July 2009
I liked the bit about all boys going through a plastic model building stage without ever really wanting to. I remember thinking it wasn't one of his best books, but thats probably reflective of my state at the time... might be time to read it again.
I like your analogy between Bryson's ability to recognise his own special powers in others and ours... thats something to think about.
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July 2009
Hey Julie,
We were going through our illness at the same time! Its amazing how much difference a simple urine test made for both of us.
Steve
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July 2009
Hey Michelle,
The oncology sign still freaks me out. The moment I had to walk into that ward carrying an overnight bag will live with me forever. I'd been out of hospital from major surgery about 2 weeks when I was called in for chemo. At that point I'd had surgery in another hospital and had only been handled by a GP and surgeon. I hadn't seen an oncologist, but I was really keen to get everything underway because I had a pretty rare case that no-one knew much about other than 'its really agressive'. Later I worked out that agressive can mean treatable, but initally all anyone would say is 'you might not want want to know too much more...'.
I was feeling great despite the fact I'd just had major surgery. They'd removed all of the cancer that could be seen in me (a large tumor), my energy was returning and I had no nausea for the first time in over 6 months. It was the middle of summer and all I wanted to do was go to the beach with my family.
The hospital called and told me I had to be admitted for a day or two to be assessed for chemo and that this would happen in about a week. The next day they called and said 'please come in right now' which freaked me out, but I called back and found it it was just because a bed had become available and they wanted to fill it asap.
I'd been diagnosed about a month before and I'd been through all sorts of thoughts about what the future may hold, but walking under that oncology sign still hit me like a ton of bricks. It just felt wrong. I was led to a 4 bed room with 3 other people over 70 years old (2 on respirators and 1 with advanced dementia). It felt completely surreal and highly disturbing. Amanda was with me and I told her to go home because there was just no point in her going through it too. I spent the rest of the day there, lying on my bed in my relatively colourful clothes and sneakers, with product in my hair and more colour in my face than I'd had in about a year. Every few hours a nurse would come in and check on everyones meds, whenver they got to me they'd say 'are you sure your on NO medication? oh, well that'll change'.
Later that night I was moved to a private room, which was a massive relief. I'll never forget the first few hours I spent in a shared oncology-ward room either. I found out later I'd been put in with the sickest people there while my room was being vacated (which had taken about 12 hours longer than they'd thought). I ended up staying in hospital for 10 days, the first 5 were just to have a series of tests to determine if I could handle chemo or not, then 5 days of actual chemo. I looked very out of place during that whole time, but once I was tethered to a drip people stopped treating me like a visitor and telling me off for using the patients-only tea and coffee.
Thanks for sharing your story.
Steve
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July 2009
Well you know my story Amanda, but I'm posting it anyway.
In about June 07 I was told by my GP "you're really sick" after receiving almost no blood results that were within normal range (I failed 39 of the 45 tests he'd run apparently). I'd gone to him because I'd been feeling really sick, so in some ways it was reassuring that it wasn't in my head, but really we both knew something was up. I'd been getting night sweats and nausea, etc. but that didn't seem to raise much interest with the GP or the specialist he referred me to.
As my red blood cells were low they decided I was losing blood from somewhere and it must have been from within my intestinal system. So I had every sort of blood test and *oscopy available, including the highly expensive capsule edoscopy (swallowing a pill sized video camera). By Decemebr they hadn't found anything and my GP wouldn't look at me because he'd referred me to a gastroenterologist, while the gastro was 'waiting for more symptoms to develop' (i.e. giving up).
So I went to Amanda's GP (at her insistance - he worked at the same practice at mine) and he gave me a standard on-the-spot urine test. He found blood in my urine and referred me immediately for a CT scan. The CT found a 10cm+ tumour in my pelvis which was squashing my kidneys agaist my back and making them bleed. My bladder had about 10% of its normal capacity and I had a partial bowel obstruction which was threatening to become a full obstruction. The GP couldn't believe I wasn't in excruciating pain.
I had a fast growing and agressive cancer and it was questionable wether the tumour could be removed or not by surgery. Luckily I had a very reputable and skilled surgeon remove it about a week later and the rest is another tale, had it been left any longer things might have been a different...
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July 2009
I read that book during chemo too. I had 5 day sessions and I spent as much time reading as I did watching the pump. By the end of it I was programming the pumps myself.
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July 2009
Hey Harker,
It was hard for me to write about my family too, I've never really spoken to anyone much about how they've been, other than Amanda, but she was there through it all anyway so she doesn't really count.
Part of me feels bad for putting it out there (especially with my photo attached) and I think that part will always be there, but I've learned that I need to do these things and that I have as much right as anyone.
Your right about the therapeutic value of writing. I'm definately someone who works through things by writing them down.
Steve
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July 2009
Hey Harker, we must have posted almost at the same time last night!
I've just spent hours thinking about your post. I had the same issue with my mother as you had with your parents, only it manifested itself if different ways.
The first thing she said to me when I told her about my diagnosis was 'well I think your father handled it particularly well'. He had died from cancer about 2 months earlier and he'd kept to himself about it, I didn't know how serious it was until about a day before he died (and she didn't really know until then either).
I was completely open with everyone about my issues from the start and she must have seen this as a sign of weakness in me. I think that deep down she thought that dad deserved some sort of reconitition for what he'd been through and that I could provide that by being a complete mess over having the same thing.
I couldn't have a conversation with her about anything without some kind of reference or comparison to him being brought up. She was quite offended when I refused to use his slippers and dressing gown during my first hospital stay (which involved a fairly large and risky operation).
The gravity of the situation must have hit her about a month after I was diagnosed and had just finished my first round of chemo. I'm not sure what did it, perhaps coming to visit me in the oncology ward for the first time, which was as I was getting ready to leave after spending 10 days there (I'll never forget walking under the big 'Oncology' sign for the first time with an overnight bag). But at that point she decided to take 3 months off work and come and live with us.
I spent a lot of time with her during chemo and really, it was completely for her benefit. She still talked non-stop about my dad, but also started telling me about every single death story she'd ever heard of ('so and so' (a 90 year old friend of my grandparents) died, 'did your hear that Sir Edumnd Hillary died' (I'll never forget that one) etc.). She also told me about all the symathetic conversations people were having with her (people that weren't talking to me). I think she'd resigned herself to the fact that I wasn't going to make it, even though everything (bloods, scans, oconogists opinions) was overwhelmingly positive. She was building herself up for the next stage of her personal tradegy and had no-one to talk to but me.
To me she was clearly mentally ill at the time and needed help dealing with what had happened with my dad. But all her friends and the rest of our family (including my brother) wouldn't deal with her, and she refuse professional help, so she came to me (and I let her). When I look back now I can almost laugh at the irony of her building herself up for my death, not only infont of me, but exclusively to me.
She now tells me she didn't handle things well when I was sick. I tell her it doesn't matter and it doesn't. Its over now and I can't change it, but more importantly I've realised I can't change her and I can't fix her problems.
Like you, I've now feel like my life is the best its ever been. I'm healthier than ever and I can see more value in everyday things than I ever knew existed. I also know my own territory well enough now to know when lines are being crossed.
Thanks for your post Harker. Your a beautiful writer, keep it up!
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July 2009
Hey Nikki,
I've been that another way this group could work is by establshing its users online identities a bit more.
I'm not saying that people should actually identify themselves, but maybe we could expand on our profile pages a bit in that way that I2y or planet cancer has (i.e facebook style) by adding photo albums, message wall, favourite movie/song lists etc. Maybe we could also add some kind of signature to our messages that gives a basic summary of why where here.
I know this sounds a little inane but I think it could add a bit of value as people will get to know each other better and new users will be able to get to know everyone more quickly.
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July 2009
2 Kudos
Hey everyone,
I know this is an issue for a lot of cancer survivors and it sure is for me, so I thought I'd open up a discussion on it.
Basically, I feel like most of my family and friends dumped me through the cancer process and I'm not sure how I feel about it. I haven't spoken to half of them since I was in treatment 18 months ago, or before then, and I'm sure that some of them don't even know if I came through ok or not. Obviously my family know, but I still haven't spoken to a lot of them about it.
I now feel really uncomfortable around the people that distanced themselves when I was sick. There's a massive white elephant in the room when they're around and I feel like I didn't put it there (and that I shouldn't have to deal with it).
When I first got through treatment and got the all clear I was so excited to be healthy again that it didn't affect me. After a few months I got angry about it and recently I realised that I don't think I could stand to be around most of those people now anyway.
My life is moving on and they all seem to be stuck in a world that revolves around material things and superficial relationships. Its sad though, to realise that I was part of all that once too and that it all means nothing at the end of the day. But I'd still rather have that realisation than not!
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July 2009
Congratulations dunedigger! I'm glad to hear the operation was a sucess and its great to hear your up and about.
I've just read this post from the start and it makes quite a story. I'd never heard of the yttrium microspheres before either - very interesting!
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