The blackest of Wednesdays

It was five years ago today, yet I remember nearly every bit of it as though it was yesterday. I can recall his name, his walk or rather his strut, his voice and his manner, perhaps one blessing in disguise is that I can’t remember his face. It’s odd that but I often wonder whether our brains are clever enough to protect us from a lifetime of searching. I can remember how insignificant this young doctor made me feel, how frustrated and unheard, how desperate and futile. He reduced me by his arrogance, his absolute refusal to listen, his lack of humility or awareness, his performance perhaps designed as much to convince himself as anyone else.

Five years ago, Wednesday 5 August 2009 my Dad nearly died. In the end it was another 3 years, 3 months and 10 days until Dad did die, but five years ago today was our nearest miss. I don’t want to focus on the specifics of Dad’s situation because the reason I share it is in the hope that some learning may come of it! However, as context, Dad had been diagnosed with cholangiocarcinoma, bile duct cancer, a very rare cancer in Sept 2007. I’ve written elsewhere on this blog about the amazing treatment Dad received, he was diagnosed in less than two weeks, admitted to our local hospital Torbay, and transferred for specialist treatment inPlymouth, at Derriford, as soon as possible. Dad spent months in Derriford, no exaggeration. He initially had drains fitted to drain off the build up of bile, he then had a 12 hour liver resection op in January 2008 to remove the tumour (we hoped), a month long stay as an inpatient followed with a side order of MRSA. Dad got home and started his first lot of chemo in late Spring 2008, but he quit that early so the blisters on his feet would heal in time for him to walk my little sister down the aisle that summer.

Fast forward to June 2009 and Dad was in pain, it turned out that an abscess had formed under his scar. Immediate surgery followed and he was home being looked after by the District Nurses within a week. No sign of the MRSA, or any tumour activity, relief all round. July 2009 saw the emergence of swine flu, a quick google image search for ‘swine flu newspaper’ produces these gems:

Screenshot 2014-08-06 08.53.49

Remember it? When Dad felt ill again in July, lethargic and generally groggy one of the first things the GP tested for was swine flu, it came back negative. Dad carried on, making no fuss, took a course of antibiotics and that was that, until a few weeks later things got worse and we called the GP first thing that Wednesday. Dad was having rigors (not as scary as they look, extreme shivers, almost like a fit and sweltering temperature), it wasn’t the first time he’d had them but it was often an indicator that something was seriously wrong and he was fighting infection. The GP decided the best place for Dad was hospital and he called to arrange an ambulance. The ambulance crew were brilliant, taking Mum with Dad and I followed on behind in my car. A&E was busy, Dad spent about an hour or so in the corridor before a nurse ran through a checklist of symptoms and directed us to an isolation room. It was sweltering and close and stuffy that day and we were told to wait in this room, the three of us, and not prop the door open. We were so used to Dad being in isolation due to his experiences with MRSA that we didn’t think anything of it. Another hour and a half passed, Dad’s rigors got worse, sweat was dripping off him (and Mum and I weren’t exactly comfortable) and in the end I couldn’t wait any longer, you get to a point where you think you’ve been forgotten (on this occasion I don’t think we had, but you never know) and I couldn’t watch Dad in such discomfort any more, and I could smell that he was toxic.

I’m no medic but there is a certain smell that comes hand in hand with blood poisoning or sepsis, it isn’t pleasant and once you’ve learned what it is, it’s hard to forget. Oh and once you’ve been in a room barely bigger than a bed with someone giving it off, on a very hot day, for over an hour….you definitely can smell it. I headed for the nurses station, pulse racing, feeling clammy and that low level guilt. No-one likes to complain in hospitals, you’re playing russian roulette, what if you make things worse for your loved on, what if someone else needs the staff’s attention more urgently etc etc. Anyway I asked if anyone would be along to see Dad soon and if I could give him a drink (answer no, until he was seen by a doctor but it shouldn’t be too much longer).

Twenty minutes later, Dr Strut (*not his real name) walked in. He was about my age, obviously delighted to introduce himself as a Senior House Officer, not the best bedside manner really. Talked to Dad, ignored Mum (and me, but that would have been ok if he’d acknowledged Mum). Dad at this stage was barely awake,which worried me even more, and Dr Strut just kept directing questions at him. Dad did his best to answer and Mum chipped in, he shot her that wary look (he didn’t, but a roll of the eyes wouldn’t have been out of character). I could see us in his eyes immediately, pushy daughter, neurotic wife and clammy patient who doesn’t seem too bothered either way. Dr Strut deigned to allow Mum to answer for and with Dad, he listened to her explanation of what had happened, cutting her short to ask the questions on his checklist (and yes he actually had a clipboard with it on)….have you felt dizzy? Any difficulty breathing? Temperature? He went on and sure enough lots of Dad’s symptoms were similar to swine flu.

He immediately pronounces that Dad must be taken home, with a course of antibiotics and given TLC. Yup, he actually prescribed ‘TLC – tender loving bloody care’. How rude and how arrogant. What the hell did he think we’d been doing for the last two years? Our tender loving care wasn’t fixing his cancer and it wasn’t going to cure Swine Flu either. At this point I couldn’t stay quiet any longer, ‘Excuse me Dr Strut but Dad has already tested negative for Swine Flu, you can check with the GP, it should be in his notes. I’m really worried that this is something else, he had surgery for an abscess last month. I’m sorry but we can’t take him home like this’.

So what did Dr Strut do? Check Dad’s surgery site, nope. Check his notes, nope. Call the GP, nope. He summoned all his patient skills training, touched me on my arm (not a welcome invasion of personal space at this point I might add) and said ‘With all due respect, your father is an infection risk and he doesn’t need to be here’.

Arrrggggggh, he hadn’t heard me, he didn’t listen. I don’t think I’ve ever really heard the phrase ‘with all due respect’ since without thinking of how readily it’s used as cover for ‘with absolutely no respect I’m right and you’re wrong’. Nothing I’d said had made an impression, he was so intent on getting us out of A&E that I could have been talking to myself. After very disturbed sleep at Mum and Dad’s the night before, a frustrating and ultimately pointless morning, I did what all sleep deprived, un-heard, patronised people would do in that situation and promptly burst into tears.

This flummoxed Dr Strut a little. So he somehow attempts to make it better with ‘I’m sure it must be very difficult for you with your father’s illness, very draining, but I can assure you he doesn’t need to be here’. Again, made it worse, he had no idea how difficult it was or wasn’t for me, he hadn’t engaged with anything I’d said, just rolled off some meaningless assurance, his opinion and what he wanted, us out of there.

He dismissed himself with a cheery ‘Good Day’, told us to collect the prescription on our way out and reiterated the need for the room. At this point I was beaten, Mum was also close to tears, Dad just wanted the fuss over and didn’t want me upset, so Mum asked me to go get my car. I left the room a dishevelled mess and was half way to the car park when my mobile started ringing and it was Mum. I felt sick all over, what now, what had happened. She told me not to worry, not to get the car but to come back. When I got back to the room in A&E, the door was propped open, Mum had a glass of water, Dad was sat up in bed, clammy and ashen looking but smiling for the first time that day. A female doctor was with them, turns out she’d seen me leave in a state and had asked someone at the nurses’s station who was in the room. She’d then taken it upon herself to look at Dad’s notes and pop her head around and ask Mum if everything was ok. Mum had said we were worried but had been told to take Dad home, she said she’d give him the once over to check if that would reassure us.

As I walked in she looked me in the eye, said that she was going to look after Dad and immediately said ‘you were right, I suspect your Dad is septic’. Mum had told her what I’d said. What followed was an hour of the best A&E treatment we could have hoped for. Super doctor checked Dad over, actually looked at him and his belly where the abscess had been and checked his original scar, she ordered bloods and put him on a saline drip. She asked a nurse to bring in another chair so I could sit down for the first time that morning, and when she went out to see another patient, as we were waiting for the bloods to come back, she re-emerged with a fan. This woman was amazing, like a perfect antidote to Dr Strut.

Dad was admitted onto a ward from A&E that day, he was kept in for two weeks of intravenous antibiotics, treating blood poisoning caused by an MRSA infection. As the porter arrived to take Dad to the ward, Dr Amazing graciously accepted our thanks (we must have looked quite manic at this point, no food, little sleep the night before, four hours in A&E, all the anxiety and emotion, and then someone literally saving the day), she said she’d have a word with Dr Strut later and she touched me on my arm (which didn’t in any way feel like an invasion of personal space), looked me in the eye, and said ‘You did what any daughter would have done today, and you must keep doing it. We do our bests but we need people to speak up. Thank you’.

I carried her words with me into every A&E admittance over the three years that followed. Mum and I often reminisced about it, Dad also in his final weeks referenced it a couple of times, as ‘the time I’d have died if you’d not said something’. A false praise really, it wasn’t my saying something that made the difference, it was my defeated retreat that Dr Amazing happened to notice. Still, I like to think I’d have refused to take Dad home that day.

It was the weekend as I recounted our experience to a friend of mine that he asked what day of the week it was. Wednesday said I, a knowing chuckle, ‘ahhh Black Wednesday, that’s killing season alright’. I had no idea what he was talking about at the time, but turns out the first Wednesday of August is the day in which all the new junior doctors take up their post, and others rotate. Dr Strut wasn’t a junior doctor, but I strongly suspect now that he was Day One of being a SHO, giddy on the excitement of no longer being at the bottom of the pile, proud as punch of his superiority and damn determined that everyone would give him the respect he deserved.

I hope that he took something away from his interaction with us, I hope that as he went home that night he stopped and reflected on what his mistake could have cost us. It’s five years later and it’s coming up to two years since Dad died, and still his words and manner haunt me. Still the fear of what could have been. If you have the privilege of working as a doctor in A&E, if you ever find yourself with a checklist in one hand and a distraught family member in front of you, just suspend your own agenda for a minute or two, please, you never know they may have something useful to say!

NB I must end by pointing out this was the exception, not the norm, of the treatment we received throughout Dad’s illness. We were supported and looked after by amazing caring doctors, nurses and HCAs. I have blogged lots about this wonderful treatment, and I don’t offer today’s post to detract from that, more as something to reflect on and maybe learn from.

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2 thoughts on “The blackest of Wednesdays

  1. Thank you for sharing your story with us. My father was recently diagnosed with cholangiocarcinoma. It’s been nearly 4 months. He’s stage 4. He’s only 71, and like your father, he was the picture of good health before his diagnosis. He was supposed to go on a hiking trip to Yosemite when he got sick. I returned from a 3-month study abroad program I was leading in England to find him weak and experiencing pain after eating. We went for a walk around the neighborhood, but he tired quickly, which was very unusual. His diagnosis was missed several times; since he had never really been sick, the doctors just thought it was a virus and sent him home. After a couple ERCPs to insert a stent in the bile duct and a bout of severe pancreatits, they tried to perform the surgery to resect the tumors, but the cancer had progressed too far into both sides of the liver, the gallbladder and even the duodenum. They closed without being able to remove anything. Now he’s leaking bile and pancreatic fluid from the malignancy they biopsied. He’s starting chemo for palliative care, but the doctors think it’s only a matter of months.
    I want to thank you for your honesty, your depth and your beautiful narrative. Your feelings resonate with me. It’s only been a few months, but my world has been irrevocably touched by cancer. Echoing what you said, every plan I make is contingent on whether or not my father winds up in the emergency room. I’m thankful I have a sabbatical this year, because I could not fathom starting the new semester next week. I teach English literature at a community college, but I think all I’d be able to do is send the students home to check their bilirubin levels!!!!
    Your blog helped me feel not quite so alone in this, especially on a night where his diagnosis has hit me pretty hard. I find I’m ok when I’m helping my parents out at their house, taking care of the financials, helping arrange at home care, and helping my mother get my father to and from doctors appointments. But, when I’m on my own, back in my own home, it hits: the recognition that my dad won’t be there to give me advice on buying my house. He won’t be there to meet my child. I won’t be able to call him with the news that I’ve finally finished the dissertation. He won’t be there to take care of my mom. Soon, he just won’t be here anymore.
    So, this is a wordy way to say thank you for sharing your pain, your memories and your happy times with your dad.

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