I need to tell someone out there

[mary]

Well here I am. I need to tell someone out there in this big brown land of ours with so much going on at the moment. Last week I was thinking about what tiles I wanted for my kitchen and this week Im on this website. The man I love has had not good news. I have never been affected by cancer with someone I love until now. I would climb the highest mountain, swim the deepest ocean, walk the thousand miles through the scorching desert and never have a second thought. Here I am with the most dreadful news. This journey that is just beginning. We have hardly taken the first couple of steps in this cancer journey. I think, if he lets me, if he is willing to have me along for the journey, I will be there every step of the way. Except Ive never done this before. I dont know what to do. Whats too much or too little. Whats overbearing or not enough. Do I tell him I am devestated. That I cant think of anything else or do I just be so positive. But is that practical?? Do I tell him whats on my mind, do I tell him my fears. Its not my body going through this. Please someone tell me how to be with the most aussie of guys. The guy who says everything will be fine or I dont want to talk about it. The guy who is the epitome of an australian male. He knows I love him with all my heart. What do I do? Mary

[Sharon55]

Dear Mary, I can so relate to exactly what you are about to go through and what  you are feeling. I was in the exact same position that you are now, 12 months ago. You ask how to relate to all of this and the journey you are about to embark upon. There is no easy answer, each journey is unique. Take it one step at a time. That is all you can do. More than likely your husband will not talk about how things are for him, please try not to take this personally. I did for a very long time, and it almost destroyed me. Men will not talk about their illness with those closest to them, I think they feel as though they are protecting us. I did get to a point where I asked for permission to express my feelings in front of him as I could not hold it in any longer. He was fine with this in the latter stages. In the beginning, the shower became my friend as did driving in the car alone. This is where I could cry, scream, shout, or just be sad. Once those emotions were expressed I could then deal with things easier. If he is going to need a porta-cath for chemo make sure that they put it in the opposite side to where you sleep. This is something we did not even think about until after it was done and I could no longer rest my head on his shoulder. You may find that he will not want you to touch him or hug him, once again it was only in the latter stages he told me and I realised how sore and sensitive he was. The chemo will do that. You may find personality changes, it is the chemo, they will tell you that it does not effect the personality, it does. Once we realised and had it confirmed we were then able to treat this with humour. Humour became our friend. Your husband will more than likely want things to continue as normal and this will be hard at times for you. Try to be patient, and believe me at times it is hard. Find an outlet for your anger and frustration. Writing was great for me. You ask about staying positive. Well while it is important and everyone will tell you, you have to be this way. Sometimes you just don't feel that way and things will not be positive. Believe me there are days when you will feel negative and down, this is OK. Remember life before Cancer, there were days when you felt not so good or positive and it was OK. For some reason "they" will tell you it is not OK with Cancer. The bottom line is that this situation sucks, and it is a long and bumpy road. These are my experiences, yours will be your own and  while similar will be different. I would be more than willing to help you further via email if you wish. Good luck and my thoughts are with you both. Sharon.

[mary]

Thank you very much Sharon for writing back to me. I really appreciate it. And thanks for the great info. Mary

[clo]

dear Mary there is not much to add to sharon mail she is right and u r too you will have good days and bad days . days when your husband wont get up or eat or drink depends where that awful desease is anyway dont do like me i wasnot prepared like you and i tried to made my husband eat and drink but that was too late too painful .your hubby will tell you it will be ok aussie or french there r all the same trying to protect us as much as possible i told my husband i was really scared so he did go when i was not wit him and i will regret that for the rest of my life but every body is different just tell him over and over that you love him i hope you be ok i cya on line take care Clo

[mary]

I will tell him over and over that I love him. This is all so frightening.

[mihalo]

Hi Mary, I'm writing to you from the patients point of view. I hope that is ok. Although as the others have said my journey is different to yours too. Esp given that I am female! and well us girls tend to talk better than blokes! My hubby and I have a deal going and that is when he walks in the door after work and asks how my day was, instead of saying ok when its not, I say (or he says if that is the case) "ok but can we talk when the kids go to bed". That way, we both know either one of us needs to talk and or cry. We do this before bed and always talk about these things in the lounge. We never talk about upsetting things in bed, it just doesn't help at all with going to sleep. And My thing with my mum is that if I am allowed to tell her all my worries, fears, sad thoughts, anger and frustrations then she has to do the same with me, she has to tell me all hers. Because the bottom line is Mary, that its not just the patient who has cancer, its all of you. Everyone who is immediate to that person. For me that means its my hubby, my 3 little boys, my mum and stepdad and my 2 beautiful sisters. My world caved in the day I was told the docs were looking for tumors, but so did theirs, and it will never be the same. Life with cancer takes away the life you knew, it now becomes a new life that you have to be able to still try and enjoy, you just have new worries and fears, but you can still create new experiences, dreams and goals. Try not to waste energy on being angry for any reason, just use all that energy to help him get better. I hope I haven't rabbitted on too much. Lots of Hugs to you.Michele xx

[mary]

Mihalo, Even tho Im not the one who is sick, as you said its happening to me too. I feel it as much as he does and I would take it away if I could. This sounds corny and contrite but his pain is mine. I have know idea how to cope with all of this. Its just too overwhelming let alone go to work full time, run a household, speak to people. pay bills and general day to day life. Thanks so so much for answering me. Mary

[mihalo]

Morning Mary, Just take it dayby day, moment by moment. Once all the appointments settle down and you get into a new routine scheduled around the bl**dy disease, you will find that you wont be so overwhelmed. But you are right, it is very overwhelming and talking about feeling his pain is in no way corny....it is VERY real and we all understand that here. Have you got a special person in your GP that you could talk to, or perhaps see a psychologist. Myhusband and I found great strength and ways of supporting ourselves, each other and our children through some of the challenges we have faced along the way. And I mustsay, communication has been the key. Also when things get tough, its ok to ask for help. I'm in Vic and have had home help/cleaner each time I have had treatment. You guys would be entitled to this too. Might just take the pressure off a little. Even if it as just to have someone do your ironing or wash floors. Every little bit helps. Here's hoping it all settles soon and you can find your feet, your strength and some positive emotions again. Love Michele xx

[Wendy]

Hi Mary I can so relate to where you are at the moment. My partner was diagnosed 2 months ago with advanced oral cancer and my world has fallen apart. Life has stopped and I don't know where to turn. I can't talk to him about how he feels as it's now at the point where talking causes too much pain for him. It's lonely, quiet and scary in this world I now live. I lay in bed of a night watching him toss and turn from the pain wishing I could just take it all away and make him better. We start treatment next month of radiation and chemo. We have one hell of a road ahead of us but I'm determined we will get through it. The doctor's have told us that his chances are minimal but they are willing to try so that's enough for me. I don't accept the time limits they have given us. I have given my love my own time limit that I set. 50 years and not a minute before. He is 43 and I am 39. We have loved each other for 20 years now. Hang in there Mary. You are not alone. I feel every bit of the pain, anger and dispair you are feeling. We will get through this. Surround yourself with people who love you. Talk to people who love you and will listen. Allow them to help you where ever they can. We will get through this Mary. Just one step at a time. My thoughts are with you.

[Sailor]

Hi Mary So glad you have told someone out there - that's the first step. Keep on doing it. Remember the Cancer Helpline 13 11 20 is also there for you as well as your partner. Down here in Vic we also have a Cancer Connect for Carers, I don;t know if they do in other states. There is also a mob called Carers Australia www.carersaustralia.com.au , and they have state chapters. They also get some government funding so don't be afraid to use them - good example of our taxes at work. Now I'm the bloke who has cancer and I have a very loving wife, but it is only now, after living with this thing for eleven years that we can talk frankly about it. I can remember the way the first drug I was on wiped out my libido - what does that mean? It means that not only are you not interested in the sexual side of your nature, you are no longer aware that you are not interested. It is as if that side of your personality had just been wiped out. I can remember coming up to that first Christmas after diagnosis and not long after I had started treatment, we were walking though the shopping centre and I took her hand, and was quietly told "Do you realise that is the first time you have touched me in three weeks?" I was devastated. She always says that I am the one in the family that wears their heart on their sleeve - yet I didn't talk much about my cancer to people who really cared, I found it too difficult to handle their pain as well. Also as men we do handle things differently. There is an old Cancer Connect poster in the Cancer Council - it has a picture of a middle aged man and the words "And so began Dad's cancer battle, of which very little was said. In public he held his head up high, and fought his battle in his shed". We will talk about it - I've been in a room full of men who normally would not discuss this and had them talking and talking about their cancer, the effect of it on them, their fears and concerns. It's just we need permission from others to do so, to break down the "I'm tough and can cope with this" image that we are conditioned to live with. So don't be afraid to voice your fears, you hurt, your grief - not in the sense that you are putting this on him, but that this is the way you feel about it. Also take care of yourself, get support for yourself as you are on this journey together. Take care Sailor Love one another but make not a bond of love: let it rather be a moving sea between the shores of your souls. Kahlil Gibran