November 2009
Kym,
I hope you are feeling better today. Your world has been turned upside down. Your nearest and dearest can help only in their usual way.
Only someone who has had prostate cancer can understand what you are going through.
I found what helped me was lowering my expectations of myself and others, either by communicating/managing them - bummer I know (it would be great if someone could do this for us)! Initially, I had a lot of anger - I felt victimised by the disease - it ruined my holiday plans, my husband plans possibly my fertility and I was out of work. I wanted to be around people but on my terms not theirs incl my husband. It's about control and power struggle. It is really hard for people to see it that way because on the outside you appear ok.
On this forum you can have a "whinge" with us - that's what we are here for because "we get it". Empathy is hard to find these days.
You have been through a lot (and still are) so your feelings/reactions are a moving target and adapting to your new life. Some things will be same but you also need to see it as a time for change - eg. work hrs, alone time with your wife and spending quality time with the children. Perhaps you need some quality time for yourself.
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November 2009
Graham,
Firstly - it sucks! Take it one day at a time. I hope you are not suffering too much and can manage to still do some of the things rest of us take for granted.
My friend survived an additional 6 months despite doctors diagnosis -(she died in May this year). She spent Christmas with her family, walked (very slowly, almost breathlessly) along the beach and had many visits from family and friends. She managed to receive most of her care & medication from home (despite bouts in hospital).
Please make the time to do the things you enjoy while you can - eg fishing, watch, horse and car racing. You might also want to think about a scrap book with images or video. Some people don't get the chance to prepare for death (its awful and morbid I know, but I'd be lying if I said the thought never crossed my mind). Now I see each day as a celebration of life. I hope and pray, it is not your time.
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September 2009
Hi Coke, I too hope that things went well.
Glad that you have retracted your earlier statement, Harker. I don't know whether they should have told you about the writer's group, they don't let you get away with anything.
Anyway, good luck with your "journey", and yes, humour is certainly the only way to go,
craftyone
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November 2009
I have found that when discussing Rob's cancer with people, I say to them 'We're feeling positive about things'.
Past experiences have shown that if I tell people what's really going on, how he's doing or how I'm feeling, things go all awkward, they don't know what to say and it all goes to hell. So I'd rather put on the forced smile, tell them that we're being positive and everyone goes along their merry way. Just easier that way.
We're really only honest with family and those really close friends.
I love the idea of being hopeful and I think I'll use that from now on. I agree, I've always challenged the 'always positive' mantra as I don't think it's particularly healthy striving to be always positive. We're human, we feel different emotions for a reason and if we weren't scared/angry/hurt facing our own mortality, then you're denying yourself to be human.
Life is a rollercoaster and our emotions are the carriage we ride in.
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September 2009
Hi Everyone,
Ahhhh Dex of the big red head as we refer to it in our house. Sorry but my husband is king of humour deals with everything!!!
My husband also had a lot of fatigue. He has just finished 12 out of 12 scheduled treatmeants. Nausea was never much of a problem, but I always tried to schedule a coffee date with friends on disconnect day (which was day 3 for us) so he never felt embarrassed about taking a little kip in the arvo. by the time I had picked up the kids from school and stopped for a phantom supermarket visit, he was refreshed and ready to face the girls. for some reason he felt embarassed about feeling tired. Thursday was day 4 and worse again but I would spend the day with all the paperwork so he could nap at will.
I bought him a model helicopter to build also so he could have some down time with a reason. My youngest would help him with that so it was also a good excuse for them to spend time together without being to active.
Isnt the section on here for family of people affected by cancer a wonderful support? It is the first place I have found for us to talk with others in the same predicament besides the oncology clinic and they are often to shell shocked or putting on the face to share much. And being able to hear from others who have had or have cancer themselves really really helped me to understand what my hubby was going through.
Keep reading Nikki as there is always something to help.
Alana
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August 2009
When I was 7 I fell off my bmx and broke a front tooth, then spent many hours over the course of a few months in my dad's dentist-mate's chair, having a nerve drilled out and everything fixed up.
It was the mid 80's and he was apparently a very fashionable dentist, and he had what I imagined to be a very fashionable painting of a busy day on Sydney harbour, done in bright pastel colours, suspended above his dentists chair.
My memories of just about everything from that period of my life are gone, but I can remember the fine details of that painting very well.
Unfortunately the oncology ward I spent a lot of time in didn't have fashionable paintings, but I did have a view of a construction site (the new part of the hospital) and I think that much more entertiaing, but not very memorable.
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August 2009
Found I was to be close to the sailing club Saturday, so decided to call in even though the forecast was not great. Problem is that the forecast can be quite variable, so what it is at home can be quite different at the club.
As I drove along the shore, the water was full of white caps under a gusty Northerly. White caps generally mean about 20 knots of winds - approximately 40 km/hr. If it is steady, then that is not to bad - they sail in that a lot on the Lakes in NSW. But down here, at the top of the Bay in a Northerly wind coming through the city buildings it is anything but steady. The forecast for the Bay was 15 - 20 knots rising to 20 - 25 in the afternoon with gusts to 35. That means that the gusts can be 40% stronger than the average - expect gusts up to 50 knots. Way above the boats capability let alone mine.
Discretion being the better part of valour, I didn't even get the boat out. Some of my friends did and had their boats rigged, lots of discussion about whether to sail or not - boat breaking weather. The Race Officer read out the forecast plus the standard that it is at the discretion of the skipper whether to sail or not. Some hardy souls were going anyway.
One of them - good boat, I used to be competitive with him until he built his new boat as a recovery exercise following his surgery - headed out. Wind swinging from North East to dead North, lots of bullets - small localised gusts, wind largely straight off the shore. About a hundred meters off the beache, he got hit by a gust, the nose of the boat pitched down loading up the mast which kinked about half way. Masts can do that and flick back, he straightened up, so did the mast, then it kinked back. As he limped back to shore the mast flicked from side to side at the kink, quite flexible but no break on the outside. What the inside was like, who knows? Hardy souls caught the boat as it came in, tipped out the water and carried it onto the shore. Fortunately nothing more than a new mast section and a day and a half's work setting it up. If it had snapped at the kink and gone through the deck - it would have been really expensive.
Those with their boats still on shore de-rigged and put them away - discretion is definitely the better part of valour.
There was a time when I would have gone out - I know my boat, I know the mast, it would take it, but these days - why risk it and yourself.
After cancer you look at things differently.
Sailor
A wet sheet and a flowing sea,
A wind that follows fast,
And fills the white and rustling sail,
And bends the gallant mast. Allan Cunningham,
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April 2012
Hi All,
Just wanted to give you a quick update. My brother has had 2 checks and they came well. One showed a small dark spot in the other testicle but it turned out to be a calcified mass so it was meant to be ok.
Other than that he and his partner froze some sperm just in case as they want to try to have a baby in the next year or so. The chemo went well too. Only one session.
Hope everyone is well.
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