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.
Sunday, August 23, 2015
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?
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