So, here I sit on the edge of a new era, staring (as all of us do) into an unknown future full of the same fears (and some new ones for god measure) and wonder that we all do as I imagine my future. To be honest, the future brings mostly sadness and a reluctance to plan so for the majority of the time I keep my focus firmly on the now as that is essentially how we all experience the world and experiencing the world this way, I am mostly happy. It is still an almost daily occurrence that I allow the sadness, fear and helplessness in and allow it to take hold of me for a short time, acknowledge my worst fears, deal with them with whatever emotion deems necessary at the time, close the jar, place it back on the shelf and then continue on with life. I am still happy most of the time, as most of the time I remain present and a currently, on the whole, in a very happy place with a loving, supportive immediate and wider family, group of friends both locally and further afield and on an almost daily basis I am bowled over by the majority, kindness and thoughtfulness of others whom I know well or barely know.
No longer having to work, I have turned my focus on to creating and capturing memories with my family, writing letters and notes to my son and wife, recording myself reading novels to my son that I may not be around to share with him when he is ready, trying desperately to compose music that helps me document how I am feeling for myself and others. Music has always been a huge part of and love in my life. I have always adored listening to and appreciating it in its many forms - often surprising myself how I can change my mind about a certain piece, song, band or genre due to the slowly growing love for it - I have always enjoyed playing it, and most of all performing it. I do not necessarily enjoy the narcisistic element of enjoying people cheering for my music, I just perform very differently under the pressure and gaze of an audience that gives me serious rush and pushes me into places and forces me to forgive myself (for I am ever the perfectionist) for mistakes which tend to enhance rather than detract from the performance and resulting musical experience for the audience.
Having explained recently my difficulty with composition - something I have always battled with - to a new friend, she has given me the loan of her compact travelling guitar to allow me to play, compose and perform while on a long holiday away from my instruments and comfort zone. She also purchased me a journal for the purposes of aiding me with composition and lyric writing. It is this generosity that overwhelms me at times. I hope I have been as generous throughout my life and have brought similar joy to others whether I knew it or not.
Back to the precipice / sea shore / mountain vista on which I now stand. I am about to receive my final dose of chemotherapy for this first course. It is the hope that I will now enjoy a chemotherapy holiday of at least four months if I am very lucky. It will need to be at least three months as I will be away on the holiday of a lifetime they suggested I take at this juncture. I am both elated and nervous. No longer having to deal directly with chemotherapy and its symptoms, I now have to deal with the harsh reality of having untreated cancer and the unknown of how this will affect me and how my body will handle it.
To date, besides my initial illness, which led to eventual diagnosis, I have had no symptoms bar the chronic flatulence that I can attribute directly to cancer rather than chemotherapy. This has lulled me into a false sense of security somewhat. I am nervous that once I step away from treatment that I will now begin to feel the effects of the disease which started this off. I will need to wait and see.
For now, I hope, that after the next few days I can slowly look forward to a temporary end to the constant, clawing nausea, cold neuropathy and allow my body to slowly recover its platelets via my recovering bone marrow.
This will likely be my last update prior to beginning my next course of treatment as this is the focus of this blog. I am due a final scan to monitor my tumor next week, I may check back in with those results. Otherwise, time to draw an end under 2015 and look forward to 2016 and what it may bring.
Showing posts with label chemotherapy side effects.. Show all posts
Showing posts with label chemotherapy side effects.. Show all posts
Sunday, November 1, 2015
Thursday, October 15, 2015
The Words of Others on the Subject Cancer, Death, Love and Family
A friend put me on to the following article about the letters left by a dying father to his son:
When I'm Gone - Life Tips
When I'm Gone - Life Tips
It's Been a While
So, I am now mere days from my second-to-last cycle of my first (of a potential three) courses of chemotherapy. It has been an interesting last four months to say the least. The focus for the most part has been on coming to terms with what is happening, likely to happen and dealing with the ups, downs and side effects of chemotherapy while enjoying as much time as possible with my family and friends. The news that my scan showed no signs of secondaries on my lungs or liver (they are there, apparently, without question, but are not large enough to be detected by CT scan), which seemed a pleasant shock to my oncologist and that against all odds, my tumor (originally scanned at a mere 18mm) has reduced to a diameter of 16mm. This bodes well for a long break from chemotherapy - hopefully the full four months - before beginning a new regime on a new course of drugs, no doubt with new and familiar side effects to encounter.
The end of this first course has brought home the truth of my impending demise and albeit hopefully a couple of years away, it still seems far too close for comfort. I have found this time very emotional indeed. Not an occasional tear in the evening emotional but tears streaming uncontrollably down my face while driving the car or shopping at the supermarket emotional. I did wonder if depression was setting in, though thankfully it did pass after a couple of days but nonetheless, my initial diagnosis and thoughts of my actual dying (once again more from the point of view of its impact on my family) come to mind often.
Death is a surreal concept for anyone to grasp. At one time or another we have all pondered it. I am probably pondering it a lot more than most people without a serious illness or morbid disposition. I am not religious. I was born a Catholic but am now an atheist. I am not an avid atheist such as Richard Dawkins (though I have enjoyed some of his books very much), though I have come to the decision (and decision it is) - not lightly, mind you - that I believe there is no god, nor no afterlife. I do wonder that my diagnosis did not bring my (always) latent Catholic upbringing back to the fore. It still surprises me somewhat that it did not. My believe (as that is all we can ever have in such things) is still firm. Why am I discussing my religious belief? Well, because death and belief are somewhat intertwined. What do I believe happens after death? Well, I just don't know, obviously. No one does. Some small part of me hopes my firm belief is wrong and that somehow I will get to observe my family as they continue to grow, though deep down I think I have a stronger belief that nothing of me will remain apart from people's memories of me and what music and words I have recorded over the years.
Thankfully, besides all this, I am still in pretty good form. My family is as happy and close as ever and I am still very much aware of how lucky I am that I have a supportive and loving family and a wife in whom I can confide and with whom we can both discuss our doubts, fears, hopes and dreams. I am lucky that I have a supportive employer who understands and is concerned about my situation. I am lucky to have so many astounding friends both geographically near and far who are continuously showing their love and support.
Onwards and upwards. Tomorrow is another day.
The end of this first course has brought home the truth of my impending demise and albeit hopefully a couple of years away, it still seems far too close for comfort. I have found this time very emotional indeed. Not an occasional tear in the evening emotional but tears streaming uncontrollably down my face while driving the car or shopping at the supermarket emotional. I did wonder if depression was setting in, though thankfully it did pass after a couple of days but nonetheless, my initial diagnosis and thoughts of my actual dying (once again more from the point of view of its impact on my family) come to mind often.
Death is a surreal concept for anyone to grasp. At one time or another we have all pondered it. I am probably pondering it a lot more than most people without a serious illness or morbid disposition. I am not religious. I was born a Catholic but am now an atheist. I am not an avid atheist such as Richard Dawkins (though I have enjoyed some of his books very much), though I have come to the decision (and decision it is) - not lightly, mind you - that I believe there is no god, nor no afterlife. I do wonder that my diagnosis did not bring my (always) latent Catholic upbringing back to the fore. It still surprises me somewhat that it did not. My believe (as that is all we can ever have in such things) is still firm. Why am I discussing my religious belief? Well, because death and belief are somewhat intertwined. What do I believe happens after death? Well, I just don't know, obviously. No one does. Some small part of me hopes my firm belief is wrong and that somehow I will get to observe my family as they continue to grow, though deep down I think I have a stronger belief that nothing of me will remain apart from people's memories of me and what music and words I have recorded over the years.
Thankfully, besides all this, I am still in pretty good form. My family is as happy and close as ever and I am still very much aware of how lucky I am that I have a supportive and loving family and a wife in whom I can confide and with whom we can both discuss our doubts, fears, hopes and dreams. I am lucky that I have a supportive employer who understands and is concerned about my situation. I am lucky to have so many astounding friends both geographically near and far who are continuously showing their love and support.
Onwards and upwards. Tomorrow is another day.
Tuesday, September 29, 2015
Spring is in the Air
The days here are getting warmer and with it comes good news. The last cycle has been so good that it proves that chemotherapy (for now, at least) is not such a slippery slope. I have had an incredibly pleasant last cycle, where I mostly felt normal, with occasional vomiting of course, though this has just become expected background noise at this stage. I had my first CT scan since my initial diagnosis the day after my last chemotherapy session and heard back within hours from my oncologist that the news was good. This was something that absolutely no one - including, considering her reaction, my oncologist - expected. When we met she said she braced herself before reviewing the results and saw no indication of any secondary tumours in the lungs or liver and my primary tumour, which was initially measured at 18mm in diameter, had reduced to 16mm. No one, least of all us, had expected this. I had been so resigned to the news being bad that I had not even given the results a second thought. This means little except that the cancer had so far reacted very well to treatment and that we can cease the current chemotherapy course at the start of November and I will hopefully, depending on how the tumour progresses or spreads during the chemotherapy holiday, have a four month holiday from the hideous chemicals, side effects and fortnightly day long sessions in hospital.
Who knows yet what the future holds? I yet hold out hope, though everyone whom I come across who has known someone with this particular disease has also seen them die, and not believing in miracles my hope is coupled with the realistic idea that there is not long left. I am four months into my final two years, unless I hear otherwise. That said, the present is bright and happy.
Who knows yet what the future holds? I yet hold out hope, though everyone whom I come across who has known someone with this particular disease has also seen them die, and not believing in miracles my hope is coupled with the realistic idea that there is not long left. I am four months into my final two years, unless I hear otherwise. That said, the present is bright and happy.
Wednesday, September 2, 2015
Someone Else Said It Better Than I Ever Could
A good friend sent me this amazing article last night, written in 2004 by cancer sufferer, writer and one time contributing editor to Vanity Fair, Marjorie Williams while she was living on borrowed time long after prognosis. Reading her words was like she could see into my soul and had laid bare all of my hopes, fears and many things I had dared not say aloud. This is an incredibly powerful piece of writing and worth following through until the end. I have learned through reading this that all terminal cancer sufferers in my position (especially those who are parents with young families) are united by the same fears, hopes, dreams, loss, strength and resolve.
A Matter of Life and Death
A Matter of Life and Death
A Ray of Light
I faltered this cycle. My positivity gave way to a clawing negativity. Had my wife not drawn my attention to it, it no doubt would have been a slippery slope to darkness if not depression. Things just began to get me down. Its source was the fact that I could not shake the nausea this cycle. I felt dreadful constantly well into my second week. The source may well be my own doing, in that my reluctance to adhere to a prescribed oral hygiene regime may have left me with a pretty severe case of oral thrush, which at its worst causes nausea and vomiting of which there has been much this cycle - even resulting in another overnight stay in hospital on Monday night.
Back on the upward slope again with my head in the clouds, despite a healthy dose of man flu and a continuing battle with oral thrush, I am once again seeing many positives. Had I never fallen ill, my family (two brothers and parents) would not have visited me in New Zealand. They would never have had the opportunity to spend so many weeks with my son (and he with them) getting to know us as a family and - as one brother pointed out - getting to know my wife and I as a couple and feeling that I am in good hands here on the other side of the world. It also gave me an opportunity to spend two weeks with my next brother, whom I had not seen for that long in fifteen years or more and four weeks with another brother whom I had not seen for that length of time in twenty five years.
I am surrounded by an amazing immediate, intermediate and extended family, supportive friends, and an astoundingly supportive and understanding employer, all of whom continue to go out of their way to do anything they can for me. I am one of the luckiest people on Earth ... and I know it.
Back on the upward slope again with my head in the clouds, despite a healthy dose of man flu and a continuing battle with oral thrush, I am once again seeing many positives. Had I never fallen ill, my family (two brothers and parents) would not have visited me in New Zealand. They would never have had the opportunity to spend so many weeks with my son (and he with them) getting to know us as a family and - as one brother pointed out - getting to know my wife and I as a couple and feeling that I am in good hands here on the other side of the world. It also gave me an opportunity to spend two weeks with my next brother, whom I had not seen for that long in fifteen years or more and four weeks with another brother whom I had not seen for that length of time in twenty five years.
I am surrounded by an amazing immediate, intermediate and extended family, supportive friends, and an astoundingly supportive and understanding employer, all of whom continue to go out of their way to do anything they can for me. I am one of the luckiest people on Earth ... and I know it.
Sunday, August 23, 2015
Cytotoxicity
It has been a while since I have updated my blog. There has not been much to report, thankfully.
One of the more unusual aspects of chemotherapy is the fact that the patient's excretions become cytotoxic, which means damaging to cells. This means that saliva, blood, tears, sweat, semen, feces but most of all urine all become cytotoxic and could be harmful to others. This means that for a gentleman, you must always sit while urinating in a barthroom so as not to splash and close the lid before flushing. This is a difficult thing to remember all the time after thirty nine years of micturating while vertical. This means that, especially with the exploring hands and nature of a toddler in the home, means constant and fastidious cleaning of the bathroom. It would be eaiser to remember if it lasted throughout but it only lasts for seven days after treatment, so there is a lovely peroid of a few days at the end of each cycle where things return to normal. This is something that contributes heavily to the difficulty of remembering to take precautions - especially when going for a pee in the wee hours, which is when I most often appear to forget and stand as normal.
So far, my treatment seems to have settled down somewhat. It is now in a recognisable pattern that makes me feel less unsure of my body than I have done since beginning treatment. I am now currently hooked up to my oxaliplatin for cycle five. Cycles two and four went very smoothly, with me feeling relatively normal from the Thursday morning onwards for the rest of the cycle. The dexamthazone (steroid), though it makes me feel unpleasant - mildly nauseous and rather high - is the lesser of two evils rather than spending those days ferociously nauseous and vomiting.
At present my routine is as follows:
Monday - spend the day in hospital receiving chemotherapy. Spend the evening managing nausea.
Tuesday - spend the day at home managing nausea. May feel some pain and require morphine.
Wednesday - very likely to wake and feel indigestion pain early and require constant morphine throughout the day. My 5FU infuser gets detached around lunch time by the district nurse.
Thursday - may require tramadol to handle a milder form of the indigestion pain earlier on though nausea has disipated. Begin taking the G-CSF injections, which I can now give to myself.
Friday - Sunday - take G-CSF daily. No symptom control required. May have some leg bone, pelvis, lower back throbbing pain from the G-CSF which can be managed with paracetemol.
Saturday - get bloods taken to check white cell count prior to next cycle.
At present fatigue is not an issue, though I have been told it will come as it is cumalative and there is nothing they can provide to manage it. The treatment will continue until early November when I will get a chemotherapy holiday.
A chemotherapy holiday for those with a life limiting illness such as mine requiring palliative treatment (preparation for death) is a limited time away from chemotherapy to give me some chemo free time to enjoy life as a normal person. Regular scans will be needed to monitor the progress of the growth of my primary (not sure about secondaries) tumor. Chemotherapy will need to begin again once the tumor grows to a certain size. The first holiday will be between six weeks to four months. Obviously I am hoping for the latter or as close to it as possible. For this, my first and apparently longest, holiday I have planned the holiday of a lifetime. I will be cashing in my modest superannuation pension to have a no expense spared holiday of a lifetime. My small family will be returning home to Ireland and Scotland to see family and friends. For me it will be a chance to say goodbye to extendede family and old friends, the majority of whom I may never see again in person due to my prognosis. For my wife and son, it will be a way for them to reconnect and revisit family and friends to secure connections for after my passing. My son will have the opportunity to meet every single one of his relatives on both sides, so I will be taking lots of photographs to secure his memories.
One thing we do not have, as is probably the fact with most families, is photos of my wife, my son and I as a trio (as one of us is usually holding the camera). For those reading this whom I will see on my return trip, or indeed, whom I see regularly, please take photos - lots of them - of my family as a trio together. It is the one thing we do not have in droves and it is something I dearly want for my son and wife to help them heal after I am gone and to give them memories to cherish throughout the rest of their lives.
One of the more unusual aspects of chemotherapy is the fact that the patient's excretions become cytotoxic, which means damaging to cells. This means that saliva, blood, tears, sweat, semen, feces but most of all urine all become cytotoxic and could be harmful to others. This means that for a gentleman, you must always sit while urinating in a barthroom so as not to splash and close the lid before flushing. This is a difficult thing to remember all the time after thirty nine years of micturating while vertical. This means that, especially with the exploring hands and nature of a toddler in the home, means constant and fastidious cleaning of the bathroom. It would be eaiser to remember if it lasted throughout but it only lasts for seven days after treatment, so there is a lovely peroid of a few days at the end of each cycle where things return to normal. This is something that contributes heavily to the difficulty of remembering to take precautions - especially when going for a pee in the wee hours, which is when I most often appear to forget and stand as normal.
So far, my treatment seems to have settled down somewhat. It is now in a recognisable pattern that makes me feel less unsure of my body than I have done since beginning treatment. I am now currently hooked up to my oxaliplatin for cycle five. Cycles two and four went very smoothly, with me feeling relatively normal from the Thursday morning onwards for the rest of the cycle. The dexamthazone (steroid), though it makes me feel unpleasant - mildly nauseous and rather high - is the lesser of two evils rather than spending those days ferociously nauseous and vomiting.
At present my routine is as follows:
Monday - spend the day in hospital receiving chemotherapy. Spend the evening managing nausea.
Tuesday - spend the day at home managing nausea. May feel some pain and require morphine.
Wednesday - very likely to wake and feel indigestion pain early and require constant morphine throughout the day. My 5FU infuser gets detached around lunch time by the district nurse.
Thursday - may require tramadol to handle a milder form of the indigestion pain earlier on though nausea has disipated. Begin taking the G-CSF injections, which I can now give to myself.
Friday - Sunday - take G-CSF daily. No symptom control required. May have some leg bone, pelvis, lower back throbbing pain from the G-CSF which can be managed with paracetemol.
Saturday - get bloods taken to check white cell count prior to next cycle.
At present fatigue is not an issue, though I have been told it will come as it is cumalative and there is nothing they can provide to manage it. The treatment will continue until early November when I will get a chemotherapy holiday.
A chemotherapy holiday for those with a life limiting illness such as mine requiring palliative treatment (preparation for death) is a limited time away from chemotherapy to give me some chemo free time to enjoy life as a normal person. Regular scans will be needed to monitor the progress of the growth of my primary (not sure about secondaries) tumor. Chemotherapy will need to begin again once the tumor grows to a certain size. The first holiday will be between six weeks to four months. Obviously I am hoping for the latter or as close to it as possible. For this, my first and apparently longest, holiday I have planned the holiday of a lifetime. I will be cashing in my modest superannuation pension to have a no expense spared holiday of a lifetime. My small family will be returning home to Ireland and Scotland to see family and friends. For me it will be a chance to say goodbye to extendede family and old friends, the majority of whom I may never see again in person due to my prognosis. For my wife and son, it will be a way for them to reconnect and revisit family and friends to secure connections for after my passing. My son will have the opportunity to meet every single one of his relatives on both sides, so I will be taking lots of photographs to secure his memories.
One thing we do not have, as is probably the fact with most families, is photos of my wife, my son and I as a trio (as one of us is usually holding the camera). For those reading this whom I will see on my return trip, or indeed, whom I see regularly, please take photos - lots of them - of my family as a trio together. It is the one thing we do not have in droves and it is something I dearly want for my son and wife to help them heal after I am gone and to give them memories to cherish throughout the rest of their lives.
Wednesday, August 5, 2015
I Don't Want to Die
(I initially wrote this post two weeks ago but did not publish it. After re-reading it today I decided to post it nonetheless.)
There. I said it. It is the same phrase with which the majority of us would respond if asked. It is my response to the unavoidable ultimatum I have reluctantly received. Oddly, I am less afraid of death itself, which still seems as surreal a concept as it ever has or ever will. No doubt that will change once the doctors tell me "the end is nigh".
I never thought I would be making decisions about what sort of ceremony I would like to mark my passing, nor that I would be putting pen to paper to enscribe letters to be read at my own funeral. That said, it is not death nor its immediate aftermath that brings me sadness but the thought of my wife and son carrying on without me. The thought that my wife will not have me around to talk to and provide a shoulder to cry on through what will ultimately be one of the toughest times of her life. I want to be here to comfort her after my death. I know it makes no sense but how could I not want this?
My son. My gorgeous, inquisitive, loving, and smiley son. The thought of him having to accept the loss of his father is almost too much for me to bear. The thought that I will not be there to read to him any more, to read him "The Hitch Hiker's Guide to the Galaxy", "The Colour of Magic" and "The Lion the Witch and the Wardrobe" when he is old enough. I won't be there when he starts primary school, when he graduates from high school, when he gets caught drinking in his friend's house as a teenager and I have to come and pick him up in the middle of the night, to see him fall in love, to comfort him when he has his heart broken, to give him strength when he needs it most, to be a grandfather to his children. I think of me now at 39 and still having my father around and how much I have relied on him over the last 39 years and my heart breaks.
These are the things I think about when I have my weaker moments and they bring me great sadness. Though, I am trying where I can to fill in some of these gaps. I have begun recording myself reading him "The Hitch Hiker's Guide to the Galaxy". I am trying to catalogue all of my recorded music, I have purchased a video camera and am trying to think every day of how to fill it with memory creating moments for my wife and son.
There. I said it. It is the same phrase with which the majority of us would respond if asked. It is my response to the unavoidable ultimatum I have reluctantly received. Oddly, I am less afraid of death itself, which still seems as surreal a concept as it ever has or ever will. No doubt that will change once the doctors tell me "the end is nigh".
I never thought I would be making decisions about what sort of ceremony I would like to mark my passing, nor that I would be putting pen to paper to enscribe letters to be read at my own funeral. That said, it is not death nor its immediate aftermath that brings me sadness but the thought of my wife and son carrying on without me. The thought that my wife will not have me around to talk to and provide a shoulder to cry on through what will ultimately be one of the toughest times of her life. I want to be here to comfort her after my death. I know it makes no sense but how could I not want this?
My son. My gorgeous, inquisitive, loving, and smiley son. The thought of him having to accept the loss of his father is almost too much for me to bear. The thought that I will not be there to read to him any more, to read him "The Hitch Hiker's Guide to the Galaxy", "The Colour of Magic" and "The Lion the Witch and the Wardrobe" when he is old enough. I won't be there when he starts primary school, when he graduates from high school, when he gets caught drinking in his friend's house as a teenager and I have to come and pick him up in the middle of the night, to see him fall in love, to comfort him when he has his heart broken, to give him strength when he needs it most, to be a grandfather to his children. I think of me now at 39 and still having my father around and how much I have relied on him over the last 39 years and my heart breaks.
These are the things I think about when I have my weaker moments and they bring me great sadness. Though, I am trying where I can to fill in some of these gaps. I have begun recording myself reading him "The Hitch Hiker's Guide to the Galaxy". I am trying to catalogue all of my recorded music, I have purchased a video camera and am trying to think every day of how to fill it with memory creating moments for my wife and son.
The New Normal
So cycle two went so well that I was completely lulled into a false sense of security that this was going to be easy. Ha! I underestimated just how much of an effect chemotherapy has on a healthy body. I decided that I would not take my steroids (dexamethazone) because I didn't like the way they made me feel, which is quite true. They made me feel like someone had spiked my drink with some sort of stimulant. My thoughts raced, I became agitated and, as I realised during a heated conversation, it made me lose control of my emotions and very, very quick to anger about absolutely nothing out of completely nowhere. All of these things made me decide they were not for me and everyone agreed that perhaps if I disliked the effect so much I should just stop taking them.
Well, it appears I was somewhat hasty. The main funcion of the steroids is to control nausea and to give the patient a sense of well being. Without steroids my nausea was off the scale once again and I spent the majority of days 1 and 2 vomiting out of the blue. Once again, the nausea (which is constant) is actually completely and utterly unrelated to the actual vomiting, which comes out of nowhere with little to no warning - apart from the constant nausea. It is confusing, unpleasant and has made me realise that unpleasant as I find steroids, I preferrred the effect to the increased nausea and vomiting so lesson learned.
One of the other drugs I need to take is GCSF, which restores my white blood cell count (which is somewhat depleted by the chemotherapy) and neutrophils (both of which fight infection I am lead to believe). It unfortunately causes growing pain like pains in my shins, thighs and hips (which are the bones where marrow is manufactured within the body) and also, to my horror, gives me a throbbing pain in the base of my spine. All of this is manageable through simple paracetemol, though as I was warned by a fellow cancer survivor, every single thing that happens makes you think "oh, is that the cancer". Between cancer and chemotherapy, I feel I no longer know my body as well as I used to and having had ongoing issues with RSI (Repetative Strain Injury) / (OOS) Occupational Overuse Syndrome, the management of which requires intricate knowledge of your body and mind's workings, I feel somewhat ill at eas suddenly having my body throwing something new at me almost daily.
The most antisocial aspect of all of the various symptoms is that I appear to have developed ferocious flatulence. When I say ferocious, I mean ferocious. I seem to be ejecting several litres of gas from my body every 5 minutes on a 24 hour continuous basis. It wakes me from sleep. This has been going on a week, though there may be a solution so watch this space.
Otherwise, halfway through week 2 of cycle 3 I am once again feeling pretty much human again. My energy levels are pretty good and I am functioning fairly normally. I have seen both a psychologist and a consellor, which if you are in a situation similar to mine I cannot recommend more. They have both given me plenty of tools and tips for how to keep my mind healthy, though it seems that (having worked through stress management and OOS / RSI, which are intricately interwtined) I am managing rather well in that regard also. I put it down to luck and happenstance, though the psychologist was very quick to ensure I attribute it to myself, my choices and my well being all of which is mostly up to my own doing.
So, onwards and upwards. Things are prettty good at present. Moments of sadness are fewer and further between, though when they come I welcome and acknowledge them as sadness is part of the healing process and must be embraced and marked for what it is - a perfectly normal reaction to a terminal cancer diagnosis. Though initially I was fully accepting of my fate and what has befallen me, I am now genuinely hopeful for the future that there are many indicators that I am a category of patient that should react well to treatment and that there is hope for newer therapies around the corner. It is not blind hope but considered hope, though it is hope nonetheless and I welcome its warmth as do my family.
I wrote a post two weeks ago I never published called "I Don't Want to Die". It was written at a point when I felt very emotional and sad. I decided not to post it in the end, not because of its sentiment, which is as true now as it was then (I am sure not just for me but anyone who reads this and asks themselves the question) as it was when I wrote the words: I don't want to die. Who does?
Well, it appears I was somewhat hasty. The main funcion of the steroids is to control nausea and to give the patient a sense of well being. Without steroids my nausea was off the scale once again and I spent the majority of days 1 and 2 vomiting out of the blue. Once again, the nausea (which is constant) is actually completely and utterly unrelated to the actual vomiting, which comes out of nowhere with little to no warning - apart from the constant nausea. It is confusing, unpleasant and has made me realise that unpleasant as I find steroids, I preferrred the effect to the increased nausea and vomiting so lesson learned.
One of the other drugs I need to take is GCSF, which restores my white blood cell count (which is somewhat depleted by the chemotherapy) and neutrophils (both of which fight infection I am lead to believe). It unfortunately causes growing pain like pains in my shins, thighs and hips (which are the bones where marrow is manufactured within the body) and also, to my horror, gives me a throbbing pain in the base of my spine. All of this is manageable through simple paracetemol, though as I was warned by a fellow cancer survivor, every single thing that happens makes you think "oh, is that the cancer". Between cancer and chemotherapy, I feel I no longer know my body as well as I used to and having had ongoing issues with RSI (Repetative Strain Injury) / (OOS) Occupational Overuse Syndrome, the management of which requires intricate knowledge of your body and mind's workings, I feel somewhat ill at eas suddenly having my body throwing something new at me almost daily.
The most antisocial aspect of all of the various symptoms is that I appear to have developed ferocious flatulence. When I say ferocious, I mean ferocious. I seem to be ejecting several litres of gas from my body every 5 minutes on a 24 hour continuous basis. It wakes me from sleep. This has been going on a week, though there may be a solution so watch this space.
Otherwise, halfway through week 2 of cycle 3 I am once again feeling pretty much human again. My energy levels are pretty good and I am functioning fairly normally. I have seen both a psychologist and a consellor, which if you are in a situation similar to mine I cannot recommend more. They have both given me plenty of tools and tips for how to keep my mind healthy, though it seems that (having worked through stress management and OOS / RSI, which are intricately interwtined) I am managing rather well in that regard also. I put it down to luck and happenstance, though the psychologist was very quick to ensure I attribute it to myself, my choices and my well being all of which is mostly up to my own doing.
So, onwards and upwards. Things are prettty good at present. Moments of sadness are fewer and further between, though when they come I welcome and acknowledge them as sadness is part of the healing process and must be embraced and marked for what it is - a perfectly normal reaction to a terminal cancer diagnosis. Though initially I was fully accepting of my fate and what has befallen me, I am now genuinely hopeful for the future that there are many indicators that I am a category of patient that should react well to treatment and that there is hope for newer therapies around the corner. It is not blind hope but considered hope, though it is hope nonetheless and I welcome its warmth as do my family.
I wrote a post two weeks ago I never published called "I Don't Want to Die". It was written at a point when I felt very emotional and sad. I decided not to post it in the end, not because of its sentiment, which is as true now as it was then (I am sure not just for me but anyone who reads this and asks themselves the question) as it was when I wrote the words: I don't want to die. Who does?
Friday, July 24, 2015
Chemotherapy - My First Two Cycles: The Good, The Bad and the Ferocious
New as I was to cancer, chemotherapy was something I knew very little about. Though I had a very close friend go through chemotherapy twelve years ago, I was unfortunately in hospital myself with a very rare autoimmune disease called sarcoidosis, so being engrossed in my own illness, appear to have neglected to have indepth discussions with my friend about chemotherapy.
Chemo, it seems, is different for different people, as I will later explain. For me chemo treatment is something called FOLFIRINOX, which is a combination of four different drugs:
1. Oxaliplatin
2. Irinotecan
3. Leucovorin
4. Flourouracil (also known as 5FU).
To receive my specific treatment I was required to have a Port-A-Cath (I may refer to it as a port later) installed. A Port-A-Cath is a small plastic disc implanted under the skin (for me at least) in my chest on my right side, and a tube goes from this disc into one of my major veins - specifucally one of my pulminary veins. The procedure to insert it was unpleasant and at times excruciating. I was awake and through the use of local anaesthetic and fentinol was "sedated". I found the "pressure" exerted by the surgeon when the tube was shoved into my vein an excrutiating experience. This is not in any way a comment on the surgeon. The procedure was unpleasant and I would rather have been awake. I understand that students and registrars must learn their trade and I consented to their presence (I could have objected, but why would I? Everyone has to learn), however, lying on the operating theatre awake (as I was supposed to be), with a small screen stopping me from seeing anything that might alarm me (I am reminded of Douglas Adam's Peril-Sesitive Sunglasses from "The Hitch Hiker's Guide to the Galaxy") while listening to a surgeon discuss the details of what he was doing to an eagre to learn student surgeon is not something that would normally alarm me. This time, however, three days after a diagnosis of terminal cancer and having spent only a shocked few hours directly after diagnosis and one single night before the procedure alone with my wife I broke down in tears many times during the procedure and due to the screen and their indepth discussion it was some time before anyone realised my distress.
Anyway, once installed I was required to wait for it to heal before beginning chemotherapy. The procedure was a Friday morning. I began chemo a week from the following Monday.
Here is what chemotherapy is for me from a purely drug related standpoint. I am required to have a blood test two days prior to each cycle to ensure my white cell count is high enough for treatment. A "cycle" is the time between each chemotherapy treatment, which for me is two weeks long. I begin on a Monday by entering hospital and spend 5 - 6 hours connected to the drugs as they infuse. I learned from my first session that I have a reaction to Oxaliplatin, which is mild - sweating, mild stomach cramps and I forget the third one. I now receive an injection in my arm prior to beginning chemo to ensure I do not get these side effects. I was told about them and they are so mild I did not notice them until I went to the bathroom and felt the cold air on my forehead which let me know I had been sweating in what is not a specifically warm environment.
I receive the oxaliplatin via my port and it drips through slowly over a couple of hours. Then I am attached to the second two drugs which I receive simultaneously. In tandem with the chemo are side effect limiting drugs I must take regularly:
1. Omeprozole, which I (and it seems most of the rest of the civilised world) have been taking pretty reguarly anyway for the purposes of indigestion relief.
2. Antiemetics (anti nausea) of various sorts.
3. Steroids, which are supposed to reduce nausea and give me a sense of well-being. What they actually do (for me, once again, this is not a comment on the drugs or anyone else who may require them) is give me the complexion of a spotty teenager and give me the distinct feeling someone has spiked my drink with some sort of stimulant. At my request, I no longer take these as they appeared to do more harm than good (once again and from here on in, any comments that could be taken generally are more likely intended to be specifically about me and my own experience).
4. Zopicone, a sleeping tablet taken as required.
There is more, but it is for something specific so I will come back to it.
The only effect that I actually feel as a result of the chemotherapy is usually the effect of the steroids, which I am no longer taken - with one exception. One of the first three chemo drugs has a bizarre and unpleasant side effect that some people, of which I am one, can experience called cold neuropathy.
Cold neuropathy manifests itself for the forst week of each of my cycles by giving me ferociously painful pins and needles if I inadvertantly put my hands into or retrieve something from the fridge or chest freezer. It can also happen because it is mildly cold. Gloves are mandatory. I was even wearing them in bed prior to having central heating installed earlier this week. It also manifests itself as excrutiating pain in my feet should my feet become cold - such as on the concrete floor of various retail establishments as I have discovered to my horror. Thermal socks resolve this and while I joked with some colleagues recently about the lack of battery powered heated socks that Tomorrow's World on 1980s BBC television promised us, apprently you can purchase battery powered heated insoles from motorbike shops. I am going to buy some as soon as I finish this post no matter what the cost. It also manifests itself by giving severe pain in my lungs if I forget to only breath through my nose while walking outside (remembering it is currently winter in New Zealand). If I do something as natural as walking and talking, the pain can come and is debilitating. All thoroughly avoidable, yet so easy to overlook given my fondness for the contents of fridges, retail establishments and conversation on the move.
It manifests itself in other ways too, as I discovered during my first chemo day. My speech becomes affected, slowing to a crawl. This was terrifying when I noticed it. Apparently it is from my tongue becoming numb through cold, though mild cold. The only way to stop it is to place a heat pack on my throat. Thankfully, it does stop it and when it happened during my second chemo day I was less nervous. They also have an electric blanket plugged in and at the ready now and I wear head to two thermals in to hospital.
So, at the end of my five or so hours, I get my 5FU (my fourth and final chemo drug) connected to my port, where it stays for 46 hours. I need to carry it around with me for two days. I carry it in a bum bag. I do not like my, or indeed, any bum bag. Hence, I tend to spend this time at home.
They call the day in hospital, day 0. People who work in IT are familiar with the first in any given group being called "0" rather than "1". It is how hard disks are named / numbered. I have been working in IT for fifteen years and I am still not sure why this is. I accept it the same way anyone with electricity accepts that plugging an appliance into the wall makes it work. On day 2 (the third day, if you follow me) a district nurse calls to my house to remove the infuser. On days 3-6 I require an injection in my stomach, which my wife has been giving me, though I managed to give myself the last time. It is painless and straightforward. It restores my white cell count.
I have another side effect, which is indigestion the like of which I have never previously experienced. It comes as chest pain, which spreads quickly through the length of both arms and, oddly, into the left side of my jaw. I need my final two prescription drugs to tackle this:
1. Mylanta, which is liquid relief from indigestion and does little unfortunately.
2. Sevradol, which is oral morphine.
The latter, thankfully, eradicates the pain and thankfully, in my case at least, has no negative side effects whatsoever apart from potentially giving me constipation, so I take laxatives at the same time. It does have the added bonus of giving me a "warm sense of well being", which I thankfully rather enjoy; certainly a lot more than the pain it relieves. The down side is it does stop me from being able to drive for at least eight hours, which can be inconvenient to say the least.
My first cycle did not go well. I was admitted to hospital on three occasions - the final admission for three nights - all due to the side effects of chemotherapy. My first admission, which was an overnight admission, was due to vomiting. I vomited continuously throughout the day. Everything I ate, came back with reinforcements. My second and third admissions were related to the same thing: diarrheoa, but caused, as I found out during my third admission, by colitis, which is an enflamed bowel. Colitis is exacerbated by eating and drinking, so I required 24 hours of bowel rest to allow it to subside. This was not possible without remaining in hospital on intravenous fluids.
For various reasons, my first two admissions were unpleasant for reasons I will not go into here, though my third and (to date) final admission was actually very pleasant. I spent three nights in the oncology ward for the first time. It is where I developed my appreciated for how damned lucky I am with the type of cancer I have, terminal or not. I was in a room with a man, who judging by his job and achievements (which I obviously have no intention of discussing in this forum) was somewhat of an intellectual and a furious wit. My initial conversation with him was hillarious. The next day, I learned (as you do when you share a room with another patient and try as you might to distract yourself, cannot help but overhear their conversations) that he had very recently been diagnosed with a brain tumor and then next evening was not able to to recall his birthday in order to receive his medication. I also heard the coughing and wheezing of people with lung cancer and saw the immobility of other patients with other cancers. Whereas I still have all of my reason, my brain function, my health, my strength and my lung capacity allowing me to dance, sing and run. I feel incredibly lucky.
Through a dose reduction of my chemotherapy drugs by 20% my second cycle has been much more successful. Since day 2 (Wednesday of my first week), I have had few side effects of any sort bar the cold neuropathy. Even the nausea has barely shown its face.
Now, a few words on nausea (once again, as I experience it).
I experienced much nausea through my pancreatitis prior to my cancer diagnosis. A combination of Cylizine and Ondansitron was able to resolve much of it and allow me to muddle through. These two drugs combined with two others whose names I do not recall did little to resolve my nausea during my first cycle, though with Cyclizine alone for the first few days I have made it through my second cycle. On my first cycle I was nausea free for the last three days, whereas for cycle 2, I was nausea free for (to date, with tomorrow being my last dya before getting chemo again) 10 days, and assuming tomorrow I remain the same only the first three days cause me any hassle.
The nausea itself is vile, though. It literally makes you feel as if you are seconds from vomiting and its constant. Until you have felt this, you cannot imagine how it feels as nausea such as this is rarely if ever felt without vomiting immediately, unless of course (in my experience) with chemo or pancreatitis. During my first cycle, I experienced another type of nausea that caused my throat to go through all the actions of vomiting though without ejecting my stomach contents. Thankfully, though experienced frequently during my first cycle, I have not experienced it since.
One thing I may not have previously mentioned is that between the start of March and now, my weight has dropped from 110kg to 85kg. Pancreatitis related loss of apetite and days in hospital of which I have lost count where I was either Nil-By-Mouth or on a liquid diet have given me the figure of my sixteen year old self. There have to be some benefits to terminal cancer, eh? At least I look damn good. Shame its winter and I cannot show of my new physique before I pile it all back again.
Chemo, it seems, is different for different people, as I will later explain. For me chemo treatment is something called FOLFIRINOX, which is a combination of four different drugs:
1. Oxaliplatin
2. Irinotecan
3. Leucovorin
4. Flourouracil (also known as 5FU).
To receive my specific treatment I was required to have a Port-A-Cath (I may refer to it as a port later) installed. A Port-A-Cath is a small plastic disc implanted under the skin (for me at least) in my chest on my right side, and a tube goes from this disc into one of my major veins - specifucally one of my pulminary veins. The procedure to insert it was unpleasant and at times excruciating. I was awake and through the use of local anaesthetic and fentinol was "sedated". I found the "pressure" exerted by the surgeon when the tube was shoved into my vein an excrutiating experience. This is not in any way a comment on the surgeon. The procedure was unpleasant and I would rather have been awake. I understand that students and registrars must learn their trade and I consented to their presence (I could have objected, but why would I? Everyone has to learn), however, lying on the operating theatre awake (as I was supposed to be), with a small screen stopping me from seeing anything that might alarm me (I am reminded of Douglas Adam's Peril-Sesitive Sunglasses from "The Hitch Hiker's Guide to the Galaxy") while listening to a surgeon discuss the details of what he was doing to an eagre to learn student surgeon is not something that would normally alarm me. This time, however, three days after a diagnosis of terminal cancer and having spent only a shocked few hours directly after diagnosis and one single night before the procedure alone with my wife I broke down in tears many times during the procedure and due to the screen and their indepth discussion it was some time before anyone realised my distress.
Anyway, once installed I was required to wait for it to heal before beginning chemotherapy. The procedure was a Friday morning. I began chemo a week from the following Monday.
Here is what chemotherapy is for me from a purely drug related standpoint. I am required to have a blood test two days prior to each cycle to ensure my white cell count is high enough for treatment. A "cycle" is the time between each chemotherapy treatment, which for me is two weeks long. I begin on a Monday by entering hospital and spend 5 - 6 hours connected to the drugs as they infuse. I learned from my first session that I have a reaction to Oxaliplatin, which is mild - sweating, mild stomach cramps and I forget the third one. I now receive an injection in my arm prior to beginning chemo to ensure I do not get these side effects. I was told about them and they are so mild I did not notice them until I went to the bathroom and felt the cold air on my forehead which let me know I had been sweating in what is not a specifically warm environment.
I receive the oxaliplatin via my port and it drips through slowly over a couple of hours. Then I am attached to the second two drugs which I receive simultaneously. In tandem with the chemo are side effect limiting drugs I must take regularly:
1. Omeprozole, which I (and it seems most of the rest of the civilised world) have been taking pretty reguarly anyway for the purposes of indigestion relief.
2. Antiemetics (anti nausea) of various sorts.
3. Steroids, which are supposed to reduce nausea and give me a sense of well-being. What they actually do (for me, once again, this is not a comment on the drugs or anyone else who may require them) is give me the complexion of a spotty teenager and give me the distinct feeling someone has spiked my drink with some sort of stimulant. At my request, I no longer take these as they appeared to do more harm than good (once again and from here on in, any comments that could be taken generally are more likely intended to be specifically about me and my own experience).
4. Zopicone, a sleeping tablet taken as required.
There is more, but it is for something specific so I will come back to it.
The only effect that I actually feel as a result of the chemotherapy is usually the effect of the steroids, which I am no longer taken - with one exception. One of the first three chemo drugs has a bizarre and unpleasant side effect that some people, of which I am one, can experience called cold neuropathy.
Cold neuropathy manifests itself for the forst week of each of my cycles by giving me ferociously painful pins and needles if I inadvertantly put my hands into or retrieve something from the fridge or chest freezer. It can also happen because it is mildly cold. Gloves are mandatory. I was even wearing them in bed prior to having central heating installed earlier this week. It also manifests itself as excrutiating pain in my feet should my feet become cold - such as on the concrete floor of various retail establishments as I have discovered to my horror. Thermal socks resolve this and while I joked with some colleagues recently about the lack of battery powered heated socks that Tomorrow's World on 1980s BBC television promised us, apprently you can purchase battery powered heated insoles from motorbike shops. I am going to buy some as soon as I finish this post no matter what the cost. It also manifests itself by giving severe pain in my lungs if I forget to only breath through my nose while walking outside (remembering it is currently winter in New Zealand). If I do something as natural as walking and talking, the pain can come and is debilitating. All thoroughly avoidable, yet so easy to overlook given my fondness for the contents of fridges, retail establishments and conversation on the move.
It manifests itself in other ways too, as I discovered during my first chemo day. My speech becomes affected, slowing to a crawl. This was terrifying when I noticed it. Apparently it is from my tongue becoming numb through cold, though mild cold. The only way to stop it is to place a heat pack on my throat. Thankfully, it does stop it and when it happened during my second chemo day I was less nervous. They also have an electric blanket plugged in and at the ready now and I wear head to two thermals in to hospital.
So, at the end of my five or so hours, I get my 5FU (my fourth and final chemo drug) connected to my port, where it stays for 46 hours. I need to carry it around with me for two days. I carry it in a bum bag. I do not like my, or indeed, any bum bag. Hence, I tend to spend this time at home.
They call the day in hospital, day 0. People who work in IT are familiar with the first in any given group being called "0" rather than "1". It is how hard disks are named / numbered. I have been working in IT for fifteen years and I am still not sure why this is. I accept it the same way anyone with electricity accepts that plugging an appliance into the wall makes it work. On day 2 (the third day, if you follow me) a district nurse calls to my house to remove the infuser. On days 3-6 I require an injection in my stomach, which my wife has been giving me, though I managed to give myself the last time. It is painless and straightforward. It restores my white cell count.
I have another side effect, which is indigestion the like of which I have never previously experienced. It comes as chest pain, which spreads quickly through the length of both arms and, oddly, into the left side of my jaw. I need my final two prescription drugs to tackle this:
1. Mylanta, which is liquid relief from indigestion and does little unfortunately.
2. Sevradol, which is oral morphine.
The latter, thankfully, eradicates the pain and thankfully, in my case at least, has no negative side effects whatsoever apart from potentially giving me constipation, so I take laxatives at the same time. It does have the added bonus of giving me a "warm sense of well being", which I thankfully rather enjoy; certainly a lot more than the pain it relieves. The down side is it does stop me from being able to drive for at least eight hours, which can be inconvenient to say the least.
My first cycle did not go well. I was admitted to hospital on three occasions - the final admission for three nights - all due to the side effects of chemotherapy. My first admission, which was an overnight admission, was due to vomiting. I vomited continuously throughout the day. Everything I ate, came back with reinforcements. My second and third admissions were related to the same thing: diarrheoa, but caused, as I found out during my third admission, by colitis, which is an enflamed bowel. Colitis is exacerbated by eating and drinking, so I required 24 hours of bowel rest to allow it to subside. This was not possible without remaining in hospital on intravenous fluids.
For various reasons, my first two admissions were unpleasant for reasons I will not go into here, though my third and (to date) final admission was actually very pleasant. I spent three nights in the oncology ward for the first time. It is where I developed my appreciated for how damned lucky I am with the type of cancer I have, terminal or not. I was in a room with a man, who judging by his job and achievements (which I obviously have no intention of discussing in this forum) was somewhat of an intellectual and a furious wit. My initial conversation with him was hillarious. The next day, I learned (as you do when you share a room with another patient and try as you might to distract yourself, cannot help but overhear their conversations) that he had very recently been diagnosed with a brain tumor and then next evening was not able to to recall his birthday in order to receive his medication. I also heard the coughing and wheezing of people with lung cancer and saw the immobility of other patients with other cancers. Whereas I still have all of my reason, my brain function, my health, my strength and my lung capacity allowing me to dance, sing and run. I feel incredibly lucky.
Through a dose reduction of my chemotherapy drugs by 20% my second cycle has been much more successful. Since day 2 (Wednesday of my first week), I have had few side effects of any sort bar the cold neuropathy. Even the nausea has barely shown its face.
Now, a few words on nausea (once again, as I experience it).
I experienced much nausea through my pancreatitis prior to my cancer diagnosis. A combination of Cylizine and Ondansitron was able to resolve much of it and allow me to muddle through. These two drugs combined with two others whose names I do not recall did little to resolve my nausea during my first cycle, though with Cyclizine alone for the first few days I have made it through my second cycle. On my first cycle I was nausea free for the last three days, whereas for cycle 2, I was nausea free for (to date, with tomorrow being my last dya before getting chemo again) 10 days, and assuming tomorrow I remain the same only the first three days cause me any hassle.
The nausea itself is vile, though. It literally makes you feel as if you are seconds from vomiting and its constant. Until you have felt this, you cannot imagine how it feels as nausea such as this is rarely if ever felt without vomiting immediately, unless of course (in my experience) with chemo or pancreatitis. During my first cycle, I experienced another type of nausea that caused my throat to go through all the actions of vomiting though without ejecting my stomach contents. Thankfully, though experienced frequently during my first cycle, I have not experienced it since.
One thing I may not have previously mentioned is that between the start of March and now, my weight has dropped from 110kg to 85kg. Pancreatitis related loss of apetite and days in hospital of which I have lost count where I was either Nil-By-Mouth or on a liquid diet have given me the figure of my sixteen year old self. There have to be some benefits to terminal cancer, eh? At least I look damn good. Shame its winter and I cannot show of my new physique before I pile it all back again.
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