Hi everyone, im on a short break from a working holiday, but when i started this work i decided to give smoking the flick (or a very goid attempt at it anyway) I have been a smoker for over 20 years, so far tomorrow it will be 2 weeks since i had a smoke. Funny enough i dont feel the "tounguing" need for a smoke but i feel as though i miss it at some compacity. Im interested in how other former smokers handled the quiting and the weird missing smoking feeling (sorry that is the best way to describe it for written word, ive never been good at written word, speak it fine verbaly, spelling and writing not so much, but thats another story)
lol I remember not being able to sing or laugh without hacking up a lung.
It was my hacking cough ("bronchitis" yet again) that inspired me to give up smoking. I didn't want to be one of those middle aged women with a croaky voice and a chest rattling cough (like so many at my place of work ๐ ).
My last cigarette was in 1994. I gave up because there was a price rise that took them to $6 a pkt which I thought was too much to pay...LOL... imagine that! What do they cost now?
I was -40-a-day smoker, a heavy chain smoker. I had the cough to match, and I was only 27 at the time... disgusting to think about it now. I used to crochet to have something to do with my hands, and I would suck lollipops, mostly they just sat in my mouth and I would play with them with my tongue...
I quit cold turkey so I can still remember the cravings. but hey... the end result is still worth every moment of it. HOWEVER..................... I still smoke in my dreams.. and I enjoy it. LOL (I used to smoke menthols, I loved the cool feel of the menthol sliding down the back of my throat each draw-back), and when I dream of smoking, I really enjoy it, and I always say to myself, its ok, i'll just quit again! LOL ....but in reality, I cant stand the smell of ciggie smoke. Its like I can smell it a mile away, and if I'm walking behind someone who is currently smoking, and I inhale it, errrrggghhhhhh... puke worthy!
For me, the 6wk smoke free, was the winning hurdle. All my cravings and addiction desires were gone by then. I started to smell everything, my cough started to ease off, I started to smell ciggie smoke as repulsive, and I commenced on a huge spring clean of the house washing everything and I do mean everything... It was exhausting, but oh so worth it.
Best of luck with your new smoke free journey. Stay positive and be proud of yourself. Its an extremely hard habit to break. Buy yourself something special to reward yourself. xxxxxj
********* *********** *********** ************ ************ *********** *********** Be Kind To Nurses.... They Stop The Doctors From Killing You.
Congratulations and well done for taking the plunge. It took me several goes and to be honest, I still don't know if I've won the battle. The "experts" all tell you how to quit and how much healthier you'll be, but what they don't tell you is, quitting is easy. Very easy. It's the staying off that's the hard part. As someone mentioned, all the association triggers. Get in the car, light a smoke, the phone rings, light a smoke, go to the letterbox, light a smoke. get stressed, light a smoke, get upset, light a smoke, after dinner, have a smoke. It can be torture at times, I'm not going to lie.
I'm now going to reveal a story that for the first time I have made public. The only reason I am making it public is because we are anonymous on this forum. Only a handful of people know who I am in real life, as in know my real name, and only a few of those know the story I am about to tell. Some parts might get graphic, so I'll put those in spoilers for those that don't handle graphic very well. It will also probably be a long post.
Earlier this year, Mr Tippy started to lose his voice. He went to his doctor who told him there was nothing wrong with him, he's a heavy snorer that has sleep apneoa, go and get CPAP. Over the next month or so, it got worse, went back to the doctor, told the same thing. Went back a 3rd time with almost no voice, told the same thing.
I then intervened and spoke to a friend who is an ENT surgeon in early June. 4 days later, 6/6/16, Mr Tippy had an appointment with same surgeon. A camera was put through his nose to look at his throat. Immediate diagnosis, vocal cord cancer. Can it be fixed? Yes, most likely by having the cancer removed with laser. Scary, but awesome!
2 days later, appointment with a head and neck surgeon in Sydney. Blood tests, CT scans, X-rays, another camera up the nose. Can it be fixed? Yes, but will probably need surgery as it's a bit too big for laser, but he'll be able to speak again. Great! We can deal with that. Surgeon rang the next morning with the CT results. It's bigger than we thought and it looks like it has spread to the lymph nodes (glands) in the neck. BUT, it can still be fixed. BUT, to fix it, he needs to have his whole voice box removed and a lot of the glands in his neck. No voice box, no voice. No voice box, no way of breathing through his nose and mouth. No voice box means having a permanent hole in his neck to breath through.
Initially Mr Tippy was against it. I found out that it was because the only people he'd seen in the same boat were ones that used the device that gave them a robot voice. He didn't want to be like that. He said he'd rather die. The surgeon said he didn't have to have that, there are new devices now that they implant. They make a tunnel between the windpipe and food pipe and insert a little silicone one way valve. It looks like a little cotton reel. To talk, he would have to block off the hole in his neck and then talk the same way he would have before. Sounds easy! I looked up some videos and they all had what I thought was a normal sounding voice. Mr Tippy was happy with that.
A couple of weeks later we got word that surgery was booked for 7/7/16. Prior to that there had been 6 trips to Sydney for various visits with different specialists and also a PET scan. A PET scan shows up cancer in the body. Results of that was there was no spread outside the neck. First bit of good news we'd had because if there is no spread outside the neck, the chance of cure is high. Throat cancer that hasn't spread has one of the highest cure rates of them all. If you have to get one, it's the one to get. If it has spread outside the neck, you're given 6-12 months tops.
1.30am on July 7, we head off for Sydney to be there by 6.30am. I said goodbye to him at 7am, knowing it was a very big and very long surgery. I was terrified. I have never been terrified like this about any surgery before, but throughout the day I found myself randomly crying in public places. I didn't care.
11.30pm I finally got to see him, completely covered in tubes, including 2 unexpected ones because both lungs collapsed in the recovery room. He was so pale and looked so sick and then I saw it. The new hole in his neck. The reminder that it had happened. It was now real. This was our new life. All the preparation over the previous weeks were for nothing. I felt like falling to pieces, but I stayed strong. It had been a long day, I'd been up for 23 hours and I didn't want to be kicked out of ICU for falling to pieces. I left there at 2.30am with him being in higher spirits than I thought he'd be in.
Over the next week he went uphill and downhill. One day up, the next day down. Emotional roller coaster.
He couldn't talk, he got frustrated at having to write everything down and felt like he was dying. It's actually quite sad to read some of his notes. He coughed a lot and the results of that was sending "rockets" all around the room. The curtains and TV were a mess by the time he left! I'm glad I didn't have to clean up!
He wasn't allowed to eat or drink. He wasn't allowed to swallow, even saliva. He had a sucker under his pillow to take care of his mouth. At times he felt he couldn't breath. At times he felt like he was being choked (he still has that sensation and it's constant). He had a tube up his nose that he was fed through. He felt unwell everytime the machine administered the liquid food. He was having blood tests up to 6 times a day (including through the night).
Some days we would laugh hysterically, other days would see him spend the day in tears. The emotions of losing your voice box is the same as losing a loved one. You go through exactly the same grieving process. The stages may not go in order, but they all turn up. He hasn't reached acceptance yet. The good days would see us retaining our sense of humour, which is very important.
Day 10 he was allowed to have a drink and some clear soup. Day 11 he was allowed to have custard and ice cream. Day 12 he had soft food. Real food! Day 11 he got to speak for the first time. I had come home for a couple of days so they videoed it for me. It was the most amazing thing I'd ever heard. It is different from his old voice, but it's his voice, coming from his lungs and from his mouth. Yes, from his mouth. It's a normal sounding voice. If you had never met him before, you wouldn't know it wasn't his real voice. Day 14 he came home.
Since being home, things have remained up and down. More up than down now, but the down days are VERY down. Our daily routine has changed to add a few things. That said, it's a much easier change than someone who has an accident and ends up in a wheelchair. It's our new normal.
2 weeks after coming home, he had to go back to Sydney for radiotherapy and chemo for 6 weeks, starting 8/8/16 (noticed the dates yet?). He fared pretty well with that until the end of week 4. Radiation burns on his neck. Even though they told him it wouldn't happen, his hair has been falling out from the chemo (he came back from down the street on Saturday sporting a number 2!). Really tired all the time. Food tasted bad. Really bad. Described to me as "salty cream" or "mouldy wet carpet smeared with mud and smothered in salt". He could still physically eat, but stopped eating because the taste of anything caused him to start gagging. He didn't want to not be able to stomach foods he normally ate once his taste came back. He lived on nutritional supplement shakes.
He's now been home for 4 weeks and had 2 trips to hospital locally because his bloods were all out of whack. The last admission was for 7 days. All his levels were high. They're now low, but we're managing them at home, even though the side effects are pretty bad. They'll sort themselves out in their own time. Last weekend was the first time he really ate anything for well over a month. Food still tastes bad, but he can at least detect a hint of taste in things now
I've now been back at work for 3 weeks after having 11 weeks off. It's been a steep learning curve and I've also had to educate the local medical people on his needs because it is a rare cancer, so a lot of people have not had anything to do with others like him. There are only 6 other people where I live, in a population of 50,000 people. I've even had to educate the local ambos in case they ever get called here. Going back to work was a relief. I was glad to be going back. I've never been glad to be going back!
Our day starts with me sitting in front of Mr Tippy with a torch and a long grabby thing pulling big sheets of dried snot out of his throat. It sometimes makes him cough and if I'm slow, I can get shot....usually in the face. Thankfully that's only happened a couple of times. If he's not quick enough to cover his throat, the TV or heater wears it. If he gets up before me he'll have a bit of a clean and in that case, the bathroom mirror cops it.
The force behind these snot rockets is like nothing you've ever seen. They are faster than the speed of light. They'll kill you quicker than a bullet. They are also super adhesive. You could glue to space shuttle together with this stuff and it would never fall apart! At this stage, this cleaning needs to be done several times a day. He also needs to have several nebulisers a day, like asthmatics use, to keep his lungs moist because he doesn't have a nose to humidify the air any more. Some time in the next few weeks he'll get little filters he'll wear over the hole that will warm and humidify the air he breathes. Kind of like an artificial nose.
The scary part is, it turned out to be even bigger than what they thought so we still don't know whether he will beat it. They got it all out but there are never any guarantees. It's also scary that if he gets sick and I'm not there, will the medical staff know how to look after him. It's already been proven that the local ED have no idea and that was evident by putting an oxygen mask on his face. They may as well have put it on his leg, it would have the same effect. Hence why I spoke to the ambos. I don't blame them. They don't normally deal with people like this so they can't be expected to know. Most are happy for me to educate them.
The sad part is, he gets stared at in public, even though he covers his neck up. Sometimes when he tries to talk his talky valve gets blocked and he can't get any sound out and the results are a neck fart. People don't understand and think he's being rude. I have seen people take a wide berth thinking he's got some highly contagious disease. Due to the nature of the surgery, he now burps a lot and he has no control of that. That also causes a lot of people to stare and give him filthy looks.
The upside is, he no longer snores and no longer has sleep apneoa. Thankfully we hadn't bought the CPAP machine! We'd looked at them and picked one out, just hadn't made the purchase.
The first thing people ask is, did he smoke? Yes, he did. He had quit 9 years ago and fell off the wagon about a year before diagnosis. The size of the cancer and the fact they are really slow growing means, even if he hadn't fallen off the wagon, the result would be the same. It was already there, just not showing itself. It had probably been there for at least 3 years. Smoking is not the only cause. Uncontrolled reflux is also a major cause. As is drinking and poor diet. Mr Tippy was all 4. Not everyone that gets this cancer has smoked. In fact, a lot have never smoked, BUT, they all had uncontrolled reflux.
If you've EVER smoked, regardless of how long ago you quit, you are still at risk of getting this cancer. Same if you have bad uncontrolled reflux and live on antacids. If you have a croaky voice that doesn't get better inside a month, or a sore throat that won't go away, get checked out. Don't let your GP say there is nothing wrong. Insist on being checked out. Only 1-2% of the population get this cancer (most get lung cancer), but it's on the increase, especially in women. It used to be a predominately a male disease. It's also no longer an old person thing like it was in the past. People in their early 20's have had this surgery. The earlier it is diagnosed, the much higher chance of cure.
Why did I decide to tell this story? As an incentive to anyone that gets the urge to fall of the wagon. I have come close so many times over the last 4.5 months due to all the immense stress, but then I look over at Mr Tippy's neck, I think of everything he's been through and everything he's still going through, and think that could easily have been me, or it could be me if I fall off. It's just not worth it.
I'm not after pity or sympathy. Just raising awareness to how bad stuff can happen to anyone. I'm also happy to answer any questions, like how does he smell or how does he blow is nose. 2 things that are deemed impossible when you can't breathe through your nose and mouth!
your story had me gasping, crying, laughing..... the two of you are amazing folk. stay strong my friend.... Im here if you ever need someone to have a cuppa with and a chat.. ok... take me up on it.
Sending you and mr tippy all my love and best recovery wishes xxx
********* *********** *********** ************ ************ *********** *********** Be Kind To Nurses.... They Stop The Doctors From Killing You.
Wow Tippy, good on you for supporting your partner, i know a lot of people who would of bailed out as soon as the going gets tough, also i know people who basicly lost everything and went bankrupt supporting and continue to support there partner through the ups and downs.
We've been together 20 years next week, married for 14, so it would have been a low act to do a runner. You know, the for better or worse thing. I did say to him at one pre op appointment with the surgeon that I was only joking when I agreed to the worse bit. It was all part of maintaining the sense of humour. If you lose that, you lose everything.
The thought of running never crossed my mind, even though plenty of others would. If anything, it has brought us closer together. My first thought at diagnosis was, we're in this together, we fight this together.
We make jokes about what's happened and how he is now. I can't tell you what he named the cancer, but it started with the same letter and was a hyphenated word with the second word being face. After the surgery he said he'd kicked CF in the **bleep** good and proper and gave it what for. He doesn't normally use that word, but I think this was an exception where it was appropriate.
Last night I was giving him a hug in the kitchen and had my face up near his neck. He was breathing on my face. I looked at him and said "I love it when you blow on my face". I thought he was going to collapse. He laughed so hard I didn't know if he was hyperventilating or suffocating! It's the little 2 meaning comments like that that keep our spirits up.
He realised tonight that despite everything he's been through, the lifestyle changes weren't much. We were watching Embarrassing Bodies and there was a bloke who's had a bike accident and is now in a wheelchair. There is so much he can no longer do. He needs a lift chair to get upstairs. He can't run or hike any more like he used it. He had to give up his job. He can't even make a bed. I'd imagine he'd have had a decent stint in the rehab ward too.
The only thing Mr Tippy can do that he would have been able to do before is scuba dive.....because he'd drown. He's never scuba dived so it's a non issue. He's not supposed to swim either for the same reasons, but you can get a modified snorkel that goes over the hole. You need specialised training to use it though. He was given a whole list of things he'd no longer be able to do, but where there's a will there's a way. Imagine not being able to breathe through your nose or mouth at all. How would you blow your nose? How would you blow out a candle or blow up a balloon? How could you smell things? They can all be done quite easily when you know how.
The only lifestyle mods we've had to make are the daily neck cleaning routine, remembering to take certain things with us when we go out (cleaning gear, serviettes or tissues) and at the moment he has to be careful when showering or he'll drown himself. Everything else is as it used to be and he'll be able to do everything he could before. We don't have it anywhere near as bad as some.
Amazing strength both Mr and Mrs Tippy - thank you for sharing this, and it goes without saying I wish you both all the best.
You are obviously soul mates, and have proven you can weather the storm.
___________________________________________________________________ Map out your future, But do it in pencil, The road ahead is as long as you make it. Make it worth the trip. Jon Bon Jovi
...... i hope the worst is over and Mr tippy makes a full recovery 
