Well that was a long (and HOT) day! I hadn't really thought ahead when I made my dentist appointment for this morning after losing a bit of tooth 2 weeks ago (did I mention that? I can't remember): although I knew I had a workshop at Queen Square at 2pm, I thought I could squeeze in an appointment in the morning. I will know tomorrow if that was a foolish thing to do....
Anyway, it was boiling hot but luckily I bumped into a friend who was going in my direction so I got a lift down to Rickmansworth and got to the dentist's early. After my appointment I was trying to decide whether to go home first or go straight to London. The thought of sitting on the Tube (Underground train for those of you not in the know...) in this heat made me choose the former, and I got the bus back home. After a well-earned "cuppa tea" I got another bus to the station, chose a yummy baguette from Upper Crust for my lunch, and caught a nice, fast, air-conditioned train into town. From there it's a quick hop on a double decker to Russell Square and a short walk to the Institute.
I am soooo glad the meeting room we were in was air conditioned. There are four of us in the group, who have all survived subarachnoid haemorrhages at various points, from 3 months to 2 years ago. Today's session was run by the Specialist Vascular Nurse who had looked after me in hospital, and there were two clinical psychologists there too. We introduced ourselves and each told our story, and it turns out I was the only one who had had an operation - the others were treated with coiling which is less invasive and has a quicker recovery time. Which treatment is chosen really depends on where the aneurysm is situated and what state you are in.
It was a very interesting session as Sarah told us all about the different kinds of bleeds, what treatments there are, what happens when you are in hospital, symptoms and signs, after-effects etc. Some of it we knew, but we still learned something new as well.
Over time we are going to address the problems of fatigue, cognitive issues, emotional issues and the like. Fatigue is the number one after-effect, apparently, but it affects everyone differently. Some people don't get it so bad, others never get back to "normal". There is no way of knowing how you'll fare, either, as it's so very individual. Talking of fatigue, I have been given several questionnaires to complete for next time: the "fatigue impact scale", the "work and social adjustment scale", a "health survey" and one called DASS 21 which seems to look at the emotional after-effects. Personally, and having had a quick look at them so far, I think that emotionally, or psychologically, I'm doing very well. Physically, however, the fatigue is really debilitating, although I do feel that my overall health can be considered "good". It will be interesting to see whether they can offer us any help beyond what we've already had - for example, I found the Fatigue Management sessions with the OT very useful last year. The psychologist did mention that it's very hard to discern whether someone is making progress because their brain is healing or whether they're just applying coping strategies.
So there you have it. A loooong day, but one that I feel is very useful both in terms of learning more myself and also helping them to see what the needs of their SAH patients are so they can fine-tune their care.
And on that note, I'm turning off the computer! Nite nite all.
