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
Wednesday, September 2, 2015
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.
Thursday, July 23, 2015
The Journey to Cancer Diagnosis
My own diagnosis is my first real experience of cancer. I have previously had an aunt who passed away from cancer and have had a close friend who went through chemotherapy for a relatively benign cancer and was completely cured around twelve years ago. Five weeks ago, at the age of 39, after months of illness that I had incorrectly assumed had come to an end, I was diagnosed with terminal pancreatic cancer. After my initial diagnosis it had been assumed and hoped that an operation called a whipples could have potentially cured me of the cancer (an operation itself with a 10% chance of mortality), though pre-operation exploration led to the discovery that the cancer had already spread to my liver and hence an operation would serve no purpose. The only course of action is palliative chemotherapy, which I began within seven days. It is now hoped that chemotherapy can keep me alive long enough for a new therapy to come along that may be able to prlong my life further than my assumed prognosis. My diagnosis is metastatic adenocarcinoma pancreas. My prognosis is "a couple of years". Unless a cure comes along, the medical professionals under whose excellent care I am believe this cancer will kill me as there is currently no cure for this form of cancer.
I first became ill in early March this year (2015). I had ongoing issues with night time indigestion for the best part of a decade, though it had always manifested itself as burning sensation - never reflux. In February, I had my first experience of reflux, where I woke in the night with my mouth full of fluid (though not vomit) which had come from my stomach. In early March I woke choking in the night having had the same thing happen though as I had not awoken I had inhaled - or aspirated - the fluid, which I could tell from the acidic burning sensation from my lungs. These two incidents were the first sign to me, looking back, of what my body was going through.
Within days I developed a ferocious itch from head to toe with no indication of cause nor any sort of rash beyond sores which developed due to my constant scratching. At the same time I developed stomach cramps, though at this stage they were quite mild and frequent diarrheoa. The main focus for me and my GP was the itching. I was away with business for a week during this early stage so I had the symptoms for three weeks before I was prescribed steroids to attend to the itch to allow it to settle the itching. The steroids had the added effect of also masking the pain in my stomach. I realised this when on two occasions I neglected to take my morning dose and had to return home from work during my lunch break to get my medication due to stomach pain. Early during this time my urine become dark brown and my feces took on a grey clay colour.
My GP saw no link between the symptoms I was having, whereas early in the process my own research led to link between all my symptoms being pancreatic cancer, which was dismissed by everyone to whom I related this information.
After two weeks, I stopped taking the steroids and within days the pain in my abdomen had become unbearable. My GP thought it may be an ulcer and sent me for the test for h-pylori to see if I had any sign of bacterial infection in my stomach. The initial blood test showed positive for h-pylori so he began me on antibiotics to save time rather than going with the required fecal test, which is normal to 100% diagnose h-pylori presence. The pain increased over the coming days and I returned to my GP for further advice of which he had none.
After two further days of pain, my wife insisted I present myself at emergency. When I described my pain and symptoms the ED doctor immediately suggested it may be gall stones and that though I was not yellow of skin or of eye that I was very severly jaundice. The blood tests confirmed this and though no gall stones were visible on the ultrasound I was admitted to a surgical ward where the surgeon also diagnosed pancreatitis as the source of the pain. Having had a friend who previously suffered from necrotising pancreatitis, this made me rather fear for my outlook and health in general.
A gastroscopy was scheduled to review the common shared duct between the gall bladder and pancreas and an ERCP was suggested, which is a procedure where a balloon is inserted into the gall bladder, inflated then retracted in the hopes that any stones, partial stones or sludge (which coagulates to form stones) will be removed in the process. They also decided to place a plastic stent in the duct to ensure it would remain sufficiently open to allow any further stones which formed to pass through.
They conducted the procedure and unfortunately for me did not use sufficient sedative (it was waking sedation rather than full general anaethestic), which meant I was fully awake, aware, lucid and conscious during the procedure, which as a result was traumatic, harrowing, agonising and terrifying.
After almost a week in hospital and having undergone the procedure I was discharged. Over the coming weeks my condition worsened with energy levels dropping, and pain increasing - especially after meals. My bloods were monitored during the next ten days and even though all of the levels which indicated my pancreas and liver were still malfunctioning continued to increase my GP once again said I did not require a trip to hospital unless I became dehydrated. After ten days I readmitted myself to ED and they could not believe given my blood results that my GP had not suggested I admit myself much earlier. Another ERCP was performed, though I insisted I would not allow any procedure to start until I had been sedated to the point where I was unresponsive and therefore would not have a repeat of my previous trauma. Another stent was placed in my pancreatic rather than bile duct.
Once I recovered from this procedure my condition improved dramatically and quickly. I still had occasional stomach pain if I ate certain types of food, though on the whole I felt much better. As a precaution I was scheduled for an operation to remove my gall bladder to ensure I would not have further issues with either gall stones or pancreatitis which everyone felt tended to worsen with each recurance.
By late May after many admissions to hospital I considered myself over the worst of it and waiting for a minor operation to remove my gall bladder. When I met initially with the surgeon who was to perform the operation, he was keen that just to make 100% sure we were dealing with gall stones and nothing else, wanted me to undergo an endoscopic ultrasound (EUS) procedure, for which I needed to travel to another city. This was purely a formaility, though they had to be 100% there was nothing more sinister at play as the second ERCP/gastroscopy had revealed a stricture, meaning my pancreatic duct was inflamed causing it to constrict and hence compress the internal structure of the duct. This was thought to be highly irregular and was concerning everyone.
Interesingly, the next day I ended up seeing a completely different surgeon for an appointment that had been setup way back when my illness started in March. This was with a view to seeing if I needed an endoscopy to view my stomach and potentialy hunt for ulcers. I attended the meeting anyway and his take was that gall stones would not cause itching and he believed something more sinister was at play.
From that moment on I was convinced that I had cancer, though having done no research (I do not believe the Internet is your friend when researching these things - though it and I had been right about my own diagnosis months before anyone else) I obviously had no idea how serious pancreatic cancer could be. I joked that I was in the Copenhagan interpretation of quamtum mechanical superposition of both having and not having cancer until the results of the EUS came through.
After waking form the EUS, the surgeoun told me that he had found a mass and had taken a needle biopsy of the mass. He said that regardless of whether it was cancer or not, the mass needed to be removed and I would more than likely require a whipples and/or chemotherapy. In shock I had the horrible experience of having to ask the surgeon to relay this information to my wife while I heard her become more and more upset on the phone. It was horrible. Even then, I had not grasped the gravity of my situation.
From then, we were in limbo. I returned to my home town that day after the procedure (a Friday). That afternoon I had severe abdominal pain. The next morning I had to admit myself to ED once more. It is a bad sign when the receptionist in the Emergency Department greets you by name on your arrival. The pancreatitis had returned as a result of the EUS procedure I had undergone days before. I required continuous intravenous morphine to stem the pain. I was discharged on Monday evening then returned to work the following day (Tuesday). After my lunch on Wednesday I was once again in so much pain that I was readmitted to hospital and immediately put back on morphine. While the nurses were putting a canula in my arm I missed a call on my phone. It was from my surgeon so I knew the news wasn't good. I was panicked and so upset that I was unable to hear his mobile number on the voice mail and had an agonising hour waiting for the nursing staff in the hospital to find it. When I rang him he told me that the biospy had confirmed cancer. He was on his way to see me.
My wife had arrived by the time the surgeon came and he told me that it was pancreatic cancer and that I would need a whipples. It did not register with me but my wife told me he had said that this type of cancer had a five year life expectancy of 30%. I still do not know if this is after a successful whipples. He told me that he planned to rush me in for a whipples the following Wednesday. Prior to that I needed a laporoscopy to ensure there would be no complications and that surgery was possible.
After a few false starts, I had my laporoscopy on the Saturday. They told me there had been a couple of spots on my liver and though these had been no concern though they had taken a biopsy. There were a few days of limbo while I kept on at people to set meetings to ensure my operation would happen. A meeting was scheduled with my surgeon for the Tuesday afternoon to discuss the operation. At this stage having been initially terrified at the thought of the whipples had fully psyched myself up for it and was no longer even nervous. It was a cure. I wanted the cancer out.
Something in the look on my surgeon's face as he walked us to his office that day let me know the news was not good. Surgery was not possible. The spots on my liver were secondaries of my pancreatitic cancer. Now I had a choice between three options:
1. Do nothing and allow the cancer to kill me.
2. Wait until the cancer made me sick and begin chemo.
3. Begin chemo now, while I was (finally) well in the hopes that I would be stronger for the fight.
I chose the third option. I saw no other genuine choice. I am a husband and father of a two year old son. I have to fight now with everything I have.
I was shocked. My wife was inconsolable. I was numb. Cancer. Incurable. Terminal. Chemo only buys me time. How much time? I did not want to know. Not yet. During a very long discussion between my surgeon, a cancer nurse coordinator and my oncologist I took in very little. I may have asked "am I dying?" to which the answer may have been "not yet". During the discussion the surgeon said, I will prescribe you some antibiotics because you currently have a plastic stent from the EUS / ERCP procesure (which removed the first two and replaced them with another) which as a foreign body may cause infection. He said, look out for rigors, which was overly violent shivering without necessarily developing a temperature. He said to take an antibiotic and rush to ED.
We left. We were numb. We lived close the hospital so we walked home. We thought we needed some time alone to process this so we asked a friend to pick our son up from day care and stay over with her (his first time ever spending a night away from home). As soon as we got him packed off we came back in to the house to light a fire and heat up some dinner. Within ten minutes I was shivering. We thought it was shock. It was rigors. I had to rush to ED. My wife is a nurse and told me I had an epic temperature and heart rate and got a "code 2 in the waiting room" announcement once they took my vitals. I spent the evening and night after this diagnosis drifting in and out of consciousness while my wife sat by my bed. I was admitted to a ward and remained in hospital for two nights before I was given leave to return home for a night.
More than 48 hours after the diagnosis my wife and I finally had time alone together. We made a decision right then. Time is short. We are not going to allow this take over our life. This is going to be just another part of our life. All that is important is family and enjoying the time we have left and creating memories for everyone to carry with them after I die. I was not going to take this lying down but I was also not going to let it beat or consume me. Time is short and I was going to embrace the time I had left.
Oddly, despite the diagnosis and prognosis, I was in a very happy place before this all began and everything that was there to make me happy is all still there now so I am still happy. The first few weeks were very hard. Any thoughts of my son not having his father through all the important and unimportant events in his life were devastating to me. The thought of my wife not having me to love hold, talk to, lean on, rely on and be there for was crushing. It still is. That will never change. However, I am here now. We are all here now. Each day is a new day and another day I am here to be with my family and friends and enjoy life. Despite having terminal cancer, I still feel incredibly lucky that I do not have a cancer that affects my brain, my thoughts, my mobility, (currently) my strength, or my lung capacity. I can still sing at the top of my lungs. I can still play guitar. I can still laugh. I can still eat. I can still throw my boy up on my shoulders. Life is presently incredibly happy for me. The present is all that matters to me now.
I first became ill in early March this year (2015). I had ongoing issues with night time indigestion for the best part of a decade, though it had always manifested itself as burning sensation - never reflux. In February, I had my first experience of reflux, where I woke in the night with my mouth full of fluid (though not vomit) which had come from my stomach. In early March I woke choking in the night having had the same thing happen though as I had not awoken I had inhaled - or aspirated - the fluid, which I could tell from the acidic burning sensation from my lungs. These two incidents were the first sign to me, looking back, of what my body was going through.
Within days I developed a ferocious itch from head to toe with no indication of cause nor any sort of rash beyond sores which developed due to my constant scratching. At the same time I developed stomach cramps, though at this stage they were quite mild and frequent diarrheoa. The main focus for me and my GP was the itching. I was away with business for a week during this early stage so I had the symptoms for three weeks before I was prescribed steroids to attend to the itch to allow it to settle the itching. The steroids had the added effect of also masking the pain in my stomach. I realised this when on two occasions I neglected to take my morning dose and had to return home from work during my lunch break to get my medication due to stomach pain. Early during this time my urine become dark brown and my feces took on a grey clay colour.
My GP saw no link between the symptoms I was having, whereas early in the process my own research led to link between all my symptoms being pancreatic cancer, which was dismissed by everyone to whom I related this information.
After two weeks, I stopped taking the steroids and within days the pain in my abdomen had become unbearable. My GP thought it may be an ulcer and sent me for the test for h-pylori to see if I had any sign of bacterial infection in my stomach. The initial blood test showed positive for h-pylori so he began me on antibiotics to save time rather than going with the required fecal test, which is normal to 100% diagnose h-pylori presence. The pain increased over the coming days and I returned to my GP for further advice of which he had none.
After two further days of pain, my wife insisted I present myself at emergency. When I described my pain and symptoms the ED doctor immediately suggested it may be gall stones and that though I was not yellow of skin or of eye that I was very severly jaundice. The blood tests confirmed this and though no gall stones were visible on the ultrasound I was admitted to a surgical ward where the surgeon also diagnosed pancreatitis as the source of the pain. Having had a friend who previously suffered from necrotising pancreatitis, this made me rather fear for my outlook and health in general.
A gastroscopy was scheduled to review the common shared duct between the gall bladder and pancreas and an ERCP was suggested, which is a procedure where a balloon is inserted into the gall bladder, inflated then retracted in the hopes that any stones, partial stones or sludge (which coagulates to form stones) will be removed in the process. They also decided to place a plastic stent in the duct to ensure it would remain sufficiently open to allow any further stones which formed to pass through.
They conducted the procedure and unfortunately for me did not use sufficient sedative (it was waking sedation rather than full general anaethestic), which meant I was fully awake, aware, lucid and conscious during the procedure, which as a result was traumatic, harrowing, agonising and terrifying.
After almost a week in hospital and having undergone the procedure I was discharged. Over the coming weeks my condition worsened with energy levels dropping, and pain increasing - especially after meals. My bloods were monitored during the next ten days and even though all of the levels which indicated my pancreas and liver were still malfunctioning continued to increase my GP once again said I did not require a trip to hospital unless I became dehydrated. After ten days I readmitted myself to ED and they could not believe given my blood results that my GP had not suggested I admit myself much earlier. Another ERCP was performed, though I insisted I would not allow any procedure to start until I had been sedated to the point where I was unresponsive and therefore would not have a repeat of my previous trauma. Another stent was placed in my pancreatic rather than bile duct.
Once I recovered from this procedure my condition improved dramatically and quickly. I still had occasional stomach pain if I ate certain types of food, though on the whole I felt much better. As a precaution I was scheduled for an operation to remove my gall bladder to ensure I would not have further issues with either gall stones or pancreatitis which everyone felt tended to worsen with each recurance.
By late May after many admissions to hospital I considered myself over the worst of it and waiting for a minor operation to remove my gall bladder. When I met initially with the surgeon who was to perform the operation, he was keen that just to make 100% sure we were dealing with gall stones and nothing else, wanted me to undergo an endoscopic ultrasound (EUS) procedure, for which I needed to travel to another city. This was purely a formaility, though they had to be 100% there was nothing more sinister at play as the second ERCP/gastroscopy had revealed a stricture, meaning my pancreatic duct was inflamed causing it to constrict and hence compress the internal structure of the duct. This was thought to be highly irregular and was concerning everyone.
Interesingly, the next day I ended up seeing a completely different surgeon for an appointment that had been setup way back when my illness started in March. This was with a view to seeing if I needed an endoscopy to view my stomach and potentialy hunt for ulcers. I attended the meeting anyway and his take was that gall stones would not cause itching and he believed something more sinister was at play.
From that moment on I was convinced that I had cancer, though having done no research (I do not believe the Internet is your friend when researching these things - though it and I had been right about my own diagnosis months before anyone else) I obviously had no idea how serious pancreatic cancer could be. I joked that I was in the Copenhagan interpretation of quamtum mechanical superposition of both having and not having cancer until the results of the EUS came through.
After waking form the EUS, the surgeoun told me that he had found a mass and had taken a needle biopsy of the mass. He said that regardless of whether it was cancer or not, the mass needed to be removed and I would more than likely require a whipples and/or chemotherapy. In shock I had the horrible experience of having to ask the surgeon to relay this information to my wife while I heard her become more and more upset on the phone. It was horrible. Even then, I had not grasped the gravity of my situation.
From then, we were in limbo. I returned to my home town that day after the procedure (a Friday). That afternoon I had severe abdominal pain. The next morning I had to admit myself to ED once more. It is a bad sign when the receptionist in the Emergency Department greets you by name on your arrival. The pancreatitis had returned as a result of the EUS procedure I had undergone days before. I required continuous intravenous morphine to stem the pain. I was discharged on Monday evening then returned to work the following day (Tuesday). After my lunch on Wednesday I was once again in so much pain that I was readmitted to hospital and immediately put back on morphine. While the nurses were putting a canula in my arm I missed a call on my phone. It was from my surgeon so I knew the news wasn't good. I was panicked and so upset that I was unable to hear his mobile number on the voice mail and had an agonising hour waiting for the nursing staff in the hospital to find it. When I rang him he told me that the biospy had confirmed cancer. He was on his way to see me.
My wife had arrived by the time the surgeon came and he told me that it was pancreatic cancer and that I would need a whipples. It did not register with me but my wife told me he had said that this type of cancer had a five year life expectancy of 30%. I still do not know if this is after a successful whipples. He told me that he planned to rush me in for a whipples the following Wednesday. Prior to that I needed a laporoscopy to ensure there would be no complications and that surgery was possible.
After a few false starts, I had my laporoscopy on the Saturday. They told me there had been a couple of spots on my liver and though these had been no concern though they had taken a biopsy. There were a few days of limbo while I kept on at people to set meetings to ensure my operation would happen. A meeting was scheduled with my surgeon for the Tuesday afternoon to discuss the operation. At this stage having been initially terrified at the thought of the whipples had fully psyched myself up for it and was no longer even nervous. It was a cure. I wanted the cancer out.
Something in the look on my surgeon's face as he walked us to his office that day let me know the news was not good. Surgery was not possible. The spots on my liver were secondaries of my pancreatitic cancer. Now I had a choice between three options:
1. Do nothing and allow the cancer to kill me.
2. Wait until the cancer made me sick and begin chemo.
3. Begin chemo now, while I was (finally) well in the hopes that I would be stronger for the fight.
I chose the third option. I saw no other genuine choice. I am a husband and father of a two year old son. I have to fight now with everything I have.
I was shocked. My wife was inconsolable. I was numb. Cancer. Incurable. Terminal. Chemo only buys me time. How much time? I did not want to know. Not yet. During a very long discussion between my surgeon, a cancer nurse coordinator and my oncologist I took in very little. I may have asked "am I dying?" to which the answer may have been "not yet". During the discussion the surgeon said, I will prescribe you some antibiotics because you currently have a plastic stent from the EUS / ERCP procesure (which removed the first two and replaced them with another) which as a foreign body may cause infection. He said, look out for rigors, which was overly violent shivering without necessarily developing a temperature. He said to take an antibiotic and rush to ED.
We left. We were numb. We lived close the hospital so we walked home. We thought we needed some time alone to process this so we asked a friend to pick our son up from day care and stay over with her (his first time ever spending a night away from home). As soon as we got him packed off we came back in to the house to light a fire and heat up some dinner. Within ten minutes I was shivering. We thought it was shock. It was rigors. I had to rush to ED. My wife is a nurse and told me I had an epic temperature and heart rate and got a "code 2 in the waiting room" announcement once they took my vitals. I spent the evening and night after this diagnosis drifting in and out of consciousness while my wife sat by my bed. I was admitted to a ward and remained in hospital for two nights before I was given leave to return home for a night.
More than 48 hours after the diagnosis my wife and I finally had time alone together. We made a decision right then. Time is short. We are not going to allow this take over our life. This is going to be just another part of our life. All that is important is family and enjoying the time we have left and creating memories for everyone to carry with them after I die. I was not going to take this lying down but I was also not going to let it beat or consume me. Time is short and I was going to embrace the time I had left.
Oddly, despite the diagnosis and prognosis, I was in a very happy place before this all began and everything that was there to make me happy is all still there now so I am still happy. The first few weeks were very hard. Any thoughts of my son not having his father through all the important and unimportant events in his life were devastating to me. The thought of my wife not having me to love hold, talk to, lean on, rely on and be there for was crushing. It still is. That will never change. However, I am here now. We are all here now. Each day is a new day and another day I am here to be with my family and friends and enjoy life. Despite having terminal cancer, I still feel incredibly lucky that I do not have a cancer that affects my brain, my thoughts, my mobility, (currently) my strength, or my lung capacity. I can still sing at the top of my lungs. I can still play guitar. I can still laugh. I can still eat. I can still throw my boy up on my shoulders. Life is presently incredibly happy for me. The present is all that matters to me now.
Subscribe to:
Posts (Atom)