Getting home was nice, you know when it is time to leave hospital. At first you need the care provided by being there and you can’t do things for yourself. But in the end you know when you can look after yourself enough, don’t need specialist care and actually will now get stronger at home rather than in hospital.
Nicky and Adam came up to see me the weekend I was allowed out. They were planning to come and see me in hospital on the Friday they travelled up from Cornwall, but I came home about 4pm that day. When you’re at home there are normal routines and times that things happen so you fall back in to those. Or I thought I would!
By this time I had been bed bound, then sitting around and lying in bed for over 3 weeks and everything hurt so much just to lie or sit in any position. My back was really stiff and muscles everywhere really hurt through being tight and not used for so long. The district nurse organised a big soft mattress topper to go on top of my mattress to try and relieve some of the pain, but by then I had lost so much body weight my knees and hips would hurt all night in bed if I lay on my side at all.
Nicky, Adam, and my Mum and Dad would try and massage my back and hips/legs to try and help with it hurting so much but I would be sitting and lying down again most of the next day so it couldn't be helped really. It just helped ease it at the time mainly.
The staples had been taken out on the main wound that ran from the sternum to below belt line the day before I came out of hospital, so I had a big dressing covering up the length of the wound to come home with. This was changed by the nurses in our local surgery in Petworth so Mum or Dad took me there most days for this.
I think due to being more active generally and sitting up more instead of lying down probably caused the wound to open up top and bottom after being home for a few days. The top hole opened up to a £2 coin size and you could see the sternum! This was the better one!
The bottom one opened up to nearly a couple of inches and was weeping such a lot that a dressing wouldn't contain it, so the nurses had to cut up another colostomy bag and stick it over the wound to actually contain the fluid that was coming out!
So I had a colostomy bag for going to the loo in from the first operation and now one next to it to contain the hole that had opened up! Needless to say it wasn’t very comfortable but because it had to be cut such a lot to fit next to the other bag, most of the adhesive on the bag wasn't there so it had an even more unfortunate tendency to leak aswell! This I found by waking up one night having been asleep on my side allowing the contents of the bag to be on the edge without much adhesive...
This meant that for a week or so I couldn’t move in bed and had to just stay on my right side so the wound drained into the bag the right way and wouldn’t come off, making my hips and knees hurt even more without being able to alternate the pressure!
It dried up after about a week and the nurses could put a normal dressing on it again. I was getting pretty good at changing bags and dressings by now too, but it wasn’t ever that much fun to have to do that in the middle of the night or just as you’re going to bed and already hanging from the day. A good test of patience when you find a dressing is full or coming off just when you were going to crash out!
I was taking sleeping tablets for a while as well, partly because I just couldn’t sleep (even though I was so tired, I’d wake up in the night and not get back to sleep for hours) and partly to make me sleep because bits still hurt so would keep me awake.
I was absolutely knackered for the first 3 weeks of being at home with no improvement. This was weird for me and I actually found it quite frustrating - It was a similar feeling to 2 days after a hundred miler. I find that the first 1-2 days you are buzzing still and in the zone / event but after a couple of days I’m always HANGING! This normally lasts for about 2-3 days then I start to recover and get stronger. So I was used to how it feels and it was quite similar to after some races I’ve done, but it didn’t get any better.
I’d get up about 9 - 9.30, get dressed and go to the kitchen. I’d have breakfast and literally have to sit there for a while. Then normally I’d go outside the backdoor and sit in the sun until half 11 or so and doze before having a couple of eggs then a shower at around mid-day. This wasn’t too bad by the time I was at home, it didn’t take as much out of me as the first time I had a shower in hospital.
I’d have lunch around 1 then either go back outside in the sun or to bed for a bit with a blanket over me until about 4ish when it would be more food before going and sitting in the lounge. I’d normally doze until dinner time then sit in the lounge again until about 10 when I’d go to bed.
It was basically like this for 3 weeks before there were any signs of getting better and stronger. I was expecting that once I was at home, the antibiotics had worn off so my taste would get back to normal (they made everything taste horrible) and I was able to eat what I wanted to have etc that I would start to get stronger as I always had done from feeling like this after a big race. This was naive, but it is also a positive outlook.
Also because of being fed through the nose in intensive care for over a week, then small meals in hospital, when I was at home and trying to eatmore it really hurt. I don’t know if it was the volume (it wasn’t much!) or muscles not used to it but after some food I’d have to go and sit down and try and move around because it hurt so much! This eased after about 3 weeks.
As soon as I got home I started walking more. It was nice to be outside and by mid May the weather was often quite good and sunny. I would walk around the garden at first, with trekking poles to help for balance. This would be maybe 200 yards which was enough! I built up to going down into the woods (the garden backs onto some woodland) and would after a week or so do hill sessions on the small slope up from the stream I’d walk to. This was good to feel you’re breathing deeply and making leg muscles work again. I went into Petworth Park with Dad for a walk after seeing the nurse everyday. This is a big National Trust parkland area that is walled all the way round and has big deer herds in, so its a really nice place to go. I’d always take the poles and soon built up to doing about 3 miles or so in there.
The first weekend I came out of hospital when Nicky and Adam were here we went into the park - them for a run and Dad and I just walked. After being in hospital and ill for so long I was keen to get back to normal and see what I could still do, not expecting or accepting maybe that I was actually so weak. So I did a mile!
Having just come home the day before and the most I’d done in hospitalbeing laps of the ward and a flight of stairs ONCE, it was quite a bit! Took a while but it was such a good thing to do! Nice to be a bit more normal!