- Another CT scan after the sixth treatment.
- If more shrinkage is apparent then I'll have the full eight sessions.
- If no more shrinkage then I'll have another PET scan which will show if the cancer is dead or alive.
- If dead (the cancer not me!) then yippee party on, but with three monthly clinics sessions for the first year and four monthly for the second year as there is an increased risk of it returning in the first two years.
- If not dead then I'll start on radio therapy the details of which I don't know yet, to be honest I don't want to know them either!
Tuesday, July 28, 2009
Yes you read correctly I now have two furballs. Well technically I've always had two, just that they were squashed together and looked like one on all the scans! (Imagine two balloons inflated so they squash together, then deflate both bit by bit but don't move them).
So by the fact that we can see two means there has been shrinkage. One has shrunk by approximately 30 percent and the other by approximately 40 percent. Yippee.
I went today wanting shrinkage or some sort. I got it. I feel emotionally drained by it now though. Don't know why but just feel kind of flat.
Anyhow the future goes something like this:
I'll get there, we'll get there, when I'm not sure but we will and we'll continue to get on with life because it's well worth living.
Thank you for all the support so far to everyone and even the smallest thing like sending me a text or email gives me a lift. Sometimes a very welcome experience! I'm very lucky to know some very wonderful people.
Friday, July 24, 2009
Wendy and her wonderful sister Anita
I think it's fair to say that when I first went to Wales with Wend I was a bit unprepared. I was a city boy as much as I didn't think it or want to admit it I was and I'm lucky Wend could see my potential!
I don't think Anita and Jason knew how to take me or my cowboy boots and I wasn't sure how to take some of the narrow roads round there. Never mind that they didn't get me they welcomed me in to there home and their lives and made me feel part of the family.
That was 14 years ago now and I think it's fair to say I've chilled out quite a lot and have become more accustomed to the ways of the countryside, leave your watch at home (you get there when you get there), make sure you have milk when passing the 'local' shop, don't use your indicators when driving, smile more, breath more (it may smell of the sea or the hills or of sheep but it's better than exhausts), laugh more, forget about trying to pronounce any place names and get used to the changeable weather!
When I was diagnosed it was the Welsh contingent that had to have the news by phone which is rubbish. Telling someone that particular news by phone is cr*p, you can't be with them, you can't hold them and reassure them, nor can you be held or reassured back.
I guess this blog was initially set up so that people in our lives could see how things were and didn't feel like 'do I ring or will I be interrupting something' and also to put pictures of loved ones up to show some appreciation for their help or support. It was when Anita showed some colleagues the picture of Wend with the Welsh dragon on her face that some of her colleagues and friends started reading the blog too. Hello Anita's friends and colleagues!
I'm not sure who suggested doing something for charity but Anita and Jason and some friends are going to walk up Snowdon later this year for Marie Curie. It amazes me that people feel inspired to do something like this, to take time out of their busy lives and to go through physical hardship (I'm guessing they're not taking the train to the top!) and they're doing it in part for me. Anita and Jason are amazing family and I'm so lucky to have married into such a bonkers but brilliant and loving family.
If you want to sponsor them this is where to do it: here thank you.
I felt good today so for the first time since starting chemo I got my bike out of the cellar and had a quick ride. I decided that I wouldn't know how much is too much so decided to do too little! I'd done 200 metres and managed to find a dog berry with both front and rear tyres! I guess my poo avoidance skills are a little rusty!
I guess coming off the antibiotics and the barium passing on through, literally, has made me feel much better. Tired now as I write this but my head is better for the excercise.
Thursday, July 23, 2009
Another use for Barium
Ok so another treatment passes by but this time it was hard, really hard. For some reason I didn't sleep the night before, I was worried, why I don't know but I was. The morning of the treatment my hayfever was playing up so I took a Piriton tablet.
Once in the treatment chair, having had my nails done......as a moral booster the hospital are employing a beautician to offer treatments to patients to aid their care. It's this sort of thing that makes Western Park a community more than a hospital, and I suddenly remember what my first injection is. Piriton! I know how to get a reputation for causing trouble and upsetting the nurse putting the needle in is one of them. Nicole (my nurse for the most of the day) was great though and although I fell asleep from the combination of Piriton and lack of sleep it didn't put me at risk.
Having chemo therapy is not difficult, you sit there with a drip in your arm. People come and go around you, pretty much everyone is on a different regime and therefore will take a different amount of time for their treatments. I stay for an average of 6 hours, others are there for an hour or two. So for six hours I find stuff to do, they have free wireless for the geeks (me included), they have lunch (dry sandwiches and under-ripe fruit) and they have loads of people to talk to or listen to. New people worrying about their treatments, old timers giving their experiences and the staff who talk to pretty much anyone.
So there you go it's boring. Just get on with it, it's life saving treatment and all I have to do is sit there and watch the world go by.
The weekend Charlie and Veronica where home was amazing, emotional and fun and it felt like he'd never been away but more of that on another post. I did more than I'd done so soon after a session, it wore me out both physically and emotionally but it was brilliant.
Whether that over exuberance left me a little run down or what I'm not sure but I ended up with a urine infection. Not quite trying to pass a cactus but like the valving wasn't working properly. A quick trip to the hospital and a course of antibiotics later and all was well. Coming off the antibiotics was nice, especially as I was going to the hospital for another CT scan. For the Scan to work as well as possible it was on an empty stomach that I stepped off the bus and into the scan waiting area. Now the letter said there was a possibility of having a barium drink. The nurse shouting my name suggested it was more than a possibility. A container of white liquid awaited, the container had markings down the side, the nurse wanted me to drink it all unless I was going to bring it all back.......nice.
Now i'm sure that these barium drinks cost a great deal of money to produce and I'm sure that somewhere in some lab someone is producing these special dies. Well if that someone is reading this please please please stop making the stuff so flipping awful to drink. Imagine a really thick liquid with loads of flour, stacks of flour, a large helping of sickly glucose and a quick dash of orange. I wimped out at 800ml, it must be a bloke thing but I wanted to drink it all, as with all my treatments so far take it on the chin and accept it. I accepted defeat at 200ml to go, I thought it better that some of the die was in my system rather than being on the waiting room floor!
I kept it down and in all the way through the scan. Now we wait, we get the results next tuesday, these should show us in detail what the furball is doing. Fingers crossed then!
Tuesday, July 14, 2009
Ok so now i'm annoyed. Life is on pause, one of my best friends is home from New Zealand with his fiancee. I'd been looking forward to this weekend for the best part of six months. Go out and drink beer, eat curry and ride bikes. Laugh and chat and just be mates in the same town (country).
Well the furball put the riding on hold, I managed to have a couple of beers, missed the curry but caught up on laughs and chat. It's bl**dy hard, I don't want to be a damp squib on what should be a fab weekend for Charlie and Veronica, but nor do I want to be false.
In my mind I was on the ride, Jim had broken his bike (not the first time), on the friday and so borrowed mine on Saturday. Well there's no point in two of us not riding when there's a perfectly good bike sat there gathering dust. It did me a favour anyway as Mark did one of his uber-buffage jobs on it after the ride. I don't know how he does it, I've been trying to get it clean since I first got it dirty, Mark has it for half an hour and it looks better than new. Must be elbow grease......
Anyhow, the low's are low and you just get on with it, now for the high. 16 stone 10lb's. Just before Christmas I was 15.5 stone, big but healthy and feeling the fittest I'd ever felt, including being a kid. I felt great. Now I'm nearly the same weight I was when I decided to loose weight, oh good oh, it only took me 18 months to loose the weight. I guess I'll just have to loose it again. I'm hoping some of the weight gain is steroids but I think it's only part of the story. The majority of the story is probably me holding down the sofa. I've gone from riding to work, running and riding at the weekend, playing with the kids and standing up all day at work. Mmmmmm maybe there's been a lifestyle change..........
I'll loose the weight, I'll run again and ride and play with the kids and I'll be fit again. When I'm not sure but I will.
Tuesday, July 7, 2009
A brief post. Been to clinic today as you do before having a dose of chemo the next day. It's to check you're fit enough an your blood can cope with another blast.
They wanted me to have another x-ray today to see how things were going. I hadn't thought about it until I got a text from Viv this morning which kind of brought home that people were worrying about the outcome of the x-ray.
Well the furball is getting smaller. From the x-ray which the consultant showed us you can see a visible reduction in the size of the little bar steward.
Come on the chemo........
I had a good week last week, not too tired but able to go shopping and have a bit more normality. I guess i'm still learning but learning slowly, when I feel good I MUST NOT DO TOO MUCH.
Oh well, having felt as good as i did for the week Friday came as a real anti climax. Flat as a fart. My get up and go had f****d off! Now normally it would just be one of those things but it was super Sue's leaving do from work and I desperately wanted to go. Sue is one of those people who will always try to help someone, she's also an incredible teacher and puts in so much effort to everything she does she's quite inspirational. Work, family, friends and she still has time for charity work as well. Sue helped me through some difficult times at work and has been a great friend and I'll miss her terribly when she leaves. So as you may get the impression it was important to me to go on Friday night.
Wendy understands me better than I do and sent me to bed at half five to see if it made me feel better. It wasn't just the tiredness that had got to me, it was a mental thing too. It'd be the first time I'd seen most of the people out since I lost my hair and I also didn't want people feeling awkward around me and not knowing what to say.
I needn't have worried, apart from the very mediocre food (antibos in sheffield) the night was great. It really gave me heart to see people and to be as welcome as ever. There was no reason not to welcome me but the face in the mirror is somewhat different to how it used to be. We laughed and drank and talked and were just a great group of friends wishing a friend good luck on her travels.
Saturday morning came and boy did I feel tired, really dog tired. Not hungover, I'd driven the night before, but really tired. We took Carys swimming as Georgie wasn't well enough to go climbing and just did normal family stuff. That's what we get right I think, being normal, keeping it normal is so important for the kids and to be honest except for the extreme hair cut and the tiredness I feel as normal as I ever do!
Dad texted asking if we wanted them to sit in that evening which was excellent as I had just picked up my phone to text him and ask if they would! So for the second night in a row I was out on the town, this time with my beautiful wife and no car. We headed into Sheffield for a bit of a mooch and a meal, I was slowing down after the first strawberry beer so we moved closer to our destination, my drinking tolerance isn't what it used to be!
By the time we reached East One I'd had one and a half pints and was pretty chilled out, Wendy says I get my mothers eyes when I've had enough to drink! A superb meal followed and I think the alcohol helped me use the chop sticks which I've had problems with before! We talked about life and about our girls, as we usually do, then I got kind of broody watching this little kid chew alternately on a prawn cracker and the table!
I had lost track of time, I've stopped wearing a watch on this journey as there are so many times that time would pass so slowly that measuring it would only add to the waiting. As we rode the tram home we talked and were us, just us, just Nick and Wendy. Not Nick, Wendy and the constant companion cancer. It was so nice. By the time we got home I was sure it must be nine oclock, ten to eight and just in time to watch the second half of total wipeout with the kids!
The really weird thing about being so tired is not being able to get to sleep, no matter what position I get into or how hot or cold it is, it takes me what feels like forever (probably 5 seconds) to get to sleep.
Sunday was a great day, really lazy super family morning but then we took the girls and their bikes to the park. Georgia has been riding for a while now but building her confidence and Carys has only ridden a little with stabilisers on. So today when George said she'd like to try riding on a little bmx track we loaded the car up and off we went.
George did everso well and rode round the track with a couple of off's but getting more and more confident every lap. Then Carys decided she'd like to try without stabilisers...........