Sorry for the delay in writing this blog. Have been finding the new site a bit of a trial for many reasons but will stick with it as I'm sure that "admin" will get it all sorted in the end!
Anyway, back to the story...
So, the fashion shoot of the backs of my eyes had been done and we now waited for the appointment on Wednesday with the renal specialist. An afternoon appointment so we twiddled our fingers and toes a bit in the morning, a bit of paperwork and a short trip to the shops and we soon needed to get on our way to see if we could get a parking place at the hospital. I'm not sure what it's like where you are but getting a parking place during the afternoon is a nightmare. After 5pm when the staff start to go home it's fine but before then I'm sure that you have a better chance of winning the lottery!
And it only took up 4 trips round the car park before we found a place for our little car!
Walking into the reception area we booked in with just two minutes spare and I was called almost at once to be weighed and have my blood pressure taken. Wow! I had lost two stones since just before the operation! Much better than Weight Watchers! Just have a seven hour operation and have major organs removed and the weight just drops off!!!
Just time to get myself a plastic cup of iced water (a big plus for appointments in the renal units is that they have an ice machine for their dialysis patients) when the doctor calls me in. "Good news" he says, "looks like your kidneys are nearly back to normal. We're very pleased with your progress." as he looks through the latest scan, slide by slide. A brief chat and then we agree that I will have another appointment in about three months to make sure that all is still ok then if it is he will then say his goodbyes. Yippie - brilliant news :-)
And so it was a smiley A and a smiley T that travelled home that afternoon, not worried about the rush hour traffic, but that pleasant glow of something going right for a change.
But then the Wednesday turned into the Thursday of last week and I got the phone call. "Hi Andrew, it's Krystina here" (my specialist Macmillan nurse) "I'm not sure if you were told but we spotted some inflammation between your stomach and your bowel during the last scan, the one when you were in with your UTI, well we'd like to get it checked out so we're going to get you referred to the specialist team for an endoscopy so that they can have a good look at it and see what the problem is."
"Err, ok" I say and then it takes me a few seconds before I can start to think straight again and ask "should I be worried?"
"We don't think so" she says "but better to be safe than sorry. Most probably it's either connected to the infection you had or as a result of the operation".
A few other general words of discussion and the phone call ended with me still feeling a mixture of relief that they didn't seem to be worried and a panic feeling of worry from my side that it could be serious. Bum, bum, bum. Why can't I just be well for at least a short piece of time. yet more appointments and treatment. It is not fair.
An hour later I was in less of a panic after I replayed the actual conversation in my head. after all they were just being safe and protective over me and if they had been worried I'm sure that I would already be on my way into hospital rather than having just been told that they were going to write to my GP so that he could write to the endoscopy team to arrange an appointment. They sure weren't in a panic so best that I wasn't!
When T got back a little later I told her about the call. I'm sure I explained all in a totally calm way but she didn't look or act as calm as I wanted her to be. I knew what a worried face looked like and I say one in front of me that evening.
And so our daily conversations with friends and family now had to include the story of the planned "camera down the throat" story in addition to how much walking I was doing and how I was getting on with my stoma bag. Strange but all the progress I was making was now over shadowed by the latest news.
But it was a story that would keep in the headlines for sometime as it took until yesterday (24th Sept) for the appointment letter to come through only for it not to be an appointment letter but a letter telling me who to call to get an appointment!!! But at least now it's booked in, A's throat, stomach and intestines will be caught on camera on the 8th October. Sure doesn't look like they're in a panic so I just got wait and stay calm!
But the news of this latest problem was the straw that broke the back finally with T and she had to admit that she was having a difficult time with all of this. My rock since the first diagnosis, working as normal then looking after me 24/7 on top of all the worry was attacked from three sides at once with good friends and family telling her that if she didn't slow down and take some time off work that she would end up having a breakdown. Having managed to persuade her to have a couple of days off we then even managed to get her to go and see our lovely local doctors. Now they suggested that she should be signed off from work for a month but she panicked at this but in the end agreed to be off for a further week and then go back and see the doctor again. And so it was last Friday that we went to have a chat with the GP again. T tried to put on a strong act again but she did end up starting to cry and had to fight hard to hold it all in so it wasn't surprising that he signed her off for another week.
I am convinced that this cancer thing is more difficult for you carers out there. You have all the worry but combined with having to take on a larger share of the day to day normal things whilst feeling that you don't have any control over the future. Us patients are so glad we have you in our lives. From my side I would hate to be having to do this alone. Thank you.
And so we are spending our days together at the moment. In a period of stasis whilst waiting for the endoscopy to see what all that is about, then waiting for the next CT scan on the 2nd November to see if I'm still clear of the cancer.
Waiting and waiting but we soon start to put it all back in perspective. T is looking a lot more relaxed as the days off work start to take effect and my brain starts to clear of the post op lethargy as we start to do things together. Shopping starts to become fun as I can now walk more than just 100 yards. And we start going out with friends and feel normal again.
It's been a dip in the progress but we're moving in the right direction again, the sun is shining, T has the next appointment with the GP this afternoon to decide whether or not she can go back to work next week, I'm having my haircut later this afternoon, out with friends on Saturday and then again on Sunday.
Today I am smiling at life. And tomorrow I plan to do the same.
Andrew xx
