March 2009
Now we are four! I'm a survivor of 14 years and have come to terms with the fact that although cancer may not be a death sentence, it IS a life sentence. Annual check-ups with my oncologist remind me, as well as the surgical scars on my body that are with me daily. Don't get me wrong, I don't live in fear and I've finally stopped waiting for the other shoe to drop, but I was only able to build a new 'normal' for myself once I realised that cancer could come back again and I can't change that. I use this knowledge to live as fully as possible every day. Being human, of course sometimes I forget to do this, but I believe that I do my very best to make each day something to be celebrated. Basically it's just a matter of keeping on keeping on - and no matter how far down the track you get, always have people to talk to who have been on the same journey. Family and friends don't want to hear about it over and over again, but if you need to talk, then you need to. Who better to do that with than other survivors?Jane
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March 2009
Being real isn't being 'negative'! I have a personal aversion to all the 'be positive' stuff. It makes me mad that cancer patients are always supposed to be 'up', as if that has some bearing on how healthy they are or will remain. (Latest research shows that this is NOT the case.)I prefer to try and be optimistic as much as possible, but everyone has their ups and downs as part of being human so why should that be any different for cancer survivors?!Sorry about the rant, but this is a particular peeve of mine...
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March 2009
Hi Magro What you are feeling is perfectly normal - it's like waiting for the other shoe to drop. When you've been told the stats and they aren't fabulous, others can think you should be grateful that you've beaten the odds. They don't get that even if cancer isn't a death sentence, it is a life sentence. There are NO guarantees.My prognosis was always good and I'm 13 years down the track with no recurrence, but whenever people find that out they usually say, 'Oh, that's great - you're right then.' These days I simply respond, 'yes, today I am.' I think it scares them to think that having cancer and surviving isn't a guarantee of being cured or in permanent remission. It certainly took me more than 3 years to get to where I am now, but I use the fact that I might have a recurrence as a spur to living life as fully as I can. It's really important that you have someone you can talk to about your fears. Unexpressed, these can actually make you sick. I suggest that you if you don't already go to one, you join a support group that has at least some members who have finished active treatment. You'll find that many of them still live with the fear (to a greater and lesser degree in each individual) that their cancer could come back.Hang in there, it does get better with time. Although the monkey on your shoulder will probably never go away, it does become almost silent instead of screaming in your ear constantly.Jane
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March 2009
Hi thereI didn't have the same diagnosis as you either, but I can still understand how devastated you are feeling right now. You're in shock and it's hard to be proactive when you are frozen with fear.If you don't feel capable at the moment, ask a family member or close friend to organize a second opinion for you. Talk to your GP to get names of other oncologists if you don't know who to go to.You have to be prepared in case you get the same answers from other doctors but taking some time to see other oncologists will give you breathing space and hopefully get you to a point where you will be able to hear what treatment options are available. I remember when I was in that state of shock, I couldn't take in a lot of what doctors said to me. Just because the surgeon wasn't able to remove all the cancer does not mean there's nothing left to be done!Always take someone with you to doctors' appointments because you won't remember everything that is said. Ask your buddy to take notes or even tape the entire appointment. That way, you can check later if you understood properly or if there is anything you need more information about. Your GP should be able to clarify anything you're not sure about if you can't talk to a specialist straight away. If you are worried about anything, don't put off seeking help - that just leads to feeling more alone and anxious. If your GP isn't helpful, change doctors.I recommend that you find a support group too - talking to other people in the same boat, even if their diagnosis isn't exactly the same as yours, can be reassuring because you know that they 'get' how you are feeling.Best of luckJane
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March 2009
Those 'symptoms in my head' have never completely gone away, although as a survivor of 15 years they aren't present all the time. Usually only around the time of my annual review with my oncologist - which I've just had this week. Despite the fact that I feel fine, my mammogram and ultrasound were clear last week and after a breast exam last month my GP found nothing at all to worry about, I still woke up with a dry mouth and a pounding heart on Wednesday morning. I didn't feel as though I could take a full breath until the oncologist said 'bye, Jane - same time next year'!One of the hardest things for cancer survivors to cope with is learning to live with uncertainty. The truth is that life is uncertain, but as we've already had our mortality shoved in our faces we do need to find a way to stay in the moment as much as we possibly can. Agonizing over the past or worrying about the future prevents us from living life with enjoyment. Sometimes easier said than done I know, but it is possible.Jane
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February 2009
Sharon - you have a true gift for expressing the inexpressible and I wonder if this will be your way through the achingly painful loss that you are experiencing right now. I can't give you any answers because grief if a journey we all have to go on alone, but I suggest that you keep on writing all your feelings down. Share them on this forum, but also keep a journal; carry this with you at all times so whenever you need to 'vent' you can reach out and grab this book. The beauty of a journal is that you don't need to be nice or polite or worry about upsetting anyone else, you can really let rip.I'm sure you feel many different emotions and some of them may surprise you. One that can be most distressing is anger - anger at the person you loved most in the world. How dare he leave you?! What right did he have to take off and leave you alone. Perhaps you haven't got there yet, but please don't be shocked if and when you do have those feelings. Logic has nothing to do with grief. You KNOW that your beloved husband didn't get cancer on purpose; you know that he didn't deliberately abandon you; you know that he loved you and would have been just as devastated as you to not be spending many more years together. But - he's gone anyway. Just know that feeling angry at the departed is a normal part of grief and so I encourage you to vent all those feelings in your journal. You won't be hurting him and you won't be upsetting anyone else. You have said that you feel him around you, so he will know that it's your despair at losing the love of your life that is causing such extreme emotions. You will get to a more peaceful place if you let yourself be completely real and don't deny anything that you feel. Someone once said (possibly Elizabeth Kubler-Ross?) that when we are dealing with huge loss, the only way out is through. In order to get to the other side, it's vital not to deny and bury feelings that we think are unacceptable. Feelings are not positive or negative, they are just feelings and if we are having them, then they are true for us in that moment.It might be helpful for you to find a support group. If you don't know where to start, try typing grief or bereavement support into an Internet search engine and I'm sure you will find some suggestions of where you can find help. Sometimes just an anonymous voice on the phone might be more comforting than family and friends, in this case Lifeline might be helpful, especially if you are desperate in the middle of the night.People left behind can feel survivor guilt and if this happens to you, seek professional help - your doctor would be a good starting point. Maybe they will suggest some kind of medication for a short period of time, but it's not a good idea to use that alone. Then it just becomes a Band-Aid - you need to still work through your feelings, not just paper over the cracks.Hang in there Sharon - as hard as this is, I believe you will get through it.
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