Hi everyone. I’ve been a bit quiet on the blog so far in 2018. I think it has something to do with being very busy at work, stepping up at home as my wife’s pregnancy means she is knackered and also the low mood persisting. It has got better from October when it was really quite bad, but I am now 5 weeks of 6 through my group and don’t really feel like much has changed.
Anyway, I owe you an update since my last trip to Wales when I was waiting for an MRI scan in Bristol. It got to December and I hadn’t heard anything so I checked with my consultant’s secretary who said it had been requested. However, radiology use a different system so she couldn’t see where I was in the queue. So I phoned radiology who said they hadn’t had the request. Cue call back the secretary, then on leave for Christmas, so an email to the consultant asking him to re-request, which he did on his return to work and an appointment quickly arrived – the day before my Cardiff appointment! So a phone call to them, explain the situation and rearranged for today – should be plenty of time for the report to be done and shared. I checked at the beginning of this week and Cardiff hadn’t got it, so cue more phone calls, the exchanging of fax numbers and the report was there for my appointment today.
Now, I want to be very clear that I do not blame anyone for this, but I do think it is representative of a creaking system. Our NHS is being deprived of resource, and it is only by advocating for myself that I was able to avoid a January trip to Cardiff that would have really been a waste – for me and them, and then another today. All the staff I spoke to were extremely helpful and understanding – but there are either not enough of them, too many patients or poor systems. Maybe it is a combination of all three, but in a system that seems to increasingly need patients to advocate for themselves, I worry about those who cannot – for whatever reason. Perhaps that is a theme I’ll develop in a future post…
Just after Christmas we stopped using the SNAP dressing because the wound was too shallow to get the foam in – all of a sudden we had improvement! This has continued, and a slight fungal infection aside, the external picture is looking really good.
The MRI scan shows that internally the fistula tracts and void where pouch, rectum and anus were removed are also reducing in size, so it all seems positive, and I’ve got an appointment to go back to Cardiff in 6 months if needed. And yet somehow I don’t feel… happy? Joyful? That it is all over?
I see the tissue viability nurse on Friday, so perhaps if I can be discharged from that service I’ll feel better. Maybe I’ve been institutionalised by it all going on so long?