October 2020
1 Kudo
Hi sch Just decided to look through the posts and I'm happy to say that so far so good. Since the 2018 diagnoses I had another scare they sd i had thyroid cancer. Apparently on the PET scan that area lit up but following a total thyroidectomy it was all clear. I've had lots of fatigue and that horrible neuropathy that makes walking hard. Still not back at work hoping to return next year. I'm looking forward to Christmas hoping to see family in Victoria!!! How are you going?
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September 2020
1 Kudo
Dear Budgie, thanks for replying about hair loss with radiation. It’s great to hear your hair grows back, and I’m still hoping I’ll be able to keep my hair which is thinning. Thanks again Budgie 🌺
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September 2020
2 Kudos
Hi Suz It's a long time since I started this post. A lot has happened. I am post chemo, post stoma reversal and post my 12 month colonoscopy (despite Covid19 delaying it by 3 months). I have distant memories of my stoma. Post stoma brings on it's own issue and has you wanting it back. It makes you quickly forget about the issues of stomas. However, when I reach into the vault, it all comes back. Leakage was my biggest fear. I had about 2 to 3 hours sleep between bag alarms. I struggled a lot at the start because I had trouble getting a seal around the stoma. It took a long time to work out what worked for me. After I cracked that, it all got better, but my main concern then become controlling diet which was also tricky with the chemo. If the bag filled up with fluid or gas, that was high risk leak situation. It's like a high pressure balloon. I ended up finding a good ring seal. I had to order a large one and cut it to size. I could wrap it closely around my stoma which was a figure 8 shape. It really cut down on my leaks. In the meantime, I'm cancer free and things are improving generally. Tests are continuing and hopefully they won't find anything in the future. Good luck with your stoma care. I hope you get some better sleep. cheers Phil
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September 2020
Hi folks I have just hit the 15 month mark. I celebrated with another colonoscopy. I known champagne, beer or cake are more common celebratory methods, but not for me. No sir. A good solid week of bowel preparation and a camera up the butt is the best way to celebrate. Had it not been for a global pandemic, I'd have had it on the 12 month anniversary. Better late than never. So, post colonoscopy, what can I say? I'm still cancer free. Also my recent blood works came back clear as well. The surgeon got to check out his handy work... from the inside, so he's happy. It wasn't all good news. They found a new polyp which was removed, so it shows that they are going to just keep coming. I'll be going through the process for the rest of my hopefully long life. Still, it can't take away the positive news. I hope others are getting some reassuring news. all the best folk!
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August 2020
Oh Tom, how horrible for you and your family, to be dealing with that! When I got my diagnosis I was freaked out that it was in the liver, but relieved that so far (touch wood) it hasn't gone into the lungs. I did manage to develop blood clots in the lungs, but hopefully the cancer will stay out of there. Mine was in the liver, too - so much so that it was initially inoperable. I, too, have been doing chemo every fortnight (and isn't that fun?) so I can sympathise with your wife for the probably limited days she's feeling even remotely well. I have the three drugs on the Thursday, with the takeaway bottle for the next two days... also high on my list of stuff I'd rather do without. It does tend to shift the goalposts a bit, when the cancer goes wandering. Mine's reduced somewhat, enough that they now think operations are a possibility, however, I'm always aware that it could decide it wants to grow again. So my deepest sympathy for your wife there - it's so horrible when you've got yourself braced for the operations, only to have that change so suddenly. I'm glad she's off the oxalyplatin. That's yucky stuff. My own neuropathy has been getting worse, so I suspect that's a big factor in the oncologist deciding to stop that treatment. There's a clinical study being done by QUT, Queensland Health, and UCSF (?) into chemotherapy induce peripheral neuropathy (CIPN) which is seeking to alleviate symptoms using home based therapies (heat and massage). The website is research.qut.edu.au/real/cipn/ if you think that may be of some use. My own philosophy has changed to "que sera sera" but I hope your wife's strength of character wins out over this pernicious disease. Sending hugs and love to you, your wife, and your little one... Hugs, Pauline
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June 2020
4 Kudos
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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May 2020
2 Kudos
Hi Cap Sorry. I had to follow-up your long, long post with something really short. Succeeded. But ditto... same learning curve as me and I guess the majority of people learning to play an instrument. I shall impart some important tips to help you on your journey. 1. Warm up before you play. Massage, stretch and wiggle your wrists, hand and fingers. Athletes warm up before performing, practice and exercise. Musicians should do the same. Let your mind warm up and get in the zone. Warm up your instrument before you try anything serious. You will perform better when your mind, hands and instrument are zoned in as a unit. Once warmed up you must Exercise, Practice and Play. In that order. 2. Tune your instrument. Continuous tune it as you play. Tune in your voice to match the guitar. When your instrument sounds good, you are more inspired than when it sounds out of tune. When you sing along, it will help improve your singing in key. if either sound bad, you will be less enthusiastic about playing. 3. Music has rules. Timing, tuning, harmony, playing in key, sitting position, holding position, hand position, fingering position, etc. When you practice, keep a strong discipline. Stick to the rules... ALWAYS. 4. Rules were made to be broken. When you are playing music, break any rule that makes it sound right. But never break rules for practice or exercise. Practice with your mind. Play with your soul. 5. ALWAYS tap your foot when you play. Tommy Emanuel's #1 rule. 6. Learn your fret board. This is hard, but learning to count or the alphabet is harder. It seems hard at first and difficult to remember. Practice 5 minutes every day to memorise where notes are. Test yourself daily. Before too long, muscle memory will find the locations before you consciousness tells you where the notes are. A good tip... it's a number of repeating patterns. You learn how to find it, not where to find it. 7. Practice scales and chord structure 5 minutes every day. understand where to find notes in key by a pattern. Learn the different keys, their origin and where they are used. Learn basic chord structures and understand what makes different chords such as 6s, 7s, add 9, 9s, 11s etc. Understand when chords are in certain keys. 8. Practice techniques. Playing in tempo, finger picking, up and down pick methods, forming chords, chord changes, coordinating left and right hands, numbing strings, playing scales, etc. Practice techniques very slowly and accurately. Focus on achieving the desired goal without mistakes. Try to learn the right way only. Try to not learn the mistakes. Speed will increase naturally. 9. When practising playing in tempo, keep temp always. if you make a mistake, don't break tempo. Just keep playing. the mistake is in the past. focus on getting the next part in the correct timing. Use a metronome or backing track when you practice. it will vastly increase you ability. keep tapping your foot the whole time to zone your body into the tempo. 10. Leaning to play a song is not practice. but treat it like practice. take it slow and stick to the rules. Focus on playing well before fast. speed will come naturally. Always learn to play music you like which you enjoy playing. When you can play it, break the rules and make it your own. 11. When playing, find a song that matches your mood. It will resonate. If you don't like the mood you're in. Play something in the mood you want to be in. 12. People who make fun of you or criticise your sound. Ask them to be constructive and not make fun. if it doesn't work, play and sing louder and don't let anyone silence you. Sing and play with confidence. Catch 22. If you play without confidence, you won't sound as good. People won't enjoy hearing you. Play with confidence, you may be embarrassed but you will sound better. You should be embarrassed to play without confidence. You will never stop learning, but one day you'll know you are not a student. You've become a musician. I am currently learning blues techniques played by Robert Johnson and Johnny Shines. I'm struggling and I've felt like a musician for twenty years. There is always something new to learn. Practice every day and the learning will happen quickly. Practice once a week and it will take much longer. Cheers Portly Phil
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