What Has Been Going on in my Life

Okay as promised I said I would let everyone know why I haven't been that active on the blog for a bit. So to begin with back in March of this year my husband noticed a lump in his neck. As time went on, he had two biopsies and we were sent to Ottawa. Well we went and then were told it was cancer. So my husband said lets get it done. So July 22, he went into surgery for throat cancer.

What was supposed to take only 7 hours ended up being 11 1/2 hours. One doctor took things apart the other doctor put him back together again. When the doctor came out, I was in a panic thinking something had gone wrong. Well the surgery was more involved than they thought. He was cut from ear to ear, has a hole in the center of his throat, and had 71 staples. They removed his voice box, jugular vein, lymph nodes, part of the thyroid and a lot of other parts.

So to sum it all up, they had to cut him on the right thigh from just above the knee up to almost the groin to take skin etc. to make a flap in his throat. He knew all this before he agreed to the surgery and just wanted it over with. We were told he would not have a trach but when we got in to see him (my daughter in law was with me) he did have the hole in his throat and a trach. That was because it was more involved than they originally thought. His face and neck were all swollen and bruised and he was sedated with machines all over the place. He doesn't remember us being there but knowing he was being looked after, we came ahead home. Its 238 miles down and back from where we live. We went back the next day and saw him and he was sitting up but was very sore. He can no longer speak, like I said his voice box is gone. I will never hear his voice again saying good night, I love you. He was in critical care for about a week then into a special area where they watched him all the time. He was fed by a feeding tube in his nose and was ok with that. He was just happy to be alive and the cancer gone.

He was in the hospital for 19 days and when they felt he was able to come home they discharged him. I stayed a couple days in Ottawa at my son's so didn't have access to the computer. When he was able to come home, my son brought us back. He was so glad to get home. Then the avalanche began for us both. Things were happening so quick, nurses, dieticians, all kinds of supplies and feed coming to the door, medicines, it was crazy. I was so frustrated, nothing I did seemed to be right, I think I cried that first two weeks more than I have in my life. I never thought I would get the hang of things. My husband held me and tried to tell me it would be ok. I really didn't think it ever would be.

Anyhow, on September 16th we saw a doctor in Renfrew and had seen him in Ottawa as well. He said he could take the nose tube out and put a stomach tube in. Hubby agreed. So another 3 days in the hospital and then he came home. So now I had something new to learn again. Let me tell you my life has been so frustrating since July its unreal. The only people who knew what was going on were our kids and their wives and the grandchildren. He wanted nobody else to know especially his family. So they were sworn to secrecy. So here we are now with a stomach tube. More supplies, different feed, and so much more going on. I was ready to give up. I had to be strong for him. He asked me one night, well he wrote it in the book, do you think this was all worth it? I told him yes I still have you here with me, your kids and grandchildren have you yes it was worth it to us. He shook his head yes.

Now jumping ahead, giving the feed by syringe in the stomach tube was giving him diaherrea very bad. Plus the feed, so they changed the feed a few times and nothing was working. Here we go again, more frustration for us both. Finally a dietician in Ottawa contacted us and asked to see us. She sent us 8 boxes of 24 feed each and a feeding pump. I absolutely love it. I put the feed in the bag, put the tube into his stomach tube and turn the machine on after setting it and we can go shopping, travel all over and nobody knows he is being fed. I give him his feed on the way to Ottawa and its great. It takes one hour to finish. Its in a little pack sack that he can carry or put on his back. We have been travelling every day 5 days a week for radiation treatments and only have Friday and Monday left, then he is done. The total radiation treatments is 30. His neck is like raw liver and sore but the doctor gave us some prescriptions which seem to be helping. I feel so bad for him.

He tires quick but that is par for the course. He has lost some weight about 20 pounds already but soon will be healed and hopefully be able to eat pureed foods again which he was for a while. There is two machines we have here, we bought one so he can suction when he needs it and the other is one he puts a mask on and breathes. He cannot smell any longer and they said wouldn't be able to life his left arm very high but he can. His mouth is a bit crooked but they told him that too. He can't wear his dentures yet, they will have to be relined, he can't wear his hearing aids because his ears have no feeling yet.

He does a lot of writing in his book and tries to talk to me but I don't lip read and without his teeth its even harder. He gets frustrated but I bought a machine last week that he will be able to use to talk. It cost almost $300 but the speech therapist said he needs to practice and she will be there to help him. She is a doll and we really like her. She has other things there we will see about on Monday, his last treatment day, he will need something not too heavy to put around his neck in winter and windy days. He doesn't breathe through his nose anymore, its all through the trach so he needs it to be covered when he goes out. Oh so much to learn for us both and so much work. I am sure I probably missed some things that have happened but at least now you know what has been going on here.

We head to Ottawa in the morning again for his treatment then we have the weekend off and head back down Monday for the last time for at least 4 weeks. Then we go back to see the doctor. I am a night person and hardly ever saw my bed until around 3am. Now by 9:30 I am in bed tired out. I get out to do shopping and visit my cousin about once every two weeks for an hour or so *she only lives 5 minutes away* because if someone calls or comes to the door, he can't talk so it means I have to be home a lot. Anyhow at least I still have him. Medicines, machines, feeding tubes, nurses, dieticians, supplies and more all the time. Its been hectic.

So sorry this was so long and for those who read it all thank you. I am not looking for pity or anything else. I just wanted to explain what has been going on and why the blog has been slow.
So thanks for hanging in with me and tomorrow once we are back from Ottawa I will have the gift guide going as promised.

Thanks everyone so much. Now I am off to bed. Good night.