Hi ES Can you tell us a bit more about your situation? I was diagnosed with bowel cancer 6 years ago, I had surgery and luckily didnt need any other treatment. Since the surgery I have been doing really well without any ongoing problems - so long as I dont eat too many nuts or curries!
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I am sorry to hear of your husband's diagnosis. I am guessing that he is quite young if he has been diagnosed with testicular cancer. You are both in for a long ride if he needs to have all the treatment you have listed. I am going to answer your question in two parts - one about being a carer, and the other about information. You might also want to contact the Cancer Council Helpline for some general advice and assistance, and if necessary, for referral for financial advice.
First of all, as a carer, you have a hard hard role. However, I would be careful about "pushing" anyone to do anything. Your husband's reaction is completely normal. When you are diagnosed with cancer you need time to process it, and it can be a huge assault on everything you believed about yourself and the world. Your husband may not want someone else stepping in without his say so, or asking questions he doesn't want to know the answer to just yet. On the other hand, he may want you to take it all over for him - I don't know you so I don't know. If you can, try to negotiate with him about this (maybe you already have). At times you might feel you are particularly helpless but you need to be guided by your husband as to what he wants. Being there for him might not seem enough, but believe me, it is everything.
OK, secondly, taking a list of questions and making notes is a great idea because it is likely that neither of you will take in everything the health care professionals say to you. Processing all the information will take time.
As far as questions go - and subject to what I said above - I would first want to know whether any tests have been done or will be done to see if the cancer has gone anywhere else i.e. what stage is it? I would also ask things like what sort of treatment will he have? What chemotherapy drugs will he have? In what order will he have treatment? How long will each type of treatment take? What sort of side effects can he expect? (if he works) What happens about work - will he need to take time off? How long? (The Cancer Council has information about work and cancer, which you might find helpful).
Also, I don't know if you have children, or want them, but cancer treatment can often affect fertility, so you might want to ask about that as well.
Learning about cancer is like slowly unpeeling an onion - as you go along you peel layer after layer off finding things you want more information about.
Good luck with all of this, and take care of yourself along the way. Do not be afraid to ask for help for either or both of you e.g. from a psychooncologist or someone like that if they are available to you.
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I am sorry to hear that you are having such a hard time. Chemo and cancer can make you feel awful and weak and depressed. These feelings are not unusual and I strongly suggest that you find someone to talk to. If you call the Cancer Council in your state they may be able to provide some suggestions and direct you to people to help. Also, the hospital where you are having treatment might be able to assist as there are counsellors who specialise in helping people with cancer.
I really feel for you as the time of treatment can be a lonely time.
Also, support groups are not for everyone but they can be a good place to share feelings with people who have been there and understand.
Have you talked to your GP? They might be able to suggest someone to talk to.
These bad feelings need not last and there are ways through it. Please please make some calls as there are people who can help you.
I am sending my very good wishes to you.
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I am very sorry to hear all of this. Having been on both sides of this - as a carer and later having cancer myself, I feel your pain. And his.
When my husband was ill I used to get furious with him because he would not communicate. I found myself almost provoking arguments so he would finally spit out his anger and frustration at his situation. I think I was trying to make him behave the way I thought I would if I had cancer - like I read in books, all positive and thoughtful. Wow was I wrong on all fronts.
You are right - it is so difficult to communicate with someone who will not communicate with you. This might sound harsh, but if he does not want to know, or is not ready to know, or does not want you to know, this is his body his choice. Everyone chooses their own way to behave when they do have cancer. Also, sometimes people want to get things clear in their own heads before they share it. Or deny it. Yes very very hard on you.
However, I learned a big lesson which is having cancer does not give a person licence to behave any way they like. Of course they (perhaps I should say "we") get angry and frustrated at times and take it out on the people closest to them, because they can test the boundaries much more than with with friends. But there need to be limits. I suggest that you find someone, eg a counsellor, a psychooncologist or someone like that who can help you with some ideas about how to communicate and how to deal with this situation. Your partner would probably benefit from having a safe place to vent as well. If he will not join you in this, go alone. I found it really helpful to do this. It was a bit like someone gave me, as a carer, some tools and also permission to set some boundaries, and to say words to the effect of "hang on, I know you have cancer and your situation is terrible, but don't talk to me like that". Or, you know, "You want me to stick around - cut it out". I am not sure I ever did say this but I knew it was OK to draw a line.
When I did get cancer myself, my husband was long dead. I think though that I understood, (and moderated) my own behaviour and motivations better for having eventually had some understanding of his.
Please try to find a professional to help you with this.
All the very best to you both.
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I havent had the same cancer as you but I have had two others. I know it is very hard to ask people to help, but at the same time I know that I like it when other people ask me to help them. Maybe you would not be as much of a burden as you think if you told people close to you how you are feeling.
It can be really hard to move on after treatment, or if you are a bit in limbo, as the world looks so much different after cancer.
It sounds like it would help if you could connect with either a cancer support group or a counsellor of some sort who might give you some strategies to help you. Sometimes very simple techniques can help, if only you know what they are.
All the very best to you
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Hello Meredith it sounds as though you have had a really hard time with a quite unusual cancer. Twelve operations is such a lot . How are things going for you now? Do you have family and friends around helping to keep you going?
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I am so sorry to hear what you are going through. Everything happening at once like that must be so tough. Do you think it is possible to resolve the situation with your partner or has he already checked out bigtime?
I have been both a carer and a person with cancer. I thought I understood what it was like to have cancer, having been a carer, but frankly until I had cancer myself I had no idea what it feels like. It seems to me that good communication is absolutely essential - not sure I achieved that.
At the same time, a partner who can't/doesn't want to understand (at least as well as you can ever understand anything until it happens to you), and who either just can't cope or needs you to prop him up must be hard going. That is different from someone who is genuinely in it with you and trying their best.
You have got a lot to cope with. Have you tried any support groups or counselling, or spoken to anyone at the Cancer Council? It sounds like you really could do with someone on your side. Is it possible for you to work part time? Take a short holiday to regroup?
And I think there is no need to beat yourself up because you are not "positive". There is no law that says you have to be.
Please hang in there and reach out for all the help you can find. That can be a very hard thing to do but when you find that help it can make all the difference.
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I am very sorry to hear that your partner has cancer. It can be a very difficult time especially as so much is unknown for you both.
It is very hard to answer your question without knowing where the cancer is and whether your partner is having any other form of treatment.
At the very least I can say that the radiation oncologist who is treating your partner should be able to give you information, and it is a very good idea to ask lots of questions of any health professionals who are treating your partner.
In my experience, ie of breast cancer, the first thing that happens is that you are measured up so that the radiation can be give exactly where needed. After that, in my experience, each treatment was given very quickly but the type of cancer will dictate how many treatments there are.
The radiation also made me very tired, but it did follow surgery and chemo, and I experienced some soreness.
As I said, without knowing anything about your partner' specific illness it is hard to tell you anything more.
Very best of luck with everything.
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I am very very sorry to hear that things are not going well for you, and having to wait 2 weeks for results is not very good at all. I think that uncertainty is very hard to deal with.
Cancer brings out all of those emotions you said. I am going to go against the grain re the general wisdom about having to "be positive". Why should you? You don't have to be anything. Having cancer and responding to cancer is not a moral issue - you feel what you feel and you are what you are. That is life and that is cancer.
I really hope you have people around you who can help support you and who you can share your fears with. It must be very hard when you feel like you cannot take any more. I hope you find some answers and some peace.
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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.