New to Forum, Lost and Scared

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New to Forum, Lost and Scared

Last year on the 17th of September my Boy friend/Partner/Soul Mate had a routine colonoscopy because he is over 50. On the 20th of September we received the results. Attenuated Familial Adenomatous Polyposis. He had hundreds of polyps and they isolated a rectal carcinoma. They said he had twelve months from that particular carcinoma but were hopeful they could re-sect the area post biopsy removal.The drs wanted to take everything, his colon, rectum and lymph nodes. He wouldnt go through with it so another approach was taken and one month later he had his colon removed and had an internal ilium created, so no bag thankfully. The carcinoma site was not resected as they said it was biopsied so well it appeared to be gone, that time will tell if it would return. Post surgery all test were clear and it appeared we had got it early enough for a complete cure. January his colonoscopy was clear so all was looking fantastic! Until two weeks go. He had a PET scan that showed Hot Spots. He tells me to just drop it. I am suddenly not allowed to speak to the drs. He tells me the Hot Spots are from the polypectomy 5 months ago. He wont talk about it. He says he is just fine, that its to be expected and all normal. My sister is an oncology nurse. She tells me its highly unlikely that the Hot Spots are from a surgery that occurred over 5 months ago, my GP has said the same thing. He did tell me there would be another 'round table' meeting of the Drs to assess the results which would have happened by now but he has not updated me. If I bring it up he says to drop it. I just am so lost and scared. I told him that if the Dr said he is all clear then the Dr can tell me that himself and then I can be reassured. He wont let me talk to the Dr. That just makes me more afraid. He is talking like its all normal. I cant sleep, I dont know how to handle this. If he is all clear then why wont he let the Dr reassure me. If he is not then why is he acting like its all ok and shutting me out? I feel like I am going crazy. Any Advice would be greatly appreciated Poss
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Re: New to Forum, Lost and Scared

Hi Poss, I haven't been in your situation, but something similar - my husband was diagnosed with non-Hodgkin's lymphoma 3 years ago. I was really glad that he wanted me to be at all his appointments etc- I can't imagine what you're going through at the moment. Sometimes I think it can be harder to be the 'healthy' partner, because you're very much the passenger on this particular journey. Unfortunately your husband has the right to control who knows what about his diagnosis. However, that doesn't mean you shoudn't be supported too. It sounds like you can talk to your sister about this- that's great. Allow her to support you as much as she can. Do you think it would help if she talked to your husband about how stressed you are? She wouldn't have to probe your husband for information (that would probably just make things worse), but just highlight to him how stressed you are about what's going on. I'm sure it just hasn't crossed his mind that keeping information from you is actually adding to your stress. I hope it goes really well for both of you. Keep in touch, and I'm sending you gentle hugs. love Emily
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Re: New to Forum, Lost and Scared

Hi Poss I have done all the surgery, radio, chemo and was in remission but new spots are now in my lungs. For me, I have told my partner, parents, sisters and adult kids that it has returned but I haven't told everyone the same thing. My Mum is terribly stressed and she is stressing me with her constant questions so I am now avoiding her. Everyone else is respecting my privacy and not questioning me. Please don't get to this stage with your partner, it's stressful for both people. Chat with a counsellor about how to deal with your feelings and let him know that you are worried and care for him but don't pressure him for information. When he deals with the information I'm sure he will talk with you but he might not want to tell you everything. It's really hard to deal with this situation and he has to get his head around it first and figure out what his new "normal" is. Good luck to you both. Kim xx
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Re: New to Forum, Lost and Scared

Hi Emily, you pose a good idea, and my sister has already asked me if she could talk to him. Why that is problematic is because hubby is saying that the Hot Spots are not a problem. He is saying that its all fine and its just showing old surgery sights. Its so hard to tell if he is in denial or just shutting me out. One good thing is that we share the same GP so my GP would be happy to talk to him about how this is stressing me. I am seeing my GP on Thursday so I am planning on discussing this all with him in person rather than over the phone. Hubby is renovating his house that he bought years before we got together to be able to sell it so we can live together. Its been the dream for two years. The C diagnosis really put the renovations backwards, its not easy when your sole income is a pension and your not healthy so it has been a battle for him. Since the surgery last year he has been working so hard to get the house to a sell able and occupational point. Its not there yet. He just keeps saying that he has to finish the house and keep building so that we can be together. Its like he never got a positive scan at all. Thats why I feel like I am going crazy! Could I be worrying over nothing? Could he be right that its all ok? But yet I am being told that a re staging PET scan that has shown Hot Spots is really bad so I am just soooooooo angry and scared and confused and I just cant think. He is coming into town to visit me tomorrow. I expect that if there is some news from the specialists then he will know what the action plan is by the end of the week. Its quite likely that he is coming in because he has an appointment at the hospital so I just have to hang in there until I see my Dr on Thursday. Is it normal to be angry with him? I am angry because when he got told he had the all clear he decided that he had enough time to keep building to get the house to the $300, 000 sell mark. (There is a small mortage and he wants enough money to set us up). It was only at $250, 000 when he got sick. I am telling you this so I can explain why I am angry. I get where he was coming from but I was angry then and I am angrier now that he didnt just sell the stupid house so we could spend what time we have left together. I dont want him to leave me a house! I want him to be with me! I am really mad with him for expecting me to cope, for shutting me out and forcing me to pretend that its all ok. I would cope if I knew what was going on. Then I feel guilty for being mad at him and I feel like I am already grieving. Then I feel guilty for having him dead in my head and losing hope. God Im going nuts. Sorry for the rant, Hope I am making sense Poss
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Re: New to Forum, Lost and Scared

Hi Kim, thanks for the insight. I am pretty sure he does not want me to stress him out, considering how poorly I coped with the initial diagnosis he probably does not want to deal with how its affecting me. I guess I have to just show him that I am coping before he will open up. Thank you for for reaching out to me when things are not so great for you. Sending you a big hug Poss
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Re: New to Forum, Lost and Scared

Hi Poss, you're more than making sense, I've been there myself. It's normal for you to have negative emotions going all over the place. I remember feeling stressed and miserable and grief stricken for the first months after my husband's diagnosis, and then suddenly one evening (I was just on my way out to dinner- I remember it that clearly, and it was that sudden!) I flicked over into feeling really angry with him for bringing cancer into my life. I was lucky that I was commuting alone at the time, and due to spend the evening without him, as it gave me a bit of time and space to start processing this really powerful emotion away from him. You can only do your best to deal with each moment as it happens- don't be too hard on yourself. I think it's really good that you're going to discuss this with your GP, too- that will really help. Big hugs. Emily.
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Re: New to Forum, Lost and Scared

Thx for the hug Poss. Your reply above about how upset and angry you are made me feel so sad. Your feelings are perfectly normal and it's great that you are discussing with your GP. The biggest thing for me is for people to treat me like "normal". I don't want to be fussed over and I don't want to discuss my medical problems or treatments every time I speak to someone. I am trying to live life as normally as I can, work, shop, cook and go out when I feel well. It sounds like your partner is using the house as his "normal" activity. It gives you a focus instead of sitting around thinking how bad your situation is. If I can be normal, I can deal with things better - it's the only thing I can control. I'm sure he's not trying to hurt you by blocking you out while he deals with his diagnosis. It sounds like he needs a little bit of time to get his head straight. Tell him that you love him and want to support him and take your cues from him. Stay strong Kim xx
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Re: New to Forum, Lost and Scared

Hi guys I have an update. Today hubby came to visit and I was able to gently say to him that I would cope with anything but I cant cope with knowing that there is something wrong and that he is keeping it from me and shutting me out. He said that I could call the specialist. I rang the Surgeon and his receptionist informed me that hubby's case was being presented at the round table meeting this Thursday. Hubby got on the phone and asked the receptionist to have the specialist call me directly to inform me of what is going on. He would not discuss it further, which I can completely respect now that I am able to speak to the specialist. It is also very reassuring to know that the case is being discussed by all the specialists and that we will have a course of action soon. I still don't know the severity or exactness of the situation as yet, but I will be kept informed from now on. Thank You for listening to me this week, Poss
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Re: New to Forum, Lost and Scared

Good news Poss. I hope you continue to get good news this week. Kim xx
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Re: New to Forum, Lost and Scared

That's really good, Poss. I'm hoping good things for both of you. Keep in touch! love Emily
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