I’m hoping in your top 5 inventions is: 1. All Cheese 2. Gooey cheese - Triple Brie, Camembert 3. Medium soft cheese- Havarti, Swiss, provolone etc 4. Fresh cheeses- mascarpone, mozzarella, cottage cheese, fettas 5. Hard cheeses- grana padano, pecorino, parmigiana Reggiano All hail to giver of joys- cheese.   ... View more

Hi Vochie, Thanks for reaching out, what a full on story and being 36 too- I keep hearing we’re the young ones. I also had issues with my GP patting me on the back and telling me it was normal even with a history of cysts and high risk markers.  I’d already had one surgery to remove cysts and in less than 12 months I was back with similar symptoms and generally feeling tired and off, but nothing too weird, I just felt that something was amiss. After the second cystectomy is when they found the cancer. Initially they thought it was Stage 2 endometrial cancer, however after a radical hysterectomy (ovaries, fallopian, uterus and cervix removed) they’ve since confirmed it is stage 1B2 cervical cancer. My case got streamlined to head of oncology because at each junction of testing my results didn’t match up. When they opened me up they expected a big mass on the lining but actually found a small mass at the junction of the cervix and uterus. They’ve removed it with clear margins, so good news, but CT scans before the surgery shows a spine legion and I’d also had some thyroid growths that need further investigation. Everything is on hold for healing. I’m 3 weeks into recovery, 2 weeks battling wound infection and losing my mind on hormone patches to deal with surgical menopause. From my second cystectomy to now is just under 6 months- my surgery for hysterectomy was 3 weeks after the first surgery- so it’s been a bit of a whirlwind.  reckon you might be right about finding a few good friends to talk to, I’m also booked in to see a psychologist next week.  The big thing I’ve noticed is that because I’ve got clear margins all my family and friends have defaulted to ‘oh you’re fixed so that’s that’ when clearly it’s not ending. I’m super positive about the prognosis but im also realistic, that this is a long journey back to a new kind of normal. Anyway that’s where it’s at today, it’s day to day and unfolding. I hope you too are doing well? What’s the prognosis now- and is the action plan okay?  Cheers claire  ... View more

Hey Phil, I'm with you, we can't let this thread die, there is far too much beneficial information here for others....even at 4am in the morning. Damn this disease.   I sleep with the lights on now- and haven't done that since I was 5. I'm going to get a bit waa-waa for a minute but the darkness feels a little oppressive now, and I just want there to be light when I open my eyes. It's something I'm working through (with the help of a shrink and friends who have NO problems laughing at me!)   Thank you for calling out the things that really matter on this journey, the first thing, being to be able to talk openly about it, and having the right support networks in place. This thread, you and Lampwork, Rick, Sch, Budgie have been instrumental in my ability to cope. Just having someone else in the universe with any semblance of understanding has been so valuable. If I haven't thanked you all, I thank you now.   As I'm a newbie on the cancer path, I'm still not sure what is to come, but I know that everything is irrevocably changed. Somethings for better, some for worse.   I wish I could understand how you're feeling with the chemo, but I'd be lying if I said I could. I haven't gone through that- though can at least empathise with the feeling of understanding more pain is just part of the process, and you have to go back in regardless.  It takes immense guts to brush off and go back in when you're already feeling like shite, without folding or breaking, or breaking and still knowing you just have to do it. But this is our journey right? Cancer sucks ass, balls and any other extremities, there is no way around it. I'm hoping that the next chemo doesn't suck so hard, and surgery does what it needs to. I'm keeping you in my thoughts.   You know, I've been told by well-wishers that I should feel blessed and that it's only those who are strong enough to bear it, etc etc. Sometimes I visualise karate-kicking them in the head, most of the times I just think I'll give them a hug. It's a shared journey of fumbling words and exploding emotions- waking up each morning with mortality staring straight back at you. The thing is, whether we had cancer or not, it's all so fragile. We just get a gentle or not so gentle reminder.   I haven't reached out recently because I'm staring down the barrel of nothing. I'm waiting either for treatment or transition to a survivor, and both are a bit scary. I'm more scared of being a survivor to be honest as it's a massive expanse of not knowing what to do next. My work, my relationships, what I want out of life have shifted so monumentally that going back to before seems impossible. I know it's too big for me to work out alone so I'm seeking out help. Treatment will have a schedule at least, a start and an end. That's my brain right now and I'm not proud of it, but its where it's at.   My learnings so far are limited, but i'll take your cue to share some things that became apparent to me really early on:   1. Cheese fixes pretty much everything. The gooey type is best. Find your cheese, or cheese substitute and enjoy it.   2. Jokes, laughter, absurdity, banter, all of those things with people who get you is the best drug of all. WAAAY better than any class A opioids.   3. I've lost what little dignity I had very early on, my body with all of its scars and bruises, pinholes and tufts, wrinkles, is just ridiculous. There are days I remember what it used to look like, but then I also remember how little clue I had at the same time, so I'm going to take experience and wisdom over tight abs and tone.    4. Friends and family will say the most stupid stuff you've ever heard. If it can be said, and it's going to hurt or rile you, they will seek it out and say it loud. But they are just trying to love, help, and process what's going on in the same way as you are. Be kind. Forgive them. Or keep a blacklist (whichever floats your boat).   5. If you're going to cry, make it count. Body rattling, lung shaking sobs are the best. Raw eyes, snotty, sniveling, ugly cries. I jest, but I'm also deadly serious. BAD pun. Crying is cathartic, and it's okay to just feel like shit.    6. Hold people, hug people, grab hands, just do what you can to stay close to others. It's easy to hide away, and pull back from contact, but it really can help.     7. Like Phil said, Talk. Just open your mouth, or begin typing. However you choose to do it, if not for yourself then for others. Sometimes what you say can change someone else's day. You just don't know.   I hope you get a better nights sleep Phil than last. I'll be awake at about 2am and then again at 5.30 if not....   Would love to hear from Sch, Rick, Budgie and Lampworks about their learnings too.  Cheers, Claire            ... View more

2 lines is fine! It’s concise and yes- we’re still going for the record, which I have no idea what we’re aiming for, we’ve cracked the 100! Good to hear you’re doing okay- I too tried a no tablet day yesterday, not. Wise. Didn’t sleep until 4am due to pain- gotta stop being a hero and just rest, it’s just sooooo hard! Happy weekend 😁 ... View more

Love it Phil! Though I think I’ve missed one and could only find 14. My Elton knowledge is probably lacking,  as he was a second or third to the Beatles in our house, and anything from George Harrison, John or Paul. I think Ringo was sadly skipped over- his song writing ability was frankly pretty poor in comparison (sorry Ringo!) My Da was a drummer and singer in his pre-suit years so music in every form is in our veins. Guy used to drive me mental playing spoons at the table at dinner time. . and embarrass the hell out of me when friends came around, singing making dinner. Now I get to do the same to our boy- such evil joy!!    Python was religious viewing in our place too (what a pun!) followed by Fawlty Towers, Kenny Everett, and The young ones-basically anything British. I’m trying to wean the five year old off Frozen and onto Life of Brian but he’s having none of it. I’m a Brit kid (parents/grandparents and whole clan are from the Midlands) which strangely has helped with dealing with the big C. Our default position is to laugh, banter and brush off anything in life with caustic wit. My Aussie background friends look at me like I’m mental when I say ‘it’s better than a slap in the face with a wet fish’- damn you Da! Damn you!    The anaphylaxis sounds grim, I can’t imagine it- but do have a lip swelling/gut exploding intolerance to seafood so feel for you. I wouldn’t exactly pass out, but I may liquify my bowels and cease to exist.    the only up side is... um, no hangovers or food poisoning from dodgy oysters. I’m reaching. Some things just suck. you know what doesn’t suck though? Sundays. Sundays are good! Hope you’re having a great weekend!  ... View more

I danced, I sang, I laughed- Great work Phil, especially the poo joke. I feel like it should be accompanied by piano though, just to be true to EJ, and you have to wear ridiculously large glasses, at least one piece of clothing with sequins and bow tie. (An ode to the era). Hope you’re getting ready for a restful weekend. We’re eating farty pasta (broccoli) and watching a fairy movie, seems like my 5 year old has taken over the joint. I remember when Fridays were wine and cheese, long conversations and long dinners. I’m not sure if I miss those days or not, but I’m definitely hoping said 5 yr old goes to bed soon so my brain doesn’t melt from overexposure to this Disney guff. ... View more

Hi Budgie, thanks for responding so quickly, and also for your openness. I agree that Death is a natural part of life, and as a culture we tend to shy away from these conversations- I think it’s a shame, there’s so much to learn. I lost my father 3 years ago to pancreatic cancer, after exploring all possible avenues for him, he told us he was okay to go. I felt honored to be allowed to be part of his passing, and to this day, am so grateful for his candor and honesty about it all. Losing him wasn’t any easier, but we (my brother and I) feel like he gave us the opportunity to talk about it all, and those conversations really helped guide us after. Now onto less serious stuff- what are you creating with your paper quilling? I’ve learnt crochet, cross stitch and knitting and am a very bad beginner at best, but have never heard of it until I just googled it then- amazing stuff!- I have a deep admiration for the patience any kind of needle work takes. My grandmother was a great knitter, so much so that in the 70’s and 80s she was paid to knit patterns for pattern books. I could never live up to it! Would love to see some photos of things you’ve made. Cheers Claire ... View more

Hey Phil,  What’s that saying? ‘I’ll sleep when I’m dead’- it feels closer to the truth than I think they meant. Can’t sleep through, best not to fight it, instead I’m catching up on my most interesting part of the day, chatting with y’all and getting updates. It’s that or Netflix.  People are usually better than TV, usually  😉    ... View more

Hi Budgie,  Thanks for writing back and for the well wishes for surgery, I’m recovering slowly but doing well. You mentioned you’re stage 4 kidney cancer since 2012, so sounds like you’ve been dealing with this for a really long time- I’m sure you have a load of wisdom to share. When you mentioned being on the last oral chemo treatment I wanted to ask what that means, but also understand if you’d prefer not to talk about it. Either way, I’m going to ask how’s it going today and how you pass your time?  Today I’ve got a friend coming by who bakes. She bakes when she’s stressed, so I’ve been receiving a steady steam of ginger biscuits, scones, banana bread etc- which are lovely. I can have a bite but can’t eat it though without pain so Thankfully my husband and boy are more than happy to take up my slack 😉 Then I’ve got an afternoon of nothing. Long stretches of nothing. I quite like being alone so have to say I’m pretty happy about it. How about you? Cheers, Claire        ... View more

Hi Phil, Good to hear from you even if you’re feeling crap... I think we’re totally going to hit a new Cancer council record at this rate! The chemo stuff sounds... bloody awful... and there’s nothing I can say cause I’m not going through it so it’ll just sound trite- so I won’t. It does sound like you’ve got your head in a good place about it though, considering. How many treatments do you have?  Get your feelings about the drugs. I’m not sure how many pills I’m on per day but I know I rattle, I hate it, and when I try to reduce what I’m taking I keep getting gazumped more by the docs who will offer something else, but then there’s another pill for side effects. It’s a vicious cycle. It’s weird how I never really focused on being grateful for my health before this- I just woke up, grabbed a coffee and a banana, made my way into work or dropped off our son- and went about my day. Now each day is punctuated with pills. Thankfully it is temporary as you say.  Clexane- yes I had to do it at the hospital and being such a scaredy cat I stabbed my self and then shrieked, had this needle hanging out my guts and the nurse had to finish it.  Ive become more adept. I’m now on injection number 5 and it’s amazing how quickly things change.   i told Lampwork so I’ll tell you some kinda good news, my surgeon called with results and they think they got all the cancer with clear margins so now I’m just waiting on whether I need radiotherapy, but that’s pretty good news in my book. I’m still wanting to get a full PET scan cause my mind won’t rest without it, but it’s hope.  Anyway Phil, hope you’re doing a bit of side shuffle or stomp, I’m in a tap kinda mood for today. stay in touch- Claire  ... View more