This post was most recently updated on August 4th, 2020
In May this year I was diagnosed with a very rare cancer called ocular melanoma. This means I have a tumour in my eye, behind my retina. This kind of cancer can spread to the liver, so as well as radiotherapy treatment for the tumour, which involves a hospital stay to have a radioactive plaque stitched to my eyeball, I will need regular liver scans. This post is the result of the reflections that have resulted from me being the recipient of NHS care, rather than the observer I have been for 17 years as a doula. I feel extremely self conscious about writing about myself, but I feel driven to share these thoughts by a passion for improving the patient experience – whatever part of the NHS we need.
I was in an earthquake once. A 7.4 a hundred miles away. It tumbled me out of bed and broke the crockery in the kitchen. Physically I was fine, but I was left shaken and anxious.
Getting a cancer diagnosis is like living through an earthquake. The ground rocks beneath your feet. Your foundations crack wide open and the whole edifice of your life threatens to crumble. It is different for everyone, but when I heard those words “It’s not good news, I’m afraid”, the rumbles and crashes of the earthquake were deafening.
The noisiest earthquake sounds are fear and grief. Fear of the unknown. Fear of dying. Fear of telling the children, fear of pain and suffering. Fear of losing everything I had worked for. Then grief comes rolling in – grief for the future I thought I had, the grief of loss of control, grief for my children and future grandchildren who may never know the feel of my embrace.
When you are diagnosed there is not much you can take in. All I could ask is, “Am I going to die?” I sat in shock for weeks, petrified in both senses of the word, as the ground shook beneath my feet.
But all earthquakes end. When the silence descended I slowly came up for air. I needed to search for what had been buried in the rubble. I went digging. I needed to find information and answers to questions. I needed to understand the waves of emotion that washed over me. I needed to understand my symptoms and the various screening and treatment options available to me. I needed to feel like I wasn’t alone and I needed to feel in safe hands.
After years of supporting pregnant people through sometimes bumpy journeys to birth, I soon realised I was feeling many of the same emotions and had many of the same needs from my caregivers. And sadly, like many pregnant women, I had very little of what I craved.
Firstly, I needed signposts – to people who could support me with with information and emotional support. To places where I could read more in my own time and learn about my options in a language I could understand.
I needed to be able to build a relationship with one point of contact – a clinician who would be there for me; to coordinate my care and to answer my questions and talk me down when I had an anxiety attack. This person would know me by name, not hospital number, and would have the time to get to know my particular fears, concerns and needs. This person would endeavor to make contact with me at important points in my journey to make sure I felt informed, cared for and heard.
To be clear, my hospital are attempting this, with dedicated specialist oncology nurses. Yet sadly just after my diagnosis one of these nurses went off sick and the other only works two days a week. Maternity services recognise the need for relationship-based care too, with specialist mental health midwives and continuity teams being set up in response to the Better Birth report. But this is all too little, too late. Feeling held and loved through a time of emotional upheaval is not just a nice bonus, it can be literally life-saving. It is certainly crucial to creating positive outcomes. We have to stop judging results by the purely physical. My emotional journey and the residual feelings I am left with matter too – they affect my health and healing.
I also needed options – and help to weigh up those options at every point. To treat or not to treat? What kind of screening tests? What kind of treatment? What kind of pain relief? I needed the pros and cons of it all and to feel that everyone cared about making sure I had the time and space to weigh up the benefits and the risks. Most importantly, I needed everyone to remind me that these decisions were mine alone and that, once I had fully digested the facts, my instinct would help me decide. If you’re a birthworker, doesn’t all this sound a tad familiar?
I needed statistics – success rates and the what ifs. I needed to hear them in terms of the absolute chance of something happening, not relative risk. I needed to hear numbers that refer to me as an individual, not for everyone with my kind of cancer. Hearing that 50% of people with ocular melanoma suffer from metastasis to the liver and that there is currently not much that can be done to treat secondary liver cancer is absolutely terrifying. To date I still have not had the opportunity to talk this statistic through with a doctor. Is this statistic skewed by people with much larger tumours than mine, that weren’t found as early? Does it include people whose cancer had already spread at diagnosis? Or do I have to spend the rest of my life wondering which way my coin will fall?
Again, doesn’t this sound familiar? Do women with GD or high BMI need only to hear numbers out of context or do they need to be treated like an individual? A pregnant person who is keeping her sugars under control and growing a baby of normal size needs to hear about her individual circumstances, not that she MUST be induced because “that’s what we do here”. Likewise, a fit and healthy person of size may well not have the risk factors or the co-morbidities of someone with the same BMI. Yet she is still put in the ‘no waterbirth, no homebirth’ category.
I needed (and still need) to feel heard. What does that mean? It means that when I talk to a doctor I don’t come away feeling like my job was just to listen. I want to feel as though they are genuinely curious to find out what is important to me. I need to feel they are interested in how I’m feeling and what information (however silly) I need to help slow the ever creeping tide of anxiety. I want them to notice if I’m drowning and to reach out a hand for me to hold. I need to feel validated, accepted and valued. I yearn for someone to ask me what I need to feel safe. This is not just important in cancer care. The evidence that this kind of care keeps mothers and babies safer is overwhelming, yet the day to to day reality is that too many people are just not receiving this.
I needed gentle hands. Hands touching my body is not just a job to be done with efficiency and speed. When you are scared and in pain it needs to start with a human connection, an introduction, an asking for permission, an explanation of what is going to happen and why. Touch needs to be slow, gentle but confident. There needs to be a pause before each new action and a checking in to make sure the patient is OK. Touch tender spots with tender hands. You are tending and befriending with every touch and interaction.
I needed talk about health as well as pathology. The FEAR of what is wrong or what might be wrong grows and replicates like a virus. It infects every corner of your being. With cancer and with birth, we don’t need our caregivers to be infected. It is fear that gives us the 3Fs – fight, flight or freeze – and I don’t want my doctors to be inconvenienced by any of those demons! I want them to balance their laudable aims to beat my pathology with some attention to what we can do to focus on my health and wellbeing. It would have been so great to have had a conversation about what I could be doing to help myself. Apart from a fleeting comment about positive thinking from my consultant, I have had no information about diet, exercise or complementary therapies from the NHS. All my information has come from cancer charities.
Again, sound familiar? As well as focusing on what may be worrying about this mother or baby, what a difference it would be if parents could be supported to take more control of the things they can do to stay healthy and birth normally, even with risk factors?
I needed useful information about what is normal and what to watch out for. It’s about making me feel like I am an important partner in my own care. Understanding common symptoms and what might be worrying not only helps keep me safe but minimizes anxiety. It also saves NHS resources by ensuring patients check in before worrying symptoms become possibly dangerous. It also has an enormous impact on mental health. Cancer, like pregnancy, can make every bodily sensation something to worry about – thoughts can spiral out of control, so information and someone to easily check in with can really take the sting out of the anxiety-demon.
I needed consistency. Conflicting advice is more than just confusing. It undermines our faith in the system. And people who don’t trust the system may end up not engaging with said system. And that can cost lives. I also need everyone to stop treating me like a little girl whose Daddy is going to tell her what to do. No, the doctors don’t decide what is going to happen. I do. This is my body and my tumour. I made the damn thing and it’s mine to do with as I want. To be fair, my consultant was very much of that opinion. It’s everyone else that kowtows too much – the nurses and health care assistants and administrators – too many comments like ‘the doctors will decide and the doctors will tell you what’s happening’. I don’t need to feel told off, or that I’m somehow a difficult customer, when I ask questions. These paternalistic attitudes are not helpful and do nothing to create informed, empowered patients. But perhaps that’s exactly what they don’t want. It’s so much easier, isn’t it, if we sit on our conveyor belt, asking no questions and just looking grateful….
I needed smooth and efficient admin and appointment booking systems. I needed departments and staff to talk to each and efficiently share information about me so that my care was seamless and I didn’t have to explain the same things over and over. It feels to me that we need to pay as much attention to this side of the NHS as we do to the clinical side. Appointments are often cancelled or postponed or two appointments made on the same day, but hours apart. When people live a long way from the hospital and are heavily pregnant or feeling ill and made to hang around in hospital corridors for hours, it has a detrimental effect. It causes stress and anxiety. And these feelings are not ones that promote health and healing. I also didn’t need to be gaslighted, emotionally manipulated or made to feeling like an hysterical woman when I question something that shouldn’t have happened.
I needed more understanding of how and why my social support and companionship is so important. Visitors and companions in hospital are not just nice, fluffy extras. I have been hanging around hospitals for 17 years as a doula, but even for me, being in hospital was absolutely terrifying. I wanted my husband by my side, to stay with me until I went for my operation, and to be there as soon as I came out of theatre. This was not allowed due to covid-19 restrictions. I needed my distress at this to be recognised and validated and other things put in place to minimise my upset. Perhaps I could have been met at the door by ‘my’ nurse, to explain how everything was going to work and who promised to stay with me and be my companion through the whole experience. Instead I was put in a room, my husband was allowed to stay for a few minutes and then I was alone, not knowing what was going to happen and when. This is happening to pregnant people every day – alone and lonely on antenatal wards awaiting induction. They have questions with no one to answer them and fears with no one to salve them.
I needed warm support in the aftermath. Post-operative anxiety and depression is a thing. Just as postpartum depression and anxiety is. When we are discharged and left to fend for ourselves for weeks it feels lonely. There are questions, so many questions! So many of them feel silly but they still perch on your shoulder and tap you on the forehead repeatedly at 3am. Just as we need mother-support groups we need cancer support groups – in real life and online – for the questions and the discharging of those feelings of panic, worry, confusion and the sharing of the moments of elation.
I had my tumour treated with ruthless efficiency in the midst of covid-19. I realise I have much to be grateful for and despite drawing all these comparisons with maternity care, here’s where the parallels end. I want my tumour to die. I don’t want to take it home with me and I don’t love it. It’s name is The Fucker, because I hate it and all it stands for. Unlike labour and birth, after my time in hospital I now have to wait until the end of October to find out if the treatment has been successful. I have to carry this uncertainty and fear of the unknown for weeks while I try to continue with normal life. It stinks and it’s no one’s fault. But one health professional acknowledging how torturous this is would go some way to comfort me through the pain of waiting.
You may feel that my timing is a bit off; criticizing the health service at a time of global pandemic. You might be muttering stuff about ‘first world problems’ under your breath. I wouldn’t blame you, I realise how lucky I am – my heart breaks for those whose cancer treatment was paused during lockdown, for example, and I just can’t imagine needing urgent medical care in the midst of war or in countries that do not have adequate medical help available. But here’s the thing: I love our NHS and I know it can do better. This is important. When we treat our citizens with compassion and respect, in a spirit of partnership, tailor-making the care to the individual, money and resources are saved.
At the end of the day, I needed my tumour dealing with in the same way as a baby – with compassion, care, continuity and tip top communication skills. Strangely enough for something that affects my sight, in many ways it feels like my vision has never been clearer. It’s time to wake up to the fact that our healthcare system is often not about health at all, but about sticking a plaster on pathology. Holistic care that sees the whole person and where they fit into their wider family and social circles is rare. As a lifelong socialist and supporter of the NHS I feel sick that I had to resort to paying for a screening test the NHS refused to give me, despite a mass of evidence that it is the best form of surveillance for liver metastasis. But I could put up with lack of resources if instead I received honesty, transparency, kindness and compassion, empathy and understanding from staff trained to listen.
With huge gratitude to Ocumel UK who have provided me with such wonderful support
I welcome comments and would love to hear your thoughts on NHS care and how it made you feel. Please feel free to comment below. And if you agree with any of the points I’ve made in this post, please share it – on social media or with your Maternity Voices Partnership committee, or with your oncology department. Let’s have a conversation about the importance of psychosocial support and informed decision making.