Cancer 44

I got angry today and swore at someone on the telephone. I don’t regret it. He really got to me. I do not normally experience high levels of stress. Having cancer is sometimes stressful of course but usually I manage perfectly well. It is the smaller troubles that sometimes get to me, like people who pull in to parking spaces instead of reversing, or the smell of coffee at breakfast or those ridiculous extending leads that people who shouldn’t have dogs because they haven’t trained them use with their untrained dogs.

As I have said before, my treatment starts soon, but there is a period we can go on holiday before it starts so we are trying to sort out where to go. One of the limiting factors regarding travel is my stoma. I need sufficient supplies to keep me going while I am away. As a relative beginner with a stoma I am frightened of running out of bags. It would not be a pretty sight, an unprotected stoma just below my left ribs oozing shit at unpredictable intervals like an untrained geyser. It would make a mess of my clothing, might look unsightly in a nice restaurant and as for going swimming…?

I use around 3 bags a day. We are hoping to go away for about 10 days from Tuesday, and I do not have enough bags for the full period. I put in an order on 22 May for new supplies (or my stoma nurse did). I saw the GP had authorised the prescription on 23 May, so I assumed I would receive everything. I received everything except the bags (waste bags, anti-stick spray, dry wipes, and so on). Having not received the bags I contacted the company supplying them and it turnes out the GP authorised 10 bags instead of 10 boxes of (10) bags. A simple error, but the company neither informed me nor the GP that there was a problem. Today on the telephone to the company I tried to sort things out, but it was not to be. After going backwards and forward, with the result that the phone person left me permanently on hold (I put the phone down after 15 minutes of that) I tried the text thingy and the text person suggested that a) I contact my GP about the problem and b) that I get stoma bags from my local hospital, I was fuming. This should not be my problem. At the same time the wife phoned the GP who promised they would send the right prescription to the company today so the bags would arrive before we go away.

As the wife suggested, at one point I unsuccessfully used the argument that people are not rationed in their use of toilet paper so why was I rationed in the use of stoma bags? I could cobble the other components together to manage the stoma but not the bags themselves, which adhere to the skin surrounding the stoma forming an excellent seal so that there is no smell and no leakage. If I could predict when the stoma was going to erupt I could manage with tissues in some way, but it is not predictable. It usually goes off in the early hours, but also intermittently during the day. I have no control as there is no sphincter. It is the same for wind. It just goes off. Others can hear it because it can sound like a real fart, though there is no smell because there is a charcoal filter. The best bit is when I leave the stoma bag off for time to let the skin breathe. I always have a tissue to hand for when it activates. And it does. Especially in the early hours. I know you love to hear about this fascinating subject. Sitting there with a tissue does have similarities to the good old days when I used a toilet, sitting there in private reading a book or looking at my phone. Now I sit on a settee holding a tissue and looking at my phone.

I digress. My very high stress levels from the telephone call and the very poor responses I was receiving (the person often left long gaps because they didn’t know how to answer. Very rude – which is why I don’t regret using a swear word) were dissipated immediately on telephoning my stoma nurse who immediately sorted things out by saying she will bring me some bags tomorrow. Problem solved again by the wonderful staff at Derby hospital!