Thoughts from the frontline - 34

Life is strange. And people are even more strange. And that includes me! As I think most of you know, Friday was my "results day" following on from my major surgery to remove my bladder and prostate and, hopefully the dreaded cancer that had invaded both of these organs. And as of Friday afternoon I am currently "cancer free". So we spread the news in detail to family and friends. The texts and phone calls explaining what the findings were and that it was a very aggressive T4 cancer but lymph nodes were clear. What was strange were the many different attitudes to this news from "I'm so glad it's all over, you can now get back to a normal life" through to "shame about it being T4, we'll keep our fingers crossed that it stays away, let us know what we can do". There is a big difference between people who know nothing about the intricacies of cancer and those who have taken time to listen to the detail we have told them or they have done some reading up themselves. The result is that you end up wanting to hit some people and hug others! Such is life :-) But the news didn't help me with the sleeping and Friday night to Saturday morning was a very very short slumber with me taking myself off downstairs at about 1am. A whole 2 hours of sleep, now that's not good but I know that it's all down to the pain around the pubic area that takes on a main role at night and just wakes me up. I am taking pain killers just before I go to bed but after between two and four hours they stop working and my body wakes me up. So it's downstairs for another dose of painkillers and watching about an hour or two of TV until I drift off to sleep again on the sofa. Saturday was a planned day out in town so I got myself ready and off we went. Main task being to buy a butter dish, more painkillers a few bits of food. It was lovely and sunny and I was so glad to be out in the fresh air. I wasn't pushing myself too much but I decided to go round Wiatrose with T after the first bit of shopping had been completed. Now this was a big step as the last time we'd been out I'd done the walk round town but had cried off the Waitrose trip and had sat in the car. But this time I felt good and decided to give it a go. Now you have to bear in mind that I had been told to slowly build up the exercise and the hour walk round town was like a marathon to me. But I was determined to try a bit harder today. What I hadn't calculated was how far a walk it was round the supermarket. Up and down those isles. Up and down, Up and down. It felt like a mile of walking and by the time we got back to the car I was totally pooped! And I was glad that we were now on our way home so that I could rest. This getting fitter is hard work folks! And so I did nothing for the rest of the day except the hourly walk upstairs to empty my stoma bag. Surely I'd be exhausted enough to sleep through the night? And that's a big NO. God, I hate this bit. Why oh why can't I get a good nights sleep? And now I've got this bad back ache to add to my woes. I should be Mr Happy after the mainly good results we got on Friday and I am but I just hate being knackered all the time and not being able to do normal things. I just so want to get healthy again, to a stage when I can have a normal life. Yes fighting the cancer at all the stages but being normal in between but I'm not there yet. I'm still "a patient", at home but still needing care and attention. And, you know what? I hate it. Hate, hate, hate it. I know it's just a matter of time and it's only been 16 days since I came out of hospital. I was told that it would be between 3 and 6 months before I was back to normal. Help!!!!!!!! But hey, I've got to just make the most of each day and I do that. So I decide that I would go out on another planned excursion on Sunday and this time it was to the open day at a local allotments. A day organised by our friend Catherine with, I think, some help from her other half Roger. But before we left for that trip I was going to follow the advice of my consultant and have a nice long hot bath. And all free and stoma bagless giving me a chance to have that wonderful feeling of being free for a while and being able to make sure that the area round the stoma was nice and clean and glue free. And joy of joy, as predicted by the consultant, one of my stents into the stoma came out in the bath! I gave the second one a tug but it wasn't moving. Wont be long now though It was progress and good progress. And I loved the bath. And I loved the freedom feeling. OK the stoma could be leaking small amounts of pee into the bath but I don't care! It just felt good to be laying there, without a care in the world. So off we went to the allotments open day. We parked quite close but there was a short walk to start with and then we find that the stall are distributed all round the allotments. So, you've guessed right, another afternoon of marathon walking! But it was good fun. Tea from a small cardboard cup and a muffin to go with it. A go on the prize draw and chat after chat with a few friends who had also turned up. And the weather was just perfect, not too hot and not too cold. But I did stop for a rest after a while so that T and our friend Chrissy Sue could go off and look at the sheds around all the plots. Women are strange. But when we did get home later I was exhausted again and this time I had a bad back to add to my woes. As usual T came to the rescue with a massage and a hot water bottle and advice on painkillers and sleep provided by Chrissy Sue on their "shed walk". Now Chrissy Sue is a nurse so I would take up her advice later. The back was killing me most of the evening but was easing off as we came towards bedtime. It had been a day of fun and smiles but it had taken it out of me. A day when I had also not been in the mood for food which wasn't going to help but at least I was off to bed with my fingers crossed for a good nights sleep Andrew xx