I haven't blogged in a while. Here's what has been going on.
My husband sought a second opinion for his terminal diagnosis of bile duct cancer from a specialist in Leicester. Our first visit to see him was at the beginning of September to discuss the latest CT scan. There was still no change from previous CT scans in the past 14 months. He sent him for an MRI scan and blood tests and said that it might not be cancer. We got the results of the MRI scan and blood tests and the doctor said that the scan showed not much of anything. It certainly shows no change since his last MRI scan 16 months or so ago. Nor had the CT scans he's had over the past year shown any changes. The blood tests show no tumour activity either. Nor had they in the past.
I am going to try to make a long story short. The doctor thought that the original diagnosis of cholangiocarcinoma (bile duct cancer) may be incorrect. He said he had never seen anyone with that type of cancer live as long as my husband has with no spread or change in the scans or blood tests. He also said there were other conditions that it could be that were treatable and not terminal. We were elated. We both started to hope and believe that the cancer diagnosis was incorrect. We couldn't help it we were so happy, so hopeful. I just kept hoping and believing that he was not going to leave me.
So, the doctor scheduled a surgical procedure and did a biopsy four weeks ago. He spoke to me directly after the surgery. He said that he was sorry to tell me that the original diagnosis was correct. It is bile duct cancer and inoperable. He said that when he opened him up and looked at the bile duct and felt it he thought it just looked a little inflamed. He took a tissue sample and had the lab give him an immediate biopsy result (we were told originally that we would have to wait about a week for the biopsy results). I believe he was surprised that it was cancer after all. I think he asked for an immediate biopsy result because he really didn't think it was cancer and he wanted to be able to tell us right away. He was a really lovely doctor and I believe he was genuinely saddened to have to tell me the bad news. I was in shock. I thanked him for doing all that he could to do a thorough diagnosis.
Later on that evening my husband was becoming more lucid after the effects of the anaesthesia. He was on a morphine drip. The nurses told me he had been told by the doctor the outcome of the surgery. He asked me how the surgery went. He didn't remember that they had already told him. I tried to tell him to wait until the morning to talk about it. He insisted that I tell him. I had to tell him again. I can't lie to him. He was so devastated and so was I. He was really upset and I asked the nurses to keep checking on him. I was in bits. They told me that he may not remember that I told him either and may need to be told again in the morning. But, he did remember that I told him. It makes me cry to think about it. It was the hardest thing to tell him. I hurt him. I never want to do that. I also had to tell the children. That was so hard. They had their hopes up too and believed that it wasn't cancer.
It was almost as bad as hearing the diagnosis the first time. We have all had to adjust to the diagnosis again after having such hope. We were making plans and thinking about the future. I guess we were really foolish to set our hopes so high. But we couldn't help ourselves.
Hubby is feeling a bit brighter now and is still recovering from the surgery. He is still sore and he had an infection in the large incision and was on antibiotics for a couple of weeks. He was very depressed but is picking up a little. Me too. I took off work for a couple of months because of stress and depression. My doctor prescribed antidepressants and they seem to help some. I have also started walking a couple of miles a day (doggie loves that). A couple of months ago I could hardly think straight and was so exhausted I felt like I could barely walk across the room. I am back to work next week. I start back on three days next week, four days the week after and full time thereafter. I am not sure I am ready to go back but I told my doctor that I wanted to. My employer has been very supportive. I am so lucky. They have been great to me.
Well, it looks like I have made a short story long instead of a long story short! I started not to blog anymore. I stopped reading posts on the site and everything. I had read a fellows blog a while back about the sight not being the same as it used to be and he was leaving the site. Apparently, it used to be for cancer patients supporting each other and not for family or carers. It kind of put me off. I felt a little like I didn't belong or I was being selfish talking about how I felt and needing support.
I have talked with my husband and he said that I can never know how it feels for him or anyone else to have someone tell you that you have cancer and that it is terminal (and he hopes I never do). That is something that unless you have experienced it is impossible to know. I told him that I can never know exactly how he feels I can only comfort and care for him as best I can and let him know that I am here for him always. He will never be alone, I will always love him and we will be together in this life and the next. I also told him that as his wife and a carer that he could never know how I feel knowing that one day I will lose him to this horrible disease and be left behind to live the rest of my life without him until we meet again in the next one (which I truly believe). I am not afraid of dying I am more afraid living in this life without him. He says I have to look after myself and be there for the children and grandchildren and to look after our slobbery git of a dog. That is what I am going to do.
Cancer affects everyone that it touches in our lives, patient, family, friends, carers, neighbours and anyone else who cares about you.
Love,
Becky
