Monday 22 April 2013

Two weeks on, four weeks post op

It's been 4 weeks and 3 days since my operation now. In the last week, the infected scar on my back has nearly cleared up, and I'm down to a small dressing on one section of it. I'm still being visited by the district nurse, but now only every other day.
As you may have noticed on FB & Twitter, I've been back on the bike, albeit only on the turbo trainer kindly loaned to me by Richard, but at least my legs are spinning a little.
I've only done 2 sessions of 30 minutes so far, but it's a start. I'm beginning to get a little frustrated about not being able to go out on the bike for real, but I'm aware that if I push too hard I could end up doing myself some damage as my internal wounds heal. 
I'm still in some considerable pain, and am taking regular liquid morphine around every 4 hours a day. I'm sleeping so much better at night though, with the past weekend being the best nights sleep I've had for ages, almost sleeping all the way through the night. The only problem with that is that I miss my medication in the middle of the night and wake up with some rather acute pain. Swings and roundabouts I guess. 

I've been monitoring my weight for over a year, and especially so in the run up to the operation. When I was diagnosed with cancer back in October I was 208 pounds. I was advised to put on weight both to help me through the chemo and to offset the weight loss I'd have after the operation. I found it easy to put weight on during my chemo as I wasn't having any problems eating. As well as keeping the cycling going, I put weight on to the point that I weighed 238 pounds on the day before my operation. Plenty enough I thought. I could really feel the extra pounds too. I'd had to buy bigger pants, none of my t-shirts would fit properly and I felt sluggish and slow on the bike. 
I weighed myself yesterday and I'm back to 208 pounds! In only 4 weeks I've lost 30 pounds. That's some diet! :) 

I'm going to have to keep an eye on that. I can afford to lose a little more, but not too much bearing in mind I've still got another full course of chemo coming up on the 6th May.

Happy days xx

Monday 15 April 2013

One week later - update

I've been home a week today now. Within a few days the swelling in my legs and ankles had gone down and I was beginning to feel normal again. I've had loads of rest, sleeping in chunks of at least 4 hours at a time, waking for some meds, then sleeping again.
The district nurse comes out everyday to check up on my scar, and dress the wound. That is clearing up nicely now as well, with the worse pain being everytime the dressing gets ripped off and takes a little bit more of my back hair with it! Ouch!

I've only been out for one walk last week, which was on Friday when we went down to Polocini for dinner. I felt ok walking down, but coming back was a bit of a struggle. I mean to improve on that this week, and starting today am going to make an effort to get out for a walk everyday. On top of that, Richard is kindly lending me his turbo trainer, where I'll be able to get my cycling legs working again. I've just got to be careful with my stomach, as the amount of cutting that's been done in there means without my meds, the pain is quite acute after a while.

I'm at the Christie this week as well, to see when I can start my next (last) course of Chemo. I'm really not looking forward to that, but it has to be done. As far as I'm aware, it will be the same course as I had in the first place, so 3 x 1 10 hour infusions and 21 days of chemo tablets, 66 days of chemo in total. If I had any spare energy getting over this operation, that should wipe it out completely for a while.

Plenty of time to take it slow, don't rush into anything, and get better right. If I try to rush things I'll possibly make it worse, so I'll take my time. It is frustrating, there's no denying that, but I'm cancer free now and that is the main thing.

Take care xx

Tuesday 9 April 2013

Home Baby Yeah (right, I'll stop that now)

So I last blogged on Friday 5th, by the Sunday, when Joh came to visit, I was at wits end. I lasted about 30 minutes into visiting time before the curtains came round the bed and I broke down in tears, sobbing like a fucking baby. I'd simply had enough of being in hospital, but on top of that putting a brave face on the constant pain I was in and discomfort.
Joh vowed to do all she could to get me out on the Monday, and home where I belong. She left and I was quietly hopeful that I'd be on my way home by tea time Monday.

That night, I tucked myself into bed early, put my headphones on and had a doze. I awoke around midnight with my phones still in and unplugged. I asked the ward nurse for a brew, had a piss, then went back to sleep, sat upright in as comfortable position as I could be. I awoke with a start at 4:15 in the morning, and for some reason was holding an empty cup. I thought I'd spilt it down me as all my right side was wet. I reached down into the dampness and it felt sticky, and substantially more than a small glass of water that I thought I'd poured over myself. When I switched the light on, my heart sank and the tears started flowing again. The sticky mess was where the stitches on my back had burst from the swelling that was keeping me in hospital. It was all red and mucky and I just had visions of me staying in for another week to get it sorted. I called the night nurses and they came and cleaned me up, dressed the wound and left me with a cup of tea while they called the house officer to come see. Needless to say, no-one came, and I didn't get seen until later than morning at 11:30 by my own doctor.

I'd sent Joh a text that night explaining what had happened around 5am, so when she woke she called me and promised to do all she could to get it sorted as best as possible, but to be prepared for the news that I may have to stay in for a few more days. I cried again.
I really didn't want to spend another night there, and it was really beginning to get me depressed. I lay in bed all that morning waiting for the doctor, barely speaking to anyone. The day nurses were excellent, reassuring me and comforting me knowing that I was very pissed off.
Eventually the doctor turned up and was positive from the outset, saying he was glad the swelling had burst and that if I wanted to go home today he'd get it sorted straight away. Music to my ears. He started ordering the nurses around to get him this and that to put a drain on the wound and clean it all up, consulted his underlings for my latest stats, then simply said "you can go home today" and shot off to his next patient.

AWESOME!

I called Joh straight away, who'd spent the morning on the phone to the Doctors colleagues and other nurses to ensure he knew my state of mind and came to the right decision, I have her to thank big style for getting out of there. I love you darling.

Now, reading that back seems that I hated being in the MRI, but the truth is the staff were excellent and the place itself wasn't bad, it's just the lenght of time and the fact that I didn't feel that ill as such, that I needed to stay in any longer. I was ready to come home, and fight my recovery fight here with Joh's and the kids support, rather than in there. I'd like to say a big thanks to all the staff on HDU and WARD 11 who looked after me during my stay, angels the bloody lot of you xx

Which leaves me here at home, arriving around tea time on Monday night.
The dogs went mad! Toby especially. Ellie was happy to give me a big lick all over my face, but Toby wanted to jump all over me, soft dog he is. Some restraint was called for and he eventually calmed down.

I spent the first night in my own bed in 17 days, and it was bliss. I slept till about 3 in the morning from getting my head down around 10pm, the longest I'd slept in any period in hospital, then slept through to 6, dozed, slept again till 9, breakfast in bed, egg buttie heaven, then slept again till 1pm.

Feeling totally rested, I got up, showered and Joh changed the dressing on my wound, and took a few photos of my scars in the meantime:



You can see I'm having no problems with the one on my stomach, but the one on my back is where the fluid was/is leaking from still. Even today, after being home for such a short time and properly resting, it's clearing up already. There really is no place like home.

So the fight goes on. I've got some major healing to do and it's going to be a hard slog. With Joh and the kids behind me it makes it a whole lot easier, but I think I underestimated how hard this part of the treatment was going to be. That still scares me shitless, even though I'm technically cancer free now.

Bring it on. xx

Friday 5 April 2013

Pain baby yeah!

I was transferred onto ward 11 on Monday, where I settled in quite quickly and just waited around for the last healing processes to take effect so could go home. My breathing still wasn't right though and the doctors decided to keep me under observation in the hope it would improve on its own.
It didn't.
By Wednesday night I was no better and actually getting worse. I was originally told I'd be released on Thursday but ended up on more medication to sort my chest out.
Unfortunately, taking the meds meant having a new canula fitted.
My veins in my arms have taken a beating over the last 6 months and there's not much left of them, so finding one to inject drugs into is getting very hard.
I lost count of how many nurses tried to fit one on Thursday. Eventually a doctor managed to get a slow line in, but it wasn't to last. By 5pm it was clear that nothing was going down the line and the much needed antibiotics were not being delivered.
On top of that, my scar on my back had become enflamed and extremely painful.
So now I needed two lots of antibiotics and no canula to feed them into me. I was in pain, uncomfortable and getting a little pissed off with the pace the ward was going to solve this problem.
At changeover from lates to nights, I presumed the later would have sorted something out, not quite.
We were now waiting for a nurse to come on shift who can canula the hardest cases, and also a visit was requested by the senior house officer about my back scar.
The nurse duly arrived on shift and had a good fast working canula in straight away. The house officer never showed.

I've spent the night semi-propped up in bed getting on top of the antibiotics to clear up my chest infection, which is working, but I've had no medication for my scar all night and between my normal pain meds it's been burning like hell.
Hopefully today something will be done about that, while I'm still improving on the chest front.

Don't think I'm coming home today :(