does it help to read other people's stories ?

Occasional Contributor

does it help to read other people's stories ?

I've been posting to a blog since the day of my cancer diagnosis. It has certainly helped me ! Once an issue is written down, I can stop worrying about it (sort of).

 

I read a couple of books written by people with cancer. One made me think, He's in denial, that's pointless. Another showed great attitude but was by a "survivor", a post-cancer patient now with expectations of a "normal" life ahead.

 

My own cancer is aggressive & terminal. 50% of patients are dead within 12 months of diagnosis. I have now passed that 12 months so am beating 50% of other people with GBM4 (my brain cancer). But it's been a tough 12 months. Plenty of ups and downs. All documented as honestly as possible.

 

Perhaps -- if you or someone you know is in early stages of brain cancer -- you would like to see what the future could be like ? One person's experience, anyway. I don't know... for myself I'd rather write my own blog that read someone else's 🙂

 

But if you're interested, it's at https://notdotdeaddotyet.blogspot.com/ ... latest posts at the top. The cancer story starts at https://notdotdeaddotyet.blogspot.com/2017/08/city-to-surf-half-marathon.html and continues "up" the screen.

 

Reading the blog is free. There's an easier-to-read ebook available for a few dollars. If anyone actually asks, I could probably prepare a printed copy (it's 300 pages).

 

Anyway, if any of it helps -- I'm pleased 🙂

 

... Nick

 

 

 

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Cancer Council Team

Re: does it help to read other people's stories ?

I think writing is one of the most amazing things in the world, it's incredibly therapeutic and I my favourite activity is actually reading.

 

I've spent no small amount of time on your blog this week, thank you so much for sharing it!

 

I hope we'll see more of you around these parts @NickL Smiley Happy

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Contributor

Re: does it help to read other people's stories ?

Hi Nick,

I am 46 and am also diagnosed with a GBM4 this happened June 2017. I have had two debulkings done experienced 6 weeks of chemotherapy/radiotherapy  gone through a lot off other stuff on the way and now I’m just about to start my 16th cycle of increased chemotherapy.

I like reading other people’s stories and have no issue discussing my own so I will check out your blogs.

 

Take care

Colin

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Frequent Contributor

Re: does it help to read other people's stories ?

Hi NickL,

 

I too wrote about my journey in emails (I called them "Communiques", 17 in all over 9 months) and set them to my family and friends. I did this for 2 reasons. First and foremost was for self-therapy. Secondly was to avoid having to repeat myself 50+ times to each person. Three reasons, there are three good reasonsfor recording your journey through cancer diagnosis and treatment, 1. self-therapy, 2. avoid repetition 3. so that I could remember what happened, 4. to achieve something while the time passes. "Amongst our reasons..., Cardinal Biggles...?" (reference is to Monty Python and the Spanish Inquisition).

 

I havn't made my Communiques more widly available because I didn't hold back on my criticism of medical practitioners involved in my treatment. For example the surgeon seemed to flip-flop between recommending partial and total gastrectomy - in the end I told him that he was the specialist and should do what was in my long-term best interests. And then there was the time while I was in hospital following my total gastrectomy, a trainee doctor took 2 attempts to fit me with a replacement cannula in my left arm, then took out my pain management line from my right arm before trying twice more to fit the new cannula in my right arm, before finally being successful fittning it to my left arm.

 

If you haven't tried it already, start writing now. Write about everything related to your emotions, treatments, physical condition. It will be fascenating for you, and even for society, in the future to look back at what we had to endure in our battles with conditions that will, eventually, be regarded as simpler to treat than the common cold.

 

Best wishes to all,

Rick

New Member

Re: does it help to read other people's stories ?

I just lost the whole story I posted.   I wanted to do this journey alone and I have.  Yet as time is running out and I'm nearly 2 years past my expiration date... the memory loss to where I'm incapacitated yet still I refuse to let anyone watch... Plus I sure don't want to feel guilt for the pain I see in others eyes over my death.  It is mine after all.  

 

Lately I've changed tremendously.  There is no one I want to share this with except someone else on their way out.  It'd be unethical to let anyone new in and the day I got my hopeless diagnosis I told everyone to FO.  

 

Yet this song.... I never married, never had kids...so there's no one to be the one,  this is an acoustic version of a pretty new song.  So I share it with any of you that read this.  I'm 48 now.  I just hope there's more.  For a time I finally believed without doubt yet somehow my faith dissipated.  I guess I am becoming really afraid when I thought i had acceptance.  At monents i feel terror now like i have never known.

 

 

Theresa

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Occasional Contributor

Re: does it help to read other people's stories ?

Hello Katekat,
I write for my own self-therapy. If other people appreciate the blog, that's a bonus. Thanks for your comment.
… Nick
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Occasional Contributor

Re: does it help to read other people's stories ?

Hello Colin,
I'm 66 and had just the one set of intensive treatment (a few months of surgery, radiation, chemo). I consider myself to be lucky -- relatively speaking. I hope you can get a period of stability.
… Nick
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Occasional Contributor

Re: does it help to read other people's stories ?

Hello Rick,
I've had issues with various specialists -- communication issues, never with the recommended or actual treatment. But it's not a good time to accept anything other than "the best".
An essential part of my writing "self-therapy" is so that I can then forget it! I like to forget the past so that I can concentrate on worrying about the latest issues 🙂
Good luck with your future treatment.
... Nick

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Occasional Contributor

Re: does it help to read other people's stories ?

Hello Theresa,
My own fear of death is a real bugger -- made less by a feeling of complete disbelief... this can't be happening to me!
Dying is a very personal thing but I know that other people are both curious and sympathetic. Rather than upset people who really do care, I post to my blog; people can choose to read it, or not. Mostly, though, writing it all down makes me feel a lot better.
Thanks for sharing, thanks for sharing the song.
… Nick
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