Hi Phil, I’m happy to announce he has achieved sainthood status for today. As for the name, it’s got nothing on Lampworks name but each backstory has it’s own merit. Many moons ago I decided to go on a pilgrimage to India to meet HH the Dalai Lama and do some volunteering for the Tibetan community in exile. I went for a 6 week visit to Dharamsala, a northern Himalayan town and when I got there a few things happened, first I realised the Dalai Lama was teaching in Europe so that was stuffed, and second the volunteering I’d wanted to do fell through, but in its place I got offered to teach blog writing to Tibetan refugee women, teach kids IT at the local school and then do daily English classes down in a slum village at the bottom of the mountains. The experience broke me. I hadn’t been exposed to the kind of suffering or challenges I saw there before, and so when I got home I decided I was going to take an extended leave of absence from work to go back and live there for a year. I managed to sell the idea to my workplace (a university) as a worthy academic experience that I could write about- Tibetan refugees in the worlds most beautiful cage, using limited resources to build technology and education resources which would give a community a voice. I was to write articles about the experience. It turned out that ‘the break’ would be multiple things, a break from my normal life, a break in what I thought mattered to me, a break from what others perceived as ‘Tibetan mysticism’ as I explored the underbelly of a remote refugee community, the name basically became everything. Now I use it to remind myself that nothing is ever as it first appears- missed opportunities can become the greatest teachers. Through the work I did, I returned back to India again every 2 years to work with the Tibetan community, I got to work with extraordinary people doing extraordinary things with very little, I got to meet the Dalai Lama quite a few times, and it would also lead me to my husband. Things I’m eternally grateful for! Now Phil, you have to share more about your story- I read how your name came about, but I wonder do you have any other nickname you are known by and why? The crew Dalai Lama Dalai Lama Tamkey- former Tibetan monk and now apparent Saint 🙂
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Hi Lampwork, I read your post about your name and the glass work that you do- such a staggering amount of stuff to deal with and yet, still an open heart and ability to help others. You’re amazing! I really really love your beads by the way, absolutely beautiful! You’re right about getting stuff in order, though because I’m still recovering from surgery 3 weeks ago I’m not able to do much- but my ‘going for a sainthood award winning husband’ is currently dusting and getting ready to vacuum the place. I’ve prewritten a shopping list with a meal plan for the week, we batch cooked up some stuff during last week for the freezer and now all I have to do is pack. I’m pretty nervous about the surgery but I keep reflecting on my dad who got a terminal diagnosis 3 years ago with pancreatic cancer who wasn’t even offered the option. I’m lucky. Really lucky, and ready to dance with the cancer until my feet hurt. Back in the day I’d dance until 4am so I know that stamina is in there somewhere. Thanks again for your kindness, and sound advice, it means the world to me.
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Hi Phil, That photo is beautiful! Happy to hear that there’s glimpses of joy in between the treatment. Last night my little boy woke up crying in the night and didn’t want to sleep alone, we’d usually try to get him to go back to sleep, but I though you know what- he probably needs as many hugs as I do, so we all got into bed at 12 and talked, finally falling asleep early this morning and now I feel better. I’ve stared into the abyss, had all those teary conversations, looked at the best and worst possible outcomes and now I’m feeling like ‘alright, this is getting boring let’s just get on with it!’- which, is perfect timing as I head into surgery on Tuesday. Today is a much better day than yesterday and that’s due in part to you and Lampwork- thankyou for taking the time to respond even when you’re going through your own stuff. I’m reminded each time I come here of the very best in humans, our endless capacity for love and kindness, it’s enough to get me outta bed in the morning. Thankyou 🙏🏼 Claire
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Goddamnit woman you just made me cry again, but those warm tears of someone giving you a good hug and a bit of kick up the butt too. I’ve had the funeral/partner convo with my husband too, I made him promise he’d spend at least a month grieving and another learning how to dance because his sense of rhythm is atrocious. One foot in front of the other today, tomorrow I’ll come up for air and start again- I knew this would come, and no doubt will again, it’s good to be able to say it all out loud. Thank you so much for your kindness. Wishing you all of the good stuff back, I’ll keep you posted, and please promise to do the same xx
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Hey Phil, How are you today? I hope faring ok? Today has been a dance and a tustle. I saw my GP for preliminary CT results and it looks like there’s a legion on my spine, and lymph node changes. Add to that another CT scan, A PET scan, and my hyperthyroidism and thyroid gland requires surgery too. It’s a lot, and I still don’t have my formal staging so I’m feeling really really overwhelmed. Today my 5 yr old son crawled up for a hug and for some reason the smell of hair triggered this whole thought process about not being around to see him grow up. It’s a possibility I’ve toyed with but today it came crashing in, like the full weight of it is here. I’m not scared, I’m sad, and worried for my husband and son. I’m also trying to be logical, and not get swept up in fear or uncertainty but it’s hard. There is nothing to do but accept it as a possibility and focus on what is also possible. Crying feels good though, just for a bit. Tomorrow will be different, it always is right?
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Hi Lampwork, hiw are you faring today? I’m not sure if I responded to your last post, it’s been a flurry if appointments and I seem to be losing track of days. I just want you to know that I’m so moved by your words and honesty, sharing the fear about your mouth and neck. I’m sure you’ve had people offer unhelpful platitudes or just avoid talking about it altogether- it’s the stuff we shy away from...I can’t know how you feel so I won’t do that, but I will acknowledge that the change is real, it’s going to be difficult, and I think their will be loads of emotions to work through. It’s like the cancer gets a second bite - people who aren’t in it just don’t understand. I can’t do anything but offer an ear and say let it all out, say what you need to say here- there’s no advice or judgement, just a bunch of other people muddling through together. I’m so glad we have each other xx take care and reach out if you need.
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Hey Kilroy, sorry to hear about the confusion with your diagnosis, it must be really stressful. I’ve had similar conversations in that I had no markers, no symptoms, cysts were benign, it was only after a Lletz procedure where they checked my uterus they found the cancer. Even now, I’m a prelim diagnosis of stage 2 endometrial cancer but not formally staged. My CT scan shows a lesion on my spine and lymph node in pelvis affected, and formal staging won’t come until 2 weeks after surgery. It’s confusing, stressful, frustrating, but mostly scary. The only advice I have is to call your specialist and say ‘ I’m scared, I need some clarity so I can make plans and mentally prepare’. I get the feeling these specialists do this stuff all the time and sometimes forget that we mere humans don’t have the background medical knowledge to know what warrants concern or not, and so we understandly get worried. We’re all here if you need to chat, it’s a beautifully supportive community xx wishing you clarity and strength on your journey, Claire
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Hi Phil, So appreciate you taking time to share your story with me. I’ve pondered the transition from surgery and being ‘cancer free’ to knowing it’s just there, out of eyesight but lurking. It scares me- I think that’s the hardest thing, knowing this is the new normal is something so strange to get my head around, I haven’t yet. It’s going to sound hippyish, maybe full blown ‘peace love and mungbeans’ but I also feel that we’ve been given a great gift. We get to choose how we react to mortality, to pain, to fear- we see it up close and get to decide what we want our story to be from that point onwards. It doesn’t take away from the pain, the uncertainty, the grief of ‘what could have been’ but instead, gives us right now. That’s confronting as all hell, but it’s real. Airs and graces have gone, we’re all just people trying to get through each day, but I’ve notuced one other thing- it brings out such immense compassion and kindness in others. I’m overwhelmed by it. For me, I’m seeing this as a dance rather than a fight. I don’t want to be at war with myself, cause honestly I reckon I’ve done that for too long. The dance allows the disease and I to share the song and the steps. There are gonna be days when I hate the song, and I’m stumbling over myself, but days like today- my head is back staring at the sun, the beat is real and I’m feeling it all and I’m happy. Am I nuts? I bloody well hope so! Everyone has their own way to process this I suppose, and what I love is that there is this amazing space in the world (this forum) where we can. It gives me hope. Im hoping your chemo isn’t too rough and that you get to rest and find strength for the next bit, and please keep sharing what you can, I’m so open to learning and sharing with you, talk soon, cheers claire
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Last week I got news. It had a Big C in it. I remember the specialists mouth moving but my brain had flitted off into the stratosphere chasing that word that fills people’s minds with sadness, fear and regret- and then I laughed- like some crazy maniacal nutter and calmly but loudly said ‘I knew it, I bloody well knew it, my intuition was screaming something was off and I knew this was coming’.
Trust your gut, if nothing else comes of this- please trust your gut!
Strange to be happy about being right, but anyone who knows me well, knows I’ll take my wins any place I can get them.
So now I stare into it- this thing called cancer. It’s day 5. Stage 2 endometrial cancer (it’s an initial diagnosis I’ve still got CTs and formal staging to go).
This is what I know for know. I’m not ‘fighting’ anything, I’m embracing this as the natural order of things. Some of us get it, some of us don’t. This isn’t war, it’s learning and practice, possibly the most significant opportunity to practice what I’ve been preaching for the last decade or so. As background my husband is Tibetan and was a Buddhist monk for 19 yrs, I’ve been practicing for 20 and we run www.facebook.com/LojongMeditation together.
This is just a dance, an embrace, a moment like any other, and either I will or I won’t be fine...in the long run, the dance won’t matter.
Ultimately what matters is whether throughout this journey we know love. I’ve had people ask me ‘what can I do to help?’ ... the thing I need from my friends and family is to know they’ll be okay, that they’ll grab the people they love and let them know it, they’ll try to be kind, (it’s a struggle for me most days so I’m aware the advice is ripe 🤣 ), they’ll eat well and with gusto, laugh loud, don’t take anything too seriously and for the love of all things-enjoy what they can. I’ll be doing that, whatever comes.
If I don’t respond it’s cause I’m dancing like it’s 1999. (Please young people google that reference).
Big love, until the next urge to write dramatic prose takes me. You can connect with me on FB or insta @Lehiatus
#cancer #cancerdance #dancer #cancerlife #cancerawareness #love #hope #mindfulness #meditation #joy #truth #tibetanbuddhism #buddhism #life #compassion #lifelessons #live #awareness
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Hey Caroline, it must be the way this thing goes, another 2am wake up for me also, pain started it then it rapidly descended into mental gymnastics. Tell you what, my body might be cactus but my brain is on fire! Re surgeon-I’ve never understood the way this stuff gets communicated, or the wait times. It’s like it’s designed to torture. I’m hoping in between the waiting you’re getting rest and are surrounded by those you love. My days have become couch, Netflix, a tiny bit of bad dancing to keep my energy up and trying to cook good food, though I’m losing that ability cause of tiredness. Today I’m off to the specialist and ECG in prep for surgery. Keep me posted if you want to, I’m here xx
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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.