I am inspired to write this blog by Sean Ninan, a fellow Geriatric Medicine Registrar and thoughtful doctor who recently blogged about ‘inappropriate referrals’ to specialty clinics such as the TIA service. Sean made the important point that these referrals are rarely inappropriate at all, but more diagnostically challenging; this challenge should enthuse us specialists as diagnosticians, otherwise we become protocol led technicians not capable of making other diagnoses.
In my first week back at work after sick leave I ended up in an argument with a colleague. We had just seen a young woman on the Stroke Unit with what had been labelled as functional neurological symptoms. As we left her room this colleague said “all that lady needs is a psychiatrist” in a very dismissive manner as though she had wasted our time. I was not impressed by his comment and said so, perhaps given my own recent experiences as a patient I was more sensitive than I should have been. Maybe her MRI scan had been plumb normal, maybe her examination findings were difficult to interpret, maybe she did have lots of psychological overlay but I firmly believe that these patients are exhibiting some form of distress that should be managed with as much compassion as the next patient with an infarct on their scan. I returned to the patient after the ward round and spent 45 minutes talking. She just needed someone to listen.
I overheard a couple of SHOs discussing the acute take the other day on the ward. “It wouldn’t be so bad if we didn’t get all this rubbish referred from A&E.” Hmmm. I know that I have had similar conversations myself in the past, frustrated by a system that forces us to dehumanise the job in order to survive. But now I’m a patient myself I would be horrified to think a doctor was referring to me as “rubbish”. Surely a doctor is a caring professional that puts their patients at the centre of their work, aren’t they? It is a very easy trap to slip into. Every hospital has a cohort of patients that are difficult to manage; the patient who has had 40 admissions with troponin negative chest pain; the patient who presents with recurrent seizures with a label of non-epileptic attack disorder. I cannot help feeling that these patients may have medically unexplained symptoms but these symptoms are still a manifestation of some form of distress, or maybe even represent pathology that we just do not understand or cannot measure yet.
So next time your heart sinks prior to seeing a tricky patient maybe we should ask ourselves ‘how can I help this person?’, which I’m sure was what we all said we wanted to do when we applied to medical school…
Before my terminal cancer diagnosis I was a fairly confident girl. I had a successful career, which I loved and a slightly bossy nature at work. I was very lucky to have met my soulmate relatively early in my life and had slipped into a loving married life very easily. I enjoyed socialising with my friends. I was well supported by a close knit family. I really was very fortunate to have such a stable, normal life. It had not always been easy and I had battled with confidence throughout my teenage years and early twenties. This was in part due to bullying at school and never quite feeling like I fit in at University initially, but once I hit my late twenties I really was starting to feel settled and confident both professionally and personally.
Then in one fail swoop all that confidence that I had gradually built up over several years was taken away when I discovered I had cancer. I felt unexplainably ashamed. I felt guilty. I felt frightened. My sense of ‘me’ was destroyed almost immediately and the wind had been completely knocked out of my sails. I went into hiding, both physically in a side room in hospital and emotionally, choosing to confide in only a few people who were close to me. I remember being so distressed by the thought of the rumour mill working overtime about my illness, not that anyone would be anything other than concerned. I just did not want to be public gossip story number one. The whole situation was not helped by the fact I was an in-patient in a hospital where I had spent two years of my working life. Everytime I was wheeled off for yet another procedure I risked being seen by someone I knew. The thought of having to explain what was happening in these awkward situations quite literally petrified me so much I used to feel physically sick when I had to leave the safety of my side room.
My self confidence was not helped by the fact that the cancer and its treatment mutilated me physically. I ended up with bilateral nephrostomies for over four months, I lost all my hair, eyebrows and eyelashes, the steroids changed the shape of my face, my nails fell off and I developed that sallow skin that ill people have. It was a huge struggle to leave the house to go anywhere other than the hospital during this time. Very few people ever saw me without a hat on. I was definitely not one of those cancer patients who was bald and proud of it. I was still ashamed and still guilty.
My life took an unexpected turn when after deciding to stop chemotherapy and go back to work as I was encouraged by some close friends and colleagues to publish my diary detailing my experiences during diagnosis and treatment. Within a couple of weeks I was selling hundreds of books and making thousands of pounds for charity. This gave me such a boost. People seemed genuinely interested in what I had to say and reading all the lovely, personal messages people had taken the time to write set me on the path to building my self confidence back up from nothing. The press became interested in my story. There were photoshoots, radio interviews and television appearances. At first I was a complete nervous wreck interacting with the media but gradually over time as my confidence has returned I have even started to enjoy it. I don’t even bat an eyelid at appearing on our local regional television news programme now.
Going back to work was good for me. I think although we would not like to admit it, many doctors are defined to some extent by their profession and I was certainly in this category. But again I was so timid setting foot back in the hospital for the first time. Would I be able to function? What would my patients think? These fears have subsided over time especially as my physical appearance has returned to something approaching ‘normal’ and I realised that I still could offer something professionally. I never used to enjoy giving presentations, but the requests to speak at various events locally, regionally and even nationally started to come. I forced myself to engage with these and share my story. As a result I have become desensitised from feeling nervous in these situations and even quite enjoy giving talks now.
So in some ways I am far more confident now than I ever was before my diagnosis. Cancer has changed my life completely and the road from rock bottom to where I am now has been a bumpy one, but I am glad I have managed to stick with it and not let the horrendous situation I find myself in depress or isolate me socially. I am lucky in so many ways to have such a supportive network of wonderful people around me who have all played their part in rebuilding almost my whole sense of ‘me’.
I was sat relaxing in a lovely hot bath last night after a tough day at work looking at my body, which is now scarred to serve as a permanent reminder of the cancer. There are the six recent incisions necessary to insert my new extra-anatomic stents which are still red and only just healed, the two paler core biopsy scars in my left upper quadrant, several holes in my flanks from the multiple nephrostomies and the most visible scar from the removal of my Hickman line. I know it’s silly but I cannot help feeling like damaged goods about to exceed my best-before in the foreseeable future. The wonderful Helen Fawkes, a BBC journalist and ovarian cancer sufferer recently blogged about ‘having an expiration date’. I have been thinking about this a great deal.
The 2nd January was a wonderful date in our family as it marked the arrival of my gorgeous nephew. He is so perfect and I am certainly the doting, proud Aunty. There is however this bittersweet undertone that I am not going to see the little man grow up into the self-assured, intelligent and successful person that I know he is going to be, all because of my damned expiry date. I guess I just have to squeeze as many visits in now for cuddles while I have the opportunity. I have nearly finished making him a book all about my life with lots of photos and stories. This has been an extremely tear jerking exercise but I want him to know a little about his Aunty Kate and have something to remember me by.
The birth of Jacob has also highlighted my infertility. Not that I would ever want to bring a child into this situation and not that I could as I am now a fully blown menopausal woman, but I feel the natural broodiness that most women feel around brand new babies and am no different in that respect. It might sound a little selfish but I would have liked to have a family. This is not something that has particularly distressed me before, but the recent events have made me feel sad and disappointed deep down inside. I am never going to give my parents Grandchildren, but I guess at least my brother has. The disappointments of a limited life expectancy extend into my professional life too. It is unrealistic to think that I will ever make it to be a Consultant now although this has been my ambition since setting out at University all those years ago.
Perhaps my main worry for when I do reach my expiry date is how Chris is going to cope. He is not good at being by himself and I cannot imagine how tough the loneliness in that situation would be. Although he has a supportive family and some brilliant friends I am really concerned about how he will tackle his grief. I’m not sure there is a good or healthy way to grieve properly, but I do worry that Chris’s grief may become self-destructive. I think he will be ‘fine’ initially with all the practicalities that need to be attended to after someone dies to keep him occupied, but it will be later when it hits him, when everyone thinks he has ‘got over it’.
There are some positives though. Knowing that I will not live into old age means I have no worries about developing the conditions my patients have such as dementia or disabling stroke disease. The recent doctor’s pension furore passed me by too – I could not seem to get agitated about something that was not going to affect me. I was sat at lunch recently with a group of Consultants and junior doctors who were bitching about the pension reforms and stopped the conversation in its tracks with “at least you’re going to be able to draw your pension”. Perhaps this was self-centred, but it did seem to make people stop and think. On the upside I am also no longer bound by the monetary ties the future has over us. If I want to go somewhere or do something then I do. I cannot take my money with me so may as well enjoy life now and create lovely memories for everyone else too. The expiry date also forced me into part-time work, which redressed my work-life balance and has really enhanced my quality of life with no more long on-call shifts to work in the hospital.
So having a likely expiry date is a strange place to be aged 31. It clearly has it downsides with emotional turmoil and disappointment, but there is a silver lining too if you look hard enough. I am reminded of a poem:
Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still…
(Canon Henry Scott-Holland)