Having spent the weekend letting what I’d learnt from the consultation sink in and armed with a list of questions, I rang the Urology nurse on Monday morning and left a message on the answerphone for them to ring me. Luckily the nurse that rang me back was working from home and seemed to have all the time in the world to talk to me. It was just what I needed.
My questions ranged across the whole spectrum of things I had ahead of me. The nephrostomy, the oncologist, the operation, the chemo, everything. But there were two main things for me.
The Nephrostomy and practicalities of living with it, as there is so little information about it online.
Then there was the all important CT scan. I had my appointment for it and it was the very next day but what was most important to me was how would I hear the results. Having previously had the nasty shock of finding out about the cancer from a bog standard GP letter. I really needed to be prepared.
Firstly, to the CT scan results. I asked if I would be told the results whenever I got to see the oncologist (I hadn’t yet had a date through for that). The nurse told me that the Urology consultant would ring me when the results came through as he didn’t think it was fair for people to have to wait. That kind of put my mind at rest in that I wouldn’t have too long to wait but on the other hand I had no idea when the call would come, but what was guaranteed was that I’d be home alone when I received it.
Next, the Nephrostomy. The nurse said that when I came in to have the Nephy the stoma nurses would come and visit me on the ward to talk me through how to manage it. What?!! Whoa!! That wasn’t nearly enough notice for me to get my head prepared for it! The nurse obviously heard my concern and she said she would ask the stoma nurses to give me a ring and try and put my mind at rest.
And ring they did, about 15 minutes later and were so nice. I’d mentioned to her that I had a CT scan the following day and she invited me to go to the hospital an hour earlier and they would show me everything and talk me through it. I couldn’t have asked for more.
Tuesday arrived. The all important CT scan which would determine if I had a future. But it wasn’t until 4pm and we had the visit to the stoma nurses at 3pm.
The morning consisted of getting the shopping delivered and over to Mum’s and receiving so many good luck messages from family and friends who knew I had my scan that day.
it was while I was on a FaceTime to my daughter, discussing what time she would pick me up, that a good luck message popped up on my screen via messenger from someone that I’d never met, never spoken to and would likely never speak to or meet ….my very ex-husband’s newish girlfriend! I finished the call with my daughter, and contemplated this message for a while, and then a while longer and came to the conclusion that I was gobsmacked.
One thing I have noticed during this journey I find myself on is that I do seem to love having something to get angry about. I can’t get angry with the cancer because it was self inflicted through my smoking and I’m generally not an angry person. But the more I thought about that message, the more angry I got. I mean, on what planet would anyone think it acceptable to text a complete stranger that just happened to have once been married to your boyfriend and wish them luck for something so personal?!
I had a vague notion that I might be over reacting, but when I shared the info with my family they were all livid on my behalf. So I felt justified in my anger and I treated the message with the contempt it deserved and responded with stoney silence.
Anyway, now I’ve got that off my chest - it’s time for my appointments. The visit to the stoma nurse was pretty uneventful really. She showed us all the various contraptions. Stuck a pouch on my back to show where it would go and see if I could manage to take the nozzle off and turn the valve. I passed that test with flying colours although it would have been easier if I had smaller boobs. They tend to create a bit of a blind spot when you’re twisted in an awkward position, trying to look under you arm, slightly behind at just above hip level. Then there was this massive attachment that you strap to your leg for when your likely to want to pee a litre instead of the 30 ish mls you’re allowed to pee in your back pouch. Then came the 2 litre night bag attachment which seemed truly enormous. I said to the nurse I’d read horror stories about leaking bags or valves. ‘Yes they can do’ she said. Not the answer I wanted to hear.
she went on to explain that the back pouch needed to be changed every Monday, Wednesday and Friday. District nurses would need to come and do it, or I could go to the GP surgery for the practice nurse to do it or they could teach a family member to do it. Well now, there’s a thought. I could ask my ex-husband’s girlfriend maybe. I’d been told on the phone that they’d have some literature to give me. Well that was disappointing. It contained a drawing of the kidney with a tube coming out of it. Info on how much I should drink a day, where to order my supplies from and various different phone numbers to ring for when various different things might go wrong.
Then it was off to the CT scan in a different part of the hospital. I forgot to mention that the heavens opened just as we initially arrived at the hospital and not a brolly or coat between us. But bless my daughter, she dropped me off to wait under cover while she went to find a parking space.
I’d been told the CT scan was straightforward, no need to fast or drink as I did with the first one. I don’t know why but I assumed this meant I wouldn’t be having the contrast dye, so when I had to have a cannula fitted, well, I didn’t expect that.
The guy who did the CT was far more chatty that the lady I had on my first ever CT scan. He told me that my kidney function had dropped again from 55 to 46 (the latter was the one I had after my consultation) I told the man that I was having another kidney function test at the GP the following day and he said for me to mention that I’d had the contrast dye today.
That was my visits over for the day and now I just had to go to the GP the next day for my blood test and then wait for the phone to ring. How long that wait would be, I knew not.
So Jen dropped me of home. I waved her off. Made a cup off coffee, had a cigarette and burst into tears. I cried and cried and could not stop.
So what was the cause of this complete meltdown? Was it delayed reaction from the consultation the previous week? I don’t think so. Was it worry about the scan results? Maybe, a bit.
What it really was, was the Nephrostomy. The visit to the stoma nurse had done nothing to allay any of my fears. The bags looked enormous. I was going to be totally dependent on someone every Monday, Wednesday and Friday for the foreseeable future and worse case scenario, for the rest of my life. Would I ever be able to have my grandchildren for a sleepover again? How would I see to mini munchkin in the middle of the night while carrying a 2 litre bag of pee along with me? It reduces me to tears now just thinking about it and I have, as I write this, just 2 more sleeps or freedom.
On that happy note, I’m going to sign off the day.
