"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!
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