Friday, October 30, 2009
It was a weird floaty walk that carried me downstairs to the CT scanning reception. I had to check on my footing going down the stairs, the same stairs that I could hardly walk up or down during chemo were now easy.
The waiting room in scanning reception has some great magazines and feels light and airy, which considering that it's subterranean is quite a feat. Wendy set off for home to start spreading the news, there was no point in her waiting with me and Anita and the boys had come up so it was right for her to spend time with them.
I was feeling like I'd been given another chance and that everything was going perfectly today, even the scan I had didn't need any injections, so I thought.
When you get called through by one of the nurses part of you is nervous but part is just excited to get started. Having had so many scans on this journey they hold very little interest for me now but this was a little different. This scan is the one that allows the radiotherapy team to plan how and where they are going to zap me so it has to be really accurate. This means they measure where you are and how your head is held and they also mark on you so they can line the machine up time and again.
So top off and lay down on the carbon fibre bed (bet Jenson Button hasn't got one of those!), which in an air conditioned room is pretty flipping cold, glad it was just a top off job! The senior scanning blokey comes in and looks at me and looks at the scanner and says "Sorry we'll have to use the other one", other what I'm thinking, "You're not going to fit through this scanner". Cheeky blighter, I know I've put on weight but that's a bit harsh. "It's your shoulders, they're too wide, the other scanner is bigger." Oh ok my shoulders that's better, "You could get some goose fat or something", why I said it I have no idea but I did. Nope they didn't get any goose fat, nor did they laugh, I'll not give up the day job then!
Top back on and through to another (much) bigger scanner. Top off and lay down on another cold carbon fibre bed. Then came the measuring, from my chin to my chest and then they used a laser to line my head and spine up. Out come the marked pens and I feel like one of those boxes with a cut here line to get the save 5p coupon. I wondered if they were permanent marker but they're not so then comes the ink and the needle and ow, my first tattoo, ow, my second tattoo and ooh you little.........., my third tattoo. They're not exciting like a skull or anything they're just dots so they can line me up reliably and accurately every time.
Not that there was much pressure on the consultation yesterday but for me it could have been the beginning of the end. Having been told on Tuesday that Radiotherapy was only a possibility was like taking a safety net out from under me. It clarified my mind, gone were all the thoughts of going to Sweden for Charlie and V's wedding, the wondering if my girls grow up happy and contented, how Wendy would be and if I could stay as a ghost and protect them!
I don't think I've been close to death, I have a healthy respect for it as you're dead for a really long time, but I don't feel scared of it. I do feel scared of leaving people though and not seeing them or holding them close. Important people, family and friends. Listening to their laughs and conversations or seeing their faces as they tell stories about their day. I feel scared of leaving the world as well, I love the feeling of the sun or the wind or the rain or the mist or the snow on my face. The feeling of the early morning air filling your lungs as you cycle to work on a crisp and cold autumn morning, how it hurts but then becomes the norm and it wakes you better than any coffee ever ground. Seeing the leaves turn in the autumn and then reappear in the spring.
We have amazing lives, an amazing world to live in and I felt like I was going to miss it. Then Dr Thanvi said there shouldn't be a problem with giving me radiotherapy. I'm sorry can you just run that by us a again.........Radiotherapy is good to go, Houston we no longer have a problem. I started to smile and Wendy just looked like a ten ton weight had risen from her shoulders. We went through the side effects, 1 percent increase chance of cancer in about 20 years time, hey if I get 20 more years then that's a huge bonus. The way I was feeling that morning if he'd said 5 years more then I'd have taken that so 20 well lets just say I bought a lottery ticket!
You know sometimes when you meet a person you're going to get on with and Dr Thanvi is one of those people. Straight talking and immune to my jokes (amazing as that sounds), he showed us my PET scan and where the furballs are. He went through how they are going to zap the little bar stewards and how it may effect my lungs but as I'm young and healthy, I like him all the more for that, it should have minimal effect on other tissues. He also asked if I could have a scan done there and then which he organised and it felt like we were doing something again, we were starting a new chapter. Rather than it being the beginning of the end it was the beginning of a new start.
Wednesday, October 28, 2009
That's what I had last night, don't ask me why but I slept better than I had for a week. Wendy didn't, understandably.
Last night I went over to a neighbours to explain that I wouldn't be working on the allotment. This morning we talked it through and I came to the conclusion that I'm alive and therefore I'm going to live it.
So today has gone. The numbness is less numb. The head is a little clearer and doesn't hurt as much. The heart still feels like it's breaking but then there is so much emotion weighing on tomorrows meeting with the radiographer.
Talking to Charlie on skype this morning was hard, so hard, he like so many people expected good news. The news that the radio therapy is only a possible takes some explaining and it hurts every time I explain it. Part of my head was wondering when, if, I see him again, whether we get to go to his wedding next year. If we'll ever ride together again and eat curry and drink beer and talk bikes and b*ll*cks. The other part was thinking about getting my head straight and getting to the point where I get on with living life.
The rest of the day has been kind of normal, playing with the girls and learning how to set up a Wii. Chatting to Gareth and sorting out for the allotment day tomorrow, fixing a sensor for the light in the conservatory and I even went out on my bike. Normal is good, normal is keeping me sane at the moment.
At the start of yesterday I was starting to worry about going back to work, getting my lesson sorted and trying to think of names and timings. Now I'm not stressing about work, to be honest I don't feel very stressed at all and I understand why. Work is something that I can control, I can be good or rubbish and that option lays in my hands. My furball is not under my control, it's just something that is happening regardless of my actions. So there's b*gger all point in getting stressed about it.
Lets see what tomorrow brings.......
Tuesday, October 27, 2009
cancer 1 chemo 0
However you look at it today was pants. The tumours are still alive. The chemo has had the effect of reducing their size and probably slowing their progress but it hasn't killed them. A*se biscuits.
So the next step is to have a consultation with the radiographer and see if radio therapy is possible. I say possible because they dropped a showbiz bombshell today, radio therapy may not be possible if it will cause too much damage to the lungs. So something that had been in the back of my mind a bit of a reserve measure but pretty much a keeper has now disintegrated into a possibility. Tops.
So the roller coaster continues to duck and dive, from the high of the last couple of weeks when I've felt brilliant to today when we had to tell the girls that it's not worked as we'd hoped. I had kept it together until then, it's difficult sharing your emotions with your wife when there's standing room only on the bus.........
I nearly cried on the drive over to mum and dads, how do you phrase it, what do you say, do you say anything at all? Our girls are amazing and are product of love, honesty and laughter. They have been so strong through this, they laugh and chat and take the mickey out of my grey/white hairs. They beat me up and they wind me up but they are so full of life and their souls are so innocent that they shouldn't have to have crappy news. But the honesty has to keep going and so on the floor of mum and dad's kitchen we had a family cry. Georgia understands more than Carys but she also bottles more up so it's so important that we keep her fully informed. There's been times when she's overheard something and then worried herself about it. So it was so important to tell her the truth.
The treatment hasn't worked and now I have to have some more.
The more it's said the more it sinks in to my skull so it was a little easier explaining to mum and dad. I also put in the details about the radiotherapy and the ifs, buts and maybes surrounding it.
I have an appointment on Thursday to see the radiographer. I asked if it could be another day as I'd booked a brush cutter to get started on the allotment with Rich, a friend with whom we're sharing an allotment. My consultant still remembers me shifting a ton of pea gravel the day before my first chemo so wonders if I'm at all sane..........answers on a postcard to that one.
All this is sh*t but the worst thing is the look in Wendy's eyes. The disappointment and the fear of seeing me go through something else, another treatment with unknown side effects. The wonder of whether the next treatment works or not. For me it's easy, I go they tell me what to do, they pump drugs into me or fry me or whatever is coming next and I go home and get looked after by my amazing family. But Wendy is the one the only one who sees everything I go through. She's the only one who really knows me as I am now and how to help or cheer up this lump of hair and gristle. But who helps her? (Wendy says lots of people!) I wish she didn't have to go through this. Not many options though so I'll stop being moody and crap and get on with getting on.
See what Thursday brings.
Monday, October 26, 2009
For the first time in ages I needed to trim my beard. I'm taking it as a good sign.
The past couple of weeks have been such a waiting game, waiting for the scan and now waiting for tomorrow for the results. It's been a busy (comparatively speaking) couple of weeks. I've had more energy, day by day and my head is back to it's busy self. I've been making phone calls, they were hard before as I'd get tired after five minutes and then it was an effort not to show the person that I wasn't always listening!
I called in to school again which was good but weird, I guess I'll now a little better tomorrow how long it'll be before I'm back. It's going to be an interesting exercise in pacing myself when I do go back, relearning all my lessons and the timings, remembering names (kids and staff alike) and having enough energy to do all of the above!
I found myself in Weston Park for an unscheduled stop this week as I seem to have picked up a bit of a chest infection. It was quite an emotional trip as although I didn't get any news or treatment, other than antibiotics, I got to talk with a couple of people that previously I'd just spoken to in passing. A lady who travelled in from Derbyshire every week for her chemo tablets, she'd been there when I went in for my first treatment and it was lovely to talk to her even though I found she'd be on these tablets for the rest of her life. I hope they've ordered plenty! The other conversation was a lovely couple of ladies who had been laughing their heads off at my first attempt to fill in a form for the pharmacist early on in my treatment. We met in the pharmacy again and had a good old chinwag about bread and butter pudding and teaching and life. It was just nice to be reminded that all the while we are people as well as patients.
The most emotional for me though was overheard in the waiting room. A lady was telling her heavily pregnant daughter that she wouldn't have chemo as she'd lose her hair nor would she have surgery for obvious reasons. It upset me and as if I could have had surgery to save me going through chemo then I would have and as for the hair well most of you have seen my thoughts on that. It saddened me as there was a human being not wanting to go through something that may prolong her life and give her longer with her daughter and unborn grand child because of the way she would look during treatment. I appreciate that for a lady the loss of hair is an emotional nightmare but it's not what the majority of blokes want either, it's just something that we have more chance of having to live with. Personally I never ever want to be bald again but if it happens then so be it. I hope she finds a treatment that suits her..........
It's been a brilliant couple of weeks as well, the kids are amazing and great fun. I've been getting fitter so we've been going for walks and playing more than has been possible. Mum and dad have bought me some tool racking for the cellar which is fab. I know it sounds sad but it means I can get organised and tidy things up rather than just wishing I had a cellar fairy, that probably sounds wrong, to tidy up. I've also been out with the boys for a curry and a beer, I was completely shattered the next day but it was great not being the bald weird looking one in the corner, at least I'm not bald anymore!
Tomorrow is results day, whether I sleep tonight or not is any ones guess. As for predictions, it'll be what it is, I'll either need radio therapy or not. The only thing I'm scared of is the scan showing up more than they were expecting and that the chemo hasn't been as effective as they wanted. But then that's me being dramatic and a bit stressy about things.
Like I say, it'll be what it is. Bring on tomorrow.
Friday, October 9, 2009
Has a lot to answer for really. The video is kind of how I am at the moment. I feel amazing compared to how I felt a week ago and as for a month ago I feel on top of the world. The only problem is I go at it like a wild thing (well kind of) then my stamina leaves, it doesn't just leave it f**ks off!
Anyhow, I'm loving not being on chemo, my hair is coming back which is nice. You don't realise the job hair does, especially the hair that most people don't acknowledge, I'm talking about nasal hair not what you were thinking! Nasal hair stops particles going into your nose and it also stops your nostrils sticking together! As for the hair you were thinking about, man alive I'm so glad it wasn't a really hot summer. Enough said I think.
Well we've got a date for the next scan, 23rd October is when I'll be glowing like the underneath of a chavs corsa. Results will be on the 27th, not going to stress about it as there's nothing I can do about it now.
Thursday, October 1, 2009
Who am I? What do I do now? Should I be happy, sad, emotional?
I know who I am, obviously, but for the last six months or so I've been a bloke on chemo. A regular visit for a day in the comfy electric (reclining not USA gaol style) chairs having drugs and tea and biscuits. The steroids start in the morning, four foul tasting little tablets which mess with my distance perception (no driving), up my appetite (food, need food now, no not the healthy stuff, the salty snacky fatty type stuff, high in flavour low in goodness), and boost my energy just as the chemo starts to drag it down. The blood boosting injections start the day after the steroids finish, a regular visit from the district nurse (black coffee no sugar). My mood would drop on the tuesday after the steroids finish, try to keep level for the girls and Wendy, not fair on them to be too grumpy for no apparent reason.
But that routine has suddenly been taken out from under me. I'd got used to it, as much as I hated it and love the fact that I won't be having all those drugs coursing through my failing veins. I won't be peeing Irn Bru for a day after the chemo. I won't be quite so completely knackered. I won't have to find a conversation to have with complete strangers who are going through something similar or worse than me. I won't have to watch as women have cold caps fitted to try and prevent hair loss. These caps look like the things jockey's wear and come straight from the freezer, they change the blood flow around the hair follicles hopefully stopping them falling out. I'm amazed at the pain that people will go through to maintain their hair. But I fully understand how much more important hair is to women than it is to men, loads of people say I look younger with no hair! Have chemo look younger......... But for women hair is much more than a way or keeping warm, it can be an identity in itself and I admire the determination and the suffering that the women went through to keep some normality in their life. I won't be having mum and dad coming to pick me up, mum seeing the pain and dad seeing it but trying not to acknowledge it.
All those things are familiar to me now, they have been my life, the normal bits which I write about on here have been the special times. They have been the minority, they've meant more and they have been all the more special for the simple reason that I crave them, I crave normal.
Now I have to change, I have four weeks in which to start getting back to being me. The hospital reckon it'll take six maybe ten weeks before my body recovers fully from the chemo. Then I can start getting fit again and working on being normal, so long as I don't need radio-therapy. The four weeks will take me to the results of the next PET scan, four weeks in which I can worry about the result or get on with getting on.
Monday I start getting on with getting on. I'm going to savour tomorrow. Savour the fact that I can be outside, I may go and take a picnic and just sit outside somewhere. When you're hooked up to a drip and you take it every where, toilet included, you yearn for the feel of the sun on your face or the wind in your.....oops......on your head and even the rain, the sweet rain. That sounds like a plan, cheese and pickle salad sandwich, a bag of crisps and a bottle of water and a windswept hillside somewhere. Sounds like the start of something good.
As for my emotions, well they're close to my chest. I had a cry last night, I know it was Wend's birthday and I shouldn't be sad but I was. I felt like I was luckier than I deserved to be, to have got through stage one relatively unscathed. I've had very few side effects and I know how lucky I've been, seeing people who can't eat and drink, who have sores in their mouths, who can't breath properly without tubes up their nose. If I was religious I'd thank my god, whichever I believed in, but I'm not so I'll just be grateful to who ever will listen! I'm sure I'll start crying at some piece of music or something on tv and I won't have a reason just the time will be right. Until then I'll get on with life..........and whatever that brings.