September 2017
1 Kudo
Hi Moeka, Sorry to hear about what you two have been though and currently going through. You are right, our minds can get overtaken by anxious and angry thoughts. That is normal. Just this week I had a scare after 5 years of 'no evidence of disease' (and cooincidentally the weird finding was in a testicle) and my partner and I quickly spiralled into an anxious place. Is this it? Do we make plans? Do I come up with a bucket list? Why us? Why again? After a couple of days we tried to ground ourselves. We went out for dinner and remembered ways we coped the first time around: the little mantras we'd repeat, the way we tried to keep focused on the next goal only, the way we would give ourselves permission to feel crappy and angry but have a plan for getting out of those feelings. You sound like you have lots of questions. One thing you could try is writing them all down so they can leave your mind and be parked somewhere for your next appointment. Your husband could do the same. Another thing is writing in a journal or blog. It can be private or public (like here). The act of writing about our fears and worries does things to the brain we don't yet understand - but lots of research shows that it can make us feel better and decrease anxiety and worry. I would also recommend the CC Telephone support line for your husband. They may be able to connect him with someone around his age who has been through something similar. It can really help to speak to people on the other side. And last, feel free to vent here - that's what this place is for 🙂 Lots of love, B
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September 2017
2 Kudos
Hi Trevor, good on you for joining this community and reaching out. Your diagnostic journey sounds awful, it can be hard when we present with symptoms that don't fit the mold or that like something not serious like a runny nose and blocked sinuses. About what the doctor said re 6 months - that is by no means a prescription. My advice would be to use that opinion to make some immediate decisions or put some systems in place and then try not to focus on the timeline. Medicine is imperfect and doctors don't have a crystal ball - there's no telling how long you will be around. It sounds like you're taking each day at a time and trying to do things you enjoy and that make you and others around you happy - I think that's a grand plan mate. B
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September 2017
Was having a part of me ultrasounded and the sonographer noticed a spot somewhere else. A couple of days of tests and seeing a new surgeon followed. It jolted my partner and I out of the kind of comfort zone we'd ended up in after 5 years of no evidence of disease. And made me realise I need some better strategies to cope with acute stress like this. What do people find helps? Talking, meditating, breathing exercises, eating...?
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September 2017
1 Kudo
I know why people say it, and I know why I get annoyed by it. But maybe the phrases 'stay positive' and 'I hope you're staying positive' are good for us to hear even though we don't like hearing them... Thoughts?
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September 2013
Meiron and Jill, thanks for the follow up session last Saturday! It was fantastic to see familiar faces and share things new and old.
Following from Meiron's GP technique, I came across this (11-min) TED talk on happiness and framing. As we know especially, keeping the frame in a healthy and happy place can be damn hard. At the end of the talk the researcher lays down the (evidence-based) 21 day challenge of five small daily techniques.
Meiron's GP technique is a perfect example of the gratitude one.
You can watch it here:
http://www.ted.com/talks/shawn_achor_the_happy_secret_to_better_work.html
Ben
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February 2012
[ser-vahy-vuhl]
noun
1. the act or fact of surviving, especially under adverse or unusual circumstances.
2. a person or thing that survives or endures, especially an ancient custom, observance, belief, or the like.
Defining survival appears straightforward, but within cancer circles it isn't. The days are gone when your medical professional declares 'You're cured!'. Instead, careful language filled with scientific precautionary and cautionary thinking is used. Terms like 'no evidence of disease' and 'long-term remission' now dominate.
Let me say up front that I am not complaining. The fact I am even thinking about this aspect of cancer means my treatments did what they were supposed to do and for now I have no evidence of disease.
In cancer circles I get to say: I'm n-e-d
I like the new vocab because while being realistic and pragmatic it still allows for bouts of spontaneous celebratory dancing. I am technically, at this stage and time, and according to standard medical imagery and oncological understanding, cancer-free. I may not stay that way (indeed, 50% of colorectal cancers reoccur), but I am that way now and that is enough to ride the optimism bike as far as the eye can see.
But have I survived?
Not according to medical researchers, because they measure cancer survival as being alive five years and ten years post-diagnosis. This is the benchmark and the universal metric used in clinical trials and in hospital and governmental reporting.
Maybe, according to the Cancer Council, because they define a survivor as someone who has finished 'active' cancer treatment. Does my 11 months of further anticoagulation therapy count? And what about the fact I am still living with a 'temporary' ileostomy?
Yes, according to the National Centre for Cancer Survivorship (USA) that states that you are a survivor from the date of your diagnosis.
Process or end result?
The survival question really is one of process versus end result.
My thinking is that working from the date of diagnosis is the most practical. But what about the five to ten years (the time it takes for a polyp in the colon to become cancer) that I was living with cancer before my diagnosis?
I like the idea of acknowledging the process of living and surviving with cancer, and not the final outcome. The date of diagnosis is really just the date that I became aware of my cancer. My body knew long before I did - it had been fully engaged in attacking the tumour and was surviving.
Actually, my body was enduring under a large tumour load, on top of drunken nights in Chinese clubs, large amounts of passive smoking (you can still smoke nearly everywhere in China), and binge eating fast food and chocolate.
Someone that died three months after their diagnosis survived three months (and more) in my opinion. Someone that died seven years after a second bout of lung cancer survived seven years (and more). Someone having chemotherapy is surviving. And so is someone cancer-free after 15 years.
A focus on the process seems consistent with talk of a 'cancer journey' anyway. There is no need to get hung up on the end point, whether that is death or life, because cancer is a process and so is healing from and living with it.
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January 2012
I have a new life-threatening condition, and it's not cancer. My new condition was picked up in a CT scan done at the end of chemotherapy. This CT was done to re-stage my cancer, but what it actually did was save my life.
I have a blood clot, in the lungs. It turns out that cancer is an independent risk factor for developing blood clots. This means that cancer alone predisposes someone to developing a clot. Cancer treatments like surgery and chemotherapy also increase the chances that someone will develop a clot.
Read the full blog post at: http://benbbrave.blogspot.com/
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November 2011
Hi Kylies,
Wow, what a nice quick recovery! Well done. I had the same surgery but mine was open and I had some problems after it which kept me in hospital a little longer. Did you have a loop illeostomy?
I know surgeons prefer big pelvises but did you feel complimented when they said you had a nice small one?
Ben
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November 2011
Thanks guys, it was a good fun day. The run was tiring, let me tell you, and I spent the afternoon resting in bed and sipping tea.
It was worth it though and it was excellent to have cancer in young adults profiled on the national news like that.
Next year I plan to organise a whole team of orange-spandex-wearing runners!
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October 2011
Hi Adrian,
I don't have anal cancer so I'm not sure I can be of much help. My tumour was in the sigmoid and had spread to the rectum, but not the anus or anal canal.
Ben
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