You have an outstanding attitude kJ. I, like you have changed due to cancer. Not mine, but my wife’s. Her stoic, non complaining attitude was an inspiration to me. I someday hope I can live up to being 50% of the person she was.   Maria & I loved the mountains, the country, snow and her childhood town of Batlow, in the Snowy mountains region of NSW. Her parents still live there on the orchard, where she grew up with her two sisters. A dynamic force as children, I wager. I visit her parents quite often, when I’m not having treatment or housebound with COVID. It really lifts my spirit & heart.   Someday kJ, you & your wife will get to sit by the likes of the Tumut river, or at the banks of Blowering dam with those grandchildren & cancer will be a far away memory. That’s what I hope, for you.   Always a pleasure kJ,.....take care...Lindsay     ... View more

Hi Minkyuu,   Well, what do I say? Here you are, your 24 years old with a passion ripped off you, due to illness. Just terrible.iI know this sounds like cold comfort, but luckily you have age on your side.   At 24, if I can remember back then, now was forever. Your gift for singing was, as you say, your only talent.At 24 that’s how it seems. At the moment everything worthwhile is gone. That’s now Minkyuu, things will change a little further down the track. You wait & see. Concentrate on getting your health back on track and achieving that will switch the lights back on.  Get the cancer issues sorted and you will see things in another way,  a brand new Minkyuu. Doors will open. If your love is music, why not take up a instrument. Let’s face it, your vocal cords and your mouth that allows you to sing is a instrument. Why not a guitar, or a saxophone.   The thing is, getting involved in another passion is the easy part . The challenge is getting you physically & mentally prepared for that new passion.   Please take time to get well, take the advice of your medical support team & your family. They all want you to be better, fit and strong, ready for your next challenge.   Take care Minkyuu, Please keep us posted on this site with your progress. I for one will keep a eye out for you.   Lindsay ... View more

Stay strong EmmaP. Your story is a touching one. I can only hope that you can get through all of the challenges,  in the way to good health,  unscathed. This population of cancer patients are a little like a defacto family. As a family we all pull together. When your feeling down, take the opportunity to vent your feelings here. Someone will see you and do the best things possible to lift your spirit. I hope your son is able to give you a hand around the house / garden. Helping out where he can, is a great excuse to do things together. A bonding session, behind the scenes, so to speak. In those quiet times, when your mind is running away & you feel anxious, think of the good things you’ve been able to do with your son & family. We’re here EmmaP, with open eyes, ears and mind, if you want to vent. Take care, look after your health and great success with the treatment. Lindsay ... View more

It sure is Barb, I am very close to my wife’s family. I think, no I know,  we have become closer after her death. We support each other tremendously. My brother & I are very different personalities. We have many arguments, almost daily, but it’s good. An alternative view to keep me interested.   Thank you & the team, I get a lot of inspiration from this site.   Lindsay ... View more

Lack of concentration, I forgot to mention what I do during the lockdown. I talk to my brother in Broken Hill, either on the phone or by zoom. I follow the news, written and electronic and I listen to music. Every second day I call me in-laws to see how they’re going, but that’s not restricted to the lockdown.   thats me done & dusted.....Lindsay ... View more

Hi everyone,   In 2016 I was diagnosed with pNETs. For those who don’t know, NETs is a Neuroendocrine tumour. Mine is located in the pancreas, hence the prefix ‘p’. Neuroendocrine tumours are often referred to as being a rare cancer, but it is more better described as being uncommon.   As detection and understanding of NETs is better known, more people are being diagnosed. That in itself is a great thing. The earlier and the younger the patient is diagnosed, the more likely that patient can be cured.   People in my situation can’t be cured, the best we can hope for is management & smart strategies by even smarter NETs specialist teams to restrict the tumour growth. Various procedures and protocols are deployed, depending where the tumour lives.   I’m very fortunate. I don’t suffer any ill effects from the cancer itself. It is fair to say that if I hadn’t been diagnosed with the tumour, I probably wouldn’t know. I would die from the tumour, probably in excruciating late stage pain, 5~ years premature. However I do know & I have a wonderful team fighting the good fight, behind the scenes.   The effects NETs has had on me is hard to describe. A lot of the issues I deal with, not onerously, are extreme fatigue and weirdly sleep deprivation, brittle bones, an inability to concentrate and aches and pains in places never experienced before. I don’t know if these issues are age, previous lifestyle or as a result of the tumour and the associated medication. No one can tell.   Well I’ve done my bit to put the insomniacs to sleep, thank me when you wake. I’ll sign off, but also make a point. NETs is not a mainstream disease & gets very very little Government funding. It relies on donations to advance clinical trials, research and the like. I ask NOBODY to contribute, I’m just making an observation. Sleep well after reading this.   Lindsay     ... View more

Hi Sch,   What you say is true, regardless of the number of times a procedure is performed, the anxious wait is the worst. The results weren’t good, but not life threatening. NETs is a very slow moving cancer, with COVIT and my weakened immunity, it’s best I just sit it out for a while. OKAY by me, Lutate is the next step. Not a pleasant experience for me. How is your wife going, isolated with Corona? Weird world at the moment s. Crash helmets on and duck for cover. cheers     ... View more

Thanks for the update Sch. Hopefully a turn around today. Best wishes, both🤞 ... View more

Everyone is different Maggiemoo, thanks for you well wishes. It did have a great effect in knocking the tumour backwards. I spoke with a man late last year who had  all 4 rounds and NO side issues.   I guess it’s a bit of a lucky dip.....Stay healthy Maggiemoo. 🤞🤞   ... View more

Hi Maggiemoo,   I had one round of Four Lutate infusions. My blood count and bone marrow were compromised. The second round was postponed for 2 months and again for another month. My NETs team then decided it was better to wait until it became essential. That was 16 months ago.   My pNETs has grown slightly & the Mets in my liver has spread a little. In a conversation about restarting the Lutate, I was asked if I had a fall?........No, why?......it seems I have 3 fractured vertebrae in my lower Thoracic spine. Asking about that the hospital oncology registrar quite casually said, my bones were most likely damaged as a result of the Lutate.   Fortunately, I’m not in any pain with it, but I just wonder what round 2 is going to have me up for. Due to COVID and my weakened immunity, the oncologist doesn’t to take the risk right now.   Sometimes the treatment is more scary than the disease.   I hope your situation improves Maggiemoo, You shouldn’t be in pain & I wish you all the bast.. ... View more