One week out.
It seems weird that is has been a week since my surgery. On the one hand, I feel great so it seems like a really, really long time since I woke up in the post-anesthetic care unit. I wouldn't go so far as to say my life has returned to normal (despite the title of my last post), but it does feel pretty wonderful to pet my dog, wear my own clothes, sleep in my own bed, eat real food (more on that a little later), and shower. There are still a few things that have undeniably changed since my surgery; some may change back, but others may just represent a "new normal", the way my life is after dealing with my cancer.
That's the other hand. My life has changed. It changed the moment my surgeon removed most of my rectum, 5cm or so on either side of the site of my tumour. I can remember a time before I was faced with the inevitable outcomes of this surgery, but they are in the past now. A day, a week, a year; I'm not sure that how far they are in the past is really a difference that matters. So in that respect my life has become this new experience; it seems like forever since I had my surgery. Even though it's just been a week.
One thing that has changed - rather weirdly - is my sense of smell and taste. During my surgery I had a nasogastric (NG) tube placed by my anesthesiologist as a precaution against aspirating. It's a common medical procedure that happens every day in virtually every hospital in the world. I have seen NG tubes in tiny premature babies and in patients who have already celebrated their hundredth birthday. It's no big deal really, yet I have a lingering lack of smell and taste, particularly in my left nostril (that's where the tube was placed). Of course, it might not have been the NG tube; general anesthesia has been known to cause disturbances in taste and smell as well. When I do have a sense of smell, it's of a strongly antiseptic solution. Practically anything that smells like anything to me right now - coffee, my dog, my own flatus (you knew I'd get there) smells like whatever it is that has then been doused in antiseptic. It's very weird.
So what? Big deal, right?
Well, without a sense of smell, the feeble messages sent by my 55-year old taste buds just don't wow my brain. Everything tastes blandly antiseptic if it tastes at all. Combine that lack of taste (I'm not talking about my fashion here so don't make your own jokes!) with the fact that my belly still has five puncture wounds and a 10cm incision that is healing externally and an anastomosis that is healing internally and I don't have much appetite. I need to eat though - adequate nutrition is important to promote wound healing. I can't very much at a time anymore either; I get full quickly and nauseated if I overeat (which probably would have been a healthy thing before my surgery) so I am probably taking in no more than half the amount of calories I would have before surgery.
It's a bit of a dilemma, this whole not eating much thing. I've lost a little over 5kg since the morning I went for surgery and while I "winter well" in the words of my favourite Irish comedian, my goal in having this surgery was to eliminate the threat to my existence, not get my beach bod ready fast. I need to eat well in order to heal - that's my mission.
I described the food I got in hospital to various people (okay, everyone) as "disgusting". I realize now that this may have been unfair. The food wasn't great - I'm not saying that - but maybe my lack of taste and the peculiar aroma everything has since my surgery also affects the foods and drinks that I normally enjoy. A nice, hand-made latte from our local coffee shop is almost completely devoid of flavour or aroma right now, which will be a real surprise to anyone who knows me (I was quite literally the poster child for Serious Coffee in 2010 and visited every one of their 27 locations at the time on my motorcycle). Delicious savoury soups that I use to go insane for smell only mildly intriguing.
All of this seems to be slowly changing though. I'm starting to notice the delicate nutty aroma of the espresso in my latte, hiding behind a more subtle antiseptic scent than it had a few days ago. Canned peaches are delicious now, rather than tasting like plastic. I had a very tasty turkey dinner soup for lunch yesterday that actually smelled and tasted pretty good. I'm not having any nausea as long as I eat smaller amounts of food, but I can eat more frequently to ensure I take in enough calories to support my recovery. It's pretty easy for me to imagine a world where my old love of food and drink has returned, even if I eat smaller portions than I used to.
Not surprisingly, the healing process from my surgery is another temporary adaptation I have had to make. I still have almost 40 SteriStrips across my incision and the five laparoscopy sites in my belly, but they can come off after 7-10 days. I could remove them now if I wanted, in other words, but there is no real reason to hasten their removal because they are not irritating my skin in any way. They will fall off on their own soon. And I don't need to do any more dressing changes because all of the puncture sites and the incision are well healed and not oozing.
I even wore blue jeans for the first time since my surgery yesterday. They didn't fit very well - even though I'm 5kg lighter than I was a week ago, I still have a fair amount of extra fluid in my belly - but I felt like a normal person wearing normal clothes!
Because of my wounds and the need to have dressings over my SteriStrips, I can only shower every other day. I used to shower every day, multiple times a day when I went to the gym. It feels really different to not shower on the day after my dressing changes. Now that I am not doing the dressing changes I can return to showering every day, so this is definitely one of the temporary changes in my life that will soon be forgotten.
Another thing that has changed is my bowel habit. I guess this is where I should insert my standard poop alert; if you are squeamish about poop or bowel habits, skip the next few paragraphs and go right to the heading "Life changing, not life ending." I won't take offence. If you're curious about what life without a rectum is like though, read on.
"You'll probably start to have bowel movements about post-op day 3 to 5," my surgeon told me when he told me I could go home. "It can get pretty wild, but try to avoid doing anything for them for at least 4 weeks. Then add some Metamucil before trying loperamide as a last resort."
This was Mark's way of reminding me about LAR syndrome, a cluster of changes in bowel habit after removal of the last part of the colon. I admit that I got myself a bit freaked out about it when I researched it before surgery; I like to ride motorcycles and go kayaking and fly airplanes, and none of these activities is really amenable to a sudden or frequent need to evacuate my bowels. A lot of the sites I viewed were 'open source', filled with horror stories from people who are experiencing LAR syndrome or at least say that they are (hey - it's the internet folks. Fake news is everywhere.), but there is at least a little medically curated evidence that all of the effort surgeons go to to avoid a colostomy doesn't translate into better patient outcomes and maybe it would be better to go straight to colostomy in most cases. But most of the healthcare-professional created, patient-centred pages I viewed (like this one) shared a consistent message; bowel function will start out highly changed from baseline (before surgery) but in the majority of cases will return to normal in as little as a few months and as long as a year. So... where does my experience lie?
My bowel habit has definitely changed. My stools are looser and much more frequent, I almost always have a mild sense of needing to go to the toilet, and when I do I don't produce very much poop at all. I never feel like I've emptied my bowels. Because I am pooping so frequently, my skin is getting irritated. I am developing hemorrhoids, which are something nobody wants but lots of people have and are relatively easily treated. Is this the dreaded LAR Syndrome that I had feared?
Short answer; yes. At least, it is my experience with LAR syndrome. But it's not really that bad. I'm learning the new signs of my need to poop and the new reality of how to poop without a rectum. (Long story short: don't overthink it or fight it.) And while I am pooping almost twice as frequently as I used to, now 3-4 times per day. I feel a degree of urgency, but it's not an overwhelming need to get anywhere NOW; I do seem to be able to stall within reason (up to about 30 minutes so far). This might not be enough for me to go kayaking for 4-6 hours, but as I get better at living in my new rectum-free world I am pretty confident that I can predict my pattern better and just schedule around it. And if not, then I can consider adding in Metamucil or occasionally adding in loperamide to controls symptoms on very special occasions. And I want to experience a lot more of those special occasions.
My niece is getting married in July. I don't have a lot of nieces and nephews, and this one is the last one to get married. She is beautiful and funny and sweet and quirky and I would get up from my deathbed to see her smile at her fiance and say those two incredibly powerful little words that will bind them together forever.
Would get up from my deathbed. But what if I didn't have to be on my deathbed at all? What if I could give the middle finger to that deathbed and not only dance at my niece's wedding, but at the wedding of her children in 30 years?
That's my target. 30 years out. And if I decided to just take my chances with my diagnosis, I would be falling into statistics that include things like five-year survival and ten-year survival. That's just not long enough out for me to see my goals met.
I want to see my grandchildren born, grow up, and become interesting and occasionally frustrating adults in their own right. I want to spoil them rotten, creating a whole wealth of problems for their parents in the process that will ultimately make both of them better people. I want to celebrate another thirty anniversaries with my amazing wife, seeing her beautiful smile and hearing her amazing, vibrant laugh. I want to go on so many more motorcycle trips with her, to drink so many more lattes with her, and to experience the beauty of this world together for decades to come.
If the price of admission to experience all of those wonderful things is that I have to pay a bit more attention to my bowel habit, I will pay it every time.
That's the other hand. My life has changed. It changed the moment my surgeon removed most of my rectum, 5cm or so on either side of the site of my tumour. I can remember a time before I was faced with the inevitable outcomes of this surgery, but they are in the past now. A day, a week, a year; I'm not sure that how far they are in the past is really a difference that matters. So in that respect my life has become this new experience; it seems like forever since I had my surgery. Even though it's just been a week.
One thing that has changed - rather weirdly - is my sense of smell and taste. During my surgery I had a nasogastric (NG) tube placed by my anesthesiologist as a precaution against aspirating. It's a common medical procedure that happens every day in virtually every hospital in the world. I have seen NG tubes in tiny premature babies and in patients who have already celebrated their hundredth birthday. It's no big deal really, yet I have a lingering lack of smell and taste, particularly in my left nostril (that's where the tube was placed). Of course, it might not have been the NG tube; general anesthesia has been known to cause disturbances in taste and smell as well. When I do have a sense of smell, it's of a strongly antiseptic solution. Practically anything that smells like anything to me right now - coffee, my dog, my own flatus (you knew I'd get there) smells like whatever it is that has then been doused in antiseptic. It's very weird.
So what? Big deal, right?
Well, without a sense of smell, the feeble messages sent by my 55-year old taste buds just don't wow my brain. Everything tastes blandly antiseptic if it tastes at all. Combine that lack of taste (I'm not talking about my fashion here so don't make your own jokes!) with the fact that my belly still has five puncture wounds and a 10cm incision that is healing externally and an anastomosis that is healing internally and I don't have much appetite. I need to eat though - adequate nutrition is important to promote wound healing. I can't very much at a time anymore either; I get full quickly and nauseated if I overeat (which probably would have been a healthy thing before my surgery) so I am probably taking in no more than half the amount of calories I would have before surgery.
It's a bit of a dilemma, this whole not eating much thing. I've lost a little over 5kg since the morning I went for surgery and while I "winter well" in the words of my favourite Irish comedian, my goal in having this surgery was to eliminate the threat to my existence, not get my beach bod ready fast. I need to eat well in order to heal - that's my mission.
I described the food I got in hospital to various people (okay, everyone) as "disgusting". I realize now that this may have been unfair. The food wasn't great - I'm not saying that - but maybe my lack of taste and the peculiar aroma everything has since my surgery also affects the foods and drinks that I normally enjoy. A nice, hand-made latte from our local coffee shop is almost completely devoid of flavour or aroma right now, which will be a real surprise to anyone who knows me (I was quite literally the poster child for Serious Coffee in 2010 and visited every one of their 27 locations at the time on my motorcycle). Delicious savoury soups that I use to go insane for smell only mildly intriguing.
All of this seems to be slowly changing though. I'm starting to notice the delicate nutty aroma of the espresso in my latte, hiding behind a more subtle antiseptic scent than it had a few days ago. Canned peaches are delicious now, rather than tasting like plastic. I had a very tasty turkey dinner soup for lunch yesterday that actually smelled and tasted pretty good. I'm not having any nausea as long as I eat smaller amounts of food, but I can eat more frequently to ensure I take in enough calories to support my recovery. It's pretty easy for me to imagine a world where my old love of food and drink has returned, even if I eat smaller portions than I used to.
Not surprisingly, the healing process from my surgery is another temporary adaptation I have had to make. I still have almost 40 SteriStrips across my incision and the five laparoscopy sites in my belly, but they can come off after 7-10 days. I could remove them now if I wanted, in other words, but there is no real reason to hasten their removal because they are not irritating my skin in any way. They will fall off on their own soon. And I don't need to do any more dressing changes because all of the puncture sites and the incision are well healed and not oozing.
I even wore blue jeans for the first time since my surgery yesterday. They didn't fit very well - even though I'm 5kg lighter than I was a week ago, I still have a fair amount of extra fluid in my belly - but I felt like a normal person wearing normal clothes!
Because of my wounds and the need to have dressings over my SteriStrips, I can only shower every other day. I used to shower every day, multiple times a day when I went to the gym. It feels really different to not shower on the day after my dressing changes. Now that I am not doing the dressing changes I can return to showering every day, so this is definitely one of the temporary changes in my life that will soon be forgotten.
Another thing that has changed is my bowel habit. I guess this is where I should insert my standard poop alert; if you are squeamish about poop or bowel habits, skip the next few paragraphs and go right to the heading "Life changing, not life ending." I won't take offence. If you're curious about what life without a rectum is like though, read on.
"You'll probably start to have bowel movements about post-op day 3 to 5," my surgeon told me when he told me I could go home. "It can get pretty wild, but try to avoid doing anything for them for at least 4 weeks. Then add some Metamucil before trying loperamide as a last resort."
This was Mark's way of reminding me about LAR syndrome, a cluster of changes in bowel habit after removal of the last part of the colon. I admit that I got myself a bit freaked out about it when I researched it before surgery; I like to ride motorcycles and go kayaking and fly airplanes, and none of these activities is really amenable to a sudden or frequent need to evacuate my bowels. A lot of the sites I viewed were 'open source', filled with horror stories from people who are experiencing LAR syndrome or at least say that they are (hey - it's the internet folks. Fake news is everywhere.), but there is at least a little medically curated evidence that all of the effort surgeons go to to avoid a colostomy doesn't translate into better patient outcomes and maybe it would be better to go straight to colostomy in most cases. But most of the healthcare-professional created, patient-centred pages I viewed (like this one) shared a consistent message; bowel function will start out highly changed from baseline (before surgery) but in the majority of cases will return to normal in as little as a few months and as long as a year. So... where does my experience lie?
My bowel habit has definitely changed. My stools are looser and much more frequent, I almost always have a mild sense of needing to go to the toilet, and when I do I don't produce very much poop at all. I never feel like I've emptied my bowels. Because I am pooping so frequently, my skin is getting irritated. I am developing hemorrhoids, which are something nobody wants but lots of people have and are relatively easily treated. Is this the dreaded LAR Syndrome that I had feared?
Short answer; yes. At least, it is my experience with LAR syndrome. But it's not really that bad. I'm learning the new signs of my need to poop and the new reality of how to poop without a rectum. (Long story short: don't overthink it or fight it.) And while I am pooping almost twice as frequently as I used to, now 3-4 times per day. I feel a degree of urgency, but it's not an overwhelming need to get anywhere NOW; I do seem to be able to stall within reason (up to about 30 minutes so far). This might not be enough for me to go kayaking for 4-6 hours, but as I get better at living in my new rectum-free world I am pretty confident that I can predict my pattern better and just schedule around it. And if not, then I can consider adding in Metamucil or occasionally adding in loperamide to controls symptoms on very special occasions. And I want to experience a lot more of those special occasions.
"Life changing, not life ending."
That's how I've described my diagnosis to a lot of people. I truly believe it too - every word of it. This diagnosis will not kill me, but it will and already has changed my life. It changes the way I perceive things; do I choose to see beauty or do I choose to see sorrow? It changes how upset I get about things that really shouldn't matter much. "People, not things," is a common thing I say as well lately; I care much more about the people around me than the things that they offer or the things that I have in my house. And then there's those special occasions.My niece is getting married in July. I don't have a lot of nieces and nephews, and this one is the last one to get married. She is beautiful and funny and sweet and quirky and I would get up from my deathbed to see her smile at her fiance and say those two incredibly powerful little words that will bind them together forever.
Would get up from my deathbed. But what if I didn't have to be on my deathbed at all? What if I could give the middle finger to that deathbed and not only dance at my niece's wedding, but at the wedding of her children in 30 years?
That's my target. 30 years out. And if I decided to just take my chances with my diagnosis, I would be falling into statistics that include things like five-year survival and ten-year survival. That's just not long enough out for me to see my goals met.
I want to see my grandchildren born, grow up, and become interesting and occasionally frustrating adults in their own right. I want to spoil them rotten, creating a whole wealth of problems for their parents in the process that will ultimately make both of them better people. I want to celebrate another thirty anniversaries with my amazing wife, seeing her beautiful smile and hearing her amazing, vibrant laugh. I want to go on so many more motorcycle trips with her, to drink so many more lattes with her, and to experience the beauty of this world together for decades to come.
If the price of admission to experience all of those wonderful things is that I have to pay a bit more attention to my bowel habit, I will pay it every time.
I’m glad some of your smell/taste is returning. I know it was frustrating you that coffee no longer smelled good. Can’t wait to dance with you at the wedding, baby brother! Love you!
ReplyDeleteI love reading your observations and thoughts, John-Jeff. I have zero doubt that you will dance at the wedding and see grandchildren and 'great'children. Hugs!
ReplyDeleteXOXOXOX Jude