I'm sitting here at 4:30am writting this. I woke up dying of thirst. My heart rate? Ridiculously high, I don't even want to write it here, as I'm so scared of it. This has made me make a decision. I have an appointment on the 28th for an ECG to check my heart out - at Cookridge. It was mentioned that if they admitted me it would be at St. James'. This tells me that they are obviously concerned and with my current state I fully expect them to admit me.
As unpleasant as it will be, to go through two ESHAPs and a stem cell transplant - provided they don't change the regime - I think it needs to be done. I can't live like this anymore, in denial of what's going on. Hoping, and attributing clear cancer symptoms to other things. My immune system is weak, I got shingles. I have had night sweats, although these seem to be improving, for the past few months. And now this, tachycardia, as it is called. Typing Hodgkin's and tachycardia into Google comes up with plenty of results. Not to mention the lumps under my right arm.
I'm hoping my mum will stay over and let my Dad drive back to France on his own, so she can be bring me healthy, and tasty, food to the hospital. And the odd freshly squeezed fruit and vegetable juices.
This sucks. Hopefully I'll be up and running by summer...I'll let you know what happens.
Sunday, December 24, 2006
Friday, December 22, 2006
from bad to worse
I have been slowly improving from the shingles attack. The numbness hasn't all gone in my back but I no longer have the associated spine pain. Presumably this is to do with the chinese herbal pills I was given since it cleared up fairly quickly once I started on those.
Now I have a new problem. For a while now I have been getting tired when walking up stairs and to the high street, at the top of a hill called the Steep, just outside my home. I've needed a rest for things I used to run up just a couple of months ago. Maybe I should have picked up on it sooner, but I was laying in bed the other night, all relaxed, when I realised my heart was going like the clappers. I'm talking 100 beats a minute.
I've come accross this before, in late 2005 I was rushed into hospital with fluid around my heart and lungs - I had extreme water retention. My legs were like elephant legs, with no sign of ankle, and I had a bit of a spare tire 'round my waist. I was extremely tired all the time and required a good 4 hour sleep every afternoon. I went to Holland to see my Grandparents and while I was gone Imelda was so worried about me she booked me in for an urgent CT scan. I knew straight away something was wrong, apart from the inability to walk 20 meters without catching my breath, the oncologist came running out the moment the CT scan was finished. She said I had to go to hopsital immediately. I was admitted straight away and was started on chemotherpay, which I had been avoiding for 6 months, and presumably a cocktail of other drugs, in a private room. I spent a week in there and slowly recovered. My resting heart rate at the time was nearing 120bpm.
This time the symptoms aren't nearly as bad and I've caught it farily early on. But why? I have had an appointment made for the 28th of December, this may include an ultrasound to see the extent of the fluid. In addition to that I have a CT scan on the 11th of January.
I have contacted my homeopathic doctor who told me to get it checked out at the conventional doctor in the first place. I have been prescribed some New Era tablets that help dissipate fluid build up. I guess I have about a week to get this under control...
I am very worried about though. The odds are that the cancer is back. I recently promised myself that I wouldn't have any more chemotherapy. That if I was meant to die, I would die. I have no fear of death in the slightest, but every time I think of how Imelda will cope and how my family and friends will cope I cry. I feel like I don't want to let them down. But I'm so tired of this. I know people go through a lot worse and make it through. Maybe I'm weak, but I don't want to have to start a new battle. Who knows what I'll say or think when I get the results of the scans, maybe I'll have new fight, but the thought of going into hopsital and having pipes stuck into me and being hooked up to machines for 8 hours a day, followed by a month in almost solitary confinement frightens the life out of me. I just imagine myself laying there, with no emotion on my face. Equally, if it is back, and I decide to not have conventional treatment and my alternatives don't work then it's not going to be a nice quiet death. I imagine it would get quite painful toward the end.
What's the lesser of two evils? The truth is, I want to live, not being afraid of dying is not choosing to die. I have a lot to do with my life. Various sources have told me of a child I will father, be it my own or adopted. The general consensus in the hippy crowd (as some would call them) is that I will live. But that's not given, I still have to work for it, and making this decision is all part of it. Logically, I decided against chemo and a stem cell transplant in the past and it was got me no-where (apart from a fun summer). Maybe it is time I went the whole hog and see where that takes me.
How many times is this decision going to come 'round?
Now I have a new problem. For a while now I have been getting tired when walking up stairs and to the high street, at the top of a hill called the Steep, just outside my home. I've needed a rest for things I used to run up just a couple of months ago. Maybe I should have picked up on it sooner, but I was laying in bed the other night, all relaxed, when I realised my heart was going like the clappers. I'm talking 100 beats a minute.
I've come accross this before, in late 2005 I was rushed into hospital with fluid around my heart and lungs - I had extreme water retention. My legs were like elephant legs, with no sign of ankle, and I had a bit of a spare tire 'round my waist. I was extremely tired all the time and required a good 4 hour sleep every afternoon. I went to Holland to see my Grandparents and while I was gone Imelda was so worried about me she booked me in for an urgent CT scan. I knew straight away something was wrong, apart from the inability to walk 20 meters without catching my breath, the oncologist came running out the moment the CT scan was finished. She said I had to go to hopsital immediately. I was admitted straight away and was started on chemotherpay, which I had been avoiding for 6 months, and presumably a cocktail of other drugs, in a private room. I spent a week in there and slowly recovered. My resting heart rate at the time was nearing 120bpm.
This time the symptoms aren't nearly as bad and I've caught it farily early on. But why? I have had an appointment made for the 28th of December, this may include an ultrasound to see the extent of the fluid. In addition to that I have a CT scan on the 11th of January.
I have contacted my homeopathic doctor who told me to get it checked out at the conventional doctor in the first place. I have been prescribed some New Era tablets that help dissipate fluid build up. I guess I have about a week to get this under control...
I am very worried about though. The odds are that the cancer is back. I recently promised myself that I wouldn't have any more chemotherapy. That if I was meant to die, I would die. I have no fear of death in the slightest, but every time I think of how Imelda will cope and how my family and friends will cope I cry. I feel like I don't want to let them down. But I'm so tired of this. I know people go through a lot worse and make it through. Maybe I'm weak, but I don't want to have to start a new battle. Who knows what I'll say or think when I get the results of the scans, maybe I'll have new fight, but the thought of going into hopsital and having pipes stuck into me and being hooked up to machines for 8 hours a day, followed by a month in almost solitary confinement frightens the life out of me. I just imagine myself laying there, with no emotion on my face. Equally, if it is back, and I decide to not have conventional treatment and my alternatives don't work then it's not going to be a nice quiet death. I imagine it would get quite painful toward the end.
What's the lesser of two evils? The truth is, I want to live, not being afraid of dying is not choosing to die. I have a lot to do with my life. Various sources have told me of a child I will father, be it my own or adopted. The general consensus in the hippy crowd (as some would call them) is that I will live. But that's not given, I still have to work for it, and making this decision is all part of it. Logically, I decided against chemo and a stem cell transplant in the past and it was got me no-where (apart from a fun summer). Maybe it is time I went the whole hog and see where that takes me.
How many times is this decision going to come 'round?
Friday, December 08, 2006
running on empty
I'm not doing all that great at the moment. I feel constantly run down, I sweat most nights, my kidney's ache, I have a lump under my right arm, and my temperature keeps going up.
Doesn't sound to good does it. In fact all of the symptoms are of the Hodgkin's coming back. The thing is, my homeopathic and radionic doctor doesn't think it's back, and my chinese medicine doctor doesn't think it is back.
Right or wrong, I trust them both implicitly and am going with what they say. You may think I'm mad, and maybe I am, but I can only trust my gut instinct. When my logical head kicks in it just gets in the way and makes me all depressed.
I saw on the news the other night that a 16 year old girl had decided to refuse luekemia treatment and to die at home. She was given an award by a cancer charity for her bravery. How different attitudes can be at different hospitals. Good luck to her.
Doesn't sound to good does it. In fact all of the symptoms are of the Hodgkin's coming back. The thing is, my homeopathic and radionic doctor doesn't think it's back, and my chinese medicine doctor doesn't think it is back.
Right or wrong, I trust them both implicitly and am going with what they say. You may think I'm mad, and maybe I am, but I can only trust my gut instinct. When my logical head kicks in it just gets in the way and makes me all depressed.
I saw on the news the other night that a 16 year old girl had decided to refuse luekemia treatment and to die at home. She was given an award by a cancer charity for her bravery. How different attitudes can be at different hospitals. Good luck to her.
Saturday, November 25, 2006
tick, tick, tick, BOOM!
Every now and then I have an incredible burst of emotion at what a difficult time this has been for me. Usually something small and insignifican sets me off and then it's a spiral of anxiety and anger and despair.
I'm not sure if the Reiki has anything to do with it as I have read of a 'Healing Crisis' where everything comes out. I suppose it's a good thing to let all that anger out, as scary as it may be, it allows me to move on.
Do this, do that, take this pill, take that pill, eat this, don't eat that, have a scan, results day, think like this, smile more, be more kind, relax, don't let things get you down, think positive, you might be ill, you are ill, i found a lump, have some chemo, have stem cell therapy, avoid chemo it poisons the body, clean the liver, flush the kidneys, change your attitude, meditate, do some Reiki, trace meridians, balance chakras, don't say that, pray, what you reap is what you sow, karma, love yourself, love others, feeling better?
All this conflicting information builds up and sometimes it gets so difficult to know what to believe. Sometimes I wish I didn't have the 'alternative' healing beliefs and just blindly give myself over to the doctors and say 'fix me'. I can't do that, and it's not easy being the odd ball when it comes to health. It is the one thing you can't buy your way out of, the one thing that there is no hard and fast answer to. The one thing you can't escape no matter where you go on the planet - it's always with you. I guess the only true way out is to die, but I don't want to do that. And besides, I believe, that if I don't face my issues in this life I'll only have to deal with them in a future life. You can't escape what you have to learn as a person, as a soul, as an everlasting being. It's these thoughts that allow me to get out of my depressive angry state and say 'right, lets get on with it then'. But I do think it's healthy to explode with anger sometimes and get it all out.
I didn't know I was feeling that way until it happened, and therefore it would be difficult to get counselling because I wouldn't feel comfortable having an outburst like that in front of anyone that I didn't trust and love implicitly, and also, I can't really describe fully how I felt. It's a 'in the moment' thing, and like a dream afterwards I can't fully recall what it was all about.
How does Bob Marley like his donuts? Wi' Jammin.
I'm not sure if the Reiki has anything to do with it as I have read of a 'Healing Crisis' where everything comes out. I suppose it's a good thing to let all that anger out, as scary as it may be, it allows me to move on.
Do this, do that, take this pill, take that pill, eat this, don't eat that, have a scan, results day, think like this, smile more, be more kind, relax, don't let things get you down, think positive, you might be ill, you are ill, i found a lump, have some chemo, have stem cell therapy, avoid chemo it poisons the body, clean the liver, flush the kidneys, change your attitude, meditate, do some Reiki, trace meridians, balance chakras, don't say that, pray, what you reap is what you sow, karma, love yourself, love others, feeling better?
All this conflicting information builds up and sometimes it gets so difficult to know what to believe. Sometimes I wish I didn't have the 'alternative' healing beliefs and just blindly give myself over to the doctors and say 'fix me'. I can't do that, and it's not easy being the odd ball when it comes to health. It is the one thing you can't buy your way out of, the one thing that there is no hard and fast answer to. The one thing you can't escape no matter where you go on the planet - it's always with you. I guess the only true way out is to die, but I don't want to do that. And besides, I believe, that if I don't face my issues in this life I'll only have to deal with them in a future life. You can't escape what you have to learn as a person, as a soul, as an everlasting being. It's these thoughts that allow me to get out of my depressive angry state and say 'right, lets get on with it then'. But I do think it's healthy to explode with anger sometimes and get it all out.
I didn't know I was feeling that way until it happened, and therefore it would be difficult to get counselling because I wouldn't feel comfortable having an outburst like that in front of anyone that I didn't trust and love implicitly, and also, I can't really describe fully how I felt. It's a 'in the moment' thing, and like a dream afterwards I can't fully recall what it was all about.
How does Bob Marley like his donuts? Wi' Jammin.
Wednesday, November 22, 2006
Reiki me.
I am slowly getting over this shingles. I still get tired a lot, have random pains and enjoy a good scratching session daily but it's getting there.
Last night and tonight I am doing a Reiki course, this will give me Reiki I and allow me to heal myself as well as friends and family. The main reason that I've done is that throughout this cancer experience I have become a much more spiritual person. I feel that Reiki is a good was of begining in a 'healing' field allowing me to develop my own way of channeling positive energy.
The other reason I have done is because I need to get out of this terrible habit I have got myself into. A downward spiral of fear whenever I feel anything remotely out of the ordinary on my body. I get myself into extremely paranoid upset states and I become totally illogical, convinced that the cancer is back. It is a terrible situation to be in and I refuse to let my life be governed by fear. It is not pleasant for me and it's not pleasant for those around me. Having learned Reiki, when I find anything unusual, instead of constantly poking at the area, inflamming it, and creating negative thought patterns which over time can and will become real, I can heal myself, calm myself and channel positive energy to the area. Over time I will be able to get out of this negativity and lead a normal life, without the fear of cancer creeping up on me.
That's the theory anyway, and with the ammount I've read about quantum physics, mechanics, spirituality, eastern medicine, western medicine, and dealing with a life threatening disease, I think it makes a whole lot of sense.
Last night and tonight I am doing a Reiki course, this will give me Reiki I and allow me to heal myself as well as friends and family. The main reason that I've done is that throughout this cancer experience I have become a much more spiritual person. I feel that Reiki is a good was of begining in a 'healing' field allowing me to develop my own way of channeling positive energy.
The other reason I have done is because I need to get out of this terrible habit I have got myself into. A downward spiral of fear whenever I feel anything remotely out of the ordinary on my body. I get myself into extremely paranoid upset states and I become totally illogical, convinced that the cancer is back. It is a terrible situation to be in and I refuse to let my life be governed by fear. It is not pleasant for me and it's not pleasant for those around me. Having learned Reiki, when I find anything unusual, instead of constantly poking at the area, inflamming it, and creating negative thought patterns which over time can and will become real, I can heal myself, calm myself and channel positive energy to the area. Over time I will be able to get out of this negativity and lead a normal life, without the fear of cancer creeping up on me.
That's the theory anyway, and with the ammount I've read about quantum physics, mechanics, spirituality, eastern medicine, western medicine, and dealing with a life threatening disease, I think it makes a whole lot of sense.
Friday, November 10, 2006
wrap up warm.
I had my checkup yesterday and it was better than I thought, in terms of chemo pressure anyway. I was checked in the lump regions and something was spotted under my right arm, and in my neck. Under my arm I knew about - the difference this time is that it is quite sore, whereas cancer lumps are usually painless. All my other symptoms can be attributed to the shingles, which are dragging out. I feel run down all the time, like I have flu. I could really do with lying on a beach under the hot sun somewhere instead of having to constantly keep myself warm in this rainy and grey and damp and cold time of year.
I am booked in for a CT scan 5 weeks from now. That gives the shingles time to clear up and will allow an accurate representation of what is really going on. December the 14th will tell me if I'm having a good Christmas or an extremely crappy one. I live in hope, but at the moment I feel so physically and emotionally run down. I think my mood will improve as my shingles does. I hope so anyway, people must be getting really pissed off with my bad attitude...
I am booked in for a CT scan 5 weeks from now. That gives the shingles time to clear up and will allow an accurate representation of what is really going on. December the 14th will tell me if I'm having a good Christmas or an extremely crappy one. I live in hope, but at the moment I feel so physically and emotionally run down. I think my mood will improve as my shingles does. I hope so anyway, people must be getting really pissed off with my bad attitude...
Thursday, November 09, 2006
would you like an immune system destruction with that?
I have an appointment this afternoon at the hospital. I'm not looking forward to it in the slightest. I have a lot of respect for the doctors and for what they do but I don't think they have looked into my case satisfactorily. Ever since that last scan where they said 'It looks like it's back - let's destroy your immune system' I have been very worried. I have been happy, and have had a lot of fun but that constant pressure and stress has not been good for me. I think that the shingles was partly a build up of stress. Sometimes I wish I could just leave my body, and all the pressures placed upon it and me, for a while. I'm going today for a blood test. I know that they will try and persuade me to have chemo and that is the part I just can't be bothered with. I place far more trust in my radionic doctor and my chinese doctor. We shall see...
Wednesday, November 08, 2006
shiver me shingles.
Getting over this shingles is taking some time. The rash is clearing up very well, but now I am covered in scabs and every time I move I get a lot of pain as the large scab-sheeting cracks. But this goes deeper, apart from the rash it has also meant I have been very tired for the past 2 weeks. I feel tired and often go for a little nap. Hopefully I'll get over this as soon as...
Tuesday, October 31, 2006
day 1
well, day 1. I didn't get very far. What happened was, last Wednesday/Thursday I noticed a very small rash at the base of my spine. I felt a bit run down and I wondered what it was but it didn't look serious. I though maybe it was some toxins coming out after my Aqua Detox. By Sunday it was a HUGE rash, on the right side of my body, with blisters, soreness and generally unappetising.
First thing Monday morning I went to the doctors. It turns out I have a rather nasty case of the Shingles. I am lucky because it often means a lot of pain, but mine isn't too bad, apart from the soreness of the rash and the position of it makes it had to sit and sleep.
I have been given some pills that shoul clear it up. Shingles is a re-currence of the chickenpox virus that sits in your body, dormant, until it decided to flare up in immuno-compromised people - i.e. chemotherapy/cancer sufferers. It looks better already today as it dries out, but it will take a few weeks for the new skin to replace the rash.
Is i possible the detox caused my body to eject it out into my skin? Not sure really...
So, anyway, I decided to not do the fast since I may be needing some nutrition. What I've decided to do is to live on a raw juice diet, with a green leafy meal in the evening. That should boost my immune system. I've also stopped drinking for the time being - which may annoy me somewhat since I'm going to a bonfire on Saturday where, apart from the fire, the most common theme will be alcohol.
First thing Monday morning I went to the doctors. It turns out I have a rather nasty case of the Shingles. I am lucky because it often means a lot of pain, but mine isn't too bad, apart from the soreness of the rash and the position of it makes it had to sit and sleep.
I have been given some pills that shoul clear it up. Shingles is a re-currence of the chickenpox virus that sits in your body, dormant, until it decided to flare up in immuno-compromised people - i.e. chemotherapy/cancer sufferers. It looks better already today as it dries out, but it will take a few weeks for the new skin to replace the rash.
Is i possible the detox caused my body to eject it out into my skin? Not sure really...
So, anyway, I decided to not do the fast since I may be needing some nutrition. What I've decided to do is to live on a raw juice diet, with a green leafy meal in the evening. That should boost my immune system. I've also stopped drinking for the time being - which may annoy me somewhat since I'm going to a bonfire on Saturday where, apart from the fire, the most common theme will be alcohol.
Friday, October 27, 2006
extreme measures
This fungal infection has been going on for months now. I have been told that is is Candida Krusei, a similar form to Candida Albicans. The body can usually cope with fungal infections, creating anti-bodies to deal with them just as it would with any other ill-ness. A compromised immune system allows the infection to get out of hand. Despite the chemo I received my immune system seems ot be very good at fighting things like colds but I just can seem to shake off this candida.
Yesterday I noticed some spots at the base of my spine and on my right hip. I found this quite alarming as I am doing various things to fight it but obviously I am not doing enough. I dug out the book 'Conquering Cystitis' by Dr. Patrick Kinglsey - the doctor who treated me about 2 years ago when I was secondly diagnosed with cancer - he has since retired. There is a lot of incredibly useful inforfation in there relating to all sort of problems that you wouldn't think were fungal.
I have decided to do a 5 day fast starting next Monday. I will eat nothing, and I can only drink water. I have done some further reasearch and while it won't be a pleasant experience, it will be extremely benificial. I feel I need to do something extreme to nip this i the bud before it gets even more out of hand. Therefore I am not planning on doing anything at all next week that involves leaving the house as I'm sure my energy will be down.
I shall report my findings in this very space...
Yesterday I noticed some spots at the base of my spine and on my right hip. I found this quite alarming as I am doing various things to fight it but obviously I am not doing enough. I dug out the book 'Conquering Cystitis' by Dr. Patrick Kinglsey - the doctor who treated me about 2 years ago when I was secondly diagnosed with cancer - he has since retired. There is a lot of incredibly useful inforfation in there relating to all sort of problems that you wouldn't think were fungal.
I have decided to do a 5 day fast starting next Monday. I will eat nothing, and I can only drink water. I have done some further reasearch and while it won't be a pleasant experience, it will be extremely benificial. I feel I need to do something extreme to nip this i the bud before it gets even more out of hand. Therefore I am not planning on doing anything at all next week that involves leaving the house as I'm sure my energy will be down.
I shall report my findings in this very space...
Wednesday, October 25, 2006
aqua detox, friend or foe?
One of the re-occuring advices I have been receiving is to clear my liver and kidneys of the harmful chemo-therapy drugs. Chemo drugs deposit in the kidneys and can cause further cancers later in life. I try to drink lots of water, and juice 3 times a week. At times I can feel the congestion in my kidneys and it is always something that gets mentioned when I have 'alternative' therapies.
One that I recently started is called 'Aqua Detox'. It involves placing you feet in a bowl of water (foot spa style), which contains an electrical unit, which is attached to a control box. Saline is placed in the water and a (very) small electrical charge is passed through the water. This then draws toxins out through the thousands of pores in the feet. The results are dramatic with the water turning brown, almost black by the end of the half hour treatment. There was also a lot of fatty, frothy scum on the surface of the water. It was a nice treatment and my feet felt great. Note also that section of your feet a linked to every organ in your body, reflexology style.
This was last Monday. Here I am at 4am on a Wednesday morning unable to sleep because of 'burning' in my kidneys. It's a feeling I know well from when I was having chemo. My presumtion is that, having had the treatment, the toxins have been dislodged and are causing some irritation. This doesn't particularly worry me as it makes complete sense, and many detox therapies that I have had and read about speak of returning symptoms as the toxins move around the body on their way out. Think of it like a jar of water with sediment in the bottom. If you shake it up the sediment will mix with the water and turn it cloudy. The same is happening in my body, and as it begins to settle again it is finding new places to deposit itself. Hence detox requires a regular, prolonged program.
The company that produces the machine is Aqua Detox.
I have done a search on Google and it has brought up some interesting comments regarding this treatment. There seems to be a lot of disagreement over whether the treatment actually does anything or whether it is just another scam. Mainly it speaks about the fact that the browning of the water is due to the iron element in the water rusting. I can see that, when I started my treatment I saw brown coming from the element. In fact I can understand all the arguments against, as there often are with 'alternative' procedures, especially from the conventional medicine world (the same one that gives doctors an optional 1 hour session on nutrition and its role in health? - excuse my cinisism). The fact is, brown water from iron or my feet, that it has stirred something up in my kidneys. I am looking forward to my course of treatments and the health benefits it will bring. I will continue to report my findings.
One that I recently started is called 'Aqua Detox'. It involves placing you feet in a bowl of water (foot spa style), which contains an electrical unit, which is attached to a control box. Saline is placed in the water and a (very) small electrical charge is passed through the water. This then draws toxins out through the thousands of pores in the feet. The results are dramatic with the water turning brown, almost black by the end of the half hour treatment. There was also a lot of fatty, frothy scum on the surface of the water. It was a nice treatment and my feet felt great. Note also that section of your feet a linked to every organ in your body, reflexology style.
This was last Monday. Here I am at 4am on a Wednesday morning unable to sleep because of 'burning' in my kidneys. It's a feeling I know well from when I was having chemo. My presumtion is that, having had the treatment, the toxins have been dislodged and are causing some irritation. This doesn't particularly worry me as it makes complete sense, and many detox therapies that I have had and read about speak of returning symptoms as the toxins move around the body on their way out. Think of it like a jar of water with sediment in the bottom. If you shake it up the sediment will mix with the water and turn it cloudy. The same is happening in my body, and as it begins to settle again it is finding new places to deposit itself. Hence detox requires a regular, prolonged program.
The company that produces the machine is Aqua Detox.
I have done a search on Google and it has brought up some interesting comments regarding this treatment. There seems to be a lot of disagreement over whether the treatment actually does anything or whether it is just another scam. Mainly it speaks about the fact that the browning of the water is due to the iron element in the water rusting. I can see that, when I started my treatment I saw brown coming from the element. In fact I can understand all the arguments against, as there often are with 'alternative' procedures, especially from the conventional medicine world (the same one that gives doctors an optional 1 hour session on nutrition and its role in health? - excuse my cinisism). The fact is, brown water from iron or my feet, that it has stirred something up in my kidneys. I am looking forward to my course of treatments and the health benefits it will bring. I will continue to report my findings.
Saturday, October 14, 2006
Thursday, October 12, 2006
hamster jam.
So things are still going well for me. I have been seeing a Chinese medicine man recently who has prescribed me with some Shiitake pills, and is treating my meridian points via my ears (ears have 180 points relating to parts of the body). I have had a tincture made up to help rid me of the fungal infection - which has nearly cleared up. I am also continuing to receive Radionic treatment and tablets from my Homeopathic doctor. Then there's the healer who I go and see on a regular basis to balance me. Oh, and I go to a meditation course and try to meditate a few times a week.
Quite a busy healing lifestyle. And it's not exactly cheap either, but it's only money and I prefer this to going into hospital.
I am going to Amsterdam for 3 days on Monday with some friends. I have been plenty of times but always with my girlfriend, this time it's 5 lads in the international city of sin and, I have to say, I'm vey much looking forward to it!
Quite a busy healing lifestyle. And it's not exactly cheap either, but it's only money and I prefer this to going into hospital.
I am going to Amsterdam for 3 days on Monday with some friends. I have been plenty of times but always with my girlfriend, this time it's 5 lads in the international city of sin and, I have to say, I'm vey much looking forward to it!
Wednesday, September 27, 2006
The Bogeyman
Right, this is the story so far:
At the moment I am refusing treatment. About 6 weeks ago I had three night sweats in a row, and night sweats are always the first sign of cancer for me. So I got all worried and got a scan at the hospital. The results showed that there was 'something' there. The doctors were very much 'maybe it's back'. Either way they wanted me to begin that very intense chemotherapy and stem cell transplant. I said that I would have it. However, since that point I have had no more night sweats, I am not fatigued, and I'm not losing weight so I've put my treatment on hold. I don't want to go through all that on a 'maybe'. Additionally, I have been doing a little bit of research (as in I typed into Google!) and around that time I started to get a fungal infection in my hands and feet as a result of my lowered immune response due to previous chemotherapies. I still have it today and it's proving to be a pain to get rid of since it only shows up in certain spots but is in fact throughout my body. Anyway, fungal infections can cause night sweats and enlargement of lymph nodes. Based on that I want to wait and see what happens. In the mean time I am on homeopathic remedies and more to try and clear this up. It's been and is being a difficult time again as I can't seem to shake off the 'in limbo' situation of having (had) cancer. But I am learning to live with it and I'm having a really good time in my life right now.
I am also going to see the Slackers on Sunday! Can't wait.
At the moment I am refusing treatment. About 6 weeks ago I had three night sweats in a row, and night sweats are always the first sign of cancer for me. So I got all worried and got a scan at the hospital. The results showed that there was 'something' there. The doctors were very much 'maybe it's back'. Either way they wanted me to begin that very intense chemotherapy and stem cell transplant. I said that I would have it. However, since that point I have had no more night sweats, I am not fatigued, and I'm not losing weight so I've put my treatment on hold. I don't want to go through all that on a 'maybe'. Additionally, I have been doing a little bit of research (as in I typed into Google!) and around that time I started to get a fungal infection in my hands and feet as a result of my lowered immune response due to previous chemotherapies. I still have it today and it's proving to be a pain to get rid of since it only shows up in certain spots but is in fact throughout my body. Anyway, fungal infections can cause night sweats and enlargement of lymph nodes. Based on that I want to wait and see what happens. In the mean time I am on homeopathic remedies and more to try and clear this up. It's been and is being a difficult time again as I can't seem to shake off the 'in limbo' situation of having (had) cancer. But I am learning to live with it and I'm having a really good time in my life right now.
I am also going to see the Slackers on Sunday! Can't wait.
Thursday, August 31, 2006
from zero to heaven in seven.
It seems my lack of total commitment to positive thinking has helped me overcome the news of my next involuntary hurdle. I am soon to be graced with 3 months of pin-cushion hell as I undertake 2 more ESHAP sessions followed by a BEAM with Stem Cell Transplant. Oh the joys of life.
In other news, it does mean I can (hopefully) go and see the Slackers in Sheffield and Samiam in Leeds, but will miss Rancid.
In other news, it does mean I can (hopefully) go and see the Slackers in Sheffield and Samiam in Leeds, but will miss Rancid.
waiting...
Yesterday I had a CT scan. Today I will get the results. I haven't had a nightsweat for weeks now. If it wasn't for the petit pois size I lumps under my right arm I would not be feeling like this. I don't know how to feel. I don't want to feel posisitve because I don't want my hopes dashed.
I had totally resigned myself to the fact that I needed more treatment but since I've had no more symptoms...
I guess I'll find out in about 9 hours.
I had totally resigned myself to the fact that I needed more treatment but since I've had no more symptoms...
I guess I'll find out in about 9 hours.
Sunday, August 20, 2006
why oh why oh why oh why!
I found a couple of small lumps under my arm. So I've pretty much resigned myself to the fact that I gotta go into hospital and have a stem cell transplant. I'm pretty annoyed about it but the thing that drives me insane is this:
My favourite band of all time (along with Sublime) are the Slackers. They are ska band from New York. They are just incredible. Check out The Slackers Website. Many moons ago when I played saxophone in a band called Lubby Nugget we had a support slot with them in Cardiff. We didn't play the show because the band was going through some difficult times and the guitarist decided he wasn't playing it. Earlier this year I had tickets to go and see them in London. I couldn't go because of treatment. I still have the tickets and use them as a bookmark. Now I've seen they are playing in Sheffield on October the 1st. Even if everything happens on the dates I expect I will be only just out of hospital on this date. This is no time to go to a crowdy, sweaty, gig with low immunity.
F U C K !
My favourite band of all time (along with Sublime) are the Slackers. They are ska band from New York. They are just incredible. Check out The Slackers Website. Many moons ago when I played saxophone in a band called Lubby Nugget we had a support slot with them in Cardiff. We didn't play the show because the band was going through some difficult times and the guitarist decided he wasn't playing it. Earlier this year I had tickets to go and see them in London. I couldn't go because of treatment. I still have the tickets and use them as a bookmark. Now I've seen they are playing in Sheffield on October the 1st. Even if everything happens on the dates I expect I will be only just out of hospital on this date. This is no time to go to a crowdy, sweaty, gig with low immunity.
F U C K !
Friday, August 18, 2006
calm down
I went to see a healer yesterday who made me feel a whole lot better. Then I went to the hospital. My bloods were fine. They checked for lumps and couldn't find any. I will be having a CT scan next week. Here's hoping...
Thursday, August 17, 2006
just when I thought it was safe to go back in the water.
Just a week ago I was wondering where this blog was going to go now that I was better. It can now continue right where it left off. For the past three nights I have had nightsweats and I am pretty sure that the cancer is back.
I am going to go to the hospital today and give them the news and then I'm guessing I will be straight in for the stem cell transplant; the very thing I decided not to have just 3 months ago. Dr. Johnson advised me strongly to go for it and I didn't. He said that after this there was no protocol since it would be such a development in the cancer. As we already have the stem cells he stated that we would most likely go with the SCT and hope for the best.
I'm not sure how I feel. Until I go to the hospital and speak to them about it and have some sort of regime determined it feels like a dream, a bad one. I just feel numb.
I am going to go to the hospital today and give them the news and then I'm guessing I will be straight in for the stem cell transplant; the very thing I decided not to have just 3 months ago. Dr. Johnson advised me strongly to go for it and I didn't. He said that after this there was no protocol since it would be such a development in the cancer. As we already have the stem cells he stated that we would most likely go with the SCT and hope for the best.
I'm not sure how I feel. Until I go to the hospital and speak to them about it and have some sort of regime determined it feels like a dream, a bad one. I just feel numb.
Friday, August 11, 2006
don't fall, you might fly.
I guess all you folks will be right on the edge of your seat waiting for my next blog entry, well move back onto your seat in an upright manner because I am here to satisfy your desires.
The news is this. My mouth ulcers and general soreness is gone. I can once again enjopy a large helping of Tabasco on my palate. The crazy spot appearances on my hands, ends of toes, a few up my arms, no longer hurt and are starting to dissapear also. I just need to shed more skin. It takes longer to get over this than I imagined.
I still have the occasional paranoia sequence but I am a happy chappy.
I guess this blog will somewhat be coming to an end. I will keep you updated on my cancer related progress...however. A friend and I have started another blog called Brainilack. It's not big, it's not clever, and it does contain banned language. So don't read it.
The news is this. My mouth ulcers and general soreness is gone. I can once again enjopy a large helping of Tabasco on my palate. The crazy spot appearances on my hands, ends of toes, a few up my arms, no longer hurt and are starting to dissapear also. I just need to shed more skin. It takes longer to get over this than I imagined.
I still have the occasional paranoia sequence but I am a happy chappy.
I guess this blog will somewhat be coming to an end. I will keep you updated on my cancer related progress...however. A friend and I have started another blog called Brainilack. It's not big, it's not clever, and it does contain banned language. So don't read it.
Monday, July 31, 2006
and they will come out through your skin...
I seem to be having similar skin issues as when I first had chemo therapy, even though it is now a good 2 months since my last fill-up. It was said that the drugs take up to a year to get out of your system so I guess mine are coming out and causing a few unwanted side effects. I've had plenty of spots, mouth ulcers, random achy pains, and other type lumps.
I know that they are not cancer symptoms, but it is still very difficult to get those cancer thoughts out of your head. After the last cancer, about 4 years ago, it took a good 6 months before I left behind my incredible sickening paranoia at any slight bump under the skin. The worry made me sick in itself. I am determined not to let that happen this time but it is still a scary, yet happy, time.
I know that they are not cancer symptoms, but it is still very difficult to get those cancer thoughts out of your head. After the last cancer, about 4 years ago, it took a good 6 months before I left behind my incredible sickening paranoia at any slight bump under the skin. The worry made me sick in itself. I am determined not to let that happen this time but it is still a scary, yet happy, time.
Thursday, July 27, 2006
I saw monkeys
What an excellent month this has been. First of all I refused medical intervention and as a reward I went to Malaga for 2 weeks on my own. This was highly enjoyable. I took off my watch, ate when I wanted, slept when I wanted, did anything I wanted. It was great. Met some cool people, too...
Then I came home for four days to glorious CO2 induced British summer, then once again to Spain. This time with my girlfriend, Imelda, and good friends Ali and Gareth. A day in Valencia, a night in Barcelona, and 5 days of pool lounging and sea swimming.
Today I had a checkup at the hospital and it all went great. No problems here.
It is really hard to get out of the routine of being ill. Without a never ending schedule of blood tests, chemo-therapy, scan here, scan there, it's difficult to know what is happening. Now that it is happening I am going to do my best to start all the things I promised myself I would do once it was all over with. Mostly this is doing what I want to do, not what others want me to do. I will also be having a lot of fun.
Then I came home for four days to glorious CO2 induced British summer, then once again to Spain. This time with my girlfriend, Imelda, and good friends Ali and Gareth. A day in Valencia, a night in Barcelona, and 5 days of pool lounging and sea swimming.
Today I had a checkup at the hospital and it all went great. No problems here.
It is really hard to get out of the routine of being ill. Without a never ending schedule of blood tests, chemo-therapy, scan here, scan there, it's difficult to know what is happening. Now that it is happening I am going to do my best to start all the things I promised myself I would do once it was all over with. Mostly this is doing what I want to do, not what others want me to do. I will also be having a lot of fun.
Tuesday, June 20, 2006
hospital or Spain? Both options are grey.
I have decided not to have the stem cell transplant. I have let the hospital know and I will have my Groshong line removed on Friday. That makes it pretty final. There are some worries, as always, but I am feeling very confident. The fact that the scan was comepletely clear very much influenced this decision and also makes a lot easier to tell people it's all over without going into detail about not having SCT - I think they just pressume it's no longer required by the hospital. I'm certainly not going to worry them with the ins and outs of it all.
My homeopathy has started, which isn't so many pills as I had imagined. I have also just booked a trip to Spain. On my own for 2 weeks so I can eat, think, read, and walk health. If that doesn't focus me I don't know what will. There'll be nothing else to do but focus!
Even if it doesn't work out this time my stem cells are banked and ready to go; but that's not going to happen.
On a lighter note, my hair has started to grow back and checking myself out in the mirror today I noticed two grey hairs. I was hoping they would not return, but alas it seems they have; well, I am nearing my thirties!
My homeopathy has started, which isn't so many pills as I had imagined. I have also just booked a trip to Spain. On my own for 2 weeks so I can eat, think, read, and walk health. If that doesn't focus me I don't know what will. There'll be nothing else to do but focus!
Even if it doesn't work out this time my stem cells are banked and ready to go; but that's not going to happen.
On a lighter note, my hair has started to grow back and checking myself out in the mirror today I noticed two grey hairs. I was hoping they would not return, but alas it seems they have; well, I am nearing my thirties!
Friday, June 16, 2006
Re: mission
Yesterday I had the results of my CT scan and it was good, I quote,
"The chemotherapy couldn't have gone any better".
There were no signs of tumours anywhere. So what does this mean? Well, they still want to go ahead with stem cell therapy to make sure that any remaing cells, too small to be picked up by CT, are killed off. The statistics show that this then gives you a 50/50 chance of not developing cancer again. Along with associated future problems of the BEAM chemo that they give you just before returning the stem cells to you. These include heart, lung, bone, liver, kidney etc. problems. None of these are life threatening problems and there is only a small risk of developing them, but the risk is there.
So, not really sure what to do with this one. I am now leaning toward not having the SCT. But that doesn't mean I will get back to normal life, no. If I don't have it I will be spending that month doing a combination of Gerson therapy, homeopathic, and spiritual 'medicine' to kill off any remaining cancer cells. Giving my body a complete clear out by eating highly nutritional foods and continuing to develop myself spiritually to be a more balanced person. I can hardly believe I'm being so frank about it here since many people will be thinking I'm stupid for taking the risk...again. However, I have been and am going on a life changing journey that, unless you've been through this, you couldn't understand. And even people that have gone through something like this maybe would not understand since the journey is different for everyone. Cancer changes you. I believe it has taught me some very serious lessons and taken me on a new direction in life. I am not the same person I was and in a way I am pleased that this has happened. No, I'm not happy with all the injections, treatments, pain, and mental anguish; but I am happy with who I've become because of it.
I have a lot of thinking to do this weekend. I'm glad the sun is shining.
"The chemotherapy couldn't have gone any better".
There were no signs of tumours anywhere. So what does this mean? Well, they still want to go ahead with stem cell therapy to make sure that any remaing cells, too small to be picked up by CT, are killed off. The statistics show that this then gives you a 50/50 chance of not developing cancer again. Along with associated future problems of the BEAM chemo that they give you just before returning the stem cells to you. These include heart, lung, bone, liver, kidney etc. problems. None of these are life threatening problems and there is only a small risk of developing them, but the risk is there.
So, not really sure what to do with this one. I am now leaning toward not having the SCT. But that doesn't mean I will get back to normal life, no. If I don't have it I will be spending that month doing a combination of Gerson therapy, homeopathic, and spiritual 'medicine' to kill off any remaining cancer cells. Giving my body a complete clear out by eating highly nutritional foods and continuing to develop myself spiritually to be a more balanced person. I can hardly believe I'm being so frank about it here since many people will be thinking I'm stupid for taking the risk...again. However, I have been and am going on a life changing journey that, unless you've been through this, you couldn't understand. And even people that have gone through something like this maybe would not understand since the journey is different for everyone. Cancer changes you. I believe it has taught me some very serious lessons and taken me on a new direction in life. I am not the same person I was and in a way I am pleased that this has happened. No, I'm not happy with all the injections, treatments, pain, and mental anguish; but I am happy with who I've become because of it.
I have a lot of thinking to do this weekend. I'm glad the sun is shining.
Thursday, June 08, 2006
rapidrise is the way forward
As it's such a sunny day I decided to go out on my bike; the first time in at least 6 months. So I got the bike out of the walkin wardrobe/shed and dusted it off, pumped up the tires and made my way up to the Chevin. I had a great time. If anyone ever said that you never forget how to ride a bike then they were wrong. My skills were somewhat lacking. Rocks that I would have sailed over in the past were quite a struggle for me this time around. I'm sure it will come back fairly quickly though.
The wind blowing through my hair* felt amazing. I'm not going to leave it that long again!
*When I say hair I mean through the vents of my helmet onto my sweaty bald head.
The wind blowing through my hair* felt amazing. I'm not going to leave it that long again!
*When I say hair I mean through the vents of my helmet onto my sweaty bald head.
Is that a laboratory in your pocket or are you just pleased to see me?
Early Monday morning I woke, sat up in bed and read for a while. At five past seven it dawned on me that I needed to be at the hospital for 7:30! A mad rush and we made it for eight. Not a problem it seemed; In fact I didn't get seen until 8:30. Along came a doctor and I was asked to remove my trousers, and then my boxer shorts. My privates were then covered witha towel and the doctor went to work. A bit of pain from a local anastheatic followed by a small incision and a pipe, not all that dfifferent froma Hickman line, was inserted about 7cm to left of my tackle and sewn down. Not as bad as I had thought it would be but certainly not good.
A taxi to Seacroft hospital where I was promptly supplied with an egg sandwich and cup of coffee, along with a constant supply of biscuits and chocolate bars whilst I waited and waited and waited for my blood test results. All was fine so i was hooked up to the, rather DIY looking, machine that would seperate my stem cells from the rest of my blood. A nurse sits there with you for the full four hours as they constantly have to monitor what is happening and make slight adjustments here and there to make sure that the maximum number of cells are being extracted. A TV and video was brought over and I watched Cool Runnings. The time actually went fairly quickly.
A taxi back to St. James' and more waiting for the results. When they finally came in I was told there weren't enough (a count of 2.4 and they needed a minimum 3) so I would have to stay in over night. Despite my protesting (and a lot of protesting) they convinced my to stay in over night. I wanted to go home and come back in the morning but apparently this pipe could start bleeding and as it is in a major vein there mould be a A LOT of blood.
The next day same again but this time it took ages to get the results back, and even though it was 99.9% likely that I would have enough cells this time they wouldn't take the pipe out until we got confirmation. At about 5pm we did get the results. 2.7, what a surprise, NOT! so totalled together I have a 5.1 (and minimum 3 needed). So off we go to work removing the line from my groin. A stitch here, a stitch there, and then the doctor puls out the pipe. And pulls, and pulls, this thing is HUGE! The amount of pipe that was in me was unbelievable, it was a good 10cm long and half a centimeter wide! No wonder they didn't let me home, I would have bled to death. Finally I could go home and what was scheduled to be one day turned into two full days with a night in hospital.
Some things I discovered on this little trip:
The St. James' hospital canteen is absolutely diabolical. There is no excuse for food of such a low grade. I'm sure many patients would like a nice place to eat when friends and family come to visit, it would be uplifting to feel like you'd gone out, especially if you are spending a long time in hospital.
Give blood, there service is excellent and they really look after you. I'm trying to convince my girlfriend to become a donor but, like many, is scared of needles. The pain from giving blood is like being nipped on the arm so get over it and do some good!
Become a bone marrow donor. It would mean being hooked up tot his machine for four hours, but the line wouldn't be required as they'd just hook your arms up. I couldn't do that because the veins in my arm are so knackered from chemotherapy anf the flow wouldn't be good enough.
And finally, something I've observed MANY times before. The doctors and nurses drip feed you selected information! I didn't know there was a posibility I would have to stay in over night. I didn't even bring my pyjamas. I was very angry about it. They just assume you will know, or that you don't have any plans. Here's some news for you, my life doesn't revolve around cancer, I also do other things, and therefore I need to know in great detail when treatments and appointments will affect my life.
A taxi to Seacroft hospital where I was promptly supplied with an egg sandwich and cup of coffee, along with a constant supply of biscuits and chocolate bars whilst I waited and waited and waited for my blood test results. All was fine so i was hooked up to the, rather DIY looking, machine that would seperate my stem cells from the rest of my blood. A nurse sits there with you for the full four hours as they constantly have to monitor what is happening and make slight adjustments here and there to make sure that the maximum number of cells are being extracted. A TV and video was brought over and I watched Cool Runnings. The time actually went fairly quickly.
A taxi back to St. James' and more waiting for the results. When they finally came in I was told there weren't enough (a count of 2.4 and they needed a minimum 3) so I would have to stay in over night. Despite my protesting (and a lot of protesting) they convinced my to stay in over night. I wanted to go home and come back in the morning but apparently this pipe could start bleeding and as it is in a major vein there mould be a A LOT of blood.
The next day same again but this time it took ages to get the results back, and even though it was 99.9% likely that I would have enough cells this time they wouldn't take the pipe out until we got confirmation. At about 5pm we did get the results. 2.7, what a surprise, NOT! so totalled together I have a 5.1 (and minimum 3 needed). So off we go to work removing the line from my groin. A stitch here, a stitch there, and then the doctor puls out the pipe. And pulls, and pulls, this thing is HUGE! The amount of pipe that was in me was unbelievable, it was a good 10cm long and half a centimeter wide! No wonder they didn't let me home, I would have bled to death. Finally I could go home and what was scheduled to be one day turned into two full days with a night in hospital.
Some things I discovered on this little trip:
The St. James' hospital canteen is absolutely diabolical. There is no excuse for food of such a low grade. I'm sure many patients would like a nice place to eat when friends and family come to visit, it would be uplifting to feel like you'd gone out, especially if you are spending a long time in hospital.
Give blood, there service is excellent and they really look after you. I'm trying to convince my girlfriend to become a donor but, like many, is scared of needles. The pain from giving blood is like being nipped on the arm so get over it and do some good!
Become a bone marrow donor. It would mean being hooked up tot his machine for four hours, but the line wouldn't be required as they'd just hook your arms up. I couldn't do that because the veins in my arm are so knackered from chemotherapy anf the flow wouldn't be good enough.
And finally, something I've observed MANY times before. The doctors and nurses drip feed you selected information! I didn't know there was a posibility I would have to stay in over night. I didn't even bring my pyjamas. I was very angry about it. They just assume you will know, or that you don't have any plans. Here's some news for you, my life doesn't revolve around cancer, I also do other things, and therefore I need to know in great detail when treatments and appointments will affect my life.
Saturday, June 03, 2006
ah shutupayaface
Well, after yesterday's little out burst I feel much better about things today. I went to the hospital to get some antibiotics for a little cough I have and spoke to some of the nurses for some stem cell transplant truth. I asked them directly if I'd be able to navigate myself to the toilet even at the lowest of points. It seems I will.
I did receive this information in an email yesterday from my oncology nurse though; 'The stay in hospital is usually 4 weeks for the stem cell transplant and usually it takes approximately 3 - 6 months to recover completely and have your energy levels restored.'
This is a normal person though. I am not normal and no chemo has ever held me back for long. I will be back on track in no time. Watch this space.
I did receive this information in an email yesterday from my oncology nurse though; 'The stay in hospital is usually 4 weeks for the stem cell transplant and usually it takes approximately 3 - 6 months to recover completely and have your energy levels restored.'
This is a normal person though. I am not normal and no chemo has ever held me back for long. I will be back on track in no time. Watch this space.
Friday, June 02, 2006
prelude to a harvest
Monday will be a spectacular day spent having a stem cell harvest. This consists of the following:
Arrive at St. James' at 7:30 am to be seen by a doctor and have a pipe inserted into an artery near my groin. I then hang around for hospital transport to take me to Seacroft where they do the Harvest (provided my blood count is high enough). If they have enough stem cells I go back to Jimmy's for the pipe removing. If not I get to stay in hospital another night so they can do it all again on Tuesday.
I will be 27 years old on Monday the 5th.
This is going to be a shit day, but this is the point; when I was first told '...and then we'll do a stem cell harvest...', I ask, 'how long does that take?', 'oh, about 4 hours'.
Why don't they just tell the truth? Yes the actual procedure takes 4 hours but I'm going to be there ALL day. They should just say that. It makes me wonder what other information they trickle feed to me. The stem cell transplant, with a three and half week hospital visit, will undoubtedly be a lot worse than they have let on. Not in terms of feeling sick but things like having to measure how much you piss (I had to do that previously and I hate it), and I've heard, not sure so don't quote me, that I'll be so weak that I have piss and shit in those special receptacles. It's degrading.
Just doing a Google search on 'stem cell tranplant' brings up the following nuggets (from cancerbackup.org.uk):
'This intensive treatment will completely destroy all your normal bone marrow' -mmm, nice. Sounds like a good way to help someone. To help you we are going to take you to within an inch of your life and then let/hope you recover.
This may sound so very negative but I am pissed off right now. I actually feel very positive that I am learning all I need from this cancer experience. I am really happy and looking forward to the future as well as fully enjoying (most of) now. Plus I just pianted the bedroom and it's much better, a nice healing sky blue colour.
Arrive at St. James' at 7:30 am to be seen by a doctor and have a pipe inserted into an artery near my groin. I then hang around for hospital transport to take me to Seacroft where they do the Harvest (provided my blood count is high enough). If they have enough stem cells I go back to Jimmy's for the pipe removing. If not I get to stay in hospital another night so they can do it all again on Tuesday.
I will be 27 years old on Monday the 5th.
This is going to be a shit day, but this is the point; when I was first told '...and then we'll do a stem cell harvest...', I ask, 'how long does that take?', 'oh, about 4 hours'.
Why don't they just tell the truth? Yes the actual procedure takes 4 hours but I'm going to be there ALL day. They should just say that. It makes me wonder what other information they trickle feed to me. The stem cell transplant, with a three and half week hospital visit, will undoubtedly be a lot worse than they have let on. Not in terms of feeling sick but things like having to measure how much you piss (I had to do that previously and I hate it), and I've heard, not sure so don't quote me, that I'll be so weak that I have piss and shit in those special receptacles. It's degrading.
Just doing a Google search on 'stem cell tranplant' brings up the following nuggets (from cancerbackup.org.uk):
'This intensive treatment will completely destroy all your normal bone marrow' -mmm, nice. Sounds like a good way to help someone. To help you we are going to take you to within an inch of your life and then let/hope you recover.
This may sound so very negative but I am pissed off right now. I actually feel very positive that I am learning all I need from this cancer experience. I am really happy and looking forward to the future as well as fully enjoying (most of) now. Plus I just pianted the bedroom and it's much better, a nice healing sky blue colour.
Saturday, May 27, 2006
Stem Cell Harversting
My stem cell harvest has been booked for my birthday of all days. It consists of having a large needle put into one arm and a smaller one in the other. Actually it seems the veins in my arms have had it due to previous chemo and now there will be a pipe put into my groin. How great.
Then for four hours they pump blood out of the big needle into a cetrifugal machine that seperates the stems cells from my blood, and then puts the blood back through the small needle into me. These stem cells are then frozen, I pressume, for use at a later date. What later date I am not sure. The stem cell transplant takes about 4 weeks in hospital. I really want to enjoy the summer and totally don’t want to do it. I saw my oncologist yesterday and he’s into me having it (not surprisingly) but I don’t want to be in here for a month while the sun is shining outside. I’ve thought about maybe delaying it until September but that is three months away. Not sure if they’d be up for that. In the mean time I have some alternative healing tricks up my sleeve. I’ll wait until I reavel them to the general public since some may consider them fairly wacky, due to ingorance or being afraid of the unknown or being generally not understanding and thinking ‘modern’ medicine is the greatest things since drug patenting.
Haha, don’t think you know it all. There’s much more to life than this materialistic plain that we live in/on. This dis-ease has thrown me into discovering the other sides of life much quicker. I’ve always questioned things I am told and this is no exception.
Then for four hours they pump blood out of the big needle into a cetrifugal machine that seperates the stems cells from my blood, and then puts the blood back through the small needle into me. These stem cells are then frozen, I pressume, for use at a later date. What later date I am not sure. The stem cell transplant takes about 4 weeks in hospital. I really want to enjoy the summer and totally don’t want to do it. I saw my oncologist yesterday and he’s into me having it (not surprisingly) but I don’t want to be in here for a month while the sun is shining outside. I’ve thought about maybe delaying it until September but that is three months away. Not sure if they’d be up for that. In the mean time I have some alternative healing tricks up my sleeve. I’ll wait until I reavel them to the general public since some may consider them fairly wacky, due to ingorance or being afraid of the unknown or being generally not understanding and thinking ‘modern’ medicine is the greatest things since drug patenting.
Haha, don’t think you know it all. There’s much more to life than this materialistic plain that we live in/on. This dis-ease has thrown me into discovering the other sides of life much quicker. I’ve always questioned things I am told and this is no exception.
Wednesday, May 24, 2006
Just a few thoughts whilst in here.
I’ve been in three days now and things are going ok. Chemo does make me very tired but I got a very good nights sleep last night and am hoping for the saem tonight. I have had a torrent of visiters which is always very nice. Thanks.
The water retension, just like last time has started to set it. I’ve told the nurses about it some hopefully this time something can be done about it before it really takes over. Last time it took a good week once out of hospital to clear. Some diuretics, and otherwise prune juice should do the trick.
Whilst being in here I dream of doing very simple things. I really feel like going to play pool. Going on a weekend camping trip with friends. Over the past year I’ve noticed I’ve become much less materialistic. I appreciate the little things in life. The things that mean something. I’ve realised that things we buy are just ‘things’. Yes, they’re good and are fun but they are just things. When I dropped a pile of CDs onto my brand new laptop keyboard and broke the keys I just wasn’t that bothered. In the past I would have had that sinking feeling in my stomach but this time it was nothing. Annoyance, that’s all, and good. It’s fixed now and it didn’t cost a thing. Nothing to worry about. The suns out; I want out of here.
The water retension, just like last time has started to set it. I’ve told the nurses about it some hopefully this time something can be done about it before it really takes over. Last time it took a good week once out of hospital to clear. Some diuretics, and otherwise prune juice should do the trick.
Whilst being in here I dream of doing very simple things. I really feel like going to play pool. Going on a weekend camping trip with friends. Over the past year I’ve noticed I’ve become much less materialistic. I appreciate the little things in life. The things that mean something. I’ve realised that things we buy are just ‘things’. Yes, they’re good and are fun but they are just things. When I dropped a pile of CDs onto my brand new laptop keyboard and broke the keys I just wasn’t that bothered. In the past I would have had that sinking feeling in my stomach but this time it was nothing. Annoyance, that’s all, and good. It’s fixed now and it didn’t cost a thing. Nothing to worry about. The suns out; I want out of here.
Monday, May 22, 2006
Are You In, or Are You Out?
After a little bit of uncertainty whether I was coming into hospital or not due to bed availability issues, I am in. After a succesful blood test I have this time had a Groshing line in. These are similar to Hickman lines but the installation procedure is different; and this time I was fully awake to experience it. No tomazepan or morphine this time, just a bit of local anastheatic. I also had two students watching the procedure so that meant a full commentary of exactly what was happening, even though I couldn’t see it, which included an in depth review of what can go wrong; how confidence inspiring. It wasn’t too bad though but it is weird having so much pressure applied to your chest whilst they feed the pipe through without actually feeling any pain. I am pleased to announce that my line doesn’t include any of those crazy, chest stabbing, clamps. And as I’m not starting the chemo I can leave the hospital this evening and go out for dinner with Imelda.
Friday, May 19, 2006
Life with a cold head
Forgot to mention that this time it was a very quick hair loss scheme. On the previous chemo (ABVD), although I didn't lose all my hair, what I did lose was a very slow progress. I guess different types of chemo, and different people have very individual reactions. The majority of the public have no idea there are so many different types of chemo, relying entirely on the media's depiction of chemotherapy. This usually has a character losing all their hair from one soap episode to the next. Although cancer is a very much spoken about and advertised subject people are very in the dark about it all. There are so many people I speak to that have never even heard of the lymph nevermind what it actually does...but then, doctors haven't a clue about what's good and bad for lymph (diet wise).
This isn't an attack on the public at all. I was in the dark as well but this has been going on for such a long time now that it is hard to remember what it was like to not have such a detailed databank on cancer. I'm not even saying that people should have this knowledge.
Some good friends mentioned that I now look like Lex Luthor. A mastermind? Yes. A criminal? No..erm, yes, on some levels.
This isn't an attack on the public at all. I was in the dark as well but this has been going on for such a long time now that it is hard to remember what it was like to not have such a detailed databank on cancer. I'm not even saying that people should have this knowledge.
Some good friends mentioned that I now look like Lex Luthor. A mastermind? Yes. A criminal? No..erm, yes, on some levels.
Garibaldi? No, Tommybaldi
I've been back a few days now after my excellent time in Rome. It was a greatly needed break. A break from everything, I ate what I wanted, I drank lots (well, at €3 for half a litre of house wine it would be rude, and stupid, not to).
It was a holiday of two halves, the first being in the city, and as always was days of constant trekking that really tire you out. My feet were aching so much. Then after four days we moved to a campsite north of the city; stayed in a cabin. It had a pool, a great restaurant and bar, and lots of hot sunshine...as well as lots of Germans and Dutch ladies ;)
I had noticed a lot of hair on my pillow in the mornings whilst at the hotel. So I decided to give my head a good rinse under the shower. When I looked in the mirror it turned out I had a big bald patch on the side of my head. For the next day I wore a cap, then I decided to just pull it all out. After a procedure that lasted a lot longer than I thought, which ended in shaving the areas that were holding on I am now completely bald. Having had the chance to sun my egg head I don't look ill bald but rather bald by choice. This is many due to my eyebrows still being in full swing. I hope I can hang onto them throughout the treatment.
Back into hospital on Monday for a Hickman line immediately followed by 5 days of chemo. Now I know how I feel during and after it I am dreading it. Hopefully I can prepare better for some things though. Anything to alleviate the utter shitness of it all must surely be a good thing.
Saturday, May 06, 2006
on the morrow.
I had my Hickman line out yesterday. It was an odd experience; I had an injection and it all went numb. Then there was lots of pushing a pulling and it tickled a bit. Not bad at all, but I had a paper towel over my head so I couldn't see any of it. I don't like seeing things like that (although I am able to watch injections now, I've had so many). Anyway, I can enjoy the holiday now with no risk of infection. I need it. I'm completely exhausted.
Friday, May 05, 2006
by far the worst thing... (warning, unsavoury talk)
Back in High School I was in the basketbal team. We were called the Royds Hall Chili Peppers, but I had at one point suggested the 'Royds Hall Hemmers' . Little did I know how terrible the often joked about hemmoroid could be. It seems some types of chemotherapy bring them on. ESHAP is one of them. Along with bleeding gums and bloody noses comes the other spot for small veins near the surface of the skin, the anus.
My God, is it painful. I fear the daily toilet trip. It's the worst thing about chemo and I don't remember being told about it in the side effects lecture. It's time to go to the chemist and buy some preparation H. Maybe I can convince them I just got a new tattoo...
My God, is it painful. I fear the daily toilet trip. It's the worst thing about chemo and I don't remember being told about it in the side effects lecture. It's time to go to the chemist and buy some preparation H. Maybe I can convince them I just got a new tattoo...
a new day, a new hope
Right, lets start by saying that this day will be better than yesterday's disaster. After the car had imploded I got a call from Mark, 'the sites down!' says he. On further investigation it turns out we have gone 80gb (80!) over the bandwidth limit. If a video works out at about 30mb on average that means over 2600 viewings in the past month. I didn't think that was possible but Mark seems to think it may have been considering all the coverage it has had with the launch night, news reports etc. Anyway, the host didn't think to tell us we had used that much bandwidth and along with it a huge bill. No, their answer was to just pull the site. No warning. That's great business sense, NOT. It should be back online soon when Mark hands over the keys to his credit card.
Oh yes, after much deliberation I'll be getting my Hickman line taken out today. I figure for the 2 hours work it will mean total peace of mind for my trip away. So there you go. I'll let you know how it goes.
Oh yes, after much deliberation I'll be getting my Hickman line taken out today. I figure for the 2 hours work it will mean total peace of mind for my trip away. So there you go. I'll let you know how it goes.
Thursday, May 04, 2006
the car! I mean, he wrecked it, he totalled it...
I thought, mmm, I'll just pop out to vote and then I'll come back and have lunch. Ten minutes...
Parked outside the school with the poling station, voted, came out. My cars trying to start itself; chugging away. So I ran over to it put my key in the ignition to switch it off, but it is off. Then I notice the black smoke coming out from under the bonnet. What do I do? I ran back to the poling station and said 'my cars on fire, what shall I do?' The unanimous answer was to call the fire brigade, which I did. After a lot of explaing exactly where Yeadon Westfield Junior School was (right around the corner from the fire station), the care taker turns up with an extuingisher and promptly extuinguishes it. Not in time to save the car...all the electrics are burnt out and because it's 10 years old it will be a write off.
Hang around an hour and take all I can from the car. It gets taken away never to be seen again. I was very hungry.
I wonder what we will get. Either way some money will be lost and there's all the hassle of finding a second hand reliable car. It was such a good car, never let us down, and now this.
p.s. anyone recognise the title of this post? Answers on a virtual postcard please.
Parked outside the school with the poling station, voted, came out. My cars trying to start itself; chugging away. So I ran over to it put my key in the ignition to switch it off, but it is off. Then I notice the black smoke coming out from under the bonnet. What do I do? I ran back to the poling station and said 'my cars on fire, what shall I do?' The unanimous answer was to call the fire brigade, which I did. After a lot of explaing exactly where Yeadon Westfield Junior School was (right around the corner from the fire station), the care taker turns up with an extuingisher and promptly extuinguishes it. Not in time to save the car...all the electrics are burnt out and because it's 10 years old it will be a write off.
Hang around an hour and take all I can from the car. It gets taken away never to be seen again. I was very hungry.
I wonder what we will get. Either way some money will be lost and there's all the hassle of finding a second hand reliable car. It was such a good car, never let us down, and now this.
p.s. anyone recognise the title of this post? Answers on a virtual postcard please.
Wednesday, May 03, 2006
COMPLETELY off topic, then completely ON topic.
An apology on beforehand but this is part of my geek status (off the coolest nature I assure you). I got a Mac and it's the greatest computer I ever owned. I just saw the new Apple adverts and you have to see them. They are funny: New Mac Ads
I also dropped a pile of CDs onto my keyboard and the D and G keys snapped off...but thanks to Apple Care that will be costing me a fat zero.
And on topic. I feel great right now. Had a really good bank holiday weekend, tiring, but great. It seems one recovery day for each day of chemo is required. That formula is based on the highly scientific view base of one chemo session, one time. I'll let you know how long it takes next time...
The holiday to Rome looms. Yesterday I had a call from my long lost auntie (long lost in the sense that she rarely speaks to my mother and I haven't spoken to her for a looooong time). Anyway, she has been a nurse for a loooong time and expressed her absolute horror that I was going on holiday whilst in the possession of a Hickman line. She stated that she works in a sterile environment baby intensive care unit where they use them and even there they get infections. A baby died recently due to an infection in the Hick. Because it is straight to a major artery any infection can be extremely dangerous. The immortal words 'You could die' were uttered. Then She pleaded with me not to go on holiday.
I am going on holiday. In the words of the Vandals 'Nothing is going to ruin my holiday'. Although I am slightly perturbed at her utmost verbal attempt to stop me from going. I have sent an email to my oncology nurse expressing my concerns and stating what my auntie said. No reply as yet...
I also dropped a pile of CDs onto my keyboard and the D and G keys snapped off...but thanks to Apple Care that will be costing me a fat zero.
And on topic. I feel great right now. Had a really good bank holiday weekend, tiring, but great. It seems one recovery day for each day of chemo is required. That formula is based on the highly scientific view base of one chemo session, one time. I'll let you know how long it takes next time...
The holiday to Rome looms. Yesterday I had a call from my long lost auntie (long lost in the sense that she rarely speaks to my mother and I haven't spoken to her for a looooong time). Anyway, she has been a nurse for a loooong time and expressed her absolute horror that I was going on holiday whilst in the possession of a Hickman line. She stated that she works in a sterile environment baby intensive care unit where they use them and even there they get infections. A baby died recently due to an infection in the Hick. Because it is straight to a major artery any infection can be extremely dangerous. The immortal words 'You could die' were uttered. Then She pleaded with me not to go on holiday.
I am going on holiday. In the words of the Vandals 'Nothing is going to ruin my holiday'. Although I am slightly perturbed at her utmost verbal attempt to stop me from going. I have sent an email to my oncology nurse expressing my concerns and stating what my auntie said. No reply as yet...
Wednesday, April 26, 2006
call me crazy
...but I just got a file out of my toolbox and got rid of the sharp edges on these Hickman line clamps. HAHA!
Sunday, April 23, 2006
I'm out...for now.
I went in to Jimmy's last Tuesday. I started off in a shared ward but was soon given my own on-suite room. The chemo itself went better than I thought it would. No sickness, or anything nasty to speak of; apart from a bit of acid coming back up making my taste off and making me feel a bit queezy. Nothing I couldn't handle.
I had an infection in my Hickman line and therefore was given copious volumes of anti-biotics straight down the Hick-pipe. I'm not sure if it ws partly this or all the chemo but I now have swollen feet, ankles, head etc. I guess like last time I just have to wait for my body to say 'off with thee' and then spend the next 10 hours rushing to and from the toilet with sore a bumb!
In the mean time I am fat headed.
A big thanks to everyone that came and visited me; most appreciated and made the tme go so much quicker. The lumps in my neck have severely gone down and I look much better. I don't feel that great, it can only be described as a 'fog' all around me. I can't quite concentrate on anything properly for long. Saying that I have got most of my brand spanking new MacBook Pro set up. But that's probably me just being a geek.
Back in on Monday for a blood test and lots of hanging around. If there are any problems then I'm going to get this Hickman line out because despite all the agro of it coming out and then possibly going back in, NOTHING is going to spoil my holiday to Rome which is now only 2 short weeks away. I've been waiting 20 years to go back there and the time has finally come. TTFN.
I had an infection in my Hickman line and therefore was given copious volumes of anti-biotics straight down the Hick-pipe. I'm not sure if it ws partly this or all the chemo but I now have swollen feet, ankles, head etc. I guess like last time I just have to wait for my body to say 'off with thee' and then spend the next 10 hours rushing to and from the toilet with sore a bumb!
In the mean time I am fat headed.
A big thanks to everyone that came and visited me; most appreciated and made the tme go so much quicker. The lumps in my neck have severely gone down and I look much better. I don't feel that great, it can only be described as a 'fog' all around me. I can't quite concentrate on anything properly for long. Saying that I have got most of my brand spanking new MacBook Pro set up. But that's probably me just being a geek.
Back in on Monday for a blood test and lots of hanging around. If there are any problems then I'm going to get this Hickman line out because despite all the agro of it coming out and then possibly going back in, NOTHING is going to spoil my holiday to Rome which is now only 2 short weeks away. I've been waiting 20 years to go back there and the time has finally come. TTFN.
Monday, April 17, 2006
It's looming...
The day is almost upon me. Tomorrow I go in for the ESHAP chemo. It's no secret that I'm not looking forward to it in the slightest but I guess it's something I have to accept. I'm preparing by washing my dressing gown and all my pyjamas, rounding up a few books to read.
My Grandma is coming over for a few days to support me which is very nice of her. Imelda is planning on keeping me stocked up with healthy food since the vegan option on the hospital menu always consists of 'a baked potato - no cheese please'. "Would you like radioactive carrots with that?", "no thanks".
see you when I return...
My Grandma is coming over for a few days to support me which is very nice of her. Imelda is planning on keeping me stocked up with healthy food since the vegan option on the hospital menu always consists of 'a baked potato - no cheese please'. "Would you like radioactive carrots with that?", "no thanks".
see you when I return...
Wednesday, April 12, 2006
Hickman Lines suck
I wrote this on the jimmyteenstv.com message board
"Is it just me or was the hickman line designed by some pharmaceutical hobNOB that was never going to have to endure one of these invasions of privacy?
First of all, why does there need to be about 30cm of pipe hanging out of my chest? Why not have a short bit of maybe aprrox 5cm which has an attchment on the end for attaching the longer bits when it is going to be in use. This way I don't need another uncomfortable plaster stuck to me 24/7.
Secondly, the little clamps that go on the part of the tube marked 'clamp here'. Why oh why oh bloody well why are these so sharp??!!?? Is it so they can just constantly irritate you, like the tube under you skin isn't irritating enough.
Like the majority of things I see it only takes me about 1 second to improve the design. It turns out most designers should not be designers at all. Just because they trained at some polytechnic doesn't make them good."
and there is alittle 'poll' for you to answer, so please do here
"Is it just me or was the hickman line designed by some pharmaceutical hobNOB that was never going to have to endure one of these invasions of privacy?
First of all, why does there need to be about 30cm of pipe hanging out of my chest? Why not have a short bit of maybe aprrox 5cm which has an attchment on the end for attaching the longer bits when it is going to be in use. This way I don't need another uncomfortable plaster stuck to me 24/7.
Secondly, the little clamps that go on the part of the tube marked 'clamp here'. Why oh why oh bloody well why are these so sharp??!!?? Is it so they can just constantly irritate you, like the tube under you skin isn't irritating enough.
Like the majority of things I see it only takes me about 1 second to improve the design. It turns out most designers should not be designers at all. Just because they trained at some polytechnic doesn't make them good."
and there is alittle 'poll' for you to answer, so please do here
Wednesday, April 05, 2006
jimmyteenstv.com, it really is useful.
Even though I made the site I didn't realise the potential of it until yesterday when I decided to watch Sarah Ramsden - Part 2. It's about her time in hospital having Stem Cell Replacement Therapy. It doesn't look all that therapeutic to me, in fact it looks downright horrible. I'm not looking forward to it in the slightest. Have you seen the size of those pills she takes? A necessary evil I guess, or maybe not, time will tell.
Monday, April 03, 2006
little update
I have been biding my time before the barage of bodily assaults begin. I was meant to be having my Hickman line in today but after quite a bit 'moaning' it has been delayed until next Monday. That gives me exactly one week of extra swimming to get my lymph flowing. Apparently it is rather congested. I also got out, of my 'indoor' shed, my lymphosizer; which is one of those little trampolines. My aim is to bounce as much as I can. I run over to my iPod, put on a Cat Stevens song, and bounce. It's fun whilst the lymph juice dances around my body.
The only good thing to come out of this dis-ease so far, apart from me taking control of my own life, is that I was in the market for a brand spanking new iMac (you know, the computers that are so much better than Windows and their generic box counterparts could ever hope to be). Well, now I'm in the market for a MacBook Pro. This is so that whilst I am being drugged I can play, and maybe even do some work on the 1-inch thin most desirable laptop ever created. The only problem is that I will be on the adult ward at St. James' and while the children's ward gets internet, plasma TV, DVDs, every games console ever dreamed of, a pool table, table football, a sitting area, exciting books, coffee morning, pizza evening (great for the lymph NOT), etc. The adult ward gets, erm let me think, a second hand book box filled with Mills and Boone novels and possibly one of those horrible old TVs with 4 push buttons. Then there's Patientline. Don't get me started on the insult to humanity that is Patientline, I think it should be renamed 'Patient and Family Bankrupter'.
Oh, I just saw that this turned into a bit of a rant.
P.S. I'm not entirely sure what facilities the adult ward has but I'm not getting my hopes up.
The only good thing to come out of this dis-ease so far, apart from me taking control of my own life, is that I was in the market for a brand spanking new iMac (you know, the computers that are so much better than Windows and their generic box counterparts could ever hope to be). Well, now I'm in the market for a MacBook Pro. This is so that whilst I am being drugged I can play, and maybe even do some work on the 1-inch thin most desirable laptop ever created. The only problem is that I will be on the adult ward at St. James' and while the children's ward gets internet, plasma TV, DVDs, every games console ever dreamed of, a pool table, table football, a sitting area, exciting books, coffee morning, pizza evening (great for the lymph NOT), etc. The adult ward gets, erm let me think, a second hand book box filled with Mills and Boone novels and possibly one of those horrible old TVs with 4 push buttons. Then there's Patientline. Don't get me started on the insult to humanity that is Patientline, I think it should be renamed 'Patient and Family Bankrupter'.
Oh, I just saw that this turned into a bit of a rant.
P.S. I'm not entirely sure what facilities the adult ward has but I'm not getting my hopes up.
Monday, March 27, 2006
Support Groups
Every two weeks I attend a cancer support group based in Harrogate. Last Saturday it was the half day, but they do full days too. On the full day it offers a full meal at lunchtime (half day just soup), as well as support in the form of counselling, Reiki, healing, aromatherapy, reflexology, indian head massage and various others. There is also lots of books and literature as well as the ability to chat to others who are going through a similar experience.
I always find it immensly rewarding to go. The treatments relax you and it's nice to speak to people from all walks of life united by a common dis-ease. In particular it offers all this for the carer who I often feel are a little overlooked. Arguably they are going through a more difficult time than the sufferer since they often feel so helpless in the situation.
When first diagnosed I felt very much that I could deal with this on my own and didn't think a support group would do me any good but I can honestly say that it has been, and is, a very rewarding experience. I recommend it to all.
They have a website, but I can't find it at the moment. I will post it here once I do.
I always find it immensly rewarding to go. The treatments relax you and it's nice to speak to people from all walks of life united by a common dis-ease. In particular it offers all this for the carer who I often feel are a little overlooked. Arguably they are going through a more difficult time than the sufferer since they often feel so helpless in the situation.
When first diagnosed I felt very much that I could deal with this on my own and didn't think a support group would do me any good but I can honestly say that it has been, and is, a very rewarding experience. I recommend it to all.
They have a website, but I can't find it at the moment. I will post it here once I do.
Friday, March 24, 2006
Last Nights Doo.
Last night was the launch of the DVD and website. I was up in the 'technical' box pushing the buttons along with the resident media guy Allen. As always with any event something has to go wrong. In this case the sound cable that had been plugged into the camera, providing us with video content, was a mono lead - in a stereo output. This meant that only one sound channel was being broadcast which lead to the very high music and the very low speech. An apology to David Hood, Aidan Wray, and Laura Middleton who had less than perfect sound quality. Once the full extent of this was realised the interval was hosted early whilst the media man jumped into action and corrected it. From then on it went swimmingly.
It was great to see people collecting their awards and how well they looked compared to how they were on their video. It really goes to show that when you have chemotherapy it's not just your hair that falls out, you also look completely drained of energy and colour.
There were also people there that are still having their treatment (myself included) and I wish them all the best of luck. It was inspiring to see people who have made it through their treatment and come out at the other side looking so well. It gives you hope.
It was great to see people collecting their awards and how well they looked compared to how they were on their video. It really goes to show that when you have chemotherapy it's not just your hair that falls out, you also look completely drained of energy and colour.
There were also people there that are still having their treatment (myself included) and I wish them all the best of luck. It was inspiring to see people who have made it through their treatment and come out at the other side looking so well. It gives you hope.
It's in the paper innit...
The Yorkshire Post has an article about the DVD and the website, and includes me mentioned by name. My favourite part is Mark quoted as saying ''Any newly diagnosed teenager at Jimmy's will get a copy of this hour-long DVD which will be a great help to them, I think."
I think ;)
I think ;)
Tuesday, March 21, 2006
the Journey
I could have started the chemo yesterday but decided to wait until the 17th of April. This gives me a bit of time to get my head around it all. It also, potentially, gives the dis-ease time to spread. But, in this time I'm going to do my best to let go of the issues that keep making me ill. I was completely clear just a few months ago, chemo continued to 'zap' anything that may be left. Then here it is, just a few months later, back again.
To me this is trying to tell me something. My body is trying to tell me something. I need to let go of negative past experiences that I am holding on to. How do I do this? It's no secret that I am into homeopathic medicine and spirituality. No, that doesn't mean religion; I don't particularly subscribe to any kind of organised religion, but that doesn't mean to say you can't be spiritual. I believe there is a way to let go of this dis-ease without the use of any pharmaceutical drugs. I have used them in the past and I don't regret it, but then why is this cancer returning? This cancer isn't something with a direct causation like smoking or asbestos poisoning; at least I don't think so. I lead a healthy active life. So I don't believe that shocking my body with incredibly toxic drugs will 'save me'. I do believe they can buy you more time, and also the experience of cancer itself can make you look at life in a different way and therefore allow you to heal, but it hasn't happened with me yet. Over the course of the next month I am going to try and experience my thoughts and emotions at their deepest level and find out what direction my life needs to take. Others have done, so why can't I? I created this cancer, so I can destroy it. If there's a way in, there's a way out.
There's a video by Brandon Bays on monday9am.tv (click 'Film of the Week', then 'Play' - it's only on there this week though). She did it, and she has developed a program to help yourself called 'The Journey'. There's a book and more. I have booked myself on a Journey weekend in London on the 7th and 8th of April. Again, this isn't a guaranteed success as I will have to do the work, and I am going to get myself mentally ready and begin the process before this.
To me this is trying to tell me something. My body is trying to tell me something. I need to let go of negative past experiences that I am holding on to. How do I do this? It's no secret that I am into homeopathic medicine and spirituality. No, that doesn't mean religion; I don't particularly subscribe to any kind of organised religion, but that doesn't mean to say you can't be spiritual. I believe there is a way to let go of this dis-ease without the use of any pharmaceutical drugs. I have used them in the past and I don't regret it, but then why is this cancer returning? This cancer isn't something with a direct causation like smoking or asbestos poisoning; at least I don't think so. I lead a healthy active life. So I don't believe that shocking my body with incredibly toxic drugs will 'save me'. I do believe they can buy you more time, and also the experience of cancer itself can make you look at life in a different way and therefore allow you to heal, but it hasn't happened with me yet. Over the course of the next month I am going to try and experience my thoughts and emotions at their deepest level and find out what direction my life needs to take. Others have done, so why can't I? I created this cancer, so I can destroy it. If there's a way in, there's a way out.
There's a video by Brandon Bays on monday9am.tv (click 'Film of the Week', then 'Play' - it's only on there this week though). She did it, and she has developed a program to help yourself called 'The Journey'. There's a book and more. I have booked myself on a Journey weekend in London on the 7th and 8th of April. Again, this isn't a guaranteed success as I will have to do the work, and I am going to get myself mentally ready and begin the process before this.
Sunday, March 19, 2006
tell the masses, check.
I had to tell my mum yesterday as she rang up to ask how the CT scan went. I couldn't lie so I told her. I could tell she was shocked. I also told Imelda's parents, our friends Ali and Gareth, my Grandma...it will soon spread to all of Imelda's extended family like the wildfire any bit of news about anything always does. At least I got that out of the way now. I'm feeling strong and am ready to face this head on...
Friday, March 17, 2006
a bit of a shock?
Yesterday I went for a CT scan to double check that this cancer had gone from my body. For the past 6 months I have been receiving ABVD chemotherapy as an outpatient at Cookridge Hospital in Leeds. Last November I had a CT scan and I was told that the cancer was already gone, that we would just finish the course of chemo to make sure it was. Yesterday's CT scan was going to be a marker to show my healthy body, with some scar tissue.
At the meeting with the doctor it turns out there is some swelling in my chest and some activity in my hip area. Not huge, but enough to suggest that it hasn't completely gone. It is now proposed I have ESHAP chemo and stem cell transplant.
Imelda, my girlfriend of seven years, was there with me and we were both shocked by the news. We really weren't expecting this. Everything was going so well. In the past year I have got my web design business up and running, we have almost completed on buying our flat, Imelda just got a promotion. Things were going great, and now this.
Actually, I felt very calm about it all. Really, nothing has changed. Although it's a new type of chemo, a little more intense, we have over the past year got very used to this uncertain lifestyle. If I look at it this way then I'm sure I can make it through. I don't feel upset for myself but I do get upset when I think of telling others. How will they react to this? My family and friends were overjoyed 4 months ago when I told them it was gone.
I am going to my grandma's today to tell her the news. I told my dad but he is in Columbus, Ohio, at the moment on a business trip and won't be back until Monday evening, which is why I will wait to tell my mum as she is alone in France.
One thing is for sure, I am going to take control of this situation now. In the past, although I pretended to be in control, I have been very much a 'patient'. Not of the hospital, but of my mother's and the people around me. Always trying to satisfy their desires when it comes to treatment and lifestyle choices. As I wrote in my diary last night, I am not scared, I am not angry, I am pissed off.
At the meeting with the doctor it turns out there is some swelling in my chest and some activity in my hip area. Not huge, but enough to suggest that it hasn't completely gone. It is now proposed I have ESHAP chemo and stem cell transplant.
Imelda, my girlfriend of seven years, was there with me and we were both shocked by the news. We really weren't expecting this. Everything was going so well. In the past year I have got my web design business up and running, we have almost completed on buying our flat, Imelda just got a promotion. Things were going great, and now this.
Actually, I felt very calm about it all. Really, nothing has changed. Although it's a new type of chemo, a little more intense, we have over the past year got very used to this uncertain lifestyle. If I look at it this way then I'm sure I can make it through. I don't feel upset for myself but I do get upset when I think of telling others. How will they react to this? My family and friends were overjoyed 4 months ago when I told them it was gone.
I am going to my grandma's today to tell her the news. I told my dad but he is in Columbus, Ohio, at the moment on a business trip and won't be back until Monday evening, which is why I will wait to tell my mum as she is alone in France.
One thing is for sure, I am going to take control of this situation now. In the past, although I pretended to be in control, I have been very much a 'patient'. Not of the hospital, but of my mother's and the people around me. Always trying to satisfy their desires when it comes to treatment and lifestyle choices. As I wrote in my diary last night, I am not scared, I am not angry, I am pissed off.
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