Friday, 28 January 2011
This is a picture of a urostomy bag. Pre- September I had never heard of such a thing. Had never heard the term. Never thought that people could live a normal life without a bladder. Why would it occur to me? To any of us? When people take a while in a public loo I have been less than patient huffing and puffing and wondering why they are taking so long. It never occurred to me that they might be sorting out 'a bag'.
I was told I was going to be a 'urostomate' the day before my operation. I was given a leaflet and a booklet and some sample bags. I was in such a daze I couldn't really take it in. I was too busy trying to absorb a few other facts- a 50% chance of not waking up, having a stroke, waking up permenantly disabled and not able to walk again- these were the things in my prayers. A urostomy bag didn't seem to be such a big deal.
I was also told I may have to have a colostomy too- but in the end I didn't need this. I was having dreadful trouble with my bladder. I knew it had to go and I was pleased to let it go. It was killing me- plain and simple.
Urine never stops coming and there is a clever pro- cedure where the urine can be channelled into what is known as a stoma. It's a clever little thing on the right hand side of the tummy. I am now too sure about how they do it, but my surgeon was called Mr Christmas. How sweet is that? Anyway, the urine comes out and is caught in the bag. There is no off switch.... so changing the bag can be quite tricky. It takes a while and to start with I really despaired of ever being able to do it. I need to clean the stoma, use stoma paste to help with leaks, cavilon protection to protect my skin...... it's pretty fiddly. But I have slowly got used to it. Other half is brilliant and a great help, but between us we can cover it. If anyone out there ever needs one, or knows someone who might in the future, really it is fine. It doesn't stop you doing anything- I can swim even, but haven't yet.
At night I have a night rack where a bigger bag is attached to the smaller one. The little bag drains into the big bag to save you getting up to empty the bag when you are asleep. It is lovely on winter nights- I never have to get up into the cold air. Also, I never have the urge ' to go' anymore... I just need to remember to empty the bag regularly through the day.
If they asked me if I wanted my bladder back I would now say no. Really I find it just fine.
I ring for supplies whenever I need them to a lovely company in Scotland and they are delivered next day. They couldn't be more helpful and informative. It's a competitive industry so they have to maintain high standards. It's impressive.
Sometimes the bag starts leaking. I have to have spares at all times. It happened tonight when I went up to my friend's for a drink. I sorted myself out in a flash and I was so proud of myself. Only a few months I never thought I was master it- now I doing it all in the blink of an eye.
I hope this post will raise awareness and perhaps give someone confidence in the future. Like anything- it takes a while. If it isn't your cup of tea all this- your probably didn't get to the end of the post. No more medical ones now for a while I promise XX
Not sure if it was my gran, or even mum who had one...... but somewhere in the mists of my youth I remember a floor sweeper. It was whisked out to sort crumbs out. I thought even then it was pretty cool. So much quieter than the vacuum cleaner ( I hate the noise to this day) and so much lighter.
Since there are men in the house, and particularly a teenager variety, we have a lot of crumbs.
So yesterday I went to Lakeland and bought- a floor sweeper. A simple plain no frills type. And today it gets its first outing. Just a quick rampage round the kitchen and lounge, and I we will see if this is the start of a love story. Anyone else out there a fan?
Wednesday, 26 January 2011
I want you to think about stuff you enjoy doing every day or every week. Just simple things-nothing exciting. Things that aren't complicated or expensive, things that just give your life a bit of structure and perhaps routine. Stuff that you don't really notice- until it is suddenly taken away at a moment's notice- for months.
I haven't done an awful lot of that type of activity for months- since last March really but certainly hardly at all since September 29th ( operation day). Let me give you a few examples: going for coffee with the girls after school drop off in the morning; driving even short trips; little walks round the block and to my dad's grave ten minutes away; going to Church; going to the supermarket; talking strategy about business stuff with other half and crayoning on the big office whiteboard with chunky pens. Even making teenager's tea ( yes I am serious).
One day I could do it- and pretty much the next day I couldn't. And I am just getting back into it and it is a total joy. I don't take anything for granted these days. Having the strength to have a shower is wonderful. There was a point where I went to bed without a teeth clean- I just didn't have the strength. Now when the brush is flying I thank God that I can do it twice a day and easily. Putting a load of washing on- pride. Making any type of a meal. Success. Brewing a cuppa for a visitor- goal scored.
Today I was able to get up after a great continuous night's sleep. I was able to go with other half to school drop off. I then went to the supermarket to meet my friends for a coffee. We used to meet a few times a week. Today I was celebrating the first visit for months. And it felt great. What a tonic. What a strength those ladies are. I love them to bits. I don't think they read this blog- so I am not being a creep honest. It was just good to chat about the usual stuff - the kids, plans for half term, exams, possible social activities. Oh happiness. And when I got back I hopped on the sofa and slept- a tired but happy sleep.
Please think about all that routine stuff and enjoy it. Appreciate it. I never did really- til I lost it. And now I have a chance to enjoy it again- I am going to enjoy every drop.
Thursday, 20 January 2011
It is fun after Christmas to reflect on the gifts you receive. What your favourites are and what will end up in the Church raffle.
I loved my 'toy watch' black and white see above (mine has sparkly face), and my pandora ring from husband. I got lots of lovely bits and pieces. However, my best present was from my Jeannie. It was a very intuitive gift. She bought me a lovely notebook, a smart pen and a book called The Romancer ( on being a writer)... Wendy Robertson. I often been told to write a book. Lots of people think I should write about last year, but frankly I don't think anyone would want to read it, and I have no real desire to recount it. I didn't keep a diary, don't have a good memory for detail, and frankly would like to forget most of it. I would like to be an inspiration and I need to find a way of doing that, perhaps through the medium of a book. But detailing the pretty gruelling details of last year and treatment would probably send the majority of people fleeing to the hills. No- that won't be the subject.
I look at the notebook and know that one day soon I will be inspired. I won't start til the muse inspires me. I will keep reading the book though.
What was your favourite present?
(PS- I am doing ok - the last few days have been very positive. Progress is painfully slow but I will prevail. And I will stay positive and hopeful, and eat lots of sweeties. Heh Heh)
Friday, 14 January 2011
or is a a train?
Since my last post full of enthusiasm about resolutions, life has not been fun for Lakeland Jo or her family. I have been really poorly, ending up with an unplanned visit to the Royal Marsden. I won't bore you with all the details but the headline out of all it is that I STILL have a wound infection, and I was severely anaemic. Two units of blood and shed loads of tablets later I managed to not get admitted ( stayed with my wonderful friend Louise, and of course other half was with me) and escape after two days.
One piece of good news is that I had a CT scan and they were pleased with the results. It showed nothing sinister or worrying. This is the first scan since the operation so it was a headliner really. And it means I don't have to an MRI for now.... just clinic in February. So it's not bad really.
Today I have really started to feel better. Damned shame I have to start more antibiotics because it kills my appetite stone dead. It's not hearty now, but at least I can graze happily. I am losing weight quickly (this sounds like good news to me...) but apparently too quickly. So next week will a challenge. I need to keep munching or I start feeling really sleepy and weak.
I have much to look forward to if I can stay well and get fitter. A trip (cancelled at Xmas) to see the family. A visit to Cambridge while other half is on business. A leisure trip to London while teenager is in South Africa (yes- he is off again). It could be all go. I just need to make progress. And the Spring is coming.......
Thanks to mum for being a wonderful nurse, other half for his patience and comfort, and teenager for helping out without grizzling. I have been in bed for a couple of weeks and they have done everything. I really appreciate it. XXXX