I've really enjoyed reading the posts between you and Claire. I've drawn so much from following this thread. The nature of this disease... it can be so destructive, but I can see it bringing out the best in people too. Hmmm, Is it? I think it's changed me for the better. Maybe it's just me and everyone else was already a better person before cancer.
Do you mind sharing the meaning of your name, Lampwork54?
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.
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 🙏🏼
That is the best news I've heard all day! Every moment is so precious right now. There's a great deal to be done between now and Tuesday. Firstly, eating really well and doing everything you can to make your body strong and ready for Tuesday. Clean the house from top to bottom - I felt anxiety cleaning really helped get through days. Packing. Cooking. Whatever it takes right now to get you to Tuesday. Wishing you the best outcome possible.
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.
That was an epic story. Makes my cancer seem like a common cold by comparison. Don't stop fighting. You've still got a lot to give.
Your beads are awesome. Such a cool hobby. My main hobby is my guitar(s) and writing songs. Lately I've been writing short stories too. I think writing forum posts now counts. I'm also into cars and motorbikes. Unfortunately I have had to give up rallies for the rest of the year and I doubt I'll be able to ride the bike in Canberra winter's with chemo going on.
Now I have my treatment plan mapped out for the rest of the year, I should be good to jump back in the rally car next season. At least I can still play music while doing chemo.
Your turn... Le hiatus, as in french for the hiatus? Is there a story in there?
I'm back home now. Weekend holiday is over. It was very rehabilitating for the wife and myself. But now it's back to worrying about, work, bills and cancer treatment. Chemo starts Wednesday... Ho hum. So I need to pull my socks up, put on my stiff upper lip and find a bullet to bite on. Time to just get on with it.
Let us all know how hubby is going with the sainthood award.
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?
I am not a cancer survivor, but I have been studying disease for the past 25 years and have been able to put my ankylosing spondylitis (rheumatoid arthritis of the spine), a suposidly chronic condition, into remission for the past 15 years. What I learned is that poor overall health is the root of almost any disease. Heal the body, heal the disease. Functional medicine camps argue that two things all disease share in common is acidity and poor circulation. It really makes sense. All things in nature are alkaline...the air we breath, the ground we walk on, all the trees, plants, animals and microorganisms. Even newborns are born in an alkaline state, at least until they are exposed to acidic foods typical of american diets. Acids are produced in the form of cellular waste, which are excreted through the kidneys and skin through lymphatic fluids that our cells are bathed in. Adding to this acidic waste with acidic foods (anything other than raw fruits & veggies) overburdens our filtering ability, and sets the stage for stagnation and disease. Acids burn tissue and acts as a coagulant, which impedes blood flow to deep tissue cells that need nourashment and waste removal. This is poor blood circulation, toxin build up and hypothermia. Is well documented that all cancer patients are acidic and have low body temperature, ideal conditions for cancer cells to thrive. The Fourth Treatment for Medical Refugees ($8 on amazon) is an absolute must read (and an easy read) for all cancer patients. It will literally open your eyes and inspire tremendous optimism in concuring your cancer. It is written by Dr. Nobuhiro Yoshimizu, director of a the Neruosurgical Center at Yokohama General Hospital and founder of the Nakamachi Garden Clinic. He is a functional medicine specialist, meaning that he heals the whole body to fight cancer, and has amazing results. Dr Yoshi states that we all have between 3000-6000 cancer cells in our bodies at any given time, and that our immune system begins to lose control over theses cells when our immune system is compromised by poor life practices. He focuses on raising the body temperature (biomats), irradingating cancer cells with infrared lights (red lights in any sauna), alkaline foods (raw fruits & veggies), detoxing the intestines, and shitaki musroom extract. Patients at his clinic remain on their chemotherapy drugs while at his clinic, but the dosage is reduced by 90-95% due to resultant greater deep tissue absorbtion and result in almost no side effects. Second must read is Reversing Aging by Sang Whang, who is basically a biochemist (also a quick easy read), who basically treats disease from a scientific standpoint, emphasizing balancing the body's chemistry. Together, both books support eachother. Yoshi gives the how, whole Sang gives the why. Last, Dr Robert Morse & Dr Bergman are must watch videos on YouTube. True health gurus that see the bigger picture of health and disease. Good luck!
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