Have you ever cried while using the instant messenger feature on Facebook? I did for the first time last night.
My auntie has been battling multiple cancers for over eight years now and as a friend, inspiration and bottomless source of positivity in my current situation there are few who can match her determination, kindness and wicked sense of humour. Because of the close nature of our family I have always seen my aunties and uncles much more like older brothers and sisters. Espesially in the way we all share such a close thread when it comes to laughing together. We may live many miles apart, but that has never made a difference when we come together its as though not a single day has passed.
As usual she was eager to hear how things were going with my treatment, I told her that it had been rough and she was quick to comfort me with her experiences, advice and of course humour. I asked how she was feeling. She simply replied, "my treatment has come to an end, I'm on pain medication only from now on." my heart fell through the floor. We have all know for some time that my Auntie's situation isn't curable, but I think all of us had always clung on to the hope that her cancer could be kept at bay long enough to allow a "normal" life span while maintaining as good a quality of life as possible.
It hit me at that point that I'd been sulking, wallowing in my own "why me" self pity over he last few days, and for all my "positivity" over the situation while feeling well, that positive outlook soon took a monumental dive once the treatment began. It's at this point that I think Ive realised that I need some perspective, I need to "re- frame" my view of the situation. Realising aunti B's situation has given me just that. Here's a kind, funny, intelligent lady, who's been told "that's it, we've done all we can" and still she's smiling,laughing and insistent hat I only ever cry tears of happiness.... amazing. It makes my situation look like a common cold in comparison. I'd just like to take this opportunity to thank my auntie B for all her her love help and support, not just recently but throughout my life. Love you so much mate, C xxx
Wednesday 30 November 2011
Sunday 27 November 2011
Low eb...
It's been a few days since my last post, and with good reason. The chemotherapy I started on Thursday has been hitting me hard. I had heard and read that the side effects of chemotherapy are cumulative and that the first few rounds can be quite mild with side effects encreasing as the treatment progresses. This is a bit of a concern as the last few days have been very rough indeed.
I have felt sick from the moment the first dose hit my blood stream. That kind of motion sickness where if you close your eyes and keep still you can kind of suppress it while you sit there under your blanket of cold sweat. I started to think that the anti sickness meds weren't working until I missed a dose, that was a mistake!
Then there is the bottomless fatigue. I've been home since Friday and I've been in bed ever since. Is it really making me that tired? or am I just falling into some kind of voulentary hibernation like a big cancer bear hoping to emerge the other side of the Winter, treatment complete and cancer free without having had to face the emotional battle that lies ahead. Each time I've tried to surface from this it's left me drained and sicker then ever before. So, I've taken to just lying here, drifting in and out of conciseness, feeling sick and then not so sick, and then sick again. I'm hanging on to the fact that there is now way it can be like this the whole time. That a "bounce back" is on the horizon. I go back to hospital on Tuesday to have the portable chemo pump removed and to have stitches and lines sorted, which should make things more comfortable, so that is my "feel better" marker for this week, just need to get to Tuesday.
I have felt sick from the moment the first dose hit my blood stream. That kind of motion sickness where if you close your eyes and keep still you can kind of suppress it while you sit there under your blanket of cold sweat. I started to think that the anti sickness meds weren't working until I missed a dose, that was a mistake!
Then there is the bottomless fatigue. I've been home since Friday and I've been in bed ever since. Is it really making me that tired? or am I just falling into some kind of voulentary hibernation like a big cancer bear hoping to emerge the other side of the Winter, treatment complete and cancer free without having had to face the emotional battle that lies ahead. Each time I've tried to surface from this it's left me drained and sicker then ever before. So, I've taken to just lying here, drifting in and out of conciseness, feeling sick and then not so sick, and then sick again. I'm hanging on to the fact that there is now way it can be like this the whole time. That a "bounce back" is on the horizon. I go back to hospital on Tuesday to have the portable chemo pump removed and to have stitches and lines sorted, which should make things more comfortable, so that is my "feel better" marker for this week, just need to get to Tuesday.
Saturday 26 November 2011
Letter from a friend ...
hey bro,
friendly reminder ... think of all this as something that needs to be done, and you are doing it - there's no choice you just have to. You are now on a well trodden-path that ensures you get out safely to the other side dude. Kinda like looking both ways when crossing the road, or checking your rear view mirror when changing lanes - it's just something that you have to do.
How I take on any internal demons is to take the same approach as changing the dial on the radio - if you are in a funk, then change mental channels - just click into a different 'station' - you have the ability to control your thoughts and take action. Feeling down? click your emotions into something that makes you feel up! Out of one, into the other. Its a mental adjustment, that's all. Anyone can do this you just need to learn dude.
Remember when you used to get out of the bed on the 'wrong side', Mutley style mental comments going off in your brain? Just change wavelengths and hop onto something positive and good - no longer in that black cloud funk, just click out of that. You have the ability for the 'mental switch', just click it when you are by yourself and feeling funky - its a hard thing to process, but it's really easy to hop wavelengths buddy - that's the secret to success and beating this sh*t - click into a better place.
Time only moves in one direction, so before you know it this will be over and you'll be off this path and onto a much brighter one. This is a mental game as much as physical dude, just make sure you consciously know you can win - and remind yourself of that everyday. You're a winner, you can and will win, your body will respond positively just make sure you remember you have the ability to control your thoughts -
:)
'click' switch to a new wavelength. Positive and good. Easy.
L8R
Bumblers Inc.
friendly reminder ... think of all this as something that needs to be done, and you are doing it - there's no choice you just have to. You are now on a well trodden-path that ensures you get out safely to the other side dude. Kinda like looking both ways when crossing the road, or checking your rear view mirror when changing lanes - it's just something that you have to do.
How I take on any internal demons is to take the same approach as changing the dial on the radio - if you are in a funk, then change mental channels - just click into a different 'station' - you have the ability to control your thoughts and take action. Feeling down? click your emotions into something that makes you feel up! Out of one, into the other. Its a mental adjustment, that's all. Anyone can do this you just need to learn dude.
Remember when you used to get out of the bed on the 'wrong side', Mutley style mental comments going off in your brain? Just change wavelengths and hop onto something positive and good - no longer in that black cloud funk, just click out of that. You have the ability for the 'mental switch', just click it when you are by yourself and feeling funky - its a hard thing to process, but it's really easy to hop wavelengths buddy - that's the secret to success and beating this sh*t - click into a better place.
Time only moves in one direction, so before you know it this will be over and you'll be off this path and onto a much brighter one. This is a mental game as much as physical dude, just make sure you consciously know you can win - and remind yourself of that everyday. You're a winner, you can and will win, your body will respond positively just make sure you remember you have the ability to control your thoughts -
:)
'click' switch to a new wavelength. Positive and good. Easy.
L8R
Bumblers Inc.
Friday 25 November 2011
Pumpin'
It's 6.30am Friday morning and the ward recoils into its morning groans and stretches under the fluorescent splatter of light as the nurses begin to bustle about the ward and the rattle of tea spoons on the drinks trolly bring the undead to life, very slowly.
It's been a funny night, somewhere between extereme exhustion and laying wide awake trying to suppress the ever present need to be sick. I've been issued with anti- sickness meds that the nurse had mentioned were state of the art. They are indeed, for about half an hour.
My mouth has changed too, flavours are now the wrong way around. Things I would usually enjoy are now the most repulsive things young can imagine. This mornings bowl of Frosties tastes like savoury wood shavings and bleach.
9.30am and the electronic chemo pump lets of a series of loud beeps indicating that it has delivered it's chemical payload. The nurse comes over and unhooks me from the machine and explains that they are waiting for the third load of chemo to arrive from the lab along with my mobile pump. I make full use of this time unhooked from the machine by having a shower.
Now, something I've not mentioned before is the fear I've been carrying around with regards the tubes and wires that are inserted into my torso. This completely alien concept has had me worried on many levels, so much so the I haven't really dared to look at them properly. As I slide out of my hospital robe I become acutely aware of the long full length mirror in the bathroom now sitting in the corner of my eye. Okay, here goes. I turn to see the full extent of what I'm physically going to be living with for the next 6 months. My eye is taken straight away to the clear,transparent feeding tube sitting just underneath the centre of my ribs. It cleanly exits my skin, without blood or any evidencce that it's causing any problems being there. The tube ends at a small plastic acsess toggle, and that's it. So the bit I was dreading the most, althought still very alien, isn't really as bad as I thought, and if my Frosties continue to taste like that, im going to need it sooner rather than later! I move on to inspect the Hickman Line. This involves what looks like two iPod ear phone cables that emerge from just bellow my right collar bone, both attached to a different coloured toggles, one for taking blood, the other for administering the drugs I'll need. This is a slightly messy affair still. Dried blood and stitches are trapped under a large piece of waterproof dressing, but I know from falling of my bike that blood has a tendency to make things look way worse they are. Having said that, there is a mysterious 'L' shaped wound at the base of my neck, weird. I'm no doctor but it doesn't seem to serve a purpose, is it possible a surgeon would sign his work? If so, it would appear Dr'L' was happy with his output and that's fine by me. I return from my very tentative shower to a kind of salute from the other ward members, I think they can visibly see the difference it has made.
I get settled next to my bed just as the nurse approaches with news that the pump and the rest of the chemo are ready, and I'll be able to go home right away as soom as its all fitted and working. I call Bethan, she delights in the news and jumps straight in the car. As Bethan arrives I'm just being shown how the pump works. It's all very simple. A clear plastic bottle, about the size of a coke can which is activated by a tiny heat sensor that's taped to my skin, return on Tuesday to have it removed,and that's it, off you go.
I sleep all the way home. When we get back I head straight upstairs and sleep for the rest of the afternoon. When I wake up I can hear the kids downstairs playing and laughing, giddy and exited. Bethan brings Joel up first. He's been well briefed about the fact that daddy is a bit poorly and to be gentle. I can see that this its difficult for him not to engage in our usual 'rough and tumble' routine, it's even harder for me. He lays down next to me on the bed and tells me how need to be very carful of his "toobs" and his "wump" in his neck and how he's been in the "hos-ter-pitwl" just like daddy. Cerys comes into the bedroom. She gets under covers and gently snuggles up, "are you different now daddy" she says. I reassure her that the doctor has put a special tube in daddy's chest so that he can give daddy the special medicine that he needs to get better again, she pauses for a second before breaking out into one of the songs from her Christmas play. It's good to be home.
It's been a funny night, somewhere between extereme exhustion and laying wide awake trying to suppress the ever present need to be sick. I've been issued with anti- sickness meds that the nurse had mentioned were state of the art. They are indeed, for about half an hour.
My mouth has changed too, flavours are now the wrong way around. Things I would usually enjoy are now the most repulsive things young can imagine. This mornings bowl of Frosties tastes like savoury wood shavings and bleach.
9.30am and the electronic chemo pump lets of a series of loud beeps indicating that it has delivered it's chemical payload. The nurse comes over and unhooks me from the machine and explains that they are waiting for the third load of chemo to arrive from the lab along with my mobile pump. I make full use of this time unhooked from the machine by having a shower.
Now, something I've not mentioned before is the fear I've been carrying around with regards the tubes and wires that are inserted into my torso. This completely alien concept has had me worried on many levels, so much so the I haven't really dared to look at them properly. As I slide out of my hospital robe I become acutely aware of the long full length mirror in the bathroom now sitting in the corner of my eye. Okay, here goes. I turn to see the full extent of what I'm physically going to be living with for the next 6 months. My eye is taken straight away to the clear,transparent feeding tube sitting just underneath the centre of my ribs. It cleanly exits my skin, without blood or any evidencce that it's causing any problems being there. The tube ends at a small plastic acsess toggle, and that's it. So the bit I was dreading the most, althought still very alien, isn't really as bad as I thought, and if my Frosties continue to taste like that, im going to need it sooner rather than later! I move on to inspect the Hickman Line. This involves what looks like two iPod ear phone cables that emerge from just bellow my right collar bone, both attached to a different coloured toggles, one for taking blood, the other for administering the drugs I'll need. This is a slightly messy affair still. Dried blood and stitches are trapped under a large piece of waterproof dressing, but I know from falling of my bike that blood has a tendency to make things look way worse they are. Having said that, there is a mysterious 'L' shaped wound at the base of my neck, weird. I'm no doctor but it doesn't seem to serve a purpose, is it possible a surgeon would sign his work? If so, it would appear Dr'L' was happy with his output and that's fine by me. I return from my very tentative shower to a kind of salute from the other ward members, I think they can visibly see the difference it has made.
I get settled next to my bed just as the nurse approaches with news that the pump and the rest of the chemo are ready, and I'll be able to go home right away as soom as its all fitted and working. I call Bethan, she delights in the news and jumps straight in the car. As Bethan arrives I'm just being shown how the pump works. It's all very simple. A clear plastic bottle, about the size of a coke can which is activated by a tiny heat sensor that's taped to my skin, return on Tuesday to have it removed,and that's it, off you go.
I sleep all the way home. When we get back I head straight upstairs and sleep for the rest of the afternoon. When I wake up I can hear the kids downstairs playing and laughing, giddy and exited. Bethan brings Joel up first. He's been well briefed about the fact that daddy is a bit poorly and to be gentle. I can see that this its difficult for him not to engage in our usual 'rough and tumble' routine, it's even harder for me. He lays down next to me on the bed and tells me how need to be very carful of his "toobs" and his "wump" in his neck and how he's been in the "hos-ter-pitwl" just like daddy. Cerys comes into the bedroom. She gets under covers and gently snuggles up, "are you different now daddy" she says. I reassure her that the doctor has put a special tube in daddy's chest so that he can give daddy the special medicine that he needs to get better again, she pauses for a second before breaking out into one of the songs from her Christmas play. It's good to be home.
Thursday 24 November 2011
Chemo Man.
No more sitting around waiting, it's on, round 1. The nurse comes over with a tray and starts to load up the automated pump that I have been receiving my additional hydration through. She hooks up an ominous bag of clear fluid and checks that my line is clear and ready to accept the first 2 hours worth, all hooked up it begins. I'm glad Bethan is here, I've got this weird apprehension about it all, but as it starts to go in... nothing, can't feel a thing, oh wait, there's the very faintest sensation of tiredness but it's difficult to besure, I go with it and doze off. Maybe I was super worn out anyway, perhaps falling asleep is just what I've been doing most of the time this week when someone comes along and tips another chemical into me and that's what my body now expects, not sure. Bethan is sat at the bottom of the bed, I apologise for nodding off, "don't worry" she said, "you've only been asleep for about 20 minuites." I feel fine still as the nurse hooks up another bag of different stuff for another 3 hour round, and off we go again.
We say goodbye and Bethan heads off home as I begin another round of hydration to help me process the day's chemo drugs I've just been given. This will run through the night and into the next day.
Some good news comes our way, we are asked if I'd like trial one of the new mobile chemo pumps. This will allow me to get the last third of my treatment at home each time limiting the time I'll have to spend in hospital each cycle. This will also mean I might be going home tomorrow rather than on Wednesday. They plan to give me a demo of how the pump works in the
morning.
It's almost midnight on Thursday night as I write this, I'm tired and looking forward to getting some rest. I just hope that the side effects stay away for as long as possible.
Apologies
Im using an iPad to write this blog while I'm in hospital. Reading through the blog entries I've noticed some pretty crazy spelling, I can only assume that as I've been rattling each entry off th iPad has been inserting predictive text with out me noticing- doh. I will run through and try to correct all these errors once I get back home on my main computer. Cheers.
New project.
Wednesday follows on from the first good nights sleep so far, the ward was quite and I was finally concoring the pain of Monday's procedures. The view from my 2nd floor window is of the car park, boring you say, I disagree. Sitting in he window looking out at that car park rivals an episode of Eastenders for drama. Arguing couples, seagulls linching sandwiches from people, busy professional people rushing from Mercedes to appointment, air ambulance coming and going... Who needs tv?(mines broken anyway). The day seems to trundle on divided by meals and painkillers. Visiting time comes around, Bethan and my Mum enter the ward and it's as though someone has turn the dimmer switch up. Their smiles alone are a huge lift.
We sit and talk about home and the kids and what every one has been up to. A nurse comes over and mentions that a bed has been made available in Lowan ward and they would like to move me down there later on today. Lowan is the main adult cancer ward at Trelisk hospital and it's when I am booked to receive my first round of chemotherapy.
Is is possible to create a synthetic jacket potato, because it tastes like I've just eaten one, and the lump on cheese I've just popped I my mouth, was actually the butter!
Early evening passes and a grumpy porter collects me and my stuff and crashes me and my bed through every double door and threshold down to Lowan.
Expecting to see devistating scenes of the varying effects of this horrendous disease, I was was pleasently surprised. The ward is small with very limited views to the outside world, but it's clean, comfortable and above all it's quite. The patients in there all have hair and with the exception of the chap in the corner who is completely yellow everyone looks kind of normal, ill, but normal.
Having settled in and chatting to a couple of the other patients Im approached by one of the nurses who explains that it is essential for me to be hydrated before they begin the treatment. I'm handed a chart and some cardboard messuring jugs an told that every time I pee I need to measure the quantity and note it down on the time chart. Okay, I can do that. I'm hooked up to a saline drip via my Hickman line (the one in my chest). This is the first time it's been used so I was a bit apprehensive, but it feels fine. It's late, so the lights fade down and everyone begins the main event... The Fart League. I can only assume here is some kind of tally being kept because there seemes to be an unnatural amount of effort being put into ths be several members of he ward.
It's 3am and the "league" have simmered down to squeaks and grumbles. I really need the toilet, but I'm laid there trying to figure out how this is going to be achieved, with all my attached equipment, cardboard buckets, darkness, room full of sleeping strangers etc, it seems like a daunting task. I manage to get sorted and begin my urine production sheet with an impressive 950ml it must have been all the time I spent trying to figure it all out.
I've started dreaming mug more. Perhaps it's the medication? but each night seems to carry dreams that are flavoured with surfing and riding my bike with friends and family. I think that even though I've only been here for 4 of the proposed 10 nights and despite my best efforts to focus on the serious task at hand, I'm missing home.
We sit and talk about home and the kids and what every one has been up to. A nurse comes over and mentions that a bed has been made available in Lowan ward and they would like to move me down there later on today. Lowan is the main adult cancer ward at Trelisk hospital and it's when I am booked to receive my first round of chemotherapy.
Is is possible to create a synthetic jacket potato, because it tastes like I've just eaten one, and the lump on cheese I've just popped I my mouth, was actually the butter!
Early evening passes and a grumpy porter collects me and my stuff and crashes me and my bed through every double door and threshold down to Lowan.
Expecting to see devistating scenes of the varying effects of this horrendous disease, I was was pleasently surprised. The ward is small with very limited views to the outside world, but it's clean, comfortable and above all it's quite. The patients in there all have hair and with the exception of the chap in the corner who is completely yellow everyone looks kind of normal, ill, but normal.
Having settled in and chatting to a couple of the other patients Im approached by one of the nurses who explains that it is essential for me to be hydrated before they begin the treatment. I'm handed a chart and some cardboard messuring jugs an told that every time I pee I need to measure the quantity and note it down on the time chart. Okay, I can do that. I'm hooked up to a saline drip via my Hickman line (the one in my chest). This is the first time it's been used so I was a bit apprehensive, but it feels fine. It's late, so the lights fade down and everyone begins the main event... The Fart League. I can only assume here is some kind of tally being kept because there seemes to be an unnatural amount of effort being put into ths be several members of he ward.
It's 3am and the "league" have simmered down to squeaks and grumbles. I really need the toilet, but I'm laid there trying to figure out how this is going to be achieved, with all my attached equipment, cardboard buckets, darkness, room full of sleeping strangers etc, it seems like a daunting task. I manage to get sorted and begin my urine production sheet with an impressive 950ml it must have been all the time I spent trying to figure it all out.
I've started dreaming mug more. Perhaps it's the medication? but each night seems to carry dreams that are flavoured with surfing and riding my bike with friends and family. I think that even though I've only been here for 4 of the proposed 10 nights and despite my best efforts to focus on the serious task at hand, I'm missing home.
Tuesday 22 November 2011
Getting Tubed II
Okay, so the big day I'd been dreading. A double whammy of operations under local (still awake!) anesthetic. One to for the Hickman line and the other to put a feeding tube in my stomach. Google both these things, I dare ya! Pretty gross, and very scary for someone who will only to he dentist if he has to.
7 am begins a 48 fast, so the bowl of soggy Rice Krispies I'm eating just doesn't seem to be hitting the mark. I still have this hard plastic tube stuck to my face with surgical tape and reaching down into my stomach like a long uncomfortable fish bone. I'm told that this will go once the operations are complete, kind of a two for one trade off.
I'm wheeled down to the x- ray surgery unit. It's awesome, whiter than white with a brighter than bright sy-fi feel. Huge complex machines over scale people in scrubs and goggles. A cheary surgeon emerges like something from a cheesy medical sitcom discussing "surgery matters" with a band of eager followers while stripping of blue rubber gloves and tossing them in a big metal bin and throwing out his hand and introducing himself to me. "so your our man... err Mr McQueen (wait for it), any relation to Steve?" I've been asked this question so many times in my life over the years I've developed a very straight faced resoponce to this question, "yes he's my great uncle, but he never liked me" he surgeon look me dead I the eye and cracks a smile. Right, let's go through this procedure, what we're going to do today is..... I sign the concent forms and off we go.
Tender is not the word, I'm returned to my bed in the ward, drunk from the massive dose of local aneshetic, feeling like I've been shot in the chest! I lay motionless for fear of igniting the pain grenades in my body. Reflecting on the procedure, there was a couple of bee stings and lot of pushing and pulling, but no real pain as such. The same can not be said for now. I'm given a clear drip fed pain killer and I drift away to sleep. I wake with Bethan by the side of the bed stroking the top of my hand, I cant focus and keep drifting in and out of consciousness. I apologised for not being much company, and drifted off again.
In the morning I cant help but scowl at the patients opposite and there delicious soggy cornflakes and luke warm tea. I look up at the clear bag of fluid that is plugged into my side, mmmm breakfast.I'm issued with a tiny beaker of clear liquid, which I take without complaint. It tastes like oranges and limes and with in two minutes of drinking this liquid I'm shivering, burning and all at sea with sweat firing out of ever pore,im having some kind of reaction. The only thing in my mind is how there is no way I can be sick, A. I dont have anything in my stomach and B. with all the stuff hanging out of my torso and the pain associated you can forget pain grenades, I'll set off the whole armoury!... So I hang tight while the nurse shoots another liquid into the canular in the crook of my arm which an instant equalising effect. "this will make your head fuzzy...." once again I drift away into yet another bottomless sleep.
I wake up just I time to see Bethan looking round the curtain, it's visiting time again, where did that day go? I'm still in a lot of pain, she helps my out of bed pausing at regular intvals to allow me to take in the pain in between movements. With a bowl of water and cloth she washes my face and back washing away the fatigue of laying almost motionless for such along time. It feels like on of those after work surfs, when you've been working all day in the Summer time, your gritty and grimy and all you can think about is getting in the sea. When that moment finally arrives and you're emersed in the water and feel the day and its negatives flush away, your reset, restored, realigned and retuned to a functioning state.
Baked to dryness maccaroni cheese and a small pot of ice cream are tasting like the finest food on the planet as the 48hr fast is lifted. With in minutes the colour is coming back to my face, I feel a pulse of strength which is deepend by the nurse removing the fluid drip from my side. I'm free, not hooked up or plugged in. It's recommended that we go for a walk down the corridor as soon as I feel well enough. That would be now.
Me and Bethan walk hand in hand down the long hospital corridor and talk about the kids and the house and for a second it's like none of this is happening. We return to the ward, the ENT nurse and head and neck specialist are in the reception area and comment as we past "look at you, very impressive to be up and on like that", I can't help thinking I'm being assessed for the main event. It feels good to know I've got the nod.
As I lay in bed writing this I still feel sore as hell, but I know it's getting better and quickly. Having said that, it better had. Chemotherapy is booked to start on Thursady.
7 am begins a 48 fast, so the bowl of soggy Rice Krispies I'm eating just doesn't seem to be hitting the mark. I still have this hard plastic tube stuck to my face with surgical tape and reaching down into my stomach like a long uncomfortable fish bone. I'm told that this will go once the operations are complete, kind of a two for one trade off.
I'm wheeled down to the x- ray surgery unit. It's awesome, whiter than white with a brighter than bright sy-fi feel. Huge complex machines over scale people in scrubs and goggles. A cheary surgeon emerges like something from a cheesy medical sitcom discussing "surgery matters" with a band of eager followers while stripping of blue rubber gloves and tossing them in a big metal bin and throwing out his hand and introducing himself to me. "so your our man... err Mr McQueen (wait for it), any relation to Steve?" I've been asked this question so many times in my life over the years I've developed a very straight faced resoponce to this question, "yes he's my great uncle, but he never liked me" he surgeon look me dead I the eye and cracks a smile. Right, let's go through this procedure, what we're going to do today is..... I sign the concent forms and off we go.
Tender is not the word, I'm returned to my bed in the ward, drunk from the massive dose of local aneshetic, feeling like I've been shot in the chest! I lay motionless for fear of igniting the pain grenades in my body. Reflecting on the procedure, there was a couple of bee stings and lot of pushing and pulling, but no real pain as such. The same can not be said for now. I'm given a clear drip fed pain killer and I drift away to sleep. I wake with Bethan by the side of the bed stroking the top of my hand, I cant focus and keep drifting in and out of consciousness. I apologised for not being much company, and drifted off again.
In the morning I cant help but scowl at the patients opposite and there delicious soggy cornflakes and luke warm tea. I look up at the clear bag of fluid that is plugged into my side, mmmm breakfast.I'm issued with a tiny beaker of clear liquid, which I take without complaint. It tastes like oranges and limes and with in two minutes of drinking this liquid I'm shivering, burning and all at sea with sweat firing out of ever pore,im having some kind of reaction. The only thing in my mind is how there is no way I can be sick, A. I dont have anything in my stomach and B. with all the stuff hanging out of my torso and the pain associated you can forget pain grenades, I'll set off the whole armoury!... So I hang tight while the nurse shoots another liquid into the canular in the crook of my arm which an instant equalising effect. "this will make your head fuzzy...." once again I drift away into yet another bottomless sleep.
I wake up just I time to see Bethan looking round the curtain, it's visiting time again, where did that day go? I'm still in a lot of pain, she helps my out of bed pausing at regular intvals to allow me to take in the pain in between movements. With a bowl of water and cloth she washes my face and back washing away the fatigue of laying almost motionless for such along time. It feels like on of those after work surfs, when you've been working all day in the Summer time, your gritty and grimy and all you can think about is getting in the sea. When that moment finally arrives and you're emersed in the water and feel the day and its negatives flush away, your reset, restored, realigned and retuned to a functioning state.
Baked to dryness maccaroni cheese and a small pot of ice cream are tasting like the finest food on the planet as the 48hr fast is lifted. With in minutes the colour is coming back to my face, I feel a pulse of strength which is deepend by the nurse removing the fluid drip from my side. I'm free, not hooked up or plugged in. It's recommended that we go for a walk down the corridor as soon as I feel well enough. That would be now.
Me and Bethan walk hand in hand down the long hospital corridor and talk about the kids and the house and for a second it's like none of this is happening. We return to the ward, the ENT nurse and head and neck specialist are in the reception area and comment as we past "look at you, very impressive to be up and on like that", I can't help thinking I'm being assessed for the main event. It feels good to know I've got the nod.
As I lay in bed writing this I still feel sore as hell, but I know it's getting better and quickly. Having said that, it better had. Chemotherapy is booked to start on Thursady.
Monday 21 November 2011
Getting Tubed
The tube is hooked up to a bag of what looks like emulsion paint, this is the contrast dye that they will need to see the position of my stomach for the fitting of the PEG feeding tube tomorrow.
Night time comes round quickly, Bethan heads off home and I'm left there thinkin about the next ten days away from the kids and what's going to happen in that time. Hospitals are funny places, practical, efficent, busy, but there's so much stuff that doesn't lend itself to "feeling better" the fluorescent lights that seem to gently strobe inside your mind when you close our eyes, the close proximity to folk on their last legs serving as a constant reminder of your own mortality and how badly our bodies can and most likely will let us down at some point in our lives oh, and a "ninja" cheese and cucumber sandwich, that managed to get past my tast buds without being detected.
Still, I've got a secret weapon in all this... music, and it all sounds so good right now. I'm armed with 5000 or so songs from Black Flag to The Beach Boys from Sabbath to The Smiths and everyone is lighting me up from the inside out without exception.
Saturday 19 November 2011
Dr Feelgood.
It's the night before going into hospital for the first round of Chemotherapy. I feel perfectly fine, still no symptoms of any kind aside from the small painless lump on the side of my neck.
Monday will see them fitting me with a Hickman Line and PEG tube. The Hickman line is a flexable catheter that goes into my chest and allows the Chemo drugs to be given for extended periods of time, in my case five days at a time. The Peg or feeding tube is a thin tube that is inserted into my stomach and allows food and additional meds to given should i loose the ability to swallow through the side effects of the radio therapy in a few weeks time. They like to get that in early so that it settles and there is less risk of infection and other complications.
I'll be honest, it's all been explained and it's all very necessary, but it's freaking me out a bit at the thought of all this stuff. I hoping its going to be like wearing wrist watch. You put it on and with in short while you forget it's there, but I guess we'll just have to see.
Monday will see them fitting me with a Hickman Line and PEG tube. The Hickman line is a flexable catheter that goes into my chest and allows the Chemo drugs to be given for extended periods of time, in my case five days at a time. The Peg or feeding tube is a thin tube that is inserted into my stomach and allows food and additional meds to given should i loose the ability to swallow through the side effects of the radio therapy in a few weeks time. They like to get that in early so that it settles and there is less risk of infection and other complications.
I'll be honest, it's all been explained and it's all very necessary, but it's freaking me out a bit at the thought of all this stuff. I hoping its going to be like wearing wrist watch. You put it on and with in short while you forget it's there, but I guess we'll just have to see.
priorities...
Speaking of positivity, this is the point where I get thank you- my freinds and family for the amazing support and kindness. I'm writing this blog as a way to keep those who want to know, informed as to what's going on. I think I've said this many times over this week, but don't feel for a second like messaging, texting and communicating in any way is not welcome, it's been the only thing that's kept out spirits afloat over the last two weeks through all this, so please keep it coming. If I don't get back right away it's because I'm in hospital having treatment or I'm sleeping off said treatment or just generally feeling a bit wack!, but I will get back to you. peace.
... the day before.
... So I've decided to start this blog. It was suggested by a good friend of mine as way to communicate to a lot of people that all want the same information, but also as a way of getting stuff out of your head, just somewhere to put things down and get it processed instead of bottling it all up, makes perfect sense to me.
I'm sitting hear writing this the day before I begin the first barrage of Cheamotherapy. It's all pretty daunting, just knowing that I feel as right as rain and within a few days I'm going to be full of highly toxic, cell destroying chemicals that are going to make me very ill indeed. Im trying not to think this way, but its feeling like the last day I'm ever going to feel like this! Just got to keep in mind that its the treatment making me better and not the cancer making me ill. As a good friend has said to me in the last week "One clear path, between you right now and your destination, which is to be cancer free and well again." it keeps ringing around in my head, and it helps no end.
I'm sitting hear writing this the day before I begin the first barrage of Cheamotherapy. It's all pretty daunting, just knowing that I feel as right as rain and within a few days I'm going to be full of highly toxic, cell destroying chemicals that are going to make me very ill indeed. Im trying not to think this way, but its feeling like the last day I'm ever going to feel like this! Just got to keep in mind that its the treatment making me better and not the cancer making me ill. As a good friend has said to me in the last week "One clear path, between you right now and your destination, which is to be cancer free and well again." it keeps ringing around in my head, and it helps no end.
Treatment.
We are told that this form of cancer is very rare and has no identifiable cause. It accounts for only 1% of cancers found in the UK... but the good news is it is also highly treatable as it's known to be very sensitive to Chemotherapy and Radiaton... That's what we want to hear!
On the flip side they also make no bones about the "intensity" of the treatment required to get the job done.
This will take the form of 6 months of Cheamotherapy and Radiotherapy, with the strong possibility of side effects that will last well beyond that time. Right now I just want to live, so anything is acceptable from where I'm standing.
On the flip side they also make no bones about the "intensity" of the treatment required to get the job done.
This will take the form of 6 months of Cheamotherapy and Radiotherapy, with the strong possibility of side effects that will last well beyond that time. Right now I just want to live, so anything is acceptable from where I'm standing.
...what is normal?
It's 15 days since the first meeting with the ENT specialist with regards an ear infection that anti biotics didn't seem to be shifting. I've got pretty chronic surfers ear, so I'm well used to ear infections and water getting trapped behind the bony growths and causing my hearing to be muffled for a couple of weeks before it clears.
After several visits to the GP and multiple rounds of anti- biotics, im still deaf in my left ear with tinnitus so bad it sounds like a constant fire alarm! Im driving over to the specialists office at Trelisk hospital, having ridden 20 miles on my bike the day before and surfed the day before that, I'm feeling as fit and as healthy as person can. The thoughts that were in my mind were, okay see the doctor, get some super strength tablets and get this gone!
About an hour later I was driving home, with only one thing on my mind "how the hell am I going to tell Bethan that they think I have Cancer?"
The week that followed was unbelievable. Waves of strength and hope one second being washed away with fear and terrifying uncertainty the next. I understand now that this was the fear of not fully knowing the extent of what I was facing. Once the call came the following Thursday confirming the presence of cancer, it was almost weirdly reassuring.
The biopsy followed on the Monday, with a meeting of all the head and neck cancer team the following day to discuss the results. Scaumus Cancer cells we're evident in both the primary tumour behind my nose and the small lump on my neck.
After several visits to the GP and multiple rounds of anti- biotics, im still deaf in my left ear with tinnitus so bad it sounds like a constant fire alarm! Im driving over to the specialists office at Trelisk hospital, having ridden 20 miles on my bike the day before and surfed the day before that, I'm feeling as fit and as healthy as person can. The thoughts that were in my mind were, okay see the doctor, get some super strength tablets and get this gone!
About an hour later I was driving home, with only one thing on my mind "how the hell am I going to tell Bethan that they think I have Cancer?"
The week that followed was unbelievable. Waves of strength and hope one second being washed away with fear and terrifying uncertainty the next. I understand now that this was the fear of not fully knowing the extent of what I was facing. Once the call came the following Thursday confirming the presence of cancer, it was almost weirdly reassuring.
The biopsy followed on the Monday, with a meeting of all the head and neck cancer team the following day to discuss the results. Scaumus Cancer cells we're evident in both the primary tumour behind my nose and the small lump on my neck.
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