The Chain Gang, "ME" Time, Competitions & Bag Troubles - T's Day 18 A.S.

It's two in the morning and I am AWAKE! Sigh. More on that later. Let's catch up on the holiday weekend first. Truth be told I was feeling a little sorry for myself on Friday. Thursday A and I had an Ecclescake-gate incident that made me really have to bite my lip and not submit to my overwhelming desire to club him into subconsciousness with my sauté pan, so I did plenty of standing in the garden counting to ten and telling myself to get over it. Trouble is it was all getting a bit much. I am pretty sure I have mentioned that I am not the best nurse, but being a carer means the nursing bit is only one facet on a multi-dimensional carer role. It really is that cook, cleaner, bottle washer thing, but add in housekeeper and chauffeur and laundry maid and you are starting to get there. Now, I don't for one minute want you to think that I would have anyone else doing this for A, or that I think it is a real hardship when there are so many people out there battling with cancer, I know that in respect to those problems mine are minor - but after a while they don't feel like it. I swear I fill the dishwasher a hundred times a day, and empty it and redo it etc (and do not think for a moment that every time I do I don't thank my lucky stars that a wonderful friend donated us her old dishwasher when we moved in, or I would be doing the whole lot by hand!) I am cooking every single meal from scratch, trying to keep all the laundry done, and more importantly ironed, doing the shopping, waiting on A's every need until he can better do things for himself, and cleaning the house – because I have discovered that if one single element of this list lags behind then the entire house falls into chaos within five minutes. Quite how having one person home all day, who mostly sits in an armchair in the living room can create an effect like a mini tornado has just passed through is beyond me – but believe me, it happens. I felt, to be honest, like I was on a chain gang, all I needed was the stripey uniform .... and I was determined to make some "me" time this weekend. Saturday I got up ultra early and vowed to finish all my housework by the afternoon – I swept and washed floors and the kitchen and the bathroom and did the last load of washing (I don't think there has ever been a state in the house where every single garment that needed it was washed and the laundry bin was empty – and I felt very good when I had achieved it!). By late afternoon on Saturday the house looked like a new pin and I was exhausted but pleased as I went up for my shower. Then in the evening we had a real treat - our friends B&G came round complete with half their kitchen and a cool box full of goodies to cook us both dinner - and we had the most delicious dinner. It was fab, we all sat round the kitchen table while B cooked, added by his very able and stylish assistant G, and we chatted and drank wine, and although A was somewhat pooped by the end of the evening we both smiled at what a wonderful and "normal" time we had had. As always, there was a lot of laughter. A has not been sleeping very well the last week. He seems to have an undercurrent of continual muscular pain around his wound, and much like period pain I think, when you are distracted in the day with other things going on you don't notice it too much, but at night, when the paracetamol wear off, it wakes him up and he can't get back to sleep> However, folloing Saturday's fun, that night he slept really well. Sunday dawned and I made breakfast and then I got my "me" time. I think A was watching Top Gear on Dave (which seems to be on all day every day) but I have got a bit of an unlikely crush on Jeremy and James so I don't mind so much, and I stayed in the kitchen with the radio on and made bread (how very Domestic Goddess of me - all I need is a frilly gingham pinny and a pronographic way of licking my wooden spoon and I could take on Nigella!). After bread making I hauled out some of my long neglected craft stuff and made some clay beads to make jewellery with. My mum popped in for coffee in the middle and we oohed and ahhed over new wool stuff (another recently neglected hobby) and it was just a lovely morning. After lunch we had more family visitors for a brief pop in and then I made a gorgeous roast dinner, we drank some wine and watched the West Wing. Perfect. I slept through the alarm this morning. Why an alarm on a Bank Holiday I hear you ask? Because today was Show Day - more precisely the local Village show for produce and crafts and all the other odd bits and bobs you get at an old fashioned country show. A and I had already submitted our forms to enter some photographs, and endlessly debated over what we should put in, as we were only allowed one entry in each category - and set up was this morning but had to be done between 7 and 10. That was why A clambered up the stairs this morning just after 9 to enquire if I happened to have missed the alarm. I raced out of bed, ran through the shower and into my clothes and headed down to the Show Ground. I should mention that we are relative newies to our little village - actually I think anyone who hasn't lived here for at least 20 years is still a newie, but given our paltry six months in the vicinity we are especially "shiny and new" compared to the locals, so I was somewhat trepidatious in putting our stuff up, and had no idea what to expect. There was a long, long wall full of photos when I got there (damn it, I should have been there at half past seven), but I picked the last couple of decent spaces to pin up our pictures and then headed home for some much needed tea. The rest of the morning went quickly, I made a veggie chilli, some more bread (lovin' those packets where all you have to add is the water) and then my Dad and his wife came round at midday and we had a leisurely lunch before heading to the show ground. Meanwhile A had been having Bag Trouble. Not the "Do you think the red and black shoulder bag with the black high heels or the gold clutch" type of bag trouble either. For the uninitiated amongst you a stoma bag is a pretty basic piece of kit doing a very simple but mostly effective job. It is a small plastic pouch, only available in the colours range of see through or 1950s prosthetic leg pinky beige that fastens over your stoma by means of a skin seal provided by a film of product that you put on your skin and then a glued area around the oval seal of the bag. At the bottom of the bag is a nozzle with a plug, which allows you to empty it every hour or so when it is full. So far these have worked pretty well, but today there was a problem. A is a little lopsided from surgery at the moment - where he has lost weight his stomach goes in, but where there is still swelling and bruising from the surgery he goes out - making it almost impossible to get a quick and watertight seal on the bag. By 11.30 he was two bags down and starting his third attempt. Now if it had been me, all the bags and the kit would long have been thrown out of the bathroom window in a fit of rage, but he handled it all brilliantly - just calmly sorting it out. I did wonder if he would be concerned about going to the show for a wander round, but he was happy to go - showing great bravery in the face of potential stoma trouble so I was very proud of him. When we got to the show I raced through the door and ran down to the photography area - A had won first prize! I was pleased as punch for him - the prize money came to less than £2 but he had a big red certificate, so who needed money?! We walked home after a cup of tea very pleased with ourselves, had some leftovers for supper and headed for bed, both commenting on what a wonderful weekend it had been. And then, just after half past one it happened ..... "Wake up T, it's the bag, it's leaked!" A staggered out of bed and I opened one eye at the bright light that had been switched on trying desperately to engage brain. There was much swearing as A figured out there was an airlock between his bag and the linking tube that feeds into his night bag (so he does not have to get up every hour to empty it all through the night). He headed down to the bathroom to try and remedy the situation while I wrestled with a tight zip on kingsize mattress cover, not waterproof but luckily A had woken up so the problem was relatively minor, and then cleaned the mattress, found new sheets and remade the bed ......... I hated that A looked so mortified, hated the bloody bags and hated it especially when I went to get back into bed and he headed off downstairs to the sofa ... so that I could get a good night's sleep while he waited for an hour downstairs to see if the problem would happen again. He looked a whole lot embarassed, with a soupçon of ashamed and angry too. I know that he won't come back to bed tonight and will instead sleep curled on the sofa watching reruns of QI or Mock the Week. And so I lay in the big, big bed by myself feeling a whole lot sad and very, very small. Sleep seemed impossible, and so I got up ... and here I am. Hopefully the therapeutic pounding of the keyboard has rid me of some of the tension and worry of tonight, for I keep looking at the clock, counting down the hours til I have to get up and go to work (currently down to three hours and nine minutes). Most of the time I am strong, warrior-esque, ready for anything and everything this bloody disease can throw at us, but sometimes, in the wee smalls, I just want to wrap us both up in a duvet, bury our heads underneath and pretend that none of this is happening to us - that we will not be faced with a bag problem laden future and that my beloved A need not lose any of his confidence or love of life, and we can remain the slightly crazy, adventurous, life loving, carefree people we were before faced with a future that may consider waterproof bed sheets. Night all, here's to peaceful dreams. T x