Wednesday, February 24, 2010
Well it's scan time again. Friday will hopefully be the last PET scan for a while, the one when I get injected with radio active dye.
A week later it's results time, who know's what they'll bring, I couldn't say one way or t'other!
All I can say is apart from a migraine today and a bit of a cold I feel brill. My energy level is recovering and although it's not what it was it's stacks better than it has been recently. I have a sense of humour again, I'll let everyone who knows me decide if its good or not. I'm thinking more and more about going back to work and how and what I'm going to teach. It scares the life out of me going back but then Wendy has returned to work after two lots of maternity leave and survived. I've had a lump growing in me but I doubt I could class it as similar.........mind you the three stone I've put on looks ready to drop soon!
The scan will come and go and the results will come. What they are remains to be seen, good or bad they will be results and something will happen after them. We will get through whatever they give us to deal with, me and my girls. They are amazing and without them this wouldn't have been as easy as it has been. They deserve a good result and I'll work hard to give it to them.
Love, laughter and honesty have got us this far. Long may it guide us.
Wednesday, February 17, 2010
It was with a massive amount of trepidation that I lifted the bag and carried it onto the train. We were bound for London and it scared the living daylights out of me to be honest. I was scared the hotel was going to be rubbish, we were going to get mugged or pick-pocketed, lose the train tickets or worse of all and it's a recurring nightmare, lose the kids.
Given the state of my mental health of late all these weighed on my mind and were constant companions as I fell asleep every night.
The start of the adventure
The girls were really excited about the whole thing and while Georgia was looking forward to the Natural History Museum all Carys was worried about was having tea with the Queen and what they'd be eating. We let her down lightly, she is five after all and all little girls grow into princesses who meet princes and live happily ever after. I for one am not going to burst her bubble just yet........
Wendy had done a vast amount of research and had booked the Premier Inn next to King's Cross station. It turned out to be perfect for our needs, ten minutes walk from where the train dropped us off and five minutes from the Piccadilly line underground. The tube was a worry, having tried it many years ago and hated the confines and the smells and the general grime, going back with the three most precious things in my life didn't fill me with good feelings.
Yes it was busy and smelly and loud and confusing and the home of some rather healthy looking rats. It does though serve a purpose, it carries millions of people in relative comfort to somewhere near their final destination. Once you get used to being jostled and squeezed (not in a good way) and having your toes trodden on or flattened by suitcases it is an easy way of getting from a to b and back again. I'm just glad I don't have to do it again for a while. I also understand now why so many people have the iphone, the boredom of looking out of grimy windows onto grimy walls starts to take it's toll on even the most imaginative out there. Sitting looking at a tiny screen or popping virtual bubble wrap starts to become much more attractive!
Yes Carys is Frozen like that!
We got off into the madness that is Piccadilly circus and went on an open top bus tour. It's something Wendy and I have made a tradition. Edinburgh in -2, Stratford in +2 and howling rain, London (a previous trip) +2 and howling rain and then London 2010 in +1 and cloudy! It always starts out well and we felt better prepared for this trip with ski gloves and hats and scarves. What we really needed was a roof! It was baltic and didn't quite go where we wanted to but it was ok and we learned a bit about the city.
A seasoned tube rider!
The next two days were a mixture of culture, Science museum and the Natural History, and general sight seeing, Leicester Square, Oxford street, South Kensington and Covent Garden.
We had a brill tip from a good friend, thank you Sarah, when visiting the science museum get there early and go straight to the top floor. This is where the interactive exhibits are and so we got to play for a good 45 minutes before the hoards made it up through the other floors.
By the time we were leaving London we reckon we had done about 2/3's of the science museum and a third of the natural history. we had reached saturation point for information and wow, look at that. The Natural history museum is such an amazing building, I took as many photos of the building as I did of the exhibits. I even had a bit of a chat with Jimmy Doherty off the telly (jimmy's farm) as he's been doing some really interesting programs about the environmental issues of food production and I'd like to use some of it in lessons that I'm planning to teach. Blimey said it, planning to teach, come on!
The main hall and a dinosaurs bum.
A huuuuuge piece of wood! 1335 years old.
We came home, tired and in one piece. Feet hanging off and heads spinning. We'd done it, been there, seen it, thought the t-shirt too expensive. The taxi of mum and dad was waiting for us at the station and it was in welcome comfort and privacy that we drove home. The rest of the journey had been public transport and walking.
Lots of people put this country down and that includes me, but this weekend gave me a new appreciation of what we have. We are free to travel, people have helped us (two gents got out of their seats so the girls could sit down on the tube!), we have had choices lots of choices but they are ours to make.
I went feeling scared and worried if I'd be a damp squib on the whole weekend, if my body would let me down or if I'd just be too darn tired to do anything. I have come back rejuvenated, yes it tired me, yes I was in bed no later than half eight every night and yes I missed our bed but I feel more alive now than I have for the last three months.
I needed an almighty kick up the arse to get me going and break the routine of sitting on the sofa working on the homer dint. I have been out on my bike twice, I have taken Carys to see the Princess and the frog (quite good in a walt disney kids movie style thing) and I'm still awake.
For lent I have given up watching telly until 8pm and being a grumpy arse.
Cheers London for starting the changes............
Tuesday, February 9, 2010
Who am I? It a question that I've asked myself many times over last couple of weeks. I've given myself many a stern talking to, trying to figure out why I'm such a miserable git. I should be happy, I'm alive and we had good news from the last ct scan. The lumps have responded to the radiotherapy and have reduced in size a little, they were never going to disappear but they've responded.
So why the sad face?
I feel like I have been a split personality over the last couple of weeks. I have been the public me, smiling and being positive. I have been the private me with Wendy and the girls, moody and unsure and I have been I, alone, driving, thinking, sitting, crying, wondering, surviving just my moods and my black days.
My body seems to be having the side effects from the radio therapy, 2 months after the treatment finished. For the last two weeks my rib cage has felt like it was in a big car crash and the skin on my chest and back has felt hyper sensitive. Putting clothes on hurts like bloody hell and having a shower is like rubbing my skin with nettles. Not that I've done that on purpose you have to understand, I'm not running for parliament. So sleep has been a precious commodity, once I'm off that's fine but it's when I move or the quilt moves it all starts again.
I went for acupuncture at the Cavendish Centre and it was interesting, I didn't feel anything (not even a little prick boom boom!), while I had the treatment. I felt a little better the next day and was meant to go back yesterday for the next session.
I didn't. I couldn't. I took George climbing on Saturday and decided to have a go myself, the first time since starting chemo all those months ago. I did four routes and felt that that was enough. I was pleased that I'd got to the top and hadn't fallen off. Last time I climbed I was about 15 stone, now I'm the best part of 17.5 stone and boy does it make a difference. I started to go down hill about two hours later, I'd had lunch and a snooze as my energy level just fell out of my backside. I never really recovered, I just became tetchy and emotional at the slightest thing. Even watching England beat Wales at Twickenham didn't raise a smile, I just felt like my head was getting darker and darker and my skull was becoming tighter as the game went on.
Sunday was no better, Wendy left me to lie in which should have helped but didn't. We went for a walk which usually helps but ended up causing more discomfort, particularly for Carys who fell in the river after slipping off a stepping stone which I should have been watching her across but I was taking a photo of George. Arse.
After an unproductive afternoon and yet another misunderstanding I started crying. Not like a baby, a baby knows why it's crying it's either hungry or cold or it's poo'd and it doesn't have the words to say what is wrong so it' cries and the parents figure it out. I was crying because I have a reasonable head which has a reasonable number of non swear words which I can usually string together in some sensible order, unless Guiness is involved, but I still didn't know what was wrong.
Monday morning and I went for a drive, over the Strines and down to Ladybower. Stunning countryside when you can see it, as it happened it was snowing and visibility was pants. But I didn't care, I didn't care about much, staying on the road or going off the road, getting to where I was going or not getting there. The cloud in my head was as black as night. I'm not sure when it happened but I started to think what a pathetic attitude. You have a wonderful wife and two amazing kids who would be upset and annoyed if you didn't live through this. Also the government have spent thousands trying to get me to live a bit longer.
I got to mum and dad's with the sole purpose of seeing how dad was, he's had a religion changing operation if you know what I mean. It was good to see him being so chipper and pain free after such a sensitive operation. I couldn't express how I felt to him though, I had gone there to see how he was, not for it to be about me.
As I was leaving I let my mouth go into overtime and upset mum, it was a childish thing to do, take out frustration on someone who has such an unconditional love for you. As I sat in the car sobbing I texted her and apologised. As I started to drive away she came out, I couldn't drive off and leave it the way it was that just wouldn't be right. So we sat and we talked, well she talked and I sobbed.
Finally it came out, the words got themselves in the right order and they fell out of my mouth as they fall out of my fingers onto this blog.
I'm not happy being ill but I'm not happy getting well what the f*ck is wrong with me? I just take my frustration out on the people I love, I hurt the people I love the most by being such an arse.
Once the problem had formed in my head I can start taking control of it. Mum isn't a massively religious person but she's got a deep spirituality about her and she suggested that if I was God fearing then I would believe that the challenges on this earth will test us but God would only give us challenges that he know's we are capable of fulfilling, whether we know that or not is another question. As that sank into my head she said that she hoped she was capable of living up to the challenge of the black card her son has been given.
I'm not a god fearing person there's only one person I'm scared of and that's Wend. I'm scared of losing her, of not living my life with her, of not growing old and more cantankerous with her.
So I came home and sobbed some more. I'd made my peace with mum, I cancelled the acupuncture session and I went to bed.
After waking and having a cup of tea Debbie Newby, the Lymphoma nurse specialist, rang me. I had wanted to ask her to go through my results again as there was terminology that didn't sit well in my simple brain and I wanted some clarification. As the conversation progressed I mentioned that while the care I received at the start of the journey was excellent this time now, the recovery time was very lonely. I also asked if there could be a physical rehabilitation system that would help cancer patients recover some level of fitness and whether that fitness would or could help their long term recovery. Whether anything comes from that or not I have no idea but I need to get my balance right again. My head is going a hundred miles an hour but my body is doing about five, I need to get going.
Whether I go back to the Cavendish centre I don't know, I guess I wanted a quick fix which was always going to be unlikely. But I also want to do things my way, if it fails then it's my fault not anyone else's. This makes it easier for me to live with and I do things to my standards be they better or worse than someone else I don't care, but they are my standards.
Phew it feels better to have that off my chest, perhaps I shouldn't leave it so long with out posting as it helps my head so much. Right going to chop wood in my man cave. Ug.