Oct 25, 2017 | Cancer, Healing, Mostly Me |
Last Friday I mentioned on Facebook about going in for a scope…
Going in… I already knew that the results would at least show that I’d be needing some stretching around the area where they connected my old and new esophagus… or behind my collarbone… but lately my swallowing has slowly become more and more of a struggle…
Those who know me and my backstory know that my ability to swallow has been quite a rollercoaster for years… and although I’ve had it worse …a lot worse… than right now… it’s been going pretty good for the past couple of years compared to what it was before the esophagectomy…
Anyway… last Friday… I was told I would be hearing from them in 2 to 3 days… and today was the 3rd working day… UHM… the call came… and since I don’t speak on the phone… Sunna talked to them…
Yes, there is a narrowing…. but it needs “further testing”… during the scope they took a sample/biopsy… They actually didn’t mention that to me at the time… or not as I can remember anyway… Sunna knew about it though… but that explains the soreness for sure… but that will take 8 more days!
Although they told Sunna not to “jump to conclusions” this isn’t what I needed on top on my already sky high anxiety lately… but for a while now… even before that scope… I’ve been having dreams/nightmares about cancer being back… I know that… especially for those of us who have fought the beast… the fear never goes away…
I know that wondering if the results will not be positive wont help… but I can not afford any more of this… I don’t want any more of it! My time is already running out as it is and I refuse to have that time spent with extra hospital time and doctor’s appointments
Life is supposed to be a well-illustrated book, bound neatly between two covers…. with the ink of its poetry spilling off every page… A life is supposed to be a story… and a story is supposed to have a beginning, a middle, and an end… For some of us there are chapters where life is hard…. For most… those chapters lead to other brighter chapters …chapters of some sort of triumph… some sort of revelation… a better life… I can not say every chapter in my book is filled with darkness ….even if it sure has felt like it sometimes… I know there are some pretty bright and uplifting moments in many of them… I also know that I often feel that even though I have felt genuine happiness… it’s like my state of mind… or state of entire being…. is unable to keep that feeling long enough…. There is always that fear….. Lingering in the back of my head…. A voice telling me to be careful whenever life feels ‘safe’….
I honestly don’t know though…. I wish I had an extra super charge power that could help me fight my own brain…. To stop the fear…. To silence the voices… to keep it clear of nonsense…. And above all… keep it clear and focused enough for me to do all the things *I have* to do before it’s too late…
If you’ve read this far…. I apologize for these incoherent “free-flow” ramblings… but they are all I have to give right now…. Thank you for being you <3
And… even though I know you mean well… please respect my wishes: Keep all religious comments of any kind to yourself…. My mind can not deal with those at all right now….
May 18, 2017 | Mostly Me |
You wake up from a nightmare in the middle of the night… and it takes you awhile to catch your breath and to realize it was only a bad dream…
You try to go back to sleep thinking: – “It could be worse” – It’s not really happening…. none of it!
….but the scenes and voices from the nightmare won’t leave you alone….
You debate in your head weather or not to wake up your best friend who is sleeping beside you…
Finally you do “what’s right” and you wake her up… and tell her the code word… There is no need to explain it any further as she knows what it means…
She gets up and gets you something that will help you relax. You can’t get it yourself because you are hooked up to two machines that pump life into your body…
With in a few minutes you are fast asleep again…
It’s morning when you wake up again… A new day…
Mar 8, 2017 | Healing, Mostly Me, piano |
Way back in September last year… I posted a video on my Facebook account where I played a song on my piano which I dedicated to my mother’s memory… Sometimes I share my videos in a few groups that I’m a member of and that is what I did this time… I know this particular song is of very high sentimental… as well as emotional value to a lot of people… and yes… I agree that it is indeed a beautiful piece of music…
Yet… I wasn’t sure if I should share it or not… or even whether I should post it at all… It wasn’t about if I thought people wouldn’t like it or not… or anything of that sort… It was way more personal than that… and more for my own mental safety and the effect it might have on my own emotional well being which was…and still is… at a quite vulnerable state these days.
But of course I didn’t listen to my own feelings so I ended up sharing it… knowing very well that it would stir up some unfavorable thoughts in my mind… Of course I would rather have that than missing a chance to prevent even a one soul out there from feeling at peace through my music…
The song was Amazing Grace…
A couple of days after posting that song… maybe even the day after… I sat down and attempted to write about why …or at least… how this …and almost anything connected to god or Christianity affects me… but …maybe due to my own spontaneous …or even… involuntary reactions I hit a wrong button on my computer and all was lost…
I want to give it another try…
I want to give it another try because lately I keep finding myself having to explain as for some reason people won’t stop to a simple no… or to the extreme… send me messages attempting to explain how wrong I am for “denying their god” …or the classic… “You are going to hell” remark… I hope most of you get the picture…
I do have my reasons for having to avoid this subject… reasons that I cannot yet fully write or share without jeopardizing my mental stability… or without pushing myself off the edge of an already weak mental state…
When I tell someone… especially if that someone has strong religious believes him/herself that you don’t believe in God or that you have different opinions about the Bible …they often automatically assume you are somehow a bad person… or they will try to ‘save’ you …even attempt to scare you into believing in their version of god…
…so here I am again… attempting to write about the very one thing that will usually bring up unwanted emotions… a strong collection of emotions where my brain runs off into the darkest corners of my childhood memories… Where I can hear the voice of my mother talking to her god… and where I can physically feel the pain on my 51 year old body… the same pain I felt as a child …while being tortured…
People who truly know me… family mostly… know that I try to avoid the subject of religion and anything that has to do with believing in god… or a higher power… They are also the people that respect my opinions on the subject and if… on that rare occasion… it comes up in a conversation or in life …like a christening or even a church wedding… or something of that sort… I am able to ask to be excused if I feel so… and they also know that a funeral isn’t in the picture either…
Holidays like Christmas or Easter is a mental struggle as well but my wife and close family has helped me by making new traditions and turning these holidays into non religious family time…
They know that everything I have ever accomplished or survived through was done with my sheer determination of getting through it… I won’t say this determination has always led to the best results in every situation… but …it is what it is… and it is indeed what has kept me alive… multiple times in my lifetime… and so far it is what works for me…
With that said… I do have my own personal spiritual beliefs… but without a god or a higher power… or a power that is higher or more powerful than exists in me… In many cases I don’t feel a need to find a solution to everything… I don’t really feel the need to wonder about where I will be going after this life… I don’t need to know why I have had to go through all of what I have been through… and I don’t need to know why my mother and my children had to die in that fire 24 years ago…
I try to use the phrase “I want to believe…” rather than “I believe…”
Yes I do want to believe my children are together… I want to believe that “souls” are connected… not just through this life but in other unknown dimensions as well… I want to believe I have known my wife for a very long time… much longer than those almost 32 years we’ve known each other in this lifetime… And I know we will continue to know each other when we leave here… That is one thing that makes me feel at peace… It helps me to accept the fact that neither of us will live forever… I don’t fear my own death… never have… but I do fear the death of my wife… any of my children… or anyone close to me… or … maybe in a selfish way… I fear my potential reactions… if any one of them should go before I do…
…and yes I want to believe that my loved ones are somewhere where I can join them one day… and sometimes I do truly believe that… but it’s not “heaven” or anything in that sense… However those kind of thoughts are not something that I want to spend hours wondering about as I know there is no real physical evidence of that anyway… There is no solid proof… and maybe the only way for me to find out is to kick the bucket and check it out… and that’s not on my list of plans …for now at least…
When I think about it this is what has helped me with the hallucinations… the need to be able to have a solid proof for everything… I know very well there are things in life you cannot find an explanation for… and that’s where most people turn to religion… Where knowledge ends religion takes over… but for me… I don’t know… It feels like a waste of time to try to figure out an explanation of everything… I don’t know why I had to go through my childhood the way I did… I don’t know why my children had to die…
Yes sure… in the past I have spent time trying to find a “reason”… and used the most obvious one to me at the time… it being what I was taught as a child… that it was because I was evil and I wasn’t in enough physical pain to control it…
Many people jump to the conclusion that my disbelief was brought on by the death of my children… In a way that’s understandable as it’s not uncommon for those who believe in god question their faith when a child dies…
But in my case it’s not really about my children dying… but it goes much further than that… most…if not all of it to my childhood… While I know now that my mother was wrong in what she believed about me… Some things are just not that easy to shake…
There is a lot that I have accomplished through therapy over the years… I have learned ways to deal with my mind… How to keep my “inner demons” from destroying me… Some I’ve managed to get rid of for good… but some I have locked in a cage inside of me… Sometimes they can break the lock so to speak and poison my thoughts…
I know I can’t fully explain how this… religion or god… affects me… I don’t think I can fully understand it myself… but if I did… I’m sure I probably wouldn’t be struggling with it the way I do sometimes…
Although I know people mean well when they tell me they are praying for me… I sometimes struggle with the very thought of it… Sometimes I struggle with a simple word someone puts down as a comment on my writing… or a comment on a status on my Facebook page… I can just ignore it on a good day…or at least my trigger threshold is higher…
Some days I have to stay away from those while I get myself to calm down from my out of control short circuiting brain… but I know I cannot hide inside a bubble to avoid this to ‘get to me’… and I don’t expect people to give up what they believe in… for me however… I find myself scroll away from that kind of posts… even with the smallest reference…
Yes… It’s a childhood/abuse thing … has to do with my mother… things she said… and did… to me… It triggers …not just memories… but more like feeling or emotions… something that I can not control… It triggers fear to a point of an anxiety attack… even visions of being a child again… being tortured by her… and when the vision is gone… a very strong need for me to hurt myself…
I grew up with both parents believing in god and reading from the bible… and making me reading from the bible… I had an ugly childhood… and yes… their religion… or their fear of their god… especially my mother’s was a large part of that ugliness… and while she physically tortured me …in the name of her god… quoting the bible…
The very simple explanation is… evil versus good… and her words… evil must suffer so it can be controlled…
…but of course there is a LOT more to it than that… yeah PTSD… and probably a bit of brainwashing too… and maybe a fear of a higher power ruling me… controlling me… I don’t want a higher power or something more powerful than the power I have in me…
She believed I was evil…she made me believe I was evil… Son of Satan… She prayed…she said God told her to torture me… to control my “evil mind”… Yes I know this was her mental illness… maybe even a part of my own mental illness…
Almost every day of my life until 10 years ago I wanted to die… and that feeling grew worse and worse… Although I did believe my mother about the ‘curse’ and that it would only go to someone else if I’d died… I didn’t care about that anymore… I wanted it to end for me… I struggled with the thought of it for almost two years though… of course I’d had thoughts like that before… even made a few “spur of the moment” attempts… This was different… and needed a careful planning… But when it was “too late”… I changed my mind… I only needed one second… or a part of a second to change my mind… Of wanting to live… and to be able to see my children grow up and have children of their own… and that split second… Just before passing out… the will to live took over…
I don‘t know if any of you are familiar with the word „trigger“ or „flashback“… but I sure am… And religion, especially when it is directed at me directly it is a trigger for me… as I mentioned earlier… I can actually physically feel and hear my mother torturing me…
I have my reasons for not wanting or needing a god… I hate the fact that people cannot seem to accept that… I can accept that other people believe… but please… when I specifically ask for no „prayers“ it’s NOT because I hate your religion or anything of that sort… and if you for any reason feel offended by the fact that I dare to say that out loud to protect my own well being… then I’d rather you’d just keep it to yourself and stay out of my way…
I know this is long… I know I’m going in circles… If you have read through the whole thing… If you read through this and I have in some way offended you… then by all mean feel free to silently walk away… Either way… I appreciate you taking the time…
Dec 31, 2016 | Mostly Me |
On my last entry…. I talked things over with my wife… but she is more alert at my appointments than I am… I know I can quit the chemo anytime… and I know they won’t make me go through anything that would cause more harm than good…
People tell me I am “in touch with my inner emotions”… at times I feel like I’m a big cry baby though lol but I know that with everything that I have been through in my life I could have ended up as an angry bitter man (maybe I will be one day) but I kept ‘things in’ for the first 30/35 years or more of my life….
I learned very early to keep quiet …and smile… no matter what… to lie about how I was feeling or thinking if I had to… but then eventually I started having nightmares… I was unable to sleep… it kind of took its toll on me mentally and physically… and I couldn’t hide it any longer…
My dad didn’t exactly approve of that… especially when he found out I was blogging about my mental illness and the abuse I went through on the internet and tried to shut me up… I almost did what he wanted… I didn’t though… I know by being open about it I have not only helped myself but many others who have been through similar experiences and that is why I don’t hide anymore… Yes sure… I don’t talk about “everything”… but details aren’t always the best way to get the message across to others or to help calm my own piece of mind…
I know people see my as strong… yes I haven’t had an easy life… in fact I’ve been through more than most… yet I don’t feel strong… all I did was doing what I had to do in order to go on alive…
I grew up with a mentally ill mother…. psychotic and delusional… she tortured me… physically and emotionally to fulfill her delusions… she did it until the day she died… 1992… I was 26… I was too scared to run…. or tell anyone… even my wife… but I already had a family back then…
My father was away a lot… and if he was at home he was in his office …working… and closing his eyes of what was going on…. I know he knew… He should have been the one to save me… but he didn’t…. I did get a chance to talk to him about it before he died… but he still felt he had done the right thing and I was just ‘over reacting’… Having a mental illness in his eyes was something to be ashamed about… it needed to be kept quiet…
I know I have a problem with anxiety…. overthinking and anticipating the worst… I know my brain is wired to run from scary situations… PTSD does that to you…. and I know I blow things up in my head …way more than needed…
One thing that works for me is to ‘dump’ my thoughts like that… kind of makes them more clear in my mind and easier for me to sort them out… if that makes sense… I know from past experiences… the best way for me to get through this is to take it one day at the time… to not let the ‘bad’ thoughts in and be positive…. in fact it’s the only way…
As a compliment…people tell me I am “in touch with my inner emotions”… at times I feel like I’m a big cry baby though lol …this time included…. but I know that with everything that I have been through in my life I could have ended up as an angry bitter man (maybe I will be one day) but…. I kept ‘things in’ for the first 30/35 years or more of my life….
Sep 3, 2016 | Cancer, Mostly Me |
Surgery date is set…. Monday September 26th… Removal of my bladder… I will be going in on the previous Friday… maybe even Thursday or sooner… It will all depend on my health at the time… and of course… This could change if they believe I am not fit enough to even go through the surgery….
I have lots of appointments to go to until then….
This whole thing is more real now than it was before…. I realize the surgery is going to be difficult on my body… Although the esophagectomy a year ago wasn’t an easy one… in fact I’m still recovering from it…. I was healthier in so many ways….
There is great a chance something may go wrong… and to be honest…. for me… now it doesn’t have to be something ‘big’… I also know that even if I won’t have the surgery… I’d still have cancer and other forms of treatments which my doctors tell me can be even worse for my body… will take a long time… less chance of being successful… and may even eventually lead to needing surgery anyway… which at that point I would probably not be strong enough for at that point …. so simply put…. my best option is doing it now or not….
My anxiety has been through the roof all day…. I won’t deny that…
I’ve never truly believed people who say I am strong… or say that I am their inspiration ….maybe because the first 27 years of my life i was broken down by the person who should have done the opposite…. or maybe….with all that I have been through to this day I have felt weak and afraid… It’s funny…. A couple of days ago I posted photos of my belly on my wall… I also posted them in a few groups I’m in…. stoma groups… bladder cancer…etc. I didn’t expect the reaction i had…far from it… I didn’t really expect any type of reaction tho… or think about it at the time… but reading the comments made me feel stronger… It made me realize that people… not just my family…. wife…kids… granddaughter…. but people I will probably never meet in person…. need me to be around ….I feel weird for even admitting it to myself…
Yes I am terrified of something going wrong…. and that i wont make it …. but I’m going to do everything that I can to keep my heartbeat going through all of this… that I can promise you… and I know that even though my body isn’t very strong I’m a lot stronger mentally now than I was a year ago…. but ….for the time i have until the surgery I want to spend as much time with my family as I can… and focus on what is to me… the most important in my life… my family… my writing and my music… I’m not going far though… I’ll still be around… and probably sharing a video or two… but i may not be around as much as I have though…
I know this is random… its me …uncut… and uncensored… which right now is the best i can do…
Just one more thing…. YOU are amazing… stay strong …it’s the only way to do it!
Aug 31, 2016 | Mostly Me |
I’ve been meaning to write something to post for a while now…. I know I have been slacking and turning more and more towards my Facebook account…. I’d still like to keep this website though I don’t know how much I will be posting here in the upcoming months … If you’re not my “Facebook friend” feel free to look me up and add me… most likely I will add you (unless you have porn or hate messages on your profile)
I have a feeling this post will be all over the place and rather long… but in short… this month has been hell… Not that it has ever been easy in the past especially since the fire… but the previous month is usually when my mind (and body) starts to show all sorts of unusual thoughts and mental and physical reactions to everyday things… Because you know about the upcoming anniversary… and you’ve been through it before many times in the past… you stop paying attention to those symptoms…
On August the 6th I ended up in hospital after collapsing on the floor and hitting my head on the way…
I had been having some pain in my back… which isn’t that unusual anyway… I’d been feeling light headed and my vision was a bit more blurry than usual… a bit more tired… but blaming it on stress and upcoming anniversary was easy. And when your body is constantly giving you pain and all sorts of discomfort at any normal day… you stop paying attention to the little ‘just discomforting’ things…
In the hospital it turned out I had an infection in my blood… and when they asked me for a urine sample it was soon clear that nothing was coming out of there… I was sent for a ultrasound (like they do with the pregnant mommies)… It turned out my bladder was full (and then some) and one of my kidneys was a little swollen… It also turned out that my prostate was also a part of problem (which it had been before all this) but because my kidneys are not exactly top notch they consulted with my regular doc and made the delicious to remove my prostate… Problem solved right?
No not really… Catheter out… but right back in again… apparently my urethra decided to go on a strike… Nice huh? Further testing done by putting a camera up my plumbing and voila! Bad guys blocking the output from my bladder… Doc took a few of them with his tool to identify them…. That was on the following Thursday or Friday… They wanted to keep me in for longer but I explained I needed to be home before Tuesday the 16th which was the 24th anniversary of the fire and I needed to be home both for me and for my wife….
So they sent me home… but with a tube in my bladder and a bag attached to my leg… and it looks like I will have to wear this new accessory for a while…
The anniversary came and went with a vengeance for the both of us… Although… not knowing what was going on with my body was taking its toll on me but it was taking much more from my wife… and still is… I do understand her…. She has almost lost me a few times and that alone is not helping ….
On the 17th we got the call… Results were ready… Bad news… cancer again…. this time… bladder cancer… Good news it is at an early stage and only on the inner layers of my bladder… T1G2… “Superficial” they said… serious and unfortunate… and yes quite frightening… but the description… Superficial… not too scary… And my survival instinct telling me this will turn out OK…
The following week I was back in the hospital for a procedure they call TURBT or Trans-urethral Resection of a Bladder Tumor… where they put a medical instrument in my bladder through the urethra to remove the cancer… This was August 24th…
During the TURBT they discovered that the cancer had grown into the muscle layer of my bladder… Which means that my “superficial” was now “invasive”… And that I can tell you… was quite a lot scarier than before… Although I’m currently still waiting for the final biopsy report… the cancer is now T2G3… even T3… but even so… My best option according to my medical team is now surgery to remove my bladder and possibly followed by chemotherapy….
This last surgery and then the TURBT procedure have left me with very low energy… After both procedures I was very dehydrated… And now they have me on IV fluids and feedings for 24 hours a day… I’m still working up my energy… But it’s coming more closer to normal with each day that passes… I know I will need to build up my energy for the upcoming surgery and try to figure out ways to have my body slow down my digestion so it can actually use all or more of the good stuff from my feeding formula and the oral meals… I will need that good stuff in this upcoming battle… for sure…
Although I admit… mentally and physically I am in desperate need of a break from all of this shit… If anything… at least not another cancer battle… I’m still recovering from my last one… damn it!
I had a surgery planned in September/October which if successful it would make my life easier as far as eating and/or drinking liquids… which I cannot at the moment… Even though I had (still have) some major anxiety about that one… I have been waiting for it… and wanting it… because… if successful… it is/was suppose to improve my swallowing… so yeah this whole things sucks…
But that surgery has been put on hold for now… Again… Last year it was also postponed …and also because of cancer…
My wife was told I had 1% or less of survival the first 3 months after my attempt… This was 10 years ago next October and I’m still here… Before that I was “beyond repair” mentally… Those were actual words of a mental health professional… I should mention we never saw that bastard again… but although I’m not cured mentally and never will… I’ve come very a long way since then…
I won’t deny that I’ve had some moments of just wanting to just ignore all of this shit and just let it “take me”… but I guess one has to try to make the best out of the situation and give it a try…. I know the surgery isn’t going to be easy on my body… it’s a long and complicated surgery…. I won’t have to go through the whole “get used to the bag” process though as it’s very similar to the one I already have… I know there are new things to learn but it’s not going to be as difficult as getting a bag for the first time… If my body can tolerate the surgery and the chemo… I can live with the rest… However… I feel I am desperately in a need of a brake… I know I can’t take time off… not for a while… so… the fight continues!
Aug 28, 2016 | Mostly Me |
This isn’t exactly on topic but I need to vent … So far this month has been hell… Starting with my usual craziness when it’s close to the time I get my medication…. I have schizophrenia and I get a shot once a month …or every 28 days for my mental disorder and sometimes my body somehow absorbs it too fast or something… In between I’m pretty normal though I think …or most of the time…
Then on the 6th I ended up in hospital… Another collapsing on the floor and hitting my head on the way… Turned out my prostate was blocking my urethra and swelling up my kidneys and because my kidneys are not exactly top notch they consulted with my regular doc and made the delicious to remove my prostate…. Problem solved right? No not really… No peeing naturally for me for now … Nice huh? Further testing done by putting a camera up my pluming and voila! Bad guys blocking the output from my bladder… Doc took a few of them with his tool to identify them…. That was on the following Thursday or Friday… They wanted to keep me in for longer but I explained I needed to be home before Tuesday the 16th which was the 24th anniversary of the fire where my four children got their wings… I needed to be home both for me and for my wife…. So they sent me home …but with a tube in my bladder and a bag attached to my leg… and it looks like I will have to wear my new accessory for a while….
The anniversary came and went with a vengeance for the both of us… Although…not knowing what was going on with my body was taking its toll on me but it was taking much more from my wife… and still is… I do understand her…. She has almost lost me a few times and that alone is not helping ….
On the 17th we got the call…. Results were ready…. Bad news…. bladder cancer…. Good news it is at an early stage and only in my bladder… but I have what they call Carcinoma in situ… stage 1 but they say its a fast growing type… obviously a minus point…. But yet doc is hopeful none the less…and that works for me…. but not so well with my wife…
Now the plan is to attempt to take out the cancer next week and then marinade the inside of my bladder with cancer poison… right now I can’t remember the name of the medicine they plan on using though…
This is the second time they find cancer in me but last year…almost exactly a year ago… they found cancer in my esophagus during a procedure while attempting to dilate my esophagus… But my esophagus was really just one big scar top down from an ugly mental incident 10 years ago…. and where I had 1% chance of surviving the first 3 to 5 months
That was only a very small tumor… not really a tumor tho…but more like just a few ‘bad’ cells (SCC) localized in scar tissue which i had plenty off in there… before my diagnosis it was clear i would need an esophagectomy… sooner than later… and the cancer gave my insurance the push that i needed to get that surgery… I had the surgery in September 2015 and no chemo or radiation needed…. With this new one…. they seem to think that these two cancers are not related….
I’m remarkably calm about all of this… I keep telling my wife I’m going to be ok… She has been caring for me a lot more than I have for her…. and most of the time she knows me a lot better than I do myself…especially with my mental illness… Now all she does is crying… Maybe a few brief moments where she’s not …but she looks at me and cries… I give her a hug and she cries… She keeps repeating that she can’t live without me… I try to tell her I’m not going anywhere… I try to talk to her… Reassure her… But she still cries…. It’s braking me… I am not going to die…. I’ve been through much worse than this … much more pain than I will ever feel this time around… so compared to that this is a walk in the park… she knows that….
Sorry about this long rambly thing… My wife is sleeping now… but I can judge by her breathing and tossing and turning… she’s not sleeping very well… I should try to be as close to her as I can and try to sleep too…
Aug 5, 2016 | EC Surgery 2015, Healing, Mostly Me |
Today is just one of those days where I have a lot to say… but can’t say anything at all… tomorrow may be different… but no guarantee… this time of the year is always difficult… not just for me… but for my wife too…
My mind is being out of control and all over the place…. Has been for a few days now…. In a way it’s not unusual especially around the time of my shot… and also with all of what’s going on around here…. Like I said…. Just “one of those days”…. However I know it doesn’t give me the right to be a crazy ass hole ….which is kind of how I feel I’ve been lately… if I’m not grumpy… I’m overly emotional…. And probably way too self centered and or feeling sorry for myself…
I had a doc appt this morning… not really news as there’s always something…. Some may know that I have a surgery planned in the beginning of October as I may have mentioned it on my page…. This surgery was originally planned last year but getting a cancer diagnosis kind of put that plan on hold for a while….
Because of an “event” in 2006 I have had multiple problems with my mouth and throat…. especially with eating and swallowing and food going down the wrong pipe…. My esophagus and stomach were also affected but as you might know they are out of the picture since my esophagectomy….
Now with this upcoming surgery they are mostly going to be cutting away lots of scar tissue and/or doing reconstructional work… I can’t really explain how or what but it involves my epiglottis, my vocal cords among other things… as well as possibly using tissue from my left leg/thigh to build up where needed… Sounds all good and dandy… maybe…. but the surgeon says they cannot “promise anything” until they do this… and that to me is sort of what makes me want to skip the whole thing…. Not to mention having to go through a recovery… possible complications….
Not sure where I’m going with this though…. In a way I need some reassurance or mental support… and maybe… although It’s probably different when cancer is involved… which it isn’t really in my case…. to know if there is anyone out there who has gone through something like this… the surgery… the recovery ugh anything ….
For now I’ll just send good vibes out there to anyone that may need it…
I keep repeating to myself…. This is going to be OK…. This is just one of those days…. But I know I need to be there for my wife as well… August is a month where both of us struggle with… We could use some too but I ask since my mind is not in a good place… please leave religion out of it for now….
Jul 13, 2016 | Mostly Me |
This isn’t really a proper post but it’s been a while since I’ve posted anything here…
As some of you know I have been spending my “me time” working on my memoirs and other more important “life” things…
I admit though… I have also been making some changes to this website… adding new things here and there and while at it learning… or re-learning a lot of the things I used to be quite good at back in the day… but has changes so much since then… – The HTML/CSS and the design part of having a website…
I have added something that I started working on over a year ago… A few pages with small bits from my story… I am still working on those BTW but I thought it is ready enough to be put “out there”… I thought… The harsh reality is that I never know when my light goes out… 😉
This morning I had a doc appointment with a surgeon who is going to attempt a surgery on my throat… which may (or not) help me with my swallowing… This surgery was planned last year October/November but plans change when you get Cancer to deal with so it was put on hold…
I am in a very weird mood today though… my night wasn’t the best… Nightmare stuff… and having loads of post-surgery pain… and lately I feel like my brain is getting even more messy than it has been before… and it literally feels like it’s short circuiting sometime…
EDITED TO ADD: I forgot but here is a link to that new section of my website… I warn you though it’s long and it’s ugly… but it is what made me ME
Jun 11, 2016 | Healing, Mostly Me, Tummy tales |
Well… everything is first!
For those who don’t know I lost my colon in 2004 and therefore I have an ileostomy…. It basically means I don’t poop the usual way but my ‘waste’ is collected into a bag stuck on my belly….
Sometimes… unfortunately I have problems with my stoma… nothing big though… but I’ve been dealing with leaks which have caused the skin around my stoma to brake and because of it the bag won’t stick properly… which again… causes more leaks… so I have to take care of this whole thing very carefully so it will heal… Not much to say about that really except… this morning my wife and I went to the mall… We had to be there a little longer than we originally planned …no big deal really as I always have an emergency bag in the car with extra set of cloths and everything needed for my stoma care and more … and of course my poop decided to go the wrong way … again no big deal… shit happens 
So after getting the emergency bag…. I go to the mall’s public toilets… they are actually very nice… but the normal stalls in the men’s room are small… and really not much space to change your clothes or do much of anything other than do your normal thing This is why I normally use the disabled bathrooms… I do have a special card I can wave around if I need to… but I’ve never really had to do that before… nor have I really had any problems or ‘looks’ in the past….
Obviously someone got up on the wrong side of the bed this morning… As my wife and I were walking through the door… inside the bathroom… a woman… maybe in her sixties… shouts up at us… and starts ranting about ‘perfectly healthy people using things that belong to the disabled’ such as toilets, parking spaces and getting disability payments from the government… but this has actually been on the media here a lot recently…
My wife calmly smiled and told her she agreed and wished her a good day… and that was really the end of it… except my mouse heart was beating like crazy….
I know I don’t look sick… or seem disabled (unless maybe when I speak)…. It’s a message never spoken too often…. There are a lot of us out there….
