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
... View more
Glad to hear from you @PhilPepper, you've been missed!
What a journey you've been on over the past year!! I do hope yourself, your wife and the family are well.
Have you had a chance to chat with your GP about your circulatory issues?
Something else you might want to think about, don't forget that counselling is an option too if you find you need to consider it. You could give 13 11 20 a call and see if our counselling is an option or you can chat to your GP and go that route too.
Please don't be a stranger 😘
... View more
Hey Phil, I am new to all this but your post jumped at me cos I have stage 4 Bowel cancer and am going through chemo now. But my biggest bitch of all is I can't ever sleep on my side again! Whinge whinge. I have to sleep in an adjustable bed and have to sleep almost sitting up as I have a stoma bag that leaks like crazy if I sleep on either side. I miss curling up so badly! Sometimes my body aches to sleep on my side I just do it and damn the consequences lol. Thank goodness when they gave me my stoma bag I was given a great sense of humour with it. You have to laugh about it all. As to the chemo I wear a new fashion accessory which is a lil bottle, containing the chemo in a shoulder bag that I tote around for 2 days. This is my first course and I can honestly say I am having no side effects at all, touch wood. I know I am not going to lose my hair but it might go curly. Guess what I have always wanted curly hair. I am a 67 year old female and live in an aged care facility. Now that has a lot of things to complain about but all in all I love it here. About complaining, complain hun, you deserve to when you need and a problem shared is a problem halved. I am currently writing a six paged letter to the minister for aged care. I have become a placard carrying pensioner lol! I wish you all the best on your cancer journey and I hope you have a good outcome but a positive mind and outlook helps a great deal. Find your humour where you can oh and I hate to tell you this, they do just shove all your innards back as they can, it takes time to get it all to feel natural again. Good luck and the best of wishes, Suz123.
... View more
Hi Julia, It’s such a personal decision to make! I’m sure you’ll get lots of tips & ideas here. It had been suggested to me to cut my hair short/er once I started chemo, so that the transition to no hair wouldn’t be as dramatic. My hair started falling out by the handful a few weeks in & I soon found myself upset & obsessively searching for clumps of hair - it was absolutely everywhere! That was when I knew I had to take action. My son gave me a 3-stage cut. As much as possible we turned it into a fun and adventurous experience. Initially he gave me an undercut & braided the remaining hair into a Viking style (I’m 58 lol). Then he buzz cut Celtic knotwork into the undercut - I wish we’d taken photos! The final cut was an all-over stubble cut. The reason it’s suggested to not shave the hair too close to the scalp is to ensure that there are no injuries to any lumps or bumps that may be on the scalp which could easily get infected given our compromised immune systems whilst on chemo. Shaving my head was the most freeing, liberating thing I’ve ever done. I was so anxious beforehand, because my hair was the only thing I loved about my appearance. It was a revelation to look at myself in the mirror afterwards with love & compassion and see my precious, true self. Let us know what you decide & how it goes for you 💞
... View more
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.
... View more
Hello Ginger, I hope you're still dancing whilst making your sour dough bread or green smoothies! I agree that the isolation during the pandemic has not been too bad. Just seems to have been a long, long time because of the earlier isolation to heal and recover from treatment. The last week was even harder when you knew it was going to be possible to see family again. We're all well and my children have done brilliantly with their children getting through this time. Except one child who has not done well at all. In the last two years he has re-partnered with a lady who has a 5 year old child. My son has 3 children from a previous relationship. The eldest is 15 and has always lived with his father as his mother left this child when he was 1 years old. As a family we have all supported and helped this son through difficult times. The mother of this child developed bi-polar disease and took off for 8 years. She eventually came back and worked together again as a family to support her and incorporate her back into a relationship with her son. It's been rocky as he has some anger issues about being left but we've talked to him imagining his mother had a broken hip and needed to be hospitalised for 8 years. She was sick so we can't keep punishing her for that. She's tried to get her life together but she's not the most capable person and has struggled but she had him every second weekend and has tried to help out when she can. At the beginning of the pandemic my 15 year old grandson started behaving badly and sneaking out of the house late at night to meet up with his friends. My son's new partner gets asthma and she thought the danger to her and her child, was not acceptable. Fair enough. Unfortunately, when you have a 5 year old your parenting skills are only up to that of a 5 year old. 15 year olds are a whole different kettle of fish. He started skipping school and his school work suffered. My son tells me that yes, he may have been a very bad teenager but he was never disrespectful to me or his father which is true. My son also told me that things were so bad, he had contemplated driving off a bridge so I have to give him some leeway here. Unfortunately, last year my grandson's mother was diagnosed with stomach cancer. Stage 4. (See how cancer is mean)! She's been incredibly sick having chemo before and after surgery. I bought her pjs, dressing gown and luxuries to help her through the time ahead of her and she was incredibly grateful. Things do not look good for her and at the moment she still has a feeding peg for nights as her weight has dropped dramatically. My son decided to send his son to go and live with his mother who was living with her grandmother in a retirement village as she had nowhere else to live. My son thought that was the end of the story but it wasn't. As a family we decided that the mother was too sick to be trying to deal with a wayward teenager so we interfered and the child was transferred to my youngest daughter. His mother needs to go to QLD to live with her mother as she needs incredible support and help to get through this and is not well enough to be desperately trying to find a rental in the midst of the pandemic and with her own health shattered. There's a whole chapter here missing about trying to step parent teenage kids. My heart breaks fro this child who has now been abandoned by both his parents. 15 is a terrible age. We decided on my daughter's place because she's on 24 acres and miles away from public transport and far enough away from the suburb my grandson goes to school in to ensure there is no sneaking out at night. It's worked too. I understand that my son is very angry with his son for having no consideration for his mother, me or his step mother in not bringing home the virus. I also know that's pretty much what a 15 year old would do. They think they're invincible and he's not going to catch it. So for 6 weeks my daughter has had 5 children with 5 different schools to try to work around and she's done a brilliant job. My grandson has caught up on components he had not completed or submitted and done all his school work every day. He's been getting messages from his teachers who are very impressed with his work. My daughter has worked with him with some of the maths that he was having trouble with and that has given him a sense that he can do it. My daughter has ducks, chickens and alpacas that are all new and built fences in 2 different paddocks with the help of all the children. My grandson has been splitting firewood and the family have been selling firewood to survive financially. So miracle of miracles - he's been perfectly behaved and an asset within the family. I'm terribly sad for my son because I don't think he understands the long term ramifications of giving up on a child. He and his partner have bought this house together and I understand they are both terrified of being homeless again or going through a relationship break up again. I try to see this as my son just sending his child to live with his mother but the timing was terrible and it would not have changed anything. Sorry for the long story. I have been busy cooking big meals and soups for my daughter. My other son took up all the food and we had a lovely bbq together with my daughter and her family which was a way he could help out with the food. My daughter's husband has been brilliant and taken him out to the garage to help him work on cars which is his hobby. Has taught him some welding and how to mow the lawns with a ride on mower. Either the child has completely changed, or he's finding life enjoyable right now. It may all change when he goes back to school but my daughter has told him that this has to be his last stop. The next one could be juvenile detention if he doesn't abide by rules that are there to keep everyone safe. Perhaps it's a brutal wake up call. We had to take him shopping last weekend for winter clothes as he had almost nothing. My daughter had to go to apple to get her phone fixed. Before you could enter the store you had to sanitise your hands and wear a mask. I thought that was good because it made him realise that it wasn't just us pushing rules, this is how we have to survive for now. Teeth wise - No, no new teeth as all appointments at the Alfred Hospital were cancelled after they had an outbreak of the virus in the cancer ward. I have an appointment for the 1st June for the first plate mould. Eating has been weird for a long time. Appetite still has not returned. I still tire easily as I think I just don't have enough nutrition to regain strength. If I've had a cooking day for my daughter, my husband walks in and complains that MasterChef clean up is required and he's been wonderful helping with the clean up of the after mammoth cooks when I have no strength left. Hope you stay well. Winter is coming and I think we will just be rugging up to go out rather than hibernate this winter.
... View more
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
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.