Monday, June 29, 2009
Just a really quick post about charities and my view on giving to them. I post this because a few people have asked if they can give money to me or if they can raise money on my behalf.
I don't want peoples money thank you. I understand why people have asked and I feel incredibly flattered that people would give me their hard earned! Financially at the mo we're ok and we're very aware of our finances so fingers crossed we'll be ok. If not I'll start selling body parts and most of the lads I cycle with will know what I'll start with.
When my journey started and we'd had the results of the biopsy I mentioned to a very good friend and neighbour what was going on. We share an unhealthy love of tools and sheds and bikes and stuff and get on really well. A couple of days later he asked if I minded him raising money for Cancer Research on my behalf. He wants to ride from Lands End to John O Groats on his push bike. To be honest I'd like to go with him but I'm not sure I'd be a help, more a hindrance but I'm amazed at people's generosity. He has set up a web site which is one of the links on the right of the blog page or you can click on here.
Steve Peat is a world class downhill mountain bike rider from Chapeltown who raises money for Western Park Hospital by having a big bike related party in Wharncliffe woods. He's done this for the past few years and it's on again this year, this years donations will be going specifically to the teenage department at Western where it will help teenagers with cancer. His event is called the Wharncliffe weekender and you can get to the website on the right of the blog site or by clicking here.
Please understand that I'm not asking you to donate money if you don't want to. Personally we have set ourselves the rule that we have a charity that we give to every year and we change it every year and we don't give to anything else. Just because I have cancer doesn't mean that I'm going to give my money to a cancer charity. It might mean I benefit from the money given or see first hand the work that the charity does. I may end up doing charity work for one of these organisations, I don't know, I don't know where my life will take me.
Thursday, June 25, 2009
Where'd it all go?
Well after shaving my head the rest of it seems to have takent the hint and b*ggered off! I wasn't bothered about the hair on my head but my beard is now more like a 14 year old clint eastwood want to be. It's had to go, I just look odd now, even moreso than usual.
I don't know have a beard for 12 years then shave it off for charity and then 2 months later the sod falls off of it's own accord!
I'm in a better frame of mind today, tired as I didn't sleep well last night. Chemo seems to mess with my ability to absorb caffeine which messed me up last night. I feel much better than I thought I would and at this point last chemo cycle I was in hospital with chest pains and a high temperature so this time is much better touch wood.
Monday, June 22, 2009
I guess it had to come, having been driving and being 'normal' for a couple of days the second dose of chemo kicked in and boy did I crash.
It wasn't that I felt worse than I have done before, physically it took it's toll similar to last time but mentally I wasn't prepared for it. Wendy and I had a phones off night on Friday, we love gettign calls but now and again it's good to turn everything off. Wendy had booked Juno a film about a 16 year old high school girl getting pregnant! Being honest it wouldn't have sold it to me but I'll try most things once so we settled down to what turned out to be a real tear jerker. It made me laugh and cry but mostly it was the crying that got me, I cried like I haven't done for ages. It wasn't the film it was the thought of what if, what if this doesn't work, what if I don't see my girls get married/have babies/graduate etc etc etc. I have too much to do for this not to work but if it doesn't..............
This cloud of doom stayed with me for most of Saturday, Dad and I took George climbing and she did really well, Carys had her first swimming lesson and went under water to fetch a ring. Normal things that should make me smile and laugh out loud but they just sat heavy on a troubled heart.
Dad offered to take us out on Sunday, fathers day, if we fancied it. At that moment in time I didn't feel like a dad, I felt like a passenger, a someone but no-one at the same time. Talking it over with Wend we asked Dad to take us up to Graves park.
The morning brought new light to my life. Two gorgeous girls with homemade cards and presents, giving me love and laughter with which I can grow strong on. Wendy made me breakfast in bed, american style pancakes with crispy bacon and maple syrup. I felt normal again, they reminded me who I am to them and who I should be to me too.
Graves park was lovely, we went round the animal enclosure and saw lots of animals pooing, just as Carys was walking by usually and so this caused exclamation and amusement. We went to the cafe and played rugby on the grass. I was knackered at the end but I was a dad again, in my head and my heart.
I love my family so much and it is them that this furball is hurting the most not me. Their hurt is the worst thing about this whole process and if I could turn off the hurt then I would.
Thursday, June 18, 2009
Well I've done it, I'm at real time. Went for chemo session number two yesterday and this morning I'm writing it up. This is kind of what I wanted the blog to be for, so that I can post how I'm feelingor what's happening with the treatment so people can look at the blog and find out or they can text or call.
Chemo was the same yesterday as the time before except it went a little quicker. The main time consumer is a protein based drip which the body may react to so it has to be introduced slowly. Every time you have it thought he body accepts it a bit quicker so they can give it to you a bit quicker. I've got pink pee again, which is just odd and I feel a bit more wiped out than last time but other than that I feel ok.
Sat there in my high seat recliner another couple walk in and sit two seats down, "Hey up, you live on our street don't you?" small world I guess! But then you find out about someone else's life and a bit about the miners strike to boot so everything has a positive slant!
Had a couple more really nice text's off people from work yesterday and it just makes me smile and give me that warm feeling inside.
Tuesday, June 16, 2009
Well the idea for the last two weeks was to get this blog up to date so that it works at real time. I have a good day or something interesting happens and I'll post it that day. Well due to one thing or another, being tired mostly, it's only just happening!
I've just been to clinic this afternoon to make sure my blood is healthy enough for another bombardment from the chemo drugs. Good news, it's all go for tomorrow so bring it on. I saw one of the people I got chatting to last chemo and they're going to be there tomorrow which is nice in a way. So many friendships are built during difficult periods of life and Western Park is testament to this, not only friendships with other patients but with the staff too.
Well nothing particularly interesting has happened over the last couple of weeks other than Wendy's sister and family coming up for the weekend which was brilliant. It coincided with me feeling the most energetic since starting chemo and we went out for a meal at Aagrah which was superb. Not just the food but the company and the feeling of being normal, well as normal as I get! Another normal thing was driving the car, I haven't had much of an attention span recently so I decided to give it a miss, the doctors have said I could but I'd rather have my full faculties available to me!
Oh my hair started falling out, why I'm not sure but it started in the trouser department! Forgive me if I offend but popping to the loo and seeing fur falling out of your fly is quite disconcerting! I ran my hand through my hair and nothing happened so I naively thought it may just be body hair that falls out.
Three days later my hair was coming out in chunks, quite amusing when you can offer friends and family a whole locket full of hair and it doesn't hurt in the slightest. According to Wendy I was starting to look very moth eaten from the rear, as this was rubbing on pillows and the sofa it was starting to wear out quicker than the front. As we don't have hair clippers it was the beard trimmer which were drafted into use. For my chin they do a great job, for my head not so great, especially when the battery is only half charged! Wend did the honours out in the back garden, the birds would use the hair for bedding, possibly. Problem was I looked like an escapee from a psychiatric unit, all I needed to do was rock backwards and forwards to complete the look.
Off down Hillsborough I went to get it finished off. First port of call, five minutes walk from our house was fella's, sat down read the prices and up and out I went. 15 pounds 50 pence for a flipping hair cut, what are they thinking? Mind you they had a cue and they're always busy so perhaps it's me that's out of touch. Ten minutes up the road is a more traditional barber with more traditional prices! Three quid later and the job was done!
The problem now is that the hairs that are left don't have follicals and so the dig back into my head when I lay down or rest my head on something they dig back in like thousands of little needles. This is where my family come into it, a roll of masking tape and Wendy and my nephew Jacob start playing naughts and crosses on the top of my head! It started out as I was messing around, as you do, trying to pull out the little hairs. Jake found the best technique, he put the tape on and then dragged in the direction of growth. This left any hairs which were still growing in place but pulled off the the loose ones. I slept much more soundly that night.
Jake had had a busy day, considering he was only stopping with us for a couple of days and was only meant to be shopping and helping out here. That morning he'd gone into town for some trainers and come back having been the witness at a wedding in the town hall! Then that evening he spent half an hour removing his uncles hair! For a lad from deepest darkest wet welsh Wales it was a bit different to the norm.
My beard is still coming out as is other hair but it's not as spectacular nor does the bedding need hoovering in the morning!
So chemo tomorrow, I'm a bit nervous as this is stepping up of drugs in my body. Each dose lasts six weeks so as I'm three weeks in I will effectively have one and a half lots in me. Does this mean I'll have one and half lots of side effects or be one and a half times as tired. I don't know and I won't know until the start of next week when the next load of steroids will drop off.
I feel incredibly lucky. I have a really good chance of beating this little f****r and the best of British medical knowledge are fighting for me. My family are amazing and are a wonderful support, my friends are great and keep my up to date with the world outside and are constantly offering help and lifts. Some of the texts and the messages I have received have touched me and have left me smiling and feeling blessed to know some amazing people.
I have a couple of stories about people who are vital to my life and some anecdotes but other than these it will be how the treatment goes and how I feel and my progress so I'm sorry if updates are less frequent but I don't want the blog to be boring!
Tuesday, June 9, 2009
Being self unemployed is odd, last week I was a dad who had just had chemo and was surrounded by his family as Wendy's dad and partner had come to stay too. Now black Monday was done and it was Wendy and I at home, the girls had gone to school and this was a start of a 'normal' routine.
Western Park had told me that anything out of the ordinary warranted a phone call, so a sore throat and upset tummy lead to a couple of hours being checked out on the day case unit. The tummy passed, thank fully and I was prescribed some anti-biotics for my throat. It was stressed over and over that I had done the right thing and I was not to hesitate in ringing if I was worried about anything.
I felt like my chest was going to burst open and a furball jump out and run across the floor. It was Wednesday afternoon and I'd given up and gone to bed for a snooze, little did I know the pain was going to be breath taking and my temperature was going to jump up to 38 degrees. Anything over 37.5 the hospital wanted to know, having just got out of bed I decided (as I am a fully qualified doctor(not)) to give it five minutes and see if it dropped any. Surprisingly it didn't, I can tell you're shocked by that!
"Mark's coming to take you up to hospital, I'll sort the girls and if I can I'll be up in a bit". Mark's great in an emergency, very calm and not at all flustered, just chatting about his day and the weather. He was pleased to be asked to give me a lift as it meant he got out of doing the tea! It also involved him in something useful rather than just calling to make small talk he seemed to want to help and he did.
Due to the time the day case centre was shut so I was admitted to a ward, glad I did an overnight bag now, I was bed c in a 6 bed bay. One guy went home during visiting and then there were three of us left. A nursing student had been taking my observations and detail when a Doctor came to see me, listened to the symptoms and decided as the pain was in my chest that another ecg would be a cautious thing to do. More flipping bald spots on my chest now, I'd rather have needles stuck in me, oh you're doing that as well great thank you!
Wendy called up, Shelley had been able to call and bring her up and said she'd put the girls to bed. Mark called up to pick Wendy up and then it was me and two blokes in a big room with very little to do. Small talk was the order of the day, reading and wondering whether this is my life from here on.
When I went into the day case centre on Tuesday I came out feeling lucky. There was an elderly lady who hadn't eaten or drunk for quite some time, she looked really uncomfortable. Earwigging, as I do, it turned out she'd come with her some in the ambulance from somewhere in Derbyshire and then were going to have to be transfered to Chesterfield as there was no beds in Western Park. I felt incredibly blessed as I had had a 20 minute bus journey to get here and was going to be going home the same day.
Thursday morning was like that too, a reasonable nights sleep, considering I was in a big room with two blokes. That doesn't sound very good but you know what I mean. Breakfast was great, Westerns food is brill, I hope you never have to try it but take my word for it! then it was waiting for the doctors to come and see me and discuss what happens next. My temperature had gone down and was stable and the pain was reducing. The doctors decided that subject to a chest x-ray they would then think about allowing me home. As with any group of people in Sheffield a conversation started up between the three of us, partly from winding the cleaners up and chatting with the nursing staff, but mainly from a natural air of openness which seems to exist oop north! Eric was in because his blood was as thin as water, not sure how that works but I think that was a lay mans description and Geoff was waiting to go to St Luke's Hospice which is a cancer care home. Eric explained that he had terminal lung cancer, he'd found it three years ago and they'd operated successfully but it had returned to a greater part of his lungs. His humility and acceptance of the situation was humbling, here's me with a furball which touch wood can be cured and I felt like a bit of a hypochondriac next to Eric. We talked for a good hour or so about family and friends and cancer. I can see how and possibly why people get so wrapped up in it, it is such an all encompassing disease, but I am determined not to be one of those people. I am not a number.........I am a free man.
I had my chest x-ray just before lunch and then it was more waiting. Lunch was good, again great food and yet another reason to be grateful for being me. Another guy got admitted to the ward and he looked like he was concentrating hard on something, it turned out he couldn't keep anything down, nice during lunch! But the poor bloke kept getting asked by the orderly if he wanted anything to eat or drink, I suggested a sign which he smiled at but shut his eyes again to either feign sleep or to keep down what ever was left in his stomach.
Wendy arrived having done a morning shift looking shattered, she'd not slept the night before, to the extent that she'd watched high school musical 3 in the middle of the night! She did bring a treat though from starbucks which was lovely but I felt really guilty as the sicky bloke kept opening his eyes and looking round!
Literally two minutes after Wendy left to go and get the girls the nurse came and said I could go home! She wasn't aware of the x-ray results so a short wait for a doctor to confirm any findings and then I was free! The reason for the pain, they think the chemo has started working on the furball. Come on the chemo! I can cope with pain if it means I'm going to get rid of this bar steward sooner rather than later.
Monday, June 8, 2009
When I started chemo I also started a course of steroids which was to run for five days. These were there to give my body a boost as the drugs would start to kick it down. Now I've only ever heard of steroids and their use in sport, especially cycling, so I wasn't overly keen on becoming addicted or anything. The possibility of becoming addicted is why the course was only five days, ten days and the patient has to be weaned off the drugs. The only possible drawback is that come day 6 when you've stopped taking the roids you may well have a real low as the chemo also tends to kick in then too. Nice.
Mum called to have lunch, I think it was as much for her benefit as for mine. It took a very straight conversation to get my point of view across and hopefully for mum to start accepting that I'm ok.
"I have cancer and I'm ok with it. I'm not angry nor do I ask why me but I have to get on with it and sort it out, go through the process." I didn't say this to shock mum but I am a beleiver in the truth and this statement was and is the truth. I didn't say it to provoke tears but I thought they would come and they did. Mum has always beleived there are happy tears and there are sad and that they are made up from different chemicals. The release of those chemicals starts a process of healing or acceptance. I have big waterproof shoulders and we put them to use that lunchtime.
Saturday, June 6, 2009
Oooh you poor thing you're going for chemo. Mmmm I had a friend who had chemo and they really went through it. Sick as a dog it made them. Knackered all the time. Can't sleep.
All the way through this process, this journey, I have not researched anything on the web. I decided early on that unless my consultant or doctor who was holding my notes and was talking to me about me that everything else was hearsay or rumour. This isn't to say that other peoples experiences are valid or to say that they didn't happen it's just they didn't or haven't happened to me, 16 stone of hairy Yorkshire. Whether they do happen in the future well that maybe but until I go through it, it will be me experiencing things for the first time.
"I'm scared, I've let it in, I've let all the stories and rumours about chemo in and I'm sh*tting myself Wend." It was the night before chemo starts, we'd been at the hospital that day for clinic (they take your bloods the day before every chemo to ensure you're strong enough to take the next hit). Wendy was superb, she always is when I need her, she's my strength my voice of reason when all my head can do it panic or stress she cuts through it and puts me straight. She just held me tight and talked me through the panic, she let my tears fall and she gave me reason. Reason to do this, reason to attack my body with chemicals in order to get rid of this interloper that has dug itself into my chest.
One of the givens with chemo is that it will damage your veins given time. It's one of those things, if you're pushing liquids into a pipe that isn't made for liquids to be pushed into it's going to do some damage along the way. For this reason the nursing staff at Western Park are amazing at finding your veins and getting cannula's in. They also have a rule, each member of staff has two attempts to get the cannula in. If they fail after two then they pass on to someone else, this means no-one gets stressed and the pressure is taken off the nursing staff.
As I sat there having my first lot of drugs I looked around at my fellow chemo patients and saw people from all walks of life, cancer doesn't seem to like one type of person in particular, it's not fussy like that. I saw people who looked physically and emotionally drained, people who were hopeful, people who had possibly given up being anything other than a person with cancer, people who slept through their treatment. To round it off the lady who sat next to me couldn't have been more cheerful, whether she was a full picnic I'm not sure but she was lovely and quite a tonic to talk to.
As a virgin I had to be treated gently and the drugs administered slowly! Really slowly. 5 hours for the first one to go in! Fortunately Wendy and I had known about this so I'd put in my laptop and mp3 player and Wendy had put in a puzzle book, a book and a couple of magazines and some nibbles.
And that was that, 8 hours after arrival, I had had all the drugs I was prescribed. Some had been given intravenously through a drip others had been given into the intravenous line but were controlled by the nurse squeezing the syringe. Other than a little discomfort when one of the drugs was going in it was just a case of sitting and watching the world go by, boring but part of the whole process.
Tuesday, June 2, 2009
After a thorough interview with the oncologist at Western Park it transpired a couple more tests were needed.
Firstly a PET/CT scan would be booked, Positron Emission Tomography combined with a traditional CT scan. It turned out to be the most boring part of this journey, they inject you with very radioactive die and then you lay still for an hour. Perfectly still, no moving, not even reading. The reason being the die they inject has a glucose element to it which fast dividing or energy greedy cells absorb, the cancer cells are these such cells but muscles when in use would also absorb the die therefore giving the a false reading. So forcing myself to fall asleep was the best option in my mind, that was fine for the first hour but the next 40 minutes in the scanner was boring.
Secondly because there was a possibility that the lymphacites (white blood cells) were coming out of my bone marrow 'bad' they wanted a sample of marrow. Now as a special offer for one friday only they would take this marrow sample in an hours time if that was ok with us. We were both of the opinion that getting a test done sooner rather than later would get a result sooner which would reduce stress, hopefully.
My coping strategy of understanding procedures has stood me in good stead and a bone marrow biospy was going to be no different. As we walked up the stairs my legs went weak, there looking down at me was mum's art work. Now mum started going on her carpet munching weeks way back when and as her confidence grew so did the ability for art to be shown to people outside the family. Then one day there was an exhibition for charity and one of the people at Western park decided to buy some of mum's work. So as Wendy and I are walking up the stair well to go for a biopsy there staring down was the picture of leaves shown above. It was as though mum was there, my family were there, helping us through this, giving us strength to face the unknown the uncertain and more than likely the uncomfortable!
So the biopsy, Wendy ahd heard from various places that it wasn't a good thing to go through but hey this is my first so I'll take it as it comes. Now those of a delicate nature may wish to turn away now or go and read something more interesting as the mental picture isn't good. I'm laid on my side with my trousers and pants half way down my a*se looking into Wendy's eyes and wondering what's coming next. I'd had a small aneasthetic into my lower back where my pelvis was closest to the skin and we were waiting for this to take effect. Dr Walkington was very nice and had offered something that would make me feel woosy but I had declined, I'd rather have a clear head when facing something weird, it helps when I'm teaching too!
"You're going to feel me pushing the instrument into the pelvis and maybe some twisting now." Good oh we're getting on with it then. Pushing that's not pushing Carys can........, oh ok that's pushing now. Actually as you're pushing into the pelvis it's twisting and squashing one of my family jewels, ooooh that's most unpleasant. No I didn't say that, once the procedures underway you can't be worrying about squashed testes, anyway they've done their job. "Right we're through the bone, I'm going to push some more now and then you'll feela twisting as I pull the biopsy out." Mmmm twisting and pushing wonder what that'll do for my knackers, nothing thankfully, the pulling was strange as there was some vacuum created by the removal of the tool but at least it was done. Looking at the tool later it all became clear about the twisting and everything, she'd used a really thin cheese sampler on me! You know when they take a core of cheese out of one of the big rounds on cookery programs, one of those tools, just it had a seperate attachment to cut through the bone with too. Very clever and simple, effective too.
Monday, June 1, 2009
Ok so this was it, here we go lets find out what we're dealing with and how we progress. Dr Pirzada as we've said before is a lovely bloke and very quietly spoken, this can be good when breaking bad news but when you're wanting news quickly it can be a little frutrating. I guess it's the old game show technique of building suspense, or it's not being sure how the news will go down, either way the nano seconds of quiet before the conversation felt like years.
The first five minutes of the conversation were disappointing, probably annoying in honesty. Nothing new was said, there were no concrete statements, no solutions and very little to write home about (or to the internet!).
The basics were that the laboratory still hadn't finished diagnoising exactly what the furball is but that it looked 99 percent a Lymphoma. To me that was the best news I'd had for a really long time, I had gone in there with two worst case scenarios. Firstly they had no idea at all what it was, this would be bad in my simple mind as not knowing means it's something rare or complicated or botha nd therefore would take a long time to sort out. Secondly it was terminal, ta very much do not pass go, have a nice two to three months and we'll see you on the other side. I have too much to do, too many laughs to have, too many things yet to experience, I can't die now.
So to be diagnosed with a Lymphoma was brilliant, not sure Dr Pizarda understood my enthusiasm at the news, probably not the response he'd been expecting but to me it was good news. Even better news was he'd spoken to a colleague at Western Park Hospital here in Sheffield and they would see me the next day. Wow, part of me would love to live in Pembrokeshire or New Zealand but boy am I glad that for the time being I live in a city with one of only 3 cancer specialist hospitals in the country.
Now it was news spreading time again. Wend and I had a hug, as simple as it is that physical act of being together brings me so much strength. We hadn't really spoken before the consultation about our hopes, I'd certainly not mentioned my fears. For Wendy I think it was a weird confirmation that all this was real and it wasn't just a furball and it wasn't going to go away. I know that she knew it was real but like me the whole situation has felt so surreal that we were losing what was real and what wasn't. She spoke to her sister and her dad and I phoned work. Judith again was fab and supportive and understanding when I told her I wouldn't be in the next day as I had another appointment. I wanted to speak to the boss as he'd been so supportive through it all. Explaining it was a relief, "yes it's sh*t but it's not very sh*t" I've always been lucky in talking to Roger in a very straight forward manner. "No I can hear the relief in your voice" came the reply, perhaps I hadn't been as good at hiding the stress as I had thought I was. I guess it's strange how just someone noticing can make a difference, this simple sentence mad eme realise what I, we, were going through and how far we had come and that the journey was going to be a long one. That relief also meant I have a chance, a chance to live, a chance to fight for the life that I want to lead not what some poxy furball dictates to me.