Hi Phil,
Thank you. I'm sure you're just like everyone Phil. We're all afraid of the C word. It has the power to turn our world upside down. Everything before us that we were confident in, is swept away. I had a cerebral aneurysm at the age of 30. Four small children aged 2 to 8. First and only time ever, my husband was coming home early and when I called him he was not far from home. Incredibly lucky. Initially diagnosed by GP and sent to hospital.
Sent home with a stress headache and valium. Luckily my GP had asked me to come back and see her if I needed to. Next day I did. On the second day, I was awake at 5am and made my children chocolate cupcakes to put in their lunches (older chidlren) and made pancakes for breakfast. If I died, I wanted my children to have the memory of a really, really good mother. Doctor sent me off for an MRI next day. I was in terrible pain. On the third day towards evening, I said to my husband that I didn't think I would survive the night. Again, luckily, my GP lived at the back of her surgery. My husand interrupted her dinner with her family and she said she would get onto the Radiologist and let us know. At 10.00pm that night she arrived at our house. No one had read the Radiology report so she had made the Radiologist go back to work and read it. It was an aneurysm. She explained it to us and had already arranged surgery at the Alfred Hospital for later that evening. We just had to get to hospital. Not good survival rates and possibility of stroke afterwards or long term side effects from the bleed. Completely recovered with no side effects. Congenital - born with the weakness in one of the walls of an atrtery. Could have burst at any time and luckily didn't during pregnancies or child birth. So I've faced death before. I told myself I would never go through anything like that ever again. I would choose to die rather than have major surgery. I had 34 bissful years where I woke up every day, grateful for life. I saw my children marry and have their own chidren. This time, I could not give up before I tried as the eyes of my children and grandchildren were on me. My husband would never have agreed to not try to overcome this. Before surgery, I hoped for a car accident in which I would die, so I did not have to face this. My courage was at an all time low.
There's a couple of quotes, but i have many that I love, that helped me. "Always seek out the seed of triump in every adversity." Og Mandino. "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid but he who conquers that fear." Nelson Mandella.
Over the past 10 years I took up the hobby of lampwork. It's making glass beads. I've also done glass blowing and kiln formed work. You use gas and concentrated oxygen to mix a very high powered flame to melt your glass with and shape it. My first kiln was delivered after waiting for over a year for it, around the time of not quite being diagnosed. I haven't touched Lampwork, used the kiln or done anything with glass for the past few months. I've been afraid. There are two known causes for an adenoid cystic carcinoma. Asbestos and heavy metal. I wondered if I had done this to myself. Was there heavy metal in the fumes of glass making? I have a reall good ventilation system but still worried. I've researched but have not found any link so today I'm going back to glass bead making. I also need to get back to this for the hours in the day drag slowly and give me too much time to contemplate about what lies ahead.
You have to anneale beads in a kiln to make them unbreakable. As I didn't have a kiln and was still learning, I made tree necklaces for my garden. I thought I'd make one for my Surgeon who did such a great job in correctly diagnosing me and for the brilliant surgical outcome. Sorry for the long explanation Phil but as humans, we are so much more than our diagnosis or our current status. The nurse I saw after Radiation encouraged me to go back to lampwork. She's going to bring in some glass ear rings she bought and I'm going to bring her in some beads. There is so much kindness in our world, yet we sometimes forget how important kindness is. I found this as well when my mother was in a nursing home and it was a really hard time. The kindness of strangers can bring us to our knees in gratitude. After surgery, in recovery an unknown woman, possibly a nurse, gave me a tube of paw paw cream and told me to put it on my lips as often as I could. Great wads of skin came away from my lips for the next few days. Painlessly. No cracking or bleeding of lips at all. I was so grateful to that woman and I may never know who she was. I keep a spare tube of paw paw on me at all times now in case I see someone who needs it!
Your reply this morning, filled me with gratitude Phil. Thank you again. I've learned over the years that it's really important to talk. We release our anxiety, fear and sadness. This is a great forum for it too because I can talk to people who are in the same situation, facing a tremendous battle and all the trauma surrounding our diagnosis. I have great family support but no one wants to talk endlessly about this and I don't want to overload them about my worries and fears.
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?
