"New Me" is unacceptable
Yes I do take this "new Me" crap personally. So I failed to do my research and pretty much laid on my back bared my neck and allowed others to take charge of treating my cancer.
Hell, at 62 I'd lived a good full life and didn't particularly care if death was at hand. It's a New Yorker Thing from my youth I think.
But now I'm facing whatever the rest of my life is with week after week of Side Effects "They" glossed over or sometimes simply "neglected" to mention.
Let's be real-using the term THEY is an excuse for ME not having done my research and taken a proactive stance on a treatment that could redefine the rest of my life!
I now realize that the "rest of my life" might be a long time and that I don't care to be a "New Me". This Woody Neck, lack of stamina, paranoia (where any cough, any ache, any weakness sets off "CANCER! CANCER!" Alarms) is not the Joe I will accept.
So I've found some alternative way to fight the returned cancer. Will it work? I know Radiation/Chemo didn't. And the side effects-the inability to swallow, Aspirating and accompanying lung issues, lymphoedema, fibrosis, muscular atrophy and blah blah is too stiff a price to pay. But I'm slowly beating each.
So yeah, I want the Old Me back.
So far I am winning. The Swallowing battles. The lymphoedema battle (funny I never thought myself as particularly handsome-but a sight better than the Half Moon faced stranger I grew tired of seeing in the mirror!). The Inability to Gain Weight issue. The fatigue issue and its accompanying Lack of Motivation brother (reason why I won't touch any Hemp oil products for pain). And, Oh, did I mention pain? Thank God I found a way to beat ED just before going into Chemo/Radio Alley
I'm winning by researching each little side effect and trying what might work until I come across something that does. I'm winning because in the worse of times it hasn't been bad enough to run to the hospital and signed over another piece of my mortgage.
I'm winning because each day I look and feel a little better ...sure, a little older and a bit more worn, perhaps, and yes there's Good Days and Bad Days-but I've taken control of defining Me...not a "New Me" but the Best Me I'm capable of becoming.
Do your research. Be the Best You you can be.
Mate, I've been following you for a while. I've been reading your story and tracking how you are going.
You're a survivor. FWIW, that's a badge of honour.
Everybody deals with such sudden, large, life changing experiences differently. I think that it's really a personal way of how we deal with this. I'm not sure that there's a right or a wrong way of getting through it. Just a "what's the right way for me" and a "how the f^#k am I going to get through this?".
Some times we make decisions that, perhaps, we should have thought about a bit more.
I've been there. I've done that. I was in my 20's and it changed my life irrevocably forever.
It was at this point that I started to take the attitude of, well, this has happened, but how can I be better than I was before? Why limit myself to only getting back to normal. So I tried to turn the situation around. It's not always possible, but if I fail, at least I know that I tried. And I'll probably learn something about myself in the process.
This sounds like what you are doing, we're just using different ways to get try and get to the same place.
Keep us updated mate.
I couldn't have said it better...what I'm finding (now that I've gone pretty much Alternative in my approach to cancer and treatment side effects) is that I'm really enjoying the challenge as much as the work involve researching.
There's still the bad days and the not so enjoyable dead ends (my God looks like you can't chew gum without experiencing a side effect sometimes!) But all in all winning some little battles, like getting my face back from lymphoedema and now overcoming the fibrosis of the neck make life...exciting, once again.
Thanks for the input, Mate. I'm hoping wherever this road leads will help others.
By the way there's a couple of real cool Head and Neck sites in fb where your experience will make othe peoples struggle easier.
I too was caught out with the unexpected treatment outcomes. I have had two surgeries and chemo.
My first surgery, and it was major surgery, so that was an eye opener. left me feeling like I should have been more sympathetic to other people I knew that had gone through surgery, when I wasn't.
Chemo was aweful and complicated, I expected it to be so no real surprise.
I lived with an ostomy bag for 5 months. Adjusting to the bag was a challenge, but it was the surgery that followed which was difficult. I was warned the first week after surgery would be a shock to the system. well, learning to reuse parts of my body that had been dormant for five months is an extreme experience. I was expecting to return to work a week later. As I worked at home, not a big issue. It took two weeks before I started working, but was not smooth. Best thing about working from home, I was actually house bound, for about 2 months. things started to improve, but it goes up and down. The point being, I thought I'd be back to normal a week after surgery.
Researching afterwards was an eye opener. Finding out how long people have issues in similar circumstances was devastating. It left me feeling that treating cancer had reduced my quality of life so significantly, I questioned why I would go on this way. I was not prepared for how bad that would be and it hit me really hard.
The good news is, things have improved. My altered body components are doing their jobs. Although not without some life adjustments and occasional pain. the damage I suffered during that period has mostly healed, so less overall pain. I'm no longer House bound and I have a new job in the city. While I don't think things are back to normal, I'm able to participate in normal activities again.
Normal has a new definition though, with the coronavirus situation. Hunting down shops for a packet of toilet paper is not normal. Should be able to just buy it! For anyone out there who has recently undergone an ostomy reversal, and you are wondering what fresh hell you've been cast into... I just want to say... I get it. I would happily punch any idiot hoarding toilet paper and denying people like yourselves from getting the downstairs comfort you need to get through this period. Enough ranting Phil!
take care Joe.
My God sounds like you've been thru the meatgrinder! My hat's off to you Mate!
I'm really glad to hear you're keeping a stiff upper lip and taking your victories as you work them.
And I've got to thank you for dropping ne this inspiring line. Needed it, to be honest, since I'm back at the No Eating stage with some kind of ulceration at the throat I'm hoping is just a return or aggravation of Radiation Side effect.
I've been using Fenbendazole and it looked like life was turning there and the cancer was under control. Now I'm not sure what to believe since my weight is ten lbs less than after treatment.
But, I'm still involved in daily house remodeling (about to finish a gym room in the house, then the office addition), gardening etc.
There is a Head and Neck/Oral cancer group in Facebook thats really outstanding...so I've been plugged there. Great support, info and humor.
The Corona Thing at least provides entertainment. Thank God I finished the Pantry last month and stocked it with a month or so of non perishables-not a survivalist, but have had a few friends who were (as well as some Mormon clients). I guess I blind lucked there with tge pantry idea...
I hope your days cantinue to reward that Warrior Spirit in ya!
I think how you feel is the important thing.
For me it's worth a think about where the things that make us feel good come from, and are they ultimately healthy or unhealthy - but in general, chasing what makes you feel good & happy is seldom wrong.
(Sorry, I don't want to side-track you, but mate I do think your a very fired up and resolute individual - and that can come at the cost of acceptance & perspective. I think there *is* a new you, and although I never met the old you, I personally am confident I'd find the new you a lot more impressive as a human being. I'm just writing this gibberish because I think it's important to respect that and not overly measure the future by the past)
You want to battle the side effects ? Great mate, I'm impressed by courage and fortitude. You mentioned paranoia and fear of death - those two are MASSIVE, and such elusive, tricky enemies to try and fight. Honestly, I'm regularly failing in that regard, but for me the best strategy is a kind of sideways forgetting, distracting myself with fun and love wherever I can.
You want to look better ? Cool mate, especially if that makes you feel better. You look good to me. I'm not a gay man, but hey, I'd pause and think about it (he says with a joking smile)
You're winning each day, and that's great. But what happens if you stop winning ? What happens if you have a setback ? Buddy, I just wanted to offer these words to you - you ARE the new you. Like it or not. You're changed. Your life has changed. Let's not bullshit and say "cancer makes you stronger", cancer is absolute dogshit on the shoe of the universe, it's a kick in the guts crap-fest. BUT .. the way you've overall battled it is extraordinary. I've noticed your remarks across the forums, invested with a strength and dignity that can't be ignored.
Are you a warrior ? Absolutely. But you're more than that, man. I have a friend who's a great fighter. professional athlete, mixed martial artist. Throughout his life, he's tackled every challenge like a bulldozer. Built like a brick shithouse. But cancer would destroy him. He wouldn't have the tools to take it on. He's a mad viking. but he isn't the warrior you are.
You've faced adversaries that many couldn't, and you continue to face them.
Yeah man, you're winning. But you're winning more than you think.
Sorry buddy, I just wanted to comment about perspective. I applaud the courage and vigour that you have in your attitude, mate - it's fantastic. I just wanted to say that you should weave these victories into that overall picture. Because you are a new you, even if you refuse to accept it.
And that new you is strong as all hell.
Strong enough to accept the things he cannot change, and fight fiercely for the things he can.
I guess it's that "I cannot/won't accept" language that freaks me out a little bit.
The take-away to research is phenomenally important, anybody dealing with cancer or it's side effects needs to read up and understand the treatments and some of their vicious side effects. But if you're suffering and looking for courage, I think the key is to find ways to feel better, find ways to be happy - for Viking Joe that's making war against the things that make him unhappy (and more power to him), but if someone else is here looking for strength - it's OK to take up the guitar or fart arse around with learning to paint landscapes. Try to minimise your symptoms, and sure - don't worry so much about a 'new you', there is a lot of bullshit language amongst cancer survivors (and the professionals who try to help them!) , and accepting the 'new you' is kinda one of them, bandied about like 'find your new normal'.
You sort of do need to do that - but do it your way. My humble opinion
There's this concept of a "Cancer Warrior" which is also, in my opinion, dripping with bullshit. Suffering cancer doesn't make you a warrior. Joe already was. I think I am, actually. But you don't *need* to be a warrior. Just have the courage to take things on as best you can, try and remember to love and be happy wherever you can. Cancer tries to steal that from you.
Sorry, I think I failed to articulate a point that on reading felt quite important 🙂 Oh well, stupid me.
Congrats Joe, you're a legend, even on days when the cancer shit gets to you more than it should, don't lose sight of that, you're inspiring in your approach. Good luck, mate.
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