So... I finally get my bed in Lowan Ward, I'm sitting here waiting for the "hydration" phase of the treatment to begin at midnight. This is a fun 12hrs of IV saline and other bits and bobs that make you pee... a lot. I guess this is to flush your system and prepare or internal organs for the chemo.
chemotherapy should commence at noon tomorrow allowing my to leave 'Chez Chemo' with my four day pump on Friday, all being well. Okay, short term marker... get well for Christmas day. I'm so exited to see the kids open their presents on Christmas morning. They both fully understand and embrace the whole Christmas thing now as they know exactly how it all works. The good behaviour leverage that's been created in the last month due the fact that "the elves are watching you" has been increadable. We have the best behaved kids right now and all thanks to the "elves".
It was difficult to put them both to bed tonight. I mentioned to Joel while I was tucking him in that Daddy will be going back to see the doctor tonight to get more specilai medicine and I'll see him again in two sleeps. He replied "you should just stay here with me forever"...what do you say?
Cerys was in a similar place, but expressing it in a different way. As I've said before, it's difficult to realise the scale of the impact sometimes, and it makes it all the more difficult to be trapped in here right now.
Although, I was greeted by a friendly nurse who ushered me towards one of the side room. Its a large room,one bed, clean without stinking of bleach with a television... great. I go for a look around the ward for some familiar faces, there's none. One of the nurses say "are you looking for someone?", "yes, my mate Stephen"... "I'm right in front of you ya bugger" calls Stephen. Stephan is a south African bloke in his mid fifties suffering from an acute throat cancer that was discovered when he was admitted to hospital after nearly choking to death in a Padstow restaurant. He began his first round of Chemo a few days before me and was in the bed next door to me on my first round. He is an ex merchant seaman and solidly refuses that the chemo could every make him feel sick due to his years at sea.
The reason I didn't spot him was because like me he had opted for the full hair loss "shave down", gone were his Captai Birdseye silver hair and beard, replaced by crew cut and clean view of his chin! We had a good to catch up and compared notes about the effects of our first run at it, and i can aslo claim my Lance Arstrong book back (bonus!) It was nice to see him. Aside from Stephen the ward is full of new faces, all of which with different inputs of chemicals reaching into different body parts via clear plastic tubes. There is a strong spense of camaraderie in here, it's quite and unspoken, but is acknowledged through knowing nods and slight smiles.
Since if been riding my bike so much over years I have noticed as serious drop in my resting heart rate. This was made apparent during the first observations from the first round. They like you to have a resting heart rate of betweenn 60 and 100bpm. I was coming in at between 64 and 67 bpm, "do you do a lot of joggin" one nurse said, "no, but I get about 70+ miles a week out of my mountain bike", "that explains you low resting heart rate". I'm not really one for stats and figures when riding, it's nice to know how fast and far you go each ride, but I've never been into logging or traing using heart rate monitors... leave that to the serious cats! However it is really nice to see that a by-product of all that fun is a good level of fitness.
I have just had my first round of observations and my resting heart rate was 110 bpm! I didn't understand how this could be, I'm sat motionless in bed. My temp is fine and so is my blood pressure... weird! The nurse asked me if Im taking any medication. I was given a steroid to take in large doses 24hrs before the chemo, I told her..."I bet your really hungry too", I flashed back the pizza and Sunday combo and the Kit Kat and five Jaffa cake I guzzled down a few minutes ago... yes a hungry fells indeed! I just tought I was making up for lost ground from last weeks purge. Ive lost nearly three kilos over the last few weeks be it through illness or stress im not too sure, but one thing is certain this week my appetite has been on fire!
"oh, and by the way, what time did you take the last dose of steroids?", "about two hours ago", "okay, I wouldn't expect to sleep tonight either", great- so nice to be informed of this when the drugs are issued. So late night blogging live from "The Chemo Hotel" tonight. All good fun.
Wednesday, 14 December 2011
Chemo Hotel...
Today started early, after trying to help Bethan get the kids ready for school and dropping them off we headed off for my review appointment at Trelisk. The point of this is an assessment to review how physically and I guess mentally ready I am for the next round of chemotherapy.
Having been pretty hammered by the last round and running into all sorts of quite powerful side effects there was talk of the next round being postponed until I was 100% well again. It was are very clear at the meeting with the main oncologist that is taking care of me that he was very impressed with both my rate of recovery and the reduction in size of the lump in the lymph gland in my neck. It has shrunk for the size of half an apple to half a grape with in the first round. This provides yet another huge positive foothold, that gives both relief and encouragement to see that it's all working as It should be.
With all this information in place, they suggest moving the treatment schedule forward by a day and suggest starting the next round a soon as a bed is ready. We were told to call the ward back after 1pm to find out. Myself and Bethan took advantage of out extra time and headed into Truro where the largest pre- chemo meal took place in Pizza Express, huge Ham and mushroom pizza followed by a banoffee Sunday... I might not be eating too well over the next few days so the thought was to stock up, and stock up we did!
As we both wobbled our bellies off down the street and I mentioned that I wanted to drop into the local bike shop and have a chat with the James and the boys that work there. Clive Mitchel Cycles has served my cycling, chin wagging, good advice, needs. As we all share an immense passion for cycling in its many forms it's easy to call the guys who work there friends. James has had many years to subtly hone his craft of being able to show you a bike and with in seconds your trying to figure out a way that you can own it! I might be to blame in part for that though, i love a new bike as many of you know! It begins with his "Mr Ben, as if by magic the shop keeper appears" followed by a swift glance at the product on offer within the show room, this is followed by a swift dismissal of what's there, followed by a "follow me". We end up in the "secret stock area" an area of the store that seems to make feel a bit prevailed to be in. He digs about amongst the numerous demo bikes and brand new ready to ride steeds that are waiting to be collected by the now "light of wallet, but super stoked" customers. He unvailes my new dream bike the new Specialized Epic 29er, some folk balk at the whole big wheel movement, but I fell in love with their flowy goodness many years ago and as the popularity of this design has grown so has the quality of handing, lower weights, and over all grin factor. Sorry, non bike fans there is a point for all my lusting over this inanimate object. It all comes back to the "positive markers" I was talking about a post or two ago. I have been thinking about riding my bike a lot lately and how much I miss not just the sport itself and the exercise, but most of all the people. I realise the potential for life long side effects of the treatment I'm undergoing, but I still feel I want too continue riding once this is done. I have three bikes at the momment that I move between all the time and it breaks my heart to think of them rotting away in the shed for the next six months. Headsets frozen, bearings siezed, hubs stiffened all through lack of use. I have come to the decision that I need to sell them, put the money to one side and buy my dream bike once I feel right again, which I feel confident that I will. This gives a solid long term "positive marker" for me to work toward. Knowing that I won't just be back riding in whatever capacity, but I'll be riding the the bike I always wanted... so as James unveiled a brand new Specialized Epic Carbon 29er, it appears a new long term "positive marker" has been set!
Having been pretty hammered by the last round and running into all sorts of quite powerful side effects there was talk of the next round being postponed until I was 100% well again. It was are very clear at the meeting with the main oncologist that is taking care of me that he was very impressed with both my rate of recovery and the reduction in size of the lump in the lymph gland in my neck. It has shrunk for the size of half an apple to half a grape with in the first round. This provides yet another huge positive foothold, that gives both relief and encouragement to see that it's all working as It should be.
With all this information in place, they suggest moving the treatment schedule forward by a day and suggest starting the next round a soon as a bed is ready. We were told to call the ward back after 1pm to find out. Myself and Bethan took advantage of out extra time and headed into Truro where the largest pre- chemo meal took place in Pizza Express, huge Ham and mushroom pizza followed by a banoffee Sunday... I might not be eating too well over the next few days so the thought was to stock up, and stock up we did!
As we both wobbled our bellies off down the street and I mentioned that I wanted to drop into the local bike shop and have a chat with the James and the boys that work there. Clive Mitchel Cycles has served my cycling, chin wagging, good advice, needs. As we all share an immense passion for cycling in its many forms it's easy to call the guys who work there friends. James has had many years to subtly hone his craft of being able to show you a bike and with in seconds your trying to figure out a way that you can own it! I might be to blame in part for that though, i love a new bike as many of you know! It begins with his "Mr Ben, as if by magic the shop keeper appears" followed by a swift glance at the product on offer within the show room, this is followed by a swift dismissal of what's there, followed by a "follow me". We end up in the "secret stock area" an area of the store that seems to make feel a bit prevailed to be in. He digs about amongst the numerous demo bikes and brand new ready to ride steeds that are waiting to be collected by the now "light of wallet, but super stoked" customers. He unvailes my new dream bike the new Specialized Epic 29er, some folk balk at the whole big wheel movement, but I fell in love with their flowy goodness many years ago and as the popularity of this design has grown so has the quality of handing, lower weights, and over all grin factor. Sorry, non bike fans there is a point for all my lusting over this inanimate object. It all comes back to the "positive markers" I was talking about a post or two ago. I have been thinking about riding my bike a lot lately and how much I miss not just the sport itself and the exercise, but most of all the people. I realise the potential for life long side effects of the treatment I'm undergoing, but I still feel I want too continue riding once this is done. I have three bikes at the momment that I move between all the time and it breaks my heart to think of them rotting away in the shed for the next six months. Headsets frozen, bearings siezed, hubs stiffened all through lack of use. I have come to the decision that I need to sell them, put the money to one side and buy my dream bike once I feel right again, which I feel confident that I will. This gives a solid long term "positive marker" for me to work toward. Knowing that I won't just be back riding in whatever capacity, but I'll be riding the the bike I always wanted... so as James unveiled a brand new Specialized Epic Carbon 29er, it appears a new long term "positive marker" has been set!
Nice to see ya, to see ya... Nice!
I've been back on top form over the last week, a little battle weary but able to make to most of feeling way better than I have done in recent weeks.
It's been great to get a few folk calling round for a cuppa and a catch up and to be able to make calls to freinds around the country and have a good chin wag about everything that's been going on. An extension to this was the announcement of a possible Christmas get together with everyone from the Trail Riders bike club I've been part of for last few years. We have always started our three weekly rides from the Fox and Hounds car park in Scorrier, and finish the majority of rides with a pint in the Fox afterwards. Myself and freind from Newquay headed down there to meet up with everyone for the first time since I was diagnosed. I was was very conscious that I wanted to reassure them that everything was okay and I was feeling good. It's true, I am, but I still wanted to offer that reassurance to my freinds. We sat and ate huge plates of gammon and chips, laughed hard for good few hours and reveled in talk of future bike trips. It was amazing to see everyone and it offered a real boost to my moral at this point. A lot of folk I know are going to find this weird, but I have no desire to drink alcohol at the moment. It just feels like a negative in my system that I really don't need. Perhaps when the treatment is all done my thirst will return, but for now I really could yet care less.
Tomorrow sees me back in Trelisk for a lengthy check up to ensure that everything is okay to begin the next round of chemo. All being well I will be I'll get started the folloiwing day and things wont have been efected by the illness following the first round. Fingers crossd that they are going to adjust the dosage to limit some of the more aggressive side effects.
It's been great to get a few folk calling round for a cuppa and a catch up and to be able to make calls to freinds around the country and have a good chin wag about everything that's been going on. An extension to this was the announcement of a possible Christmas get together with everyone from the Trail Riders bike club I've been part of for last few years. We have always started our three weekly rides from the Fox and Hounds car park in Scorrier, and finish the majority of rides with a pint in the Fox afterwards. Myself and freind from Newquay headed down there to meet up with everyone for the first time since I was diagnosed. I was was very conscious that I wanted to reassure them that everything was okay and I was feeling good. It's true, I am, but I still wanted to offer that reassurance to my freinds. We sat and ate huge plates of gammon and chips, laughed hard for good few hours and reveled in talk of future bike trips. It was amazing to see everyone and it offered a real boost to my moral at this point. A lot of folk I know are going to find this weird, but I have no desire to drink alcohol at the moment. It just feels like a negative in my system that I really don't need. Perhaps when the treatment is all done my thirst will return, but for now I really could yet care less.
Tomorrow sees me back in Trelisk for a lengthy check up to ensure that everything is okay to begin the next round of chemo. All being well I will be I'll get started the folloiwing day and things wont have been efected by the illness following the first round. Fingers crossd that they are going to adjust the dosage to limit some of the more aggressive side effects.
Monday, 12 December 2011
Ha ha... Daddy, you look like an egg!
This was the response I was met with from Cerys his afternoon having walked into the house with a new grade 1 crew cut.
A good friend of ours who is also a hair dresser came over this morning and very kindly cut my hair. We had a really funny morning laughing about everything, but when a friend of ours who died of cancer this year came up in conversation it was difficult to fend off the tears. I think it's the unfairness of it all, the way that cancer I'd so indiscriminate. It's an evil disease for the way it can just cut a person down who was so in love with thier life and had so much to live for.
No one deserves cancer, I guess you can limit the chances of its through the lifestyle choices we make, but when alls said and done it kind of feels like 'it' chooses you. Especially with what the doctors have said and what I've read about my cancer. It would appear that it has no real cause. There are links to Epstine Barr Virus (EBV) as a possible cause and flaws in the immune system. The later I find strange as I've alway been the type person that never gets sick, I think I went the whole winter last year without a single cold or sniffle, seem to making up for it now though.
Back to the hair cut though. I was getting fed up with malting everywhere. There was hair on the towels, hair in the sink, hair on my pillow, it was everywhere! I was also starting to get some quite obvious bald patches on each side of my head. So... Crew cut it is. Having had my hair like this through choice many times it's no big shock to me, however Cerys and Joel seemed to see things differently and met me with their funny little jibes and observations as soon as they noticed. All good fun, they seemed quite tickled by it all.
I'm seeing the community nurse tomorrow morning for my weekly check over, and I think I'm having the final stitch removed from my Hickman Line, which should make it feel almost unnoticable. The feeding tube has settle a bit more over the last week, but I think that's largely due to my acceptance of the situation. I kind of feel less afraid of it now. Ive manged to fit its upkeep in to the normal morning routine.
I'm due to go back to the hospital this Wednesday for my pre chemo check over. They will run tests to see if I'm up to taking on the next round. As far as I'm concerned I feel okay aside from a nagging cough that I've had since leaving hospital. Everyone seems to have it at the moment including Cerys and Joel. I just hope they don't hold me back from the treatment due to this or the complications I had following the last round. I really want to get on with it. It's been a massive boost to see the lump in my neck virtually disappear over the first round of chemo. I just feel like I want to get another one in there and feel another big step towards nailing this thing.
A good friend of ours who is also a hair dresser came over this morning and very kindly cut my hair. We had a really funny morning laughing about everything, but when a friend of ours who died of cancer this year came up in conversation it was difficult to fend off the tears. I think it's the unfairness of it all, the way that cancer I'd so indiscriminate. It's an evil disease for the way it can just cut a person down who was so in love with thier life and had so much to live for.
No one deserves cancer, I guess you can limit the chances of its through the lifestyle choices we make, but when alls said and done it kind of feels like 'it' chooses you. Especially with what the doctors have said and what I've read about my cancer. It would appear that it has no real cause. There are links to Epstine Barr Virus (EBV) as a possible cause and flaws in the immune system. The later I find strange as I've alway been the type person that never gets sick, I think I went the whole winter last year without a single cold or sniffle, seem to making up for it now though.
Back to the hair cut though. I was getting fed up with malting everywhere. There was hair on the towels, hair in the sink, hair on my pillow, it was everywhere! I was also starting to get some quite obvious bald patches on each side of my head. So... Crew cut it is. Having had my hair like this through choice many times it's no big shock to me, however Cerys and Joel seemed to see things differently and met me with their funny little jibes and observations as soon as they noticed. All good fun, they seemed quite tickled by it all.
I'm seeing the community nurse tomorrow morning for my weekly check over, and I think I'm having the final stitch removed from my Hickman Line, which should make it feel almost unnoticable. The feeding tube has settle a bit more over the last week, but I think that's largely due to my acceptance of the situation. I kind of feel less afraid of it now. Ive manged to fit its upkeep in to the normal morning routine.
I'm due to go back to the hospital this Wednesday for my pre chemo check over. They will run tests to see if I'm up to taking on the next round. As far as I'm concerned I feel okay aside from a nagging cough that I've had since leaving hospital. Everyone seems to have it at the moment including Cerys and Joel. I just hope they don't hold me back from the treatment due to this or the complications I had following the last round. I really want to get on with it. It's been a massive boost to see the lump in my neck virtually disappear over the first round of chemo. I just feel like I want to get another one in there and feel another big step towards nailing this thing.
Sunday, 11 December 2011
Positive markers...
I had a really rough night last night, it was as though everything just got on top of me. I seemed to only be able to focus on the negative and i didn't feel like i was in control of how i was feeling. I think at its core there were a few different things that i was struggling with. The first thing was the angst and anguish my situation has put on the people i love and care for. I find myself hating the cancer more for this than anything else.
Both the kids have been dealing with he situation in thier individual ways. Joel is pretty happy go lucky and is fairly wrapped up in his own three year old world of trucks, diggers and jumpming off stuff. Cerys on the other hand is very different. She has a very deep way of thinking about things for a five year old and tends to internalise things. Cerys will lead you to believe that none of this is having any effect and then she will just say something that lets you know that knows exactly what's going on. Sometimes she doesn't even have to speak.
I was feeling kind of rough yesterday and had fallen asleep in the living room. I could sense Cerys playing quitely near by. I woke, lookin through blurry eyes I could just see Cerys sat in front of me with eyes fixed on mine. It's as though I was transparent and she was gazing right inside me. "are you feeling poorly daddy?" "a little bit, but it's okay" I said. She knows, and she worries and I can't stand that.
We are looking to move house on the 20th of this month, something we are all looking forward too. This is counterbalanced by me receiving my second round of chemo over this time, but if that's the case at least I'll be in okay shape to enjoy Christmas with Bethan and the kids (fingers crossed).
As things have gone on it's made me realise that in order to get through this I'm going to have to set some goals. Some things to look forward to through out the treatment that will serve as positive markers that I need to strive for. I've been working through all this just trying to handle each day as it comes, a kind of "play it by ear" approach. This is fine, but going by last night's little "mood swing" a need to set up both long term and short term targets to aim for. On of the lads from the mountain bike club I've been an active part of for the last few years posted up a video of a couple of french riders smashing the back doors off some fast flowing alpine single track, I just thought- that's what I need to do! I need to set up some end goals, post treatment.
Surf dvd's and bike magazines have turned into instruments of torture lately. Just serving to remind me of what I can't do. This is true for now, but I can't help thinking that if I put these markers in place and give myself things to look forward too it going to make getting through the darker parts of the treatment easier with an end game to focus on. Did Lance lay in bed thinking about the pain of the next round of treatment, no he layed there thinking about mountain stage events and laying the competition to waste, I can only guess that's why he beat his cancers and won Le Tour 18 months into remission. I'm no Lance Armstrong, but thinking about dusty ribbons of singletrack flowing through Alpine valleys are looking like a great incentive at the moment.
Fast Frenchies!
Both the kids have been dealing with he situation in thier individual ways. Joel is pretty happy go lucky and is fairly wrapped up in his own three year old world of trucks, diggers and jumpming off stuff. Cerys on the other hand is very different. She has a very deep way of thinking about things for a five year old and tends to internalise things. Cerys will lead you to believe that none of this is having any effect and then she will just say something that lets you know that knows exactly what's going on. Sometimes she doesn't even have to speak.
I was feeling kind of rough yesterday and had fallen asleep in the living room. I could sense Cerys playing quitely near by. I woke, lookin through blurry eyes I could just see Cerys sat in front of me with eyes fixed on mine. It's as though I was transparent and she was gazing right inside me. "are you feeling poorly daddy?" "a little bit, but it's okay" I said. She knows, and she worries and I can't stand that.
We are looking to move house on the 20th of this month, something we are all looking forward too. This is counterbalanced by me receiving my second round of chemo over this time, but if that's the case at least I'll be in okay shape to enjoy Christmas with Bethan and the kids (fingers crossed).
As things have gone on it's made me realise that in order to get through this I'm going to have to set some goals. Some things to look forward to through out the treatment that will serve as positive markers that I need to strive for. I've been working through all this just trying to handle each day as it comes, a kind of "play it by ear" approach. This is fine, but going by last night's little "mood swing" a need to set up both long term and short term targets to aim for. On of the lads from the mountain bike club I've been an active part of for the last few years posted up a video of a couple of french riders smashing the back doors off some fast flowing alpine single track, I just thought- that's what I need to do! I need to set up some end goals, post treatment.
Surf dvd's and bike magazines have turned into instruments of torture lately. Just serving to remind me of what I can't do. This is true for now, but I can't help thinking that if I put these markers in place and give myself things to look forward too it going to make getting through the darker parts of the treatment easier with an end game to focus on. Did Lance lay in bed thinking about the pain of the next round of treatment, no he layed there thinking about mountain stage events and laying the competition to waste, I can only guess that's why he beat his cancers and won Le Tour 18 months into remission. I'm no Lance Armstrong, but thinking about dusty ribbons of singletrack flowing through Alpine valleys are looking like a great incentive at the moment.
Fast Frenchies!
Saturday, 10 December 2011
What are eyebrows for?
I was informed when I started the chemo program that it was going to be pretty much the highest dosage that can be given and to expect a strong chance that I will loose my hair and when it grows back it might be a lot more greyer than before.
My ethos with regards personal looks and presentation have always centred around clean, simple and easy to maintain... you give me jeans, t shirts, slip- on Vans and a crew cut, I'm set. That little style recipe has served well over the last twenty years allowing my to slip discretely under the fashion radar. When it was announced that I would almost certainly loose my hair I didn't really think anything of it.
I got out of the shower this morning and while drying my hair I noticed the large mount of hair that had malted onto the towel. I thought "okay, so its begun", I looked in the bathroom mirror squinting my eyes trying to imagine what the full "Cancer patient, no hair, no eyebrows look" would be like on me. Despite having crew cut after crew cut over the years I just couldn't see it.
It's only now as I sit here on a Saturday evening in the lounge, flicking through the TV channels doing my best to keep well clear of the mind numbing nonsense thats on offer. I reach up an pull a clump of hair from the side of my head. It really has begun.
I'd not really given much thought regarding the extreme physical changes that this situation could lead too, but now those changes are starting its beginning to hit home. I keep having this re-ocuring playback in my head of the scene from the 1980's re- make of The Fly where Jeff Goldblum is transforming, pulling off finger nails and finding new and repulsive happenings to his body. While I'm constantly trying to keep things in perspective and keep telling myself this is the treatment, and these temporary side effects are products of the curative process thats happening inside my body on the road to wellness. It doesn't stop me freaking out out a little bit.
My ethos with regards personal looks and presentation have always centred around clean, simple and easy to maintain... you give me jeans, t shirts, slip- on Vans and a crew cut, I'm set. That little style recipe has served well over the last twenty years allowing my to slip discretely under the fashion radar. When it was announced that I would almost certainly loose my hair I didn't really think anything of it.
I got out of the shower this morning and while drying my hair I noticed the large mount of hair that had malted onto the towel. I thought "okay, so its begun", I looked in the bathroom mirror squinting my eyes trying to imagine what the full "Cancer patient, no hair, no eyebrows look" would be like on me. Despite having crew cut after crew cut over the years I just couldn't see it.
It's only now as I sit here on a Saturday evening in the lounge, flicking through the TV channels doing my best to keep well clear of the mind numbing nonsense thats on offer. I reach up an pull a clump of hair from the side of my head. It really has begun.
I'd not really given much thought regarding the extreme physical changes that this situation could lead too, but now those changes are starting its beginning to hit home. I keep having this re-ocuring playback in my head of the scene from the 1980's re- make of The Fly where Jeff Goldblum is transforming, pulling off finger nails and finding new and repulsive happenings to his body. While I'm constantly trying to keep things in perspective and keep telling myself this is the treatment, and these temporary side effects are products of the curative process thats happening inside my body on the road to wellness. It doesn't stop me freaking out out a little bit.
Friday, 9 December 2011
Cerys and Joel's Nativity...
Subscribe to:
Posts (Atom)