Just be honest with them it’s hard I know I told my sons that I never want to hurt but the reality is or was whilst they were upset the are handling it in their own ways. For me it’s hard to see them suffer but I fell that I am no longer needing to act as if it’s all ok because it’s not. At least we are all going through it together as a family which strangely brings with it comfort to all. Everybody can be just how they need to be. We have cried together and still enjoy the time we have. Creating those good memories will I hope help my sons and family when I am gone. good luck just follow your heart.
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Ok, I think it is time this thread had a rest.
I am truly sorry for your loss @Keith 💕
We have a great booklet all about Complementary Therapies that is well worth a read for anyone affected by cancer, including carers, family members and friends. Complementary therapies are worth looking at and how they can work with your more conventional treatments such as chemo or radiation. Even something as simple as a light massage can do the world of good for some people.
Regarding the perennial question of whether gumbi gumbi is effective in treating cancer, I am going to refer you to the Cancer Council website - iheard which looks at all sorts of questions and things people have heard about cancer, and gives an informed answer about them. The site is well worth the visit.
With regards to gumbi gumbi, this is what the site says:
Gumbi gumbi (or gumby gumby) is otherwise known as the native Australian plant Pittosporum Phylliraeoides. Gumbi Gumbi is a medium to large tree, native to certain areas of Australia, and very sparsely found. Many people believe there are up to six varieties, with only one having medicinal properties used in Aboriginal herbal remedies and another being toxic. The major constituent of gumbi gumbi extract is saponin (a sulphonated di- or tri-terpene). Saponins are natural detergents found in plants. They’re highly toxic to cold blooded animals and some have been identified in snake venom, starfish and sea cucumber. Some are toxic to humans. Also present in gumbi gumbi extract are tannins, which have shown potential antiviral, antibacterial, long-term antioxidant and anti-parasitic properties. There are also alkaloids, naturally occurring chemical compounds containing basic nitrogen functionality that have pharmacological effects at low doses and are used in medications and recreational drugs. There is no credible independent scientific evidence that gumbi gumbi extract has any effect on cancer.
There's an entire section on our website about Complementary Therapies that is well worth the read, including this section regarding the use of herbs and plants. And I'd like to draw your attention to this section on making treatment decisions, which may be helpful when considering complementary therapies.
Some further resources we recommend you check out:
Understanding cancer books
Podcasts: The Thing About Cancer
Podcasts: The Thing About Advanced Cancer
Cancer Council Online Community Manager
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Hi Mel, I feel I connect a little with your story. I am about to turn 35 in less than a week and I was diagnosed with stage IV gastric cancer four weeks ago. I switch from wanting to cry about it and curl up in a ball, then to feeling I can handle it all. It's been a whirlwind of a month and I expect it to be for the next few months. Hope to help each other out if you would like to stay in touch. Rowie
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Sorry, I'd had to post yesterday without finishing what I wanted to say. It's quite emotional draining thinking about it and writing it, and if I didn't post it then and there, I would have just deleted it again. During this time while I was in this crazy state it felt very much like I was neither alive or dead, but in some half way house where I could neither live or die. I was locked in. Often wandering the tunnels, in a world full of pain and torture that I couldn't escape from. I felt like I was moving back and forth in time and space (all of this is actually a condition called Post Traumatic Amnesia), with pockets of semi-consciousness. Often there was just nothing. But because I only had isolated patches of memory, I couldn't remember that I was unable to walk, so they had to tie me down to the bed in a straitjacket. I recall thinking and praying, if there is a God and he loved me, where is he now? How could he leave me here like this trapped inbetween these two worlds? During one of the pockets of consciousness, I was laying on the bed (I was in a locked ward), watching TV and a priest from my local area was on television being interviewed. Was this a sign? Two days later, I was finally able to remember something that had happened earlier that day. After more than 6 weeks in a messed up living personal torture chamber I had completed emerging from PTA. So, after all of this, does this mean I am religious? Personally I've found that I'm still no closer to an answer that I was before. I just have more questions. Which makes me think of this news article about astronauts. https://www.abc.net.au/news/2019-07-19/moon-landing-anniversary-astronauts-turned-religion-spirituality/11301606?sf215979870=1 During the address, given to a small crowd in a bowling club in a country town in north-west New South Wales — which must have seemed like galaxies away from space travel glory for Irwin — he described a personal moment that was profoundly affecting. Standing on the Moon and looking back at Earth, Irwin was able to close one eye, hold up his thumb and cover the entire planet — every mountain, every city, every person, every valley, every ocean. All under his thumb. Irwin said it made him feel terrifyingly small. He went on to claim that many of the astronauts involved in those early days of space walks and Moon visits embraced spirituality or religion. Some had existential crises and struggled to understand the meaning of their lives. So whether we have been locked inside our own minds or we are astronauts and struggling to come to terms with our own insignificance, we are still trying to work out where we fit in. -sch
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Keep battling Bill - you'll beat it and look back to admire the courage and fight you excerpted. I'm just ending my second tour of chemo radiation, with a neck dissection thrown in for good measure - you can't give in to the evil bastard that is cancer. This time around I've been keeping a weekly vlog, thankfully my second tour is lower down and much easier to endure - here's the latest episode of my vlog - https://youtu.be/lg0CQV1RhqQ Cheers Shane
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The hospital staff (nutritionists, OTs, etc) will urge you to eat as long as possible, but the mucositis problem isn't just something you can bash through (if you have the rancid taste one). In fact, trying can cause you longer term issues with food aversion. It's tricky, they want you to eat so that you don't lose muscle memory, forgetting how to swallow, as re-learning how is an effort .. BUT .. many of them aren't conversant on the rancid taste dysgeusia and IT can also cause problems with your swallow - where you get a kind of heightened gag reflex from pattern-based-food aversion, that kind of thing. Somewhere in there, is a solution that fits the individual - which might mean they can tolerate sips of water but not more substantial foods … for me it was total PEG dependency for (cant remember exactly) something like 4-6 weeks, maybe longer. I can only offer one perspective, and untangling the viewpoints of me, doctors, nutritionists, family, himself, yourself … and deciding what to do is a challenge .. but if he's vomiting, it's counter productive to force him to eat. With the PEG tube, you can get large-size syringes from most chemists, and it isn't really so hard to push in 200ml at a sitting .. you just get your water/formula/whatever, in front, and push it down slowly and patiently. 10ml, pause, 10ml, pause. Line looks murky, OK push some water down. Pause. The feeds took me a while, every couple of hours I was pushing down 200ml or so either just of water, or water+protein formula. If he isn't overweight, you need to have a front-foot forward on this as his body will already be cannibalising itself - eating away at muscle etc. So, keeping his weight up is important (unless he's a bit of a fattie, in which case you have some lee-way) - so I'd sit down and do the math on what will allow you to introduce into his gut each and every day: - 300g of protein - 2L of water - 2500ish calories A musashi muscle recovery protein shake has about 250 calories and 32g of protein per serve (about 400ml) You could set a timer, and every 3 hours, ie 8am, 11am, 2pm, 5pm, 8pm, 11pm, push down a serve - with that logic, he'd get all his hydration needs + 1500 calories + 180g of protein. It's not ample, but it is a shit-ton better than nothing, or vomiting up a bunch of soup. Three hourly isn't too demanding. If he gets used to it and can handle more, you push up the calories etc accordingly. Musashi shakes may not be the best product, but I researched it at the time and the numbers were significantly better than the other formula and hospital products. Need that healing protein ! You'll be in for a surprise - you can actually take formula via PEG and even end up vomiting it out via mouth (with rawness and pain), because of the mucus/cough/sensitivity. BUT .. with caution and care you can keep the tube feeds down ... And lets face it .. it's a helpless time .. taking control of getting nutrition/hydration/protein into the body is the one thing you CAN control. Just educate yourself on tube care and all that stuff. Always flush it with clean water after use, etc etc. Hydrated and with some protein/calories in him, you may find that he starts to feel a little bit better overall. THERAPY: no idea, sorry, I do remember with the whole cancer orientation, they gave me two things that might help: - a contact for a CANCER CARE person, a kind of hospital liaison .. could call them and ask about counselling - they did have a kind of group intro session with a psychologist, who went into managing depression, all that stuff (the ultimate irony of a cancer patient committing suicide , I guess). There is definitely a resource attached to the hospital organising your treatment, just need to research it and reach out - NOTE: the staff here .. they have resources tips, counselling lines, all that jazz, so you could look at the resources on this website too. For me, it's bullshit, it's not helpful to talk to a professional person and manage my 'feelings', heh. I'm just wired that way (too independent). Be mindful that if he doesn't WANT it, don't push him. Be there to help him, not add weight to his burdens, you know ? I know as a partner, you suffer as much as he does, but in a different form .. I'd just humbly suggest that you don't project your own expectations/preferences/anxieties onto him, but rather take a good clinical look and be the strategist and general. If he's struggling along and really in the trenches, maybe having you there as a rock is exactly what he needs to get through. By researching all this stuff, I get the feeling that's exactly what you're trying to do. Just be mindful that if he appears to want to curl up into a ball and sleep for 3 days, that may be exactly what is best for him .. and you just make sure he gets to his hospital appointments. Maybe having you sit, hold his hand … who knows, maybe that's something he needs. Not discussion, just an ear there if he wants it and no pressure if he doesn't. Maybe a chance to vent, cry, scream. Maybe an indication that he doesn't have to PLAY IT TOUGH, maybe an invitation is what fits his particular character. It's all about finding the right unique recipe for him. DISTRACTIONS: the riddle of this bit is … finding the right distraction, but not trying too hard. I reckon if you try too hard to find distractions, it can actually have an opposite effect and be a source of stress and frustration. What I'd suggest is .. when he was not sick, think of that thing he'd do when he had all the time in the world and no particular problems. It could be just going full-blown couch-potato and watching every movie ever made starring Bruce Willis. If that's his thing, then let him zombie out in front of Die Hard 1-15. Somewhere there has to be something that doesn't create stress or a sense of effort … sounds like an active guy, lets say he loved boxing .. well, he cant do that right now obviously .. but you could buy an XBOX and the latest boxing game. Even though it might seem immature and not within his normal tastes - playing a game in an area of interest might help him. Dunno, just throwing words out there in case something sticks to the wall. Cancer is an absolute shit show, and I sincerely doubt there's any general approach that can minimise the suffering a patient will go through. Navigating through the next couple of months is going to be really tricky, and it sounds like he's struggling. I hope you can find ways to help him through. Just bear in mind that it's the TRYING that matters. We value outcomes, sure. And of course whatever you try .. well, we all want it to work. BUT cancer can be a very isolating disease. It doesn't just try to kill you physically, it tries to kill your sense of hope and place in the world, your emotional balance. The fact that you're by his side and so concerned speaks volumes, and I reckon knowing that and seeing that (even if any given tactic doesn't work) will have an overall positive effect on his morale. Good luck ! Sorry if any of my rambling is more annoying than useful. I hope your and his suffering that lies ahead is no greater than your respective abilities to handle it.
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Hi Lee Roy Thank you for your reply. I am glad to read that your pain and suffering is being dealt with to give you some form of quality of life. It seems to be so ongoing with so many sufferring with pain, ongoing and neverending illnesses. Popping in to express my gratitude and gentle journeys to you. Ngahuia
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Thank you for your post @CaptainAustrali, unfortunately these people exist out there 😐
And ta for the reminder @sch, it's important to remember that this site whilst Australian in origin does actually attract a surprising number of people from the UK, USA, Canada and other places abroad - oh and New Zealand too 😘 We also have the odd person that uses Google translator to post as well, which is just amazing.
We are definitely reaching people affected by cancer globally, even in countries where there are other well established online communities dedicated to cancer, such as Macmillan in the UK, Cancer Connection in Canada (Canadian Cancer Society) and the Cancer Survivors Network in the USA (American Cancer Society).
Most of you that joined in the past few years would have gotten a welcome from myself or someone on the team. I triage everyone! If you see these posts, hit the "report inappropriate content" link which is on every post. This helps me immensely.
I also limited private messaging (it's now a privilege, not a straight up given) earlier in the year, to combat the people who like to register and spam via private message. All personal details you gave when registering are not accessible.
And a reminder that we do also have Community Guidelines available here and terms and conditions as well, that help me manage this site.
I am also incredibly approachable if you have any concerns or whatnots, and am happy to chat offline if needed. I am pretty passionate about this being a safe space for all of you. And even though it's the weekend and I have tiny humans running about, I do keep an eye on things as do other members of my team here at Cancer Council.
Hopefully this adds a bit of a human side to some of what I do with this site 🤗
Cancer Council Online Community Manager
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Hey hey - unrelated comment .. the references to "girly bits" and "lady parts" are really kinda charming That to one side - it's nice to connect with people in your EXACT situation (lady part cancer) and certainly the relatability of someone who had also had a hysterectomy or similar procedure, and wrapping your head around the changes (physiological, social, psychological) .. I'm sure it would be extra helpful to have someone who's shared the same situation. BUT .. if you hit a wall, and still feel that you need and aren't getting some kind of support .. let's say it's a friendly ear …. I'd suggest widen your criteria a bit. Most folks who have been through cancer, in my opinion, have had their outlook changed, and adapt to some pretty common sorts of issues. I think that in many cases it broadens a person's perspective, and deepens their empathy. Even if it's not lady-part specific, I think you could find a friendly ear, and someone who understands the generalities, if not exactly how it feels. Best of luck !
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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.