I agree with some of the answers regarding holidays. Why not plan a few short holidays saying that you've realised that enjoying life now is paramount. Even weekends and extended weekends flying interstate and so forth if it's hard to get much time off work. Then you, your wife and the kids can enjoy a few fun times together.
With your wife not appearing to be fully aware of her prognosis can you have a chat with her surgeon or oncologist on their own to find out more around what they have told her. Tell them your concerns and observations. Then you know what she knows and can go with the flow especially if she's aware of the true situation. Could you also talk to support staff at the hospital about this ie psychologist.
It is true that they can't accurately predict how long someone will live. A friend of mine was told in June 2010 that chemo wasn't helping her and wasn't going to cure her and they would give her tablets that had a small chance but more likely to prolong her life. She asked how long she had left and they had to say we actually don't know we can only estimate 6 months to 2 years, could be more. Sadly she did die after 18 months however she had a trip booked that ended up being a few weeks prior to the death but at the time was well enough to go and had a great time.
Sadly she had a care nurse decide that she needed to face reality and gave her a talking to about how she wouldn't be around this time next year (she was attending appts, taking medication, living life well but not irresponsibly and doing everything she could) and I felt that shortened her life. Discussing enjoying life and concerns SHE raised about maybe not being around in more of sounds like that person/activity means a lot to you, is there anything you want to do to celebrate that would have been more helpful.
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Wondering if anyone else is experiencing joint, especially foot pain, from arimidex and whether it's been bad enough to consider going onto tamoxifen.
I've been on arimidex just over 12 months. Was on tamoxifen prior to that. However I'm considering requesting to go back on tamoxifen when I see the radiation oncologist in a month or so. I often have to do a lot of walking at work especially when working back late on an event and then find the 12-15 min walk to the station afterwards plus lengthy trip (walking on and off buses and trains, standing between connections) really difficult. Also kneeling to get things that are low down.
Has anyone else had this experience and any suggestions.
I'll be seeing a podiatrist tomorrow to see what he can recommend.
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Having had cancer myself I feel it's important that carers and loved ones get support as it's just as hard on them. They can't do anything to make it better and feel helpless. And if they are at work they often can't be attending the hospital with the person to find out what's going on, ask questions or be kept in the loop as easilly. Also unsupported carers can make it harder for the patient themselves. It's even more difficult when the person isn't willing to seek support and counselling themselves.
I'm not sure of your whole situation, that is, are there others helping out and giving you both support, are you supporting him with him not working (or is he working still) which can add to the strain. And of course the fact that his cancer is advanced makes it hard.
It's hard for me to advise as even though I had stage III breast cancer it is still treatable (40% relapse rate so 60% plus cure rate) so can't see it from the point of view of an advanced cancer patient. However my situation also was we didn't have much of a local community to help out and I worked through treatment for the money. My anger is not only about the cancer but about the fact my partner didn't want to build our own community a few years before to have those local friendships as well as the lack of financial support.
Thus I'm not in a position to advise how I would have been if I'd simply just been diagnosed with the cancer and my partner was there supporting me with a supportive community and I hadn't had to have worked during tratment. But I feel I would have been highly appreciative and still attended a support group to make it easier for him and me and encourage him to do so too. I also would have accepted services and sought out advice to make it easier on him.
You've done the right thing joining this group and building up your friendships and support people. I also advise that you join a face to face carers support group in your local area as you will meet other carers, share situations and get further suggestions. Also you'll hear of the situations of others which you can tell your partner about.
I agree with Thaker, it's about sitting down and talking with him. Say you are on his side and can't even begin to image what it must be like for him but want to be there for him in all ways including emotionally but you need him to be supportive of you as well. Tell him you want to create the best life possible for the both of you so he can do the things he'd like to do. Also stop talking about God and healthy eating and lifestyle and so forth and talk to him about what interests him and listen to his fear. Point out that inspite of treatment you'd like the 2 of you to do things that he enjoys and is able to do together and that it's a time for him to do some nice things for himself including the 2 of you. Encourage him to do the activities he used to be able to do that he still can do, maybe even offer to go with him or take him.
Naturally with the fact that he's stopped treatment I can well understand your concern. Is it worth chatting to his oncologist about what difference treatment vs no treatment would mean. It's about directly expressing your concern about the implications of this and treatment increasing his chances. Also explain that you may have seemed to have nagged him about his lifestyle but you did so out of concern for increasing his chances of survival and well being.
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I was wondering if anyone has found that the occassional person doesn't want to either make friends with, rekindle a friendship or come in contact with a cancer survivor. I'd had this a couple of times, found old friends on facebook or someone has wanted to take me along to see someone I used to know but these people haven't wanted to see me or remain in touch because a loved one died from cancer.
I guess it's a variation of the theme where some people just can't handle someone with cancer.
What experiences have others had?
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After several months of nothing and even phoning a couple of times to find out when I would receive a letter and thus be able to get feedback I got a phone call. They said that I had made the eligibility list and should have received a letter (I haven't yet) and they had some temporary work (I would keep my current job and go over to this new department job for the time if I got it) and they were contacting people on the list to see if they were interested. I said I was and asked to come in and see them which I do tommorrow. I'm not sure if they are seeing a few people and I'm not sure if they have found out about the cancer and I'm also not sure where I stand with a health declaration seeing it's temporary rather than permanent but I'm sure I will find out more at the interview.
Before the interview I'm going to do a mock interview with the breast care nurse so I can practice explaining I'd like part time work for study and disclose the cancer. The breast care nurse says she looks forward to playing a "mean employer".
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Yes we've all had friends like that. Kathy it was great that you emailed your friend bringing it all out in the open to reconnect as it allowed her to apologise and offer to make it up to you. I like the idea of say after a few months sending an email to give those who weren't able to handle the cancer thing a chance to reconnect (but obviously a desire to make up for it). Sometimes guilt around not being there for us can lead people not to get in contact when we'd prefer better late than never. For me it's not just the not being there but the unwillingness to say I'm sorry and more importantly how can I make it up to you.
I recently had an experience with a long term friend. I'd done all the travelling and so forth to visit but of course after being diagnosed with work and treatment and so forth I naturally keep up in touch with those that made the effort with me including those who lived a fair distance away but were willing to travel out my way or at least meet at a half way point. Anyhow this friend emailed at the end of treatment accusing me of ignoring her and so forth (she gets free travel and doesn't work it costs me $40 plus 4 hours for each round trip which I have to squeeze between work days) so I was honest and said yes because cancer treatment and work and other things makes one more busy I have been prioritising local friends who have made it easy to meet up as well as those who live at a distance who are willing to come out my way or at least meet at a half way point, however I'm more than happy to meet to discuss it if you'd like to come down my way.
I have had friends who have stopped responding to my update emails which after the first 3 or 4 I spaced out ie one at the end of first lot of chemo, one at the end of second lot of chemo and a final one at the end of radio. Sure they may be busy but a response had a quick read, good to hear from you, caught up with things but will respond later. One friend I'd mentioned I'd be travelling up past her place (naming the month) and would like to call in but heard nothing.
I guess this experience will mean that we will make new friends through the experience, some friends will pleasantly surprise us and others will become a lower priority.
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My partner has always had a financially high maintenance family. Sister has problems, can't cope, mum thinks she should be housed and supported because she brought my partner into the world and my partner falls for it.
Anyhow for us it's meant that a lot of his money is going into paying off a home for his mother and sister to live in. I just pay half our living costs and try to keep out of it but do get resentful. Fortunately we own our own home. But when I got diagnosed with cancer I was left pretty much on my own to continue to pay my share of the living costs, gap fees, medications and so forth. There was no conversation about what if I can't work to discuss how to rejig the finances.
Anyhow I managed to work through treatment, the fact I'm a part time worker and my hourly rate is reasonable was helpful but I do harbour a degree of resentment that my partner wasn't there financially for me. If it had of been reversed I would have said take your sick leave on half pay to service the mortgage on the house he's housing mum in but I'll meet all living and other costs (I wouldn't have been able to afford to pay his mortgage as well)
Anyhow treatment has finished and we went on a well deserved holiday to find that sister has gambled away her inheritance (money that if managed properly meant she could have afforded a few nice things, paid for things rather than us having the pressure of being expected to pick up the shortfall) plus took money from his mum's bank account to gamble and no she doesn't want to budget to pay it back, she wants enough money for smokes.
For me this has been a real blow as we'd worked our proverbial off through a very difficult time so my partner could keep housing them. And I had been studying a degree to enable me to remain competitive and earning way into retirement years and was trying to pick that up again.
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Welfare rights centre is another good source of information and help when it comes to dealing with Centrelink. I'm not sure what state you are living in but there is one in every state and will be listed in the phone book.
Anyhow hopefully seeing the oncology social worker has sorted it out for you so you can get some assistance.
Good luck with it all DJ
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Hi Cherry glad you hear you had a great few days. Bet the speedy birth lead to a few jokes. Anyhow any one living with cancer deserves as much quality time with special people and fun times as they can get. And you are right it's friends and family and those fun quality times that rate above work.
I'm not sure what your situation is but maybe with careful consideration moving closer to your parents could be a good experience. Although when life is uncertain it's hard to know what decisions to make. I can relate to that myself as I'm in a job I don't feel respected or enjoy that much but feel it's a blip if I live a very long time. And there's trade offs (ie part time)
I also agree the term "living with cancer" is a good one.
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Sorry to hear of your dad's diagnosis. In the support group I attend they say it's very hard for carers and close ones as they sit by helplessly wanting to be able to cure or fix the person or save them from going through this difficult time and knowing that they can't. Plus of course grieving when the person is terminally ill.
Even though I have cancer, it's breast cancer and even though there is a 40% chance of reocurrence, I'm not terminally ill and thus I can't fully understand what your dad is going through. But I do hear what you say and how much you want him to enjoy as much as possible the time he has left. When I was diagnosed I decided to try to enjoy life as much as possible and try not to waste time being angry and so forth. But of course at times I am, well maybe more grumpy ie complain about the traffic, bad attitudes and so forth.
If he says you don't understand agree with him. But also tell him you care deeply for him and want to help him enjoy himself and be as happy as possible. At the same time do draw boundaries around his anger though, for example, say you're happy to listen to him talk but there is certain things you won't put up with and restate this if the thing happens. With the being pushed away say you're not there to do things for him but to spend time with him and do something pleasant. And that is natural you want to help him to make this difficult time easier.
Is he taking anti depressants at all? Perhaps discuss that with the social worker or his doctor to see if that would help. His tendency to turn to alcohol is difficult as well as if he struggled with this when well then more difficult when not well. Maybe he would respond to trying anti depressants as a way of coping as they will also influence his mind.
Anyhow we're always here to listen to you.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.