Cristiano66
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I am regular visitor at other forums and I read a lot. I visit this forum called Conspiracy Cafe and I saw this story from real person which can learn you a lot of things how to be positive and many more.
The link to it is http://www.conspiracycafe.net/forum/ind ... opic=16658
This Forum area you have now entered is somewhat like the Twilight Zone. It's another dimension (hopefully) for most of you, a dimension beyond site and sound where normal humans do not tread. It's my little slice of the Cafe, granted its right to existence by the Staff here and hopefully in time supported by the Members. I have this place because I am the Dead Man in the title, a cancer sufferer for 13 years who just refuses to give up, lie down and play dead. Statistically I am an anomoly, the Neo of cancer programmes everywhere as I should be dead, 3 times over in fact. I am not and I don't intend to be. I intend to be the inherent aberration in an otherwise perfect program of life and death.
So, I intend to explore my illness in its past and present tense and you can contribute, or simply skip over this Forum. That's fine with me as I just need to get some shit off my chest and I shall be doing it here and here too.
This is where I start. I have taken this from my new Blog, to run in sequence with what I post here.
An overview of life as a dead man.
My name is Iain and I am now on my fourth episode of teratoma.
It began on December 8th 1995 when I was diagnosed with teratoma with a high AFP of 5,456. Through the mind shredding internal wails of terror I managed to hear that teratoma was eminently treatable and that age was on my side.
I was 29 at the time. I was advised to subscribe to an inguinal orchiectomy, BEP chemo over 6 cycles and as a dessert I should try the RPLND as it came highly recommended. Who was I to argue as my mind was too disabled to even form an intelligent question in the aftermath of this news?
I have to say that the orchiectomy wasn't as bad as I expected it to be, being hospitalised for a mere 48 hours and only suffering light discomfort form the tugging stitches for about 5 days before they were removed. But, I knew more was to come and I really was in two minds about proceeding any further. All I knew about chemotherapy was that you vomited a lot, went bald and ended up looking like a survivor from Belsen. I really wasn't keen on putting myself through that, life saving treatment or not. My wife, pillar of strength that she is, arranged for me to talk to a specialist nurse about the effects of chemo. Which I have to say, certainly got my mind around the cost to benefits of the whole thing.
My chemo regime began with days 1 to 5 in hospital receiving 24 hour IV chemo, then home to return on days 8 and 15 of a 21 day cycle for additional day patient treatments. Cycle one wasn't so bad and I thought it was all going to be plain sailing. Cycle two left me feeling a bit tired and looking wan. Cycle three left me with an uphill battle to get my bounce back and this was when my hair fell out. So, I entered cycle four looking like Dr Evil.
I have to be honest and say that cycle four was a real uphill battle and this was when the really persistent vomiting started. By cycle 5 I was losing weight measured in pounds a day almost and this cycle well and truly floored me. I was so bad I almost begged for cycle 6 to be cancelled. But, my wife wouldn't let me. So, I persevered through cycle 6 and felt as bad as was humanly possible when it was completed. At this point I was completely hairless, vomiting with alarming regularity despite the drugs to prevent this. I had peripheral neuropathy developing, aching bones, a suppressed immune system and had lost about 3 stone in weight. So, after a brief pit stop to marshal my strength, I was made ready for the planned RPLND.
I have to say that surgery has always held untold terror for me as it is the ultimate in control surrender. I don't like to be not in control of my life. I am not a control freak, but I do like to be master of my own destiny and I was about to surrender that for a second time in a few short months. CT scans showed residual masses in my abdomen, about 6 if I remember correctly, so I really had no choice about proceeding with this planned surgery. So, much as it rankled with me, I signed and prepared for zero hour.
I remember waking up in the ward covered in a large foil blanket with my wife and consultant surgeon leaning over me and I remember it was dark outside. That is what struck me as really strange, as when I went down for the surgery the sun was just rising over the rooftops across from the hospital. Had I been in surgery so long?Recovering from the RPLND was not an easy process and the surgery is quite radical and extremely invasive. So, patience, conversation and a good stack of reading material is required. The surgery had proven successful though. All the residual masses had been removed and analysis showed them to all be dead. So, no tumours and my AFP had officially fallen to 3.
I went back to work some months later an assiduously attended all of my follow up appointments. Good job too as in January 2000, the hospital found my teratoma had returned. So, the menu of cytotoxins was wheeled out before me and I was advised to have VIP chemo this time, preceded by another RPLND and followed by high-dose chemo and a bone marrow transplant. Surgery went as planned, though I hated to have to surrender myself to the knife one more time.
BEP chemo was grim, but VIP chemo was downright evil and I shed weight, lost what little hair I had and vomited a lot, again. But, something was doing the trick as my AFP was again down to 3 after 4 cycles of VIP.
I thought I was in the clear, but my consultant had other plans. He still felt the high-dose chemo was required along with the bone marrow transplant. I had questions this time, lots of questions and I had plagued my consultant with them since January. I didn't want any more treatment and I argued endlessly with him. But, his argument for this treatment won out and I agreed to it.
My bone marrow transplant was to be an autologous one, meaning we drew off and re-used my own marrow and stem cells. This is done via and arm to arm loop and wasn't as bad as I feared. Then, to prepare me for the high-dose chemo I was fitted with a Hickman line. All tolerable so far. Then I was admitted for the chemo which was delivered in extremely high doses over a 48 hour period. It was truly and terribly awful from about 24 hours after the treatment was completed. I was in that much pain I don't remember the infusion of my own marrow as I was sky-high on morphine.
It took me about 16 days to engraft and recover enough to be released from the specialist bone marrow unit and much of it I have no memory of as I spent almost all that time high on morphine. I remember brief moments of tortured pain, inane and insane ramblings. I have glimpses of visitors and a lasting impression of my wife's almost permanent attendance at my bedside and little else. When I left the unit I was 4 stone lighter than when I went in and looked grim. But, I know look back on this time with dark humour and laugh loud and long at the tales my visitors tell me from this period. I did and said some really insane stuff whilst on morphine.
It actually didn't take me that long to recover from this last treatment and within three weeks of my discharge the Hickman line was withdrawn. I quickly felt better and started eating full meals within a few short weeks. My AFP was still three and I was in remission again, so I call it a fair but tough trade.
I managed to get as far as 2004 before being diagnosed with a further relapse. A slowly climbing AFP took almost two years to rise above 100 and so it was that in 2006 I was required to once again undergo combination surgery and chemotherapy. This damned teratoma has seen fit to invade my liver this time, but fortunately it had entrenched itself in segment five. This was fortuitous, or so I was informed, as segment 5 was easily resectable. I wasn't convinced that easy was the right word as the surgery involved 3 large incisions from just below my sternum to leave me with a Mercedes Benz logo in scar tissue. So, I signed and submitted myself to some more big surgery.
You know, surgery is tough, always has been for me and I won't lie about this latest adventure. It was as hard as any surgery I had undergone to date, but I am now of the mindset that I can see the 'why' of subjecting myself to it. You go in, they cut you open, take out the nasty bits, stitch you up, you recuperate and leave the hospital.
Have I gotten so blasé about it all now?
Chemo was 4 cycles of TVP chemo over 21 days. It is strange, but I think the cytotoxins are better these days, either that or the anti-sickness drugs are. Chemo wasn't so bad and on cycle 3 I was in AFP remission. Cycle 4 was just to polish it off.
I would love to say that was the end of the tale, but it isn't. I have just been diagnosed with another relapse of my teratoma and was glad to hear the words, 'we can treat you'. I have no visible masses showing, but do have an AFP of 170. They are using two new drugs this time, or new in this role. Gemcitibane and Oxaliplatin are the latest weapons in this conflict. These are given over 21 days at day 1 and day 8 as an outpatient. My consultant is optimistic that they will buy me another period of remission.
I don't mind not having been cured of my teratoma. Every relapse has been met with a new treatment and I have always managed to stay one step ahead of it. That is something I can and will live with. There are always treatments coming along, new drugs, new combinations and no matter how grim the long term outlook may seem to the bystander, for me it always been about having one more day to love and live. I am now 42 and have had a chance to watch my kids grow up and share a few laughs with them and my life along the way.
Life is good. My teratoma has always been the immature and yolk sac type upon analysis which I am told isn't the easiest to cure. That doesn't mean it is incurable, I just haven't stumbled upon the right combination of drugs yet. It is my intention to survive my disease and go back through this overview and provide a bit more detail of events as they transpired. It is also my intent to use this blog as a vehicle to record my latest relapse and set some goals for myself to aid me in surviving my cancer yet again. Goals are for the future, a future I will enjoy.
The link to it is http://www.conspiracycafe.net/forum/ind ... opic=16658
This Forum area you have now entered is somewhat like the Twilight Zone. It's another dimension (hopefully) for most of you, a dimension beyond site and sound where normal humans do not tread. It's my little slice of the Cafe, granted its right to existence by the Staff here and hopefully in time supported by the Members. I have this place because I am the Dead Man in the title, a cancer sufferer for 13 years who just refuses to give up, lie down and play dead. Statistically I am an anomoly, the Neo of cancer programmes everywhere as I should be dead, 3 times over in fact. I am not and I don't intend to be. I intend to be the inherent aberration in an otherwise perfect program of life and death.
So, I intend to explore my illness in its past and present tense and you can contribute, or simply skip over this Forum. That's fine with me as I just need to get some shit off my chest and I shall be doing it here and here too.
This is where I start. I have taken this from my new Blog, to run in sequence with what I post here.
An overview of life as a dead man.
My name is Iain and I am now on my fourth episode of teratoma.
It began on December 8th 1995 when I was diagnosed with teratoma with a high AFP of 5,456. Through the mind shredding internal wails of terror I managed to hear that teratoma was eminently treatable and that age was on my side.
I was 29 at the time. I was advised to subscribe to an inguinal orchiectomy, BEP chemo over 6 cycles and as a dessert I should try the RPLND as it came highly recommended. Who was I to argue as my mind was too disabled to even form an intelligent question in the aftermath of this news?
I have to say that the orchiectomy wasn't as bad as I expected it to be, being hospitalised for a mere 48 hours and only suffering light discomfort form the tugging stitches for about 5 days before they were removed. But, I knew more was to come and I really was in two minds about proceeding any further. All I knew about chemotherapy was that you vomited a lot, went bald and ended up looking like a survivor from Belsen. I really wasn't keen on putting myself through that, life saving treatment or not. My wife, pillar of strength that she is, arranged for me to talk to a specialist nurse about the effects of chemo. Which I have to say, certainly got my mind around the cost to benefits of the whole thing.
My chemo regime began with days 1 to 5 in hospital receiving 24 hour IV chemo, then home to return on days 8 and 15 of a 21 day cycle for additional day patient treatments. Cycle one wasn't so bad and I thought it was all going to be plain sailing. Cycle two left me feeling a bit tired and looking wan. Cycle three left me with an uphill battle to get my bounce back and this was when my hair fell out. So, I entered cycle four looking like Dr Evil.
I have to be honest and say that cycle four was a real uphill battle and this was when the really persistent vomiting started. By cycle 5 I was losing weight measured in pounds a day almost and this cycle well and truly floored me. I was so bad I almost begged for cycle 6 to be cancelled. But, my wife wouldn't let me. So, I persevered through cycle 6 and felt as bad as was humanly possible when it was completed. At this point I was completely hairless, vomiting with alarming regularity despite the drugs to prevent this. I had peripheral neuropathy developing, aching bones, a suppressed immune system and had lost about 3 stone in weight. So, after a brief pit stop to marshal my strength, I was made ready for the planned RPLND.
I have to say that surgery has always held untold terror for me as it is the ultimate in control surrender. I don't like to be not in control of my life. I am not a control freak, but I do like to be master of my own destiny and I was about to surrender that for a second time in a few short months. CT scans showed residual masses in my abdomen, about 6 if I remember correctly, so I really had no choice about proceeding with this planned surgery. So, much as it rankled with me, I signed and prepared for zero hour.
I remember waking up in the ward covered in a large foil blanket with my wife and consultant surgeon leaning over me and I remember it was dark outside. That is what struck me as really strange, as when I went down for the surgery the sun was just rising over the rooftops across from the hospital. Had I been in surgery so long?Recovering from the RPLND was not an easy process and the surgery is quite radical and extremely invasive. So, patience, conversation and a good stack of reading material is required. The surgery had proven successful though. All the residual masses had been removed and analysis showed them to all be dead. So, no tumours and my AFP had officially fallen to 3.
I went back to work some months later an assiduously attended all of my follow up appointments. Good job too as in January 2000, the hospital found my teratoma had returned. So, the menu of cytotoxins was wheeled out before me and I was advised to have VIP chemo this time, preceded by another RPLND and followed by high-dose chemo and a bone marrow transplant. Surgery went as planned, though I hated to have to surrender myself to the knife one more time.
BEP chemo was grim, but VIP chemo was downright evil and I shed weight, lost what little hair I had and vomited a lot, again. But, something was doing the trick as my AFP was again down to 3 after 4 cycles of VIP.
I thought I was in the clear, but my consultant had other plans. He still felt the high-dose chemo was required along with the bone marrow transplant. I had questions this time, lots of questions and I had plagued my consultant with them since January. I didn't want any more treatment and I argued endlessly with him. But, his argument for this treatment won out and I agreed to it.
My bone marrow transplant was to be an autologous one, meaning we drew off and re-used my own marrow and stem cells. This is done via and arm to arm loop and wasn't as bad as I feared. Then, to prepare me for the high-dose chemo I was fitted with a Hickman line. All tolerable so far. Then I was admitted for the chemo which was delivered in extremely high doses over a 48 hour period. It was truly and terribly awful from about 24 hours after the treatment was completed. I was in that much pain I don't remember the infusion of my own marrow as I was sky-high on morphine.
It took me about 16 days to engraft and recover enough to be released from the specialist bone marrow unit and much of it I have no memory of as I spent almost all that time high on morphine. I remember brief moments of tortured pain, inane and insane ramblings. I have glimpses of visitors and a lasting impression of my wife's almost permanent attendance at my bedside and little else. When I left the unit I was 4 stone lighter than when I went in and looked grim. But, I know look back on this time with dark humour and laugh loud and long at the tales my visitors tell me from this period. I did and said some really insane stuff whilst on morphine.
It actually didn't take me that long to recover from this last treatment and within three weeks of my discharge the Hickman line was withdrawn. I quickly felt better and started eating full meals within a few short weeks. My AFP was still three and I was in remission again, so I call it a fair but tough trade.
I managed to get as far as 2004 before being diagnosed with a further relapse. A slowly climbing AFP took almost two years to rise above 100 and so it was that in 2006 I was required to once again undergo combination surgery and chemotherapy. This damned teratoma has seen fit to invade my liver this time, but fortunately it had entrenched itself in segment five. This was fortuitous, or so I was informed, as segment 5 was easily resectable. I wasn't convinced that easy was the right word as the surgery involved 3 large incisions from just below my sternum to leave me with a Mercedes Benz logo in scar tissue. So, I signed and submitted myself to some more big surgery.
You know, surgery is tough, always has been for me and I won't lie about this latest adventure. It was as hard as any surgery I had undergone to date, but I am now of the mindset that I can see the 'why' of subjecting myself to it. You go in, they cut you open, take out the nasty bits, stitch you up, you recuperate and leave the hospital.
Have I gotten so blasé about it all now?
Chemo was 4 cycles of TVP chemo over 21 days. It is strange, but I think the cytotoxins are better these days, either that or the anti-sickness drugs are. Chemo wasn't so bad and on cycle 3 I was in AFP remission. Cycle 4 was just to polish it off.
I would love to say that was the end of the tale, but it isn't. I have just been diagnosed with another relapse of my teratoma and was glad to hear the words, 'we can treat you'. I have no visible masses showing, but do have an AFP of 170. They are using two new drugs this time, or new in this role. Gemcitibane and Oxaliplatin are the latest weapons in this conflict. These are given over 21 days at day 1 and day 8 as an outpatient. My consultant is optimistic that they will buy me another period of remission.
I don't mind not having been cured of my teratoma. Every relapse has been met with a new treatment and I have always managed to stay one step ahead of it. That is something I can and will live with. There are always treatments coming along, new drugs, new combinations and no matter how grim the long term outlook may seem to the bystander, for me it always been about having one more day to love and live. I am now 42 and have had a chance to watch my kids grow up and share a few laughs with them and my life along the way.
Life is good. My teratoma has always been the immature and yolk sac type upon analysis which I am told isn't the easiest to cure. That doesn't mean it is incurable, I just haven't stumbled upon the right combination of drugs yet. It is my intention to survive my disease and go back through this overview and provide a bit more detail of events as they transpired. It is also my intent to use this blog as a vehicle to record my latest relapse and set some goals for myself to aid me in surviving my cancer yet again. Goals are for the future, a future I will enjoy.
