Here’s the story so far.
Remember I’ve done this before. I probably know far more than the average person having to navigate this. I know about the rules and regulations and targets that hospitals have to follow for suspected cancer cases. I know that you can call and email the consultants secretary. I know you can fight your corner. I know you can chase. I have the confidence to do it.
God help anyone who doesn’t.
20.5.18 A Sunday. I have such a sore throat, can’t swallow. hardly talk that I go and knock on a local GP’s door. I know them, not massively well, but I’m that concerned I weigh up that knocking on their door on a Sunday morning is worth the potential of pissing them off. They were out.
20.5.18 I call my doctor’s surgery, to find out who I call out of hours. It’s 111. Joy. I’ve dealt with them before and quite frankly they are crap. I can hardly talk. I INSIST to the call handler on talking to a nurse. The nurse, eventually calls me back, and signs the golden ticket to allow me to go and see the out of hours doctor. Just. Their first assessment was that I could wait until Monday morning.
20.5.18 I go to out of hours. Get seen by a nurse practitioner at Yeovil hospital in the out of hours service. She probably should of admitted me there and then, but she gave me a preccription for antibiotics ‘You better drive back to Crewkerne quick our Pharmacy isn’t open’ and sent me on my way.
21.5.18 I call my GP. 4 words. This involves speaking to a receptionist, who asks you whats wrong, tells you can go on the call back list for an appointment, can’t tell you when that will be, doesn’t listen to the fact that you live in a rural spot where phone reception is pants and calls are often missed, doesn’t listen to the fact that you know you absolutely need to see a doctor. Get the call back, have to go through all the same shit, then eventually get the ‘come in and see us’ invitation.
21.5.18 GP takes one look at you, tells you that you need to go to A&E. Rings ahead to tell them you are coming. They tell her to tell me that I should go ASAP. I leave with letter from GP in hand, nip home to literally pick up phone charger (THE most important thing in hospital!) and go.
21.5.18 Queue up, patiently, at A&E reception at Taunton. In front of me is a small toddler with a massive egg on his forehead, and a man who has a small cut on his finger. I hand over my letter, tell them in my almost absent voice that cuts like a knife every time I use it, that ENT know I am coming, I have a letter from my GP. Get told to take a seat. They are incredibly busy.
21.5.18 After about 40 minutes I get called. To triage! WTF. I again have to explain, again with a voice that hardly works, that ENT know I am coming, I have a letter from the GP. Someone goes off and sprinkles some common sense and communication fairy dust and I get taken off by a doctor who had probably been wondering what had taken me so long to turn up.
Treated, sorted, discharged. With the comment that they want to see me for follow up within the next 2 weeks.
Get a letter for an appointment for 3 and a half week in the future, not at Musgrove but at a local community hospital clinic. I ring the consultants secretary and I say that I am concerned that 1. The appointment is not within the 2 weeks that was suggested and 2. That would all the diagnostic capability that may be needed be available at a satellite clinic. They agree and an appointment is offered for 6th June at Musgrove. Still just past the magic 2 week wait that suspected cancer cases should be seen.
Somewhere in this time line I try and get to speak to my GP so she can prescribe me some anti anxiety meds. Again I have to go through the we’ll phone you back, we’ll decided if you warrant a call from the doc, then you can wait for call from the doc, then you can speak to the doc, then the doc will decide if they will see you or not. I again explain to them that my phone reception is shocking, if they give me a window when they expect to phone I can make sure I am somewhere with reception. They can’t. I had a bit of a ding dong with the practice manager who helpfully suggests that I could always get a landline. I informed her that yes I could, but every time I do, it knocks out my broadband. She also insisted she lived in the same village as me. Seeing as where I live consists of 5 houses nestled in 500 acres I clearly told her she didn’t. Yet she still insisted she did. She clearly knew best!
6.6.18 I go to my first consultant appointment. I’m examined and told he would like to order me an MRI and an EUA. He would like the scan first. I tell him that I find MRI’s very challenging and would need sedation to undergo a head and neck one.
10.6.18 I send a detailed email to the consultants secretary explaining I cannot undergo an MRI. I don’t want to waste anyone’s time or imaging slot. If there is no possibility to be sedated fully could they please do a CT instead. Remember he wants this imaging before the EUA.
13.6.18 I attend pre op for my EUA. I tell the pre op nurse that I have informed the consultant via his secretary that I will not be undergoing the MRI. I also tell her that I haven’t had a reply to my email to the consultants secretary yet.
14.6.18 I ring the consultants secretary. Her colleague tells me that yes the MRI has been cancelled and I will be having a CT. I inform them that possibly communicating that to me would of been a good idea. Literally 20 minutes later I get a call from the MRI department offering me an appointment for the MRI. I inform the lady that I won’t be having an MRI now but a CT. She, quite crossly, informs me that no one has told her. I inform her that maybe she should get cross with the people in charge of communicating with her not me.
19.6.18 Today. I ring the imaging department to see if a CT appointment has been made yet. After holding for 20 minutes (I’m already over my months minutes and getting spanked financially every time I make a call) I decide I may have more joy with the consultants secretary. I again speak to another of the team. They inform me that yes my MRI has been cancelled but no request has yet been put in for a CT.
I hear myself say ‘Can someone please book me a CT to find out if I have cancer or not’
I’m waiting, for as long as this has taken to write all this, to find out if someone can do that, incredibly simple task.