Sunday, October 31, 2010
It's been a great week. The girls were on holiday and mum and dad had them to stay for a couple of nights which was great, we love the girls but every now and again it's nice to have a bit of a lay in!
Wednesday Gwyn, Drew and Simon (Gwyn's eldest) called round. Now for all the times we've visited them in Wales this was the first time for Gwyn and Drew to call in on us. It was wonderful, when old friends meet and the conversation flows and the laughter is raucous. Simon has a wonderfully quick and dry sense of humour and it was such a relief to have conversations that focussed on others peoples lives and topics away from hospital and illness.
Yes we spoke of my time in hotel Hallamshire and I found it very strange as I'd forgotten things about my stay, maybe I'd blanked them out or my head had come up with a coping strategy. Whatever it was it felt very strange knowing that my memory was playing tricks. But overall the conversation was about life, normal life and normal dreams and normal ups and downs.
We ventured into town and found another wonderful meal at Aagrah. The strawberry beer before certainly hit the spot for me and the conversation and laughter were as much a tonic as any drug could ever be. It was just wonderful.
Thursday I felt good, a little tired but not exhausted, so we thought it'd be nice to go for a drive and get a butty and sit and watch the world go by. Well we got 2 miles from home and it was enough, it wasn't anything serious but my concentration was suffering and as Wend doesn't drive I couldn't ask her to take over. We bought a butty and headed home to chill. The chilling took me to bed, it took Wend to Morrisons!
Wendy made a fab kedgeree and we drank a bottle of wine, the decadence of not having the kids around............
Friday morning was a little steady for me, I had a funny little headache which was related to how fast my movements were. I think traditionally this sort of ailment would be called a hangover! It didn't interfere with my visit to Weston though. I have been setting myself little targets all the way through this experience, be it walking to the loo or brushing my teeth without any pain. A big target for me has been waiting for the consultant to say we'll see you in two weeks, to me it's a sign of progress, a sign that my body is fighting back. Well it's happened, no appointment this Friday! It felt amazing just like reaching the top of a climb or getting a new job or when the person you fancy says yes to a second date. A weight was lifted, I stood a little taller with a bigger smile than previously imaginable.
The up wasn't to stop there, a short walk over to the Hallamshire to see the Physio department was to be the icing on the cake. Last year I craved a structured return to fitness, something supported by someone who knew what they were doing rather than me beating myself into the floor. This time as I have had a transplant there is such a rehabilitation scheme which is run by the physio team at the Hallamshire.
Jo was amazingly patient and sympathetic to my impatience. Suggesting that she had seen people like me before and that although she hadn't been through anything like I had she was very understanding. She even laughed at my jokes.......I think anyway! My regime starts Monday so we'll see if I survive to tell any tale worth telling, or not as the case may be.
All this up was tempered with a little down on Saturday. We went to the pictures which was brilliant, more normality, a family going to the pictures as a treat for the end of the holidays. It all went really well until we tried to get home, an ambulance had broken down on the tram tracks which meant we had to find a bus. Walking up through town was hard, concentrating on the traffic, the crossings and the crowds made it even harder. I was starting to feel tired and stressed just as the student in an overgrown babygrow asked me for a donation. I told him no thank you, we choose a charity at the start of the year and give to them, he rattled his box and said it's a worthy cause. I replied no thank you again, to which he said any coppers will do. It just got to me the noise the people the hill that I'd never previously felt so the response was 'which bit of no do you not understand?' I know he was trying his best and he'd probably been there a while and was fed up with it all but it riled me and the fact it riled me riled me even more. If I hadn't been with the girls I don't know where the meeting of minds would have led.
It was disappointing for me because it showed how close to knackered I am. I'm learning, even when my head feels good think several times about doing anything physical. I've had a fantastic week with a little blip just to remind me of where I've come from. Next week is next week and that's where I'm going so that's what I'm focussing on. The future. Loving the now and am looking forward to the tomorrow.
Thursday, October 21, 2010
It's been a quiet week on the medical front. Well except for the tube up the nose treatment I had on Friday last week, they were looking for bugs and so the best place is the back of the nose in a cavity which I was unaware of! Not the nicest thing to have done, a tube up your nose which then taps at the back of the cavity when it's in far enough! They have suction on and a little catchment bottle into which the bogies and snot gather! Unfortunately they didn't get enough out of my right nostril so into the left they went, amazing how much your eyes can water...........
Monday was a bit of an event, I walked to school to pick up the girls with Wend. It was weird and amazing at the same time, seeing the teachers and the kids and how things have changed since my last visit.
Tuesday was a bigger event, parents evening. I made the effort to walk up again and I was so glad I did. It was hard work on my part as Georgia's class is now on the top floor of the school, something that in the past would have been a quick jog was now like Everest, slow and steady was the way and I made it without my heart pounding out of my chest too much.
Meeting Georgie's teacher was an absolute pleasure, her work has improved no end. Georgia not the teacher..... The feedback the teacher gave was great, she tries hard and is always polite and will work with anyone in the class. Her levels, that they measure children by, were little miss average but to me it's the way she works and how she interacts with the rest of the class that is more important the a tick in a box.
Carys' teacher is newly qualified and lovely but she looks knackered at the end of her first half term. I remember the feeling well, counting down the days and the hours until you can have a lay in or a proper night out, just to recharge the batteries before the next onslaught. Carys' report was great, her levels were great and her work was amazing considering her years. She also got praise for the way she worked within the class and how she interacts with the other kids.
So there we are proud as punch, our kids have got great reports from their teachers and given the year they've had it's an amazing testament to them and to Wend. We wandered across the yard and had a chat with one of the assistant head teachers. We thanked them for their help and support and praised the teachers and Georgia's in particular, she has experience of cancer in her family and has been a great support to George. The assistant head said that they were happy to help and people wanted to help the girls because they're such good kids and they're polite and lovely to work with! This is when the heart pounds and the pride inside grows.
I have praised kids at school for good lessons and they throw it back at you by being rubbish the next time. Our kids are different they get the truth about everything. My memory isn't good enough to lie anyway! So we praised them, we told them the truth we hugged them and thanked them and loved them. I also told Wendy that I have the utmost admiration for her, she's incredible and she still doesn't know how incredible she is. She's kept life real for the girls and kept routine and normality as much as possible.
The next day I crashed, I was grumpy, distant and generally irritable. I was short with the girls and distant with Wend. I had nothing left, I thought I was doing well but the truth was that I couldn't cover up my emotions. Wendy's honesty gave me a much needed kick up the bum though, it's hard hearing home truths but they needed saying. I needed it, as I can paint a very black picture when I'm tired. I have to be careful, I have to listen to my body but I almost have to pre-empt being tired. So today was a very chilled out relaxed kind of day. I'm still tired but I have to remember how much I've been through and how far I've come. Progress is being made but it's slower than I want it to be, patience grasshopper.........
Monday, October 11, 2010
If I worked on the average time to stay in isolation then I'd be coming out of hospital tomorrow. This is the fact I have to remember, I've had 8 extra days of freedom and I have to keep that in mind when I'm feeling fed up.
I was fed up on Friday as my blood counts had dropped to levels which started to cause concern. We had been warned that this may happen and I'd also started on another medication which can have the side effect of dropping my blood counts. None of these known facts prepared me for the disappointment that was printed on the piece of paper in front of me. There were columns of numbers and some had stars by them, these were the problem areas, a bit like getting a poor mark at school. I felt like I'd failed, I'd let people down, I'd let myself down. There was nothing I could do about it other than stop the medication, take it easy and rest my body and wait to see if there was an improvement by Monday.
Today is Monday and my bloods have recovered, they're better, they're up to a level that they would expect and that is safe for me to live a bit more of a normal life. Well, normal as in staying awake all day and maybe walking up stairs without the room spinning or being completely out of breath. I also mentioned that my resting heart rate was a great deal higher than I'd expect it to be. When we started on the road that is cancer my resting heart rate was 60 beats per minute. Granted I was riding to work and running and being generally very active and now I'm amazingly inactive. Plus I've had bucket loads of chemicals pumped into my body and that's going have an effect.
But and it's a big but, I forget that I've been inactive for so long, I forget that I've had six months of treatment. Weeks and weeks of time in hospital months of sitting on the sofa and an incredible amount of drugs, thank goodness for National Insurance!
I also have to remember and I was reminded vividly today, that there's always someone worse off than you. Because of my fragile immune system we go straight to the teenage unit so that I'm not exposed to too many coughs and colds of the general waiting area. The teenage unit is a humbling place, young people who've had short lives living through a massive challenge. One young lady was talking with a visitor, without being rude it was difficult not to overhear. The radio therapy she was receiving had damaged her throat and she was struggling to eat. She'd been rushed in because of the damage and it would mean a stay in over the weekend, the weekend of her birthday. A night down town had been planned and her mates were looking forward to all the festivities. All this information was shared with the visitor, a visitor of another patient. But the amazing thing was how mature she was offering advice on how to cope with the weird situation of patient-visitor relationships, thoughts on life and relationships outside of the hospital and life in general. It was a very selfless conversation on her part, perhaps it was a relief to talk about something other than her illness. I don't know but I hope she gets better before the weekend.
Like I've said before Weston park is one of those weird places where you see all walks of life going through an incredible experience. Incredibly hard physically and emotionally. I'm tired and fed up of it now I want my life back. But I have to think how much I've gone through, how much my family and friends have gone through and how far I have come. Think about taking it one hour at a time and getting better at a speed that suits my body. It's going to take time and patience but I have to think of the future.
Wednesday, October 6, 2010
Monday morning and it's doctors round time. Sunday had been ok my bloods had come back as being better than expected and so they'd said I'd be allowed out of the room and to the lift atrium. Walking to the nurses station was far enough, laying in a bed for the last three weeks or so has messed with my muscles and they've lost ability, I won't say definition as that's not really what my temple is like!
The blood count is what matters at this stage, whether I have a certain number of platelets or white blood cells. The doctors decided that as my bloods were good enough I could go home. It was as quick as that, from being allowed out of the isolation room to be allowed home in the matter of hours. My head was spinning, the emotions were so mixed, the safety of the hospital and the isolation but the joy of going home. The risks associated with coming home are minimal but the benefits way outweigh them.
The emotional support that watching my girls screaming down the path to hug me and sitting on the sofa being held down by the dog is magic. Watching Wendy sorting everything out is hard though. I'm on a serious case of rest, so I'm meant to be waited on hand and foot, the only thing I'm allowed to do is wipe my a*se. Wouldn't wish that on anyone though!
Nutritionally it's a world apart being home, the food is damn fine, it's tasty and made with love. My mouth is much better than it has been, it doesn't hurt now but there's still a distinct lack of saliva which makes bread and dry products a real no no. Imagine eating loads of cream crackers without drinking anything, that's what it's like from the first mouth full. So it's juicy food from here on in for a while, Wend makes a fab risotto and boy did that hit the spot, my stomach has shrunk which may be a blessing in disguise but doesn't help when you have a lovely dish of food in front of you!
So today we went for a check up, bloods taken and a private waiting room so we're not exposed to the great unwashed! After the usual wait we went down for the consultation.
First question from the consultant wasn't how are you or any problems? Nope it was, so we did have any chemo therapy then? It threw me for a second or two but then the blood results came out of the file. Not only have I been one of the quickest to be sent home but my platelets were the highest at this point of treatment than anyone's ever had before. Usually they expect a count of 20 by day 20 and 50 by day 50. Today my platelet count was 138! How or why I have no idea but it was.
So the next two weeks it's rest and recuperation, another check up on Friday and then all being well weekly check up's. Then it's get better, get fit and get on with my life. I'm scared that something will go wrong but I'm not going to dwell on it, too much. This is the risky bit, while my bloods are still weak (comparatively) I have to be careful of not catching a cold or getting an infection of any sort as it could make the last three weeks of life a little pointless! Oh well we see what the next few weeks bring and how my body recovers.
Saturday, October 2, 2010
Apologies for not posting before but it's been a bit up and down the last couple of weeks. Well a lot of down and lots of little heart shaped highs but mostly down.
They said this was high dose treatment and boy oh boy they weren't kidding. I can't put into words how it's felt as I have nothing to compare it with, it's so much worse than man flu it's just not funny. But when you're out of breath having walked to the toilet and showering means taking a nap after (there's a lot to shower but that's not the point!) to recover it's pants. Walking like a really old person shuffling my feet along didn't bring joy to Wendy's heart either.
I have no idea what I would have done without her unbelievable support. The love hearts are such an amazing thing to do, to have the idea and then go round people and ask for their thoughts or comments. But then she brought them a little at a time, not all at once just a few everyday and it's just been the highlight of my life. The things people have written are giving me an emotional strength that I didn't know existed. They've prompted some good outbursts of tears, cheers Jase you really know how to make a grown man cry!
It's been hardest for those few lucky enough to be visiting, Wendy, mum and dad. They have seen me at my lowest they have seen the days when I have slept and slept and slept. They have seen the blood drain from my face and the injections and the bags of chemicals going into someone they love. Which are there to kill off the most basic thing a human needs after food and water, their immune system. I'm lucky as ever because the nursing staff are looking after me, the doctors are trying to keep me alive and give me more life than no treatment would bring and if I sleep then I sleep and no one interrupts that except for injections or blood letting or observations.
I have had a good couple of days yesterday and today, I've actually drunk some fluids. Prior to this weekend my mouth was sore like the back of beyond. Most people know of the sensation when they've had a couple too many the night before and it feels like a budgerigar has moved in over night, well this little blighter had razor blades on the bottom of his feet. Not good, my mouth wouldn't open fully, speech was slow and slurred and it hurt like fucking hell. Sorry for the language but it did. The only people going near my mouth were the ones who could prescribe the good drugs, cocaine mouthwash was underwhelming as it happens!
My tummy has been a bit upset by the lack of foods, mind you it was very upset by the food it started out on, lets just say trumping has been a bit of a lottery..........I'll leave that for you to decipher.
The best day for me was Thursday. Wendy's birthday, although it would have been better waking up next to her in our bed in our house, it was fabulous seeing her dressed up to go out for lunch and I managed to time being a bit brighter with her visit. I just want to take the hurt from her heart and the girls hearts too, tie it to a rocket and launch it into space. Anyway she had a nice time and looked beautiful and the girls did a fabulous job of getting some surprises sorted for her, I'm so proud of them.
I don't want to make light of the last couple of weeks as I feel better today because it's been the worst couple of weeks of my life. But out of the worst weeks have come the best emotions, the most support the most admiration for human kind. The hearts have been a talking point for staff and myself and they've been a constant support when I wake in the middle of the night and I start to wonder. I read and I wonder no more.