Before I turned 32, I was a veteran of two spontaneously-occurring medical conditions. One is pretty common (scoliosis), the other far less so (a desmoid tumour). However, everything I’d learned on my first medical merry-go-round with scoliosis treatment from the ages of 14 through to 20 was of benefit when the tumour diagnosis happened. When it comes to preparing for hospital appointments, I’m a pro who’s got things down to a fine art. These are my top tips to getting through your cancer hospital appointments (and most others) with relative ease…
What to expect for a hospital day visit
Before you even think about leaving the house, double check what the purpose of this appointment is. Are you going no further than the outpatients department? Will you be having any scans or other tests and assessments? Is a trip to physio or occupational therapy involved? Or even a consultation with a psychotherapist?
This information matters for a few reasons: it determines what amount of time to factor into your day; what you might be able to do or not do before and after; what you need to take with you; and the most underrated one of them all – what to wear.
In the UK, you should have a letter confirming your hospital appointment – the date, time, location and purpose of it should be on there… but it may be in the language known as Medic, and you therefore might need a translation. It also might not all be on there at all, or you may not even have a letter. If you’re in any doubt whatsoever, call the hospital (your GP is very unlikely to know if you’re being seen at a secondary or tertiary care centre) and double check. Make sure you do this at least a week in advance – some tests, scans and assessments relating to cancer involve fasting, drinking a certain amount of water, and even bowel preparation; these things take time, so it’s worth knowing as soon as possible.
What to take to a cancer appointment
For the remainder of this post, I’m going to focus specifically on the first visit you have to hospital following a diagnosis. Once you get into the rhythm of the cancer journey, things tend to be a bit more predictable, and much of what I’ll say will still apply. I’m also going to assume that this trip isn’t about receiving treatment, but an outpatients appointment to discuss what’s next. So: let’s go.
Paperwork to take to hospital appointments
The letter you’ve been sent about your appointment will be very useful: it’ll have your hospital number, the address and details of the department you’re going to, plus the date and time of your appointment, and contact details for the hospital should you get stuck. The hospital should be able to find you on their system should you show up without it, but it does tend to save time.
In addition to the letter, a list of any medications you’re currently taking, including frequency and dosage, plus your medical history. This doesn’t need to be written down if you’re able to remember it all, and needn’t include every flu jab or childhood vaccination, but it does need to be as comprehensive as possible. The big things matter. If you’re a person who menstruates, I cannot say loudly enough how much easier life is if you track your cycle (no matter how erratic) and have a copy with you. This is phenomenally easy now that we have smartphones, as you can use an app and it’s unlikely that you’ll leave the house without your phone! You then have a ton of data at easy disposal (and it tends to impress medics a lot).
Your last item in this category is a list of questions you want answers to, and a way of recording new information. Whether you like to write things down by hand, have them in a note on your phone, or use some other method, this is so worth doing. Don’t leave it to chance and assume you’ll fit everything on the scrap of envelope you have left. You may also be able to record the appointment on your phone – do just ask the member of staff’s permission first, the worst they can do is say no. Even if you are taking someone with you to help, ensure that they know you want them to make notes if necessary – this is not a time to rely on our memories.
Cancer appointment day out essentials
Phone, keys, wallet, water and snacks (if you’re not allowed to consume them prior to the appointment, it should be ok afterwards). Our COVID-time essentials of tissues and sanitiser are always a good idea, and if I were going to a cancer hospital in particular, I’d be prepared to wear a face covering unless exempt. It may also be that the hospital want to give you one at the door in order to ensure it’s brand new, but it’s best to be prepared.
Entertainment options
I don’t always feel in the mood to read a book on hospital days – I can be quite distracted and fidgety, but I think it’s always worth having the option. Unfortunately, you have no way of knowing whether the clinic will run on time, so a book or magazine is a good idea. If you’re planning on using headphones for music or to watch something, be prepared to have one ear “out” so that you can hear your name being called!
What to wear to a cancer hospital appointment
What you were brought up being told about being hit by a bus doesn’t quite apply… but also does. You’re not necessarily dressing to impress, but you are dressing to be physically and emotionally comfortable, and that may be the same thing!
My absolute golden rules are separates and layers. You may not be given the time and privacy to fully undress and get into a hospital gown – the NHS is often in a hurry, so whilst there should be a curtained area available, life is generally a lot easier if you dress in order to spend minimal time undressing.
As an example: my tumour was in my abdominal wall, so prior to and after surgery, my doctor needed to examine my torso. Knowing this, I dressed in a seasonally-appropriate button-down blouse or a very easy to remove t-shirt or vest top. I the temperature of hospitals and waiting rooms unpredictable, hence the suggestion of layers. If you finish an appointment flustered and not feeling quite put back together, there should be a toilet available if you are hustled out of the consultation room – take your time in there before you make your way back outside (unlike nearby public ones, they should be pretty clean!).
Writing this has made me realise that I have more to share – what more would you like to know? I’ll answer any questions via a follow-up post.