European Network of Fibromyalgia Associations (ENFA).

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