What, standing up?!...Genius!

(First Published February 2020)

Did someone say genius? Me…..?  Well, nearly, but sadly not.

One of the changes to my day to day life since having my diseased bladder removed last September is the regular changing of my urostomy bag (aka wee bag or bag for life.) This I do every two or three days depending how busy I am.  There are several different bag manufacturers out there and a variety of different designs.  As we are all different shapes it can take a little time finding the products that suit our individual contours.  I am very fortunate in that the make and model of bag I first used in hospital is the same one I currently use. They have always been easy to fit, comfortable and, most importantly, don’t leak!

One of my many faults is always thinking that I know best or can find a better way of doing things. The changing of the bag has proven to be no different.  It came to me last week that ultimate comfort could be achieved by attaching the new bag whilst standing up - minimising gut creasage etc. etc. I was delighted to find that I achieved a fantastic fit and the most comfortable bag change to date. My elevated status was returned to normal once I spent a couple of hours sitting down. Gut creasage! The natural creasing of the skin when in the sitting position caused a creasing in my new, ultimately comfortable seal of the bag and, for the first time, I felt an unwanted trickle down my midriff. Fortunately it was only a dribble and I was at home so a lesson was quickly learnt and I’m now back to bag changing whilst sitting on the side of the bed and, fortunately, back to being leak free.  Long may it last!

For those that don’t know I’ll give a quick rundown of what a bag change for me involves.  My first ever bag change was on the third day in hospital following my operation. For the first couple of days the lovely stoma nurses did the honours as I was off with the fairies.  My first thought was that it is a similar operation to changing the dust bag on a Henry vacuum cleaner albeit a smaller and less dusty process.  A bit of magic adhesive removal spray is used to loosen the super sticky glue keeping the bag attached to the skin and the bag is removed. I use an adhesive removal wipe to get rid of any sticky residue on the skin. The area is then cleaned with just warm water and thoroughly dried.  The protective plastic backing is then removed from the new bag, exposing the super sticky back, and the bag is carefully positioned with the stoma poking through a pre cut hole a fraction larger than the stoma itself thus enabling all wee to be collected in the bag with, hopefully, little or none coming into contact with the skin. There are a variety of creams and wipes to assist with sore skin etc. but I’m yet to need these. And that’s it.  It takes no more than two or three minutes.  I do try and be very organised and have everything I need to hand when it’s time for a bag change. I generally do it straight after a shower and make sure I haven’t had a drink for an hour or so as there is no control over flow!

I find that I am going to the toilet more frequently than I used to, except possibly when my bladder infection was at its worst. There are two main reasons for this. Firstly my external collection device only has a capacity of roughly 250ml. It  makes for an easier and more comfortable life to make sure it is emptied when it is a third to half full, otherwise it can pull a bit against the stoma, leaks become more of a risk and it can look as if you are hiding a water balloon under your jumper.  Secondly, to give my kidneys the greatest chance of staying healthy I try and get a minimum of two litres of fluids through me every day.  Half an hour after my two large cups of coffee in the morning and I can be to and fro from the bathroom every 15 minutes.

I finally returned to work in early January.  As a Chef my work can be fairly physical so I did have concerns that I might struggle.  Fortunately it has all worked fine so far.  As I work on a freelance basis I am able to pick the hours that I do and have averaged three days a week so far. That is about to go up to four days and, hopefully, by the time Spring shows its face I will be up to full time. It’s a very fine line between not overdoing it but earning enough to survive.  The fact that I have cancer doesn’t stop the usual problems in life coming at me.  Since Christmas our dishwasher has broken down (a very high class problem I am well aware!) our heating broke down and due to the excessive rain plus the fact that we live on clay, the soakaway from our septic tank doesn’t want to soak away!  The first two problems are just about manageable but the third one could possibly cost in excess of £10,000 to remedy. An Environmental engineer is investigating and insurance policies are being scrutinised and I am desperately hoping that I don’t require any further surgery in the near future.

Having pushed myself a bit too hard before Christmas and ended up with unwanted aches and pains my routine is now different.  As I spend my working days on my feet and am pretty active, for now this has become my exercise.  I can manage the eight hour working days but for the rest of the time I feel a level of fatigue and general exhaustion that I haven’t experienced before.  I am well aware that this is due both to the surgery plus the fact that my levels of fitness will have dropped dramatically. It doesn’t unduly bother me.  The weather has been so rubbish recently that I’m hardly champing at the bit to get outdoors.  My body would seem to be craving the rest I wouldn’t allow it before Christmas and it can have it. I am quite happy with my own company and can easily get through a day with a mixture of television watching, reading, listening to the radio or music in general and playing my guitars (plus, of course, the odd bit of washing up etc.)  I am confident that as the bluebells start to show their faces I will be that much further into my recovery and ready to start getting some serious miles under my belt again.

Regular hospital visits are also a part of my new routine.  Every twelve weeks I need to have a flexible cystoscopy (camera shoved up my bits) to check there is no cancer in my (redundant) urethra.  The first of these was in January and gladly showed nothing untoward.  I’d had the procedure twice previously in the days when I had a bladder and it was no more than uncomfortable.  I found the procedure this time, without bladder, really quite painful.  Part of the procedure involves pumping water into the area.  When you have a bladder the water has somewhere to go.  When you only have a piddly little tube it is going to get stretched - ouch.  It is only sore for a matter of seconds though and, as with all these various procedures, it is far better than the alternative.  I still have some cancer residing in my ureter.  My surgeon assures me that this doesn’t generally prove to be a problem.  They don’t know quite why but think it may be because it is living in an aggressive environment with a constant stream of urine running over it.  I am also currently having CT scans twice a year so should anything nasty start to happen they will hopefully be able to deal with it before too much damage is done.

I have given plenty of thought to the cancer in my body and have come to the bizarre conclusion that it actually takes a lot of pressure off me.  Had I received the cherished cancer free diagnosis following my surgery I’m guessing that I would be fearful of every checkup and scared of any unusual aches or pains that come my way in case it had returned.  As it is I just take it all as it comes.  I’ve never been any good at fighting.  I learnt a long time ago that anything I fight tends to fight back. Worry and anxiety is more than capable of making me ill in it’s own right so I don’t want to subconsciously add things to my list of ailments.  I am very fortunate to be in a fantastic system that can boast some extremely knowledgeable and skilled individuals so I am optimistic that whatever comes my way I have the best chance of coming through it.  Although it is impossible to know, I think it is likely that in the next few months I will officially be living on extra time and that thought puts a big smile on my face.