Progress at Last

Day 43

Well I've passed my '40 days and 40 nights' since the op and I am still wandering in the wilderness; that said although I've lost a lot of weight strictly speaking I haven't been fasting (so I'd better drop the "me versus Jesus" analogy).

The good news is that after my litany of set-backs and disappointments I do seem to be on a proper recovery track now. Wound is showing signs of healing (not before time) and a daily District Nurse visit is pretty much enough to keep up wih my need for dressing changes. In the last 2 days I've started to feel improved energy levels and more of an appetite -- I think my weight loss has stopped now (at a rather emaciated 9 stone 9lbs I'm kind of hoping so).

I managed a decent 30 minute walk today and I'm still feeling OK an hour later so I can imagine starting to get some proper exercise within the next few weeks.

I guess that's it for now; it makes a nice change not to have bad news to post here.

Homeward Bound

OK, just a quick positive update today.

Wound healing seems to be progressing well. I get my last dose of iv antibiotics at 2pm today and then I lose the cannula from the back of my hand. Losing the cannula is a source of disproportionate joy for me; amazing how much I have come to resent that little tube and its hinderance of my typing, the way it catches on bed sheets, the difficulty it causes in washing properly ... and the fact that it just marks me out as 'a patient'.

This morning was the first I can remember since the op where my first thought on waking wasn't "ouch, where are my painkillers".

I have had too many false dawns to get over-excited or to start counting any chickens (one of my favourite past-times is chicken counting; its a traditional Scottish thing), but ... this feels like I am genuinely getting better at last.

My 'I can't do anything but watch telly' period of recuperation has co-incided with the World Cup, Wimbledon, The Open and the Tour de France. Now the Tour de France is drawing to a close, my recovery is suddenly accelerating. Coincidence. Honestly. How dare you doubt me? :o)

Now That's Better

At last, a positive Blog post. With any luck, my 'misery memoirs' style posts are now over and I can just start ticking off the steps as I recover fully.

They are keeping me on iv antibiotics until Wednesday but I already feel transformed. I'm still on pain killers of course but I am walking more easily than I have since the op and have some semblance of an appetite.

This has been an unashamedly self-obsessed blog; indeed that is kind of the point of writing it, to purge myself of all the self pity. But as I surface from the worst of this experience I want to take a litte time out to thank those around me who have helped in so many ways.

I won't attempt to name check all those who have visited, sent gifts and cards, texted, tweeted and emailed -- but to all of you a sincere Thank You; it really does make a difference having threads of contact with the real world and knowing I am not forgotten.

Again, I don't want to start name-checking, but the nursing staff here at the Murrayfield (as well as the Stoma care team and the District Nurses) have all earnt my deepest respect and gratitude. The level of patience, sympathy, empathy and emotional support shown has genuinely touched me at times ... and the good humour has helped make the difficult nights and long days a lot easier to deal with.

Lastly but certainly not leastly there's one person who I will name: the remarkable Jane (my partner, for those who don't know her). The stresses for a partner/carer in situations like and the strains that result should not be underestimated [Explanatary note for my classicist friends reading this who tend to treat 'stress' and 'strain' as synonymous: stress = the force applied, strain = the resultant deformation]. Jane has put in an enormous amout of time and effort to make sure I have everything I could possibly need while in hospital, caring for me while I have been at home (including gory middle of the night dressing changes), generally waiting on me hand and foot and at one stage literally mopping my fevered brow. I genuinely don't know how I would have coped without her, particularly when I have reached my emotional low points. She is clearly physically exhausted and emotionally drained by this whole experience: I'm looking forward to being well enough to start repaying the massive debt I owe her.

Right, I have to go now: that Tour de France doesn't watch itself.

Oooh, You Are Awful

So, here I am back in hospital.

I ended up seeing my Consultant on Wednesday evening by which time I could hardly walk and was in tears because of the the pain (and in truth probably because of the psychological trauma of being so weak and realising things were getting worse).

He looked at my wound and delared it really was an 'awful' infection. He made a couple of minor incisions to be able to probe around and assess the depth of the infection cavities and had me checked back in to hospital. To add insult to injury I had to be wheelchaired back out to the car, despite my protestations that I really would rather shuffle under my own power. They were probably right.

By the time I was in my hosital bed I could hardly keep my eyes open or communicate lucidly. I checked my charts today amd my 'resting' pulse was over 100 and my temperature 102 (sounds better in Fahrenheit, but apparently 104 is when they start to realy worry). So I lay in bed with a fan trained on me and Jane literally mopping my fevered brow (a task she has been doing metaphorically for a long time now).

The night wasn't too bad although my dressings were changed 4 times betwen midnight and 6am. At one point I had three bags attached to various parts of my abdomen. At 2:00 am my nurse called in reinforcements and a nurse stood on either side of me as they removed all dressings and my stoma bag to get a fresh start. Of course, once all the dressing were off I started erupting from all three wound holes and my stoma simultaneously and the nurses were frantically swabbing and wiping to try and get me clean enough to redress everything. It was one of those moments when you really do have to be able to laugh and thankfully we all managed to see the funny side.

CT scans yesteday were good news -- it appears there are no other infection pockets so what we can see is what we have to deal with (otherwise they may have had to open me up again). So now its iv antibiotics and fluids (I had not been able to eat or drink sufficiently on Wednesday as I felt so nauseous) painkillers and plenty of rest. A minimum five days in hopsital now to get the iv antibiotics course run.

So here we go again: yesterday evening I got out of bed here for the first time to get to the bathroom and I was as weak and unstable as new-born foal. So the next challenge is a corridor walk; hopefully today.

Rather a dull post I'm afraid -- I'm lacking any wit or wry humour today; hopefully a temporary condition.

Enough Already

I promised my next post would be a more positive one. I'm not sure I am going to able to deliver on that promise I'm afraid; so I'll keep this brief.

Saturday morning I woke in a lot of pain and asked Jane to call the hospital. We went in, saw the consultant who expressed his 'disappointment' at how the wound had developed. They took the decision to fit a bag over the open area of the wound to collect the 'seepage' and let me back home.

Fast forward some dull, tired and sore days to today, Wednesday. I have developed another infection site on the wound which is leaking a lot of puss -- having watched this develop for a few days, the District Nurse this morning decided to get a GP to come and have a look at me (appparently I was white as a sheet, certainly completely physically exhausted).

GP's view is that I should probably go back in to hospital as worried the infection is 'tracking' around my abdomen and thinks I may need to be opened up yet again to have the infection site fully cleaned out. I am not enthusiastic about the idea of being opened up again (somewhat of an understatement) so am sitting here waiting to hear from the Consultant and agree a way forward.

This really is a bind.

Moving Backwards?

A tough couple of days; determined not to let this get on top of me but it really is starting to wear me down.

I have to remind myself that 'Big Picture', all is OK. The problem is my wound has turned really nasty. The more squeamish of you may not to read the rest of this post.

I had two holes in my wound about 5p piece sized and maybe three inches apart. The wound has now opened-up between these two holes to leave me with a gaping hole maybe 3.5 inches long and an inch wide ... and a lot of foul smelling fluid and puss pours out pretty continuously. It is, as it sounds, deeply unpleasant. It does explain why yesterday was such a painful day and had me taking all the pain-killers I am allowed.

The District Nurse described the output from the wound as 'volcanic' today and for the first time she mentioned concern about MRSA. They took a swab a week ago and that has just come back clear so hopefully its 'just an infection' rather than something more sinister.

I started a fresh course of antibiotics yesterday and am told that within 2-3 days the effect should be noticeable. The District Nurse assures me the worst should be over now I have 'erupted'. She suggested that I must be regretting having the operation now. For the first time: yes, damn it, I am regretting it. It wasn't meant to be as bad as this -- of all the things to worry about the surgical incision wound itself was not really on my list.

So there you go. Feeling sorry for myself, which is never a good sign. Have to remind myself that 'you can only do what you can do', that 'we are where we are' and other such glib truisms. But I guess these self-evident truths are, well, true. Self evidently. So I am where I am and I can only do what I can do.

Time to buck up and get on with it I guess. My next post will be more upbeat I promise.
So

Wound up by my wound

First things first; I have had a few visitors who have read this Blog and they all say I look better than they would expect from these Posts -- just wanted to share that in case my tendency towards the melodramatic has overstated quite how ill I am. To be clear: I'm definitely getting better!

So where am I now?

Good news is my daily walk is still extending. I reckon I am managing over 1km now. I'm sad enough to have decided to wear my GPS tomorrow so I can get some solid data *puts on Mel Gibson 'Scottish' accent* "you may take my colon, but you will never take my love of data".

Frustration is the slow progress of my wound healing. I need to have the dressing changed a few times a day and it can be pretty uncomfortable as fluid builds up and seeps out (sorry). Consultant saw me yesterday and cut the wound to help release the fluid so I feel like the healing process is going backwards, but they assure me you heal from the inside out so although it doesn't look great, I must be getting bettter.

My concentration levels are pretty poor. I've been trying to do odd bits of work but I don't trust myself with anything that requires proper brain activity. I was expecting to read a lot during this time, but again so far I don't have the concentration required to read more than a page or two.

But it's all good; I was warned it would take time to recover and that was before all the complications and the second op. My weight has stabilised; was hoping to have put some weight on by now but thinking positively I have stopped losing weight and energy levels are improving.

Enough for now.

Coming to terms with recuperation

OK, I'm getting pretty frustrated now.

I have to remind myself that I have only been out of hospital for 5 days, but I really was expecting to be making faster progress than this.

Irritatingly the combination of 'Big Op'+Sepsis+'Second Op'+steroids is not a good one for wound healing. So although I have stopped weeping, my wound has not. This means fluid build up, soreness, dressing changes ... and most frustratingly of all I have to remain pretty sedentary. I'm still managing to extend my daily walk (must be up to 300 metres now. Yeah, I know) but that activity is pretty uncomfortable and makes my wound worse. It's a tricky balancing act as I need to allow myself to heal but be active to try and rebuild strength and get some muscle back on my legs (I was never a big thighed cyclist but I can now get my hands to join around the tops of my thighs!).

The community nurse was round today to look at my wound. She's not been the first person to tell me an operation like this takes 12 months to get over; but this might be the first time I've allowed myself to believe it.

Still; its early days and every day does get better.

Lounging around all day feeling sorry for myself means a lot of daytime TV; and that means daytime TV Ads. Today I have just discovered that I could borrow money from QuickQuid.co.uk for only 2278% APR. I'm not making that APR figure up, it's plastered across the screen. That means if you borrowed £1,500 from them, in a year you would pay £34,170 interest. I wonder how it feels to know you are making your living by exploiting the desperate poor? I'm not a judgemental person ... but anybody associated with that business is going straight to Hell.

There, I feel better already.

The Disappearing Man

So I'm home, delighted to be out of hospital after 17 days.

It makes a big difference to be sleeping in my own bed and eating a variety of food. I'm still pretty uncomfortable and incredibly weary; the 'double whammy' of the two ops has definitely taken its toll.

I weighed myself this morning on my own scales ... it turns out I have now lost 14kg (over 2 stone). I wasn't exactly a big lump before the op: I'm now 62.5kg -- that's under 10 stone for f**ks sake!

Which I guess explains why I get so fatigued just moving about. So my task now is simple: eat. Try and be active, make myself get up and walk (managed a 100 yards or so tody) and eat. My wound is sore and I have little apppetite but how hard can it be to eat? So smoked salmon, porridge, nutrition drinks (horrible), crisps, biscuits, bananas, fish ... just have to make myself keep eating.

I'm frustrated that I can't exercise ... but that will come. Patience wouldn't appear high in a listing of my virtues but I am going to have to find some.

Now to try and get the energy together for a shower and dressing change.