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,
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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
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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
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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
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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.