D Day -14: A4 paper on kitchen table already full of questions to ask the doctor - it's sitting on the table ready to be added to over next week or so, before being trimmed down to what is reasonable to expect to cover in an appointment (i.e. half a question!). The appointment is already dominating family meal times and all conversations in our house.
D Day -10: I panic about coping with the aftermath of the appointment and hurriedly checked which oldest and dearest friends would be around that evening to pick up the pieces
D Day -9: worried about having agreed to do something the day after . . . Will I actually be functioning enough to be able to go? Appointments really do wipe me out, emotionally, mentally and physically. Is the rest of that week going to be a write-off?
D Day -8: a really bad day symptom wise, and panicking about how on earth I am going to relay all the symptoms and problems (and their impact on my life) to the doctor in just a few minutes!!
D Day -7: how can I cope if I don't get answers and have to carry on like this for another year or more until we see him again?
D Day -6: what if we don't see him, but one of his registrars and we spend 90% of the appointment going through my history again and then a few seconds at the end of the register telling us what the consultant has already told us?!
D Day -5: I had a missed call from a London number on my phone this morning - heart rate already raised thinking I had missed a call from my specialist nurse or secretary (these are people who don't leave messages and rarely call back - you miss the call, you miss the whole caboodle!). I listened to the answer phone message and it was an automated one asking me to call a number about my appointment - heart rate now through the roof - are they cancelling? After pressing 1 for this and 2 for that, I eventually confirmed that I was attending the appointment. And that was all they wanted! Don't get me wrong - I appreciate the cost of DNA's (did not attends- patients not turning up), but just wanted to include that little episode in this diary to illustrate the all-consuming nature of an impending appointment and any possible communication with a doctor!
D Day -4: today is one of the two days a week that my specialist nurse calls patients - or at least it was 7 months ago when I last spoke to hear and heard from her. Today I took my phone to the toilet and made my mum babysit it while I had a shower in case I missed it. Again, you miss her call, you miss the whole caboodle! First signs of insanity or standard patient ritual?!
D Day -3: challenge of sitting down with my parents and planning how we are going to approach the appointment . . . Sounds like overkill? Sounds more like a military operation rather than a little chat with a doctor? But when you only see the doctor for a few minutes each year and the consequence of that appointment affects you every minute of every day, it needs serious planning! The hardest thing is prioritising the questions - I know I am not going to get to ask many questions (let along get answers to any!) so I have to sit down and think what could I survive the next year not knowing. . . . What information is going to help me the most this year before our next appointment?
D Day -2: really feeling nervous now! What could they tell me? I'm worrying about being told the prognosis has changed, or the appointment going really badly and not getting any answers and having to carry on as I am with no support until the next appointment - an unthinkable prospect!
D Day -1: took all the willpower in the world to silence the flock of butterflies already in my tummy and eat a proper meal today. . .
Really terrified of not getting the angle right in the appointment - it is a really fine line between getting angry because I am so upset about my situation and my usual default when I see doctors (so grateful they can squeeze me into their day, I bend over backwards and and am over gracious!). I am generally a positive person and don't like to complain about my situation but when I am seeing doctors I have to be really honest and tell it like it is, without worrying about sounding too negative. My doctors aren't talking to me because they like me, they are talking to me because its their job, so I don't have to save them from the worst of my life as I would for friends. As simple as that sounds, it's easier said than done! Especially in the heat of the appointment.
D Day: AAAAAARRRRRGGGGHHHH!!!!! I hardly slept, and feel on edge and very shaky - I will probably get diagnosed with Parkinson's at this rate! Turned up at the clinic according to the letter with plenty of time only to get told the clinic has moved - we still had plenty of time to get to the new clinic, but I would be lying if I said I didn't go into panic overdrive about being able find it on time. Feeling extremely anxious and panicky, I stood at the reception for several minutes while a receptionist stared at his screen until he felt ready to check me in. My father accompanies me to these appointments and ummed and ahhed about going to the loo before the appointment in case he missed the doctor calling us in. I promise the other 364 days of the year we are a very rational and normal family!
So the appointment came and went. We left and didn't say anything to each other and walked in silence to a nearby cafe for a much needed sugar kick. We sat in silence for a while. Trying to take it all in, and then started to talk about it. I was tearful, and so overwhelmed and exhausted that I could hardly finish my sentences for the rest of the evening, and went to bed at 9! Although I was exhausted, the appointment was running through my head and it took me ages to actually nod off.
D Day +1: over breakfast, my father and I wrote a long list of questions we had following the appointment, things we didn't fully understand and further questions that the appointment has generated! Less than 24 hours later and we have more questions that we did pre-appointment! Various relatives and friends ask how the appointment was - still hard to sum it up or work out what I felt about it. Appointments for long term health conditions are never as simple as just getting a prescription and going home again!
|The abyss in between appointments|
D Day +3: very tearful all day, and feeling totally daunted by the prospect of carrying on with the symptoms as they are for another year until the next appointment, which will no doubt bring the same lack of a cure . . .
D Day +4: feeling cross with myself today that I didn't get my point across better about how much I am struggling. Although my Dad reassured me I was very clear, I can't help thinking what could h ave happened if I had been just that bit clearer?
D Day +5: My father admits how drained he has been this week, because of the emotional challenges of attending a doctors appointment - it has wiped him out all week too! Feeling slightly guilty too that my condition and appointments have such an impact on others too.
|Easier said than done!|
D Day +8: kicking myself for not thinking about a specific question and asking the doctor when she mentioned the new drug . . . Information suddenly seems enormously valuable when you only have a few minutes once a year to collect it.
D Day +9: really bad day symptom wise and very upset with lack of hope from the appointment and being back in the abyss and playing the waiting game . . . Waiting is hard at the best of times, but torturous when crippled by pain and fatigue.
D Day + 14: still thinking about the "what ifs" from the appointment . . .