It has been over a year since my hubby's diagnosis of bile duct cancer and we were told he had 6 - 9 months. Surgery and radiation were not possible because of the location of the tumour and they could only offer chemotherapy to prolong his life.
Before each appointment with his doctor to discuss the latest scan or blood test. We are both so on edge and nervous. My husband says it is like waiting for the hammer to fall. Each scan, each blood test could be the one that says it has spread. I can't sleep for days before and my hubby is so strong I don't know how he copes. So, each time they have told us there was no change it is such a relief for both of us. It means a little more time.
A few months ago, after yet another blood test and scan, they told us there was no change and he was stable. My husband asked to be referred for a second opinion.
This last Thursday my hubby and I went to see a doctor at Leicester General Hospital that is a specialist consultant in Hepatobiliary and Pancreatic Disease for a second opinion on his diagnosis. It may seem a long time to wait to get a second one. But, we trust the doctors and assume that they know best and the treatment team have done everything they need to do to diagnose and give the best care that they could.
So, two weeks ago the consultant at Leicester General ordered a CT scan and we went in last Thursday to discuss the scan and get his opinion on the diagnosis. We both had the usual feelings before scan results wondering if this one was going to be the one. Again, there was no change in the scan.
The consultant told us on that he wants to do some additional procedures before he fully gives his opinion. He wants to do an MRI scan, blood tests and possibly a laparoscopy procedure. The MRI scan comes first (in a couple of weeks) and afterward we will go in to discuss the results with him and whether to proceed with the laparoscopy procedure to, as he says, have a look around in there.
He also said that it is very unusual for someone with his diagnosis to have no change for over a year. He has never seen a case that has gone on for as long as my husband's has with no change. He said that the diagnosis of bile duct cancer could be incorrect. There are other conditions that could give the symptoms my husband has that are treatable and not terminal.
I just broke down. I felt like the room was spinning and I hardly remember half of what he said after that.
He also said that the original diagnosis could be correct and his cancer is just slow growing or is unusually receptive to the chemotherapy. He said he has a patient with liver cancer that is still going after 4 years.
After the appointment we had to go the comfort room for a bit so that I could compose myself. My husband was his usual composed self. We just hugged and I cried. He said he felt more positive about this doctor and what he said and he felt more hopeful. He said that at the very least it means he has more time than everyone was telling us.
Since the appointment my husband just keeps himself busy until he is exhausted. He refuses to...I guess...let himself feel or hope for to much for anything. It has been a real rollercoaster ride of emotions.
Suppose the diagnosis is not correct and we have been living with this for over a year. I want to cry. Why didn't the doctors do these tests that this doctor is going to do before now? Would you tell someone that they were going to die and put them through that, not to mention chemo, without being absolutely sure?
Since the appointment I have had some angry feelings. My hubby says I shouldn't feel that way. We don't know if the diagnosis is wrong.
How we are going to get through the next four weeks or so until the tests are done and we know for sure whether the diagnosis we have been living with for the last fourteen months is correct or not?
I am trying to keep my feet on the ground. I am almost afraid to hope. It is weird. You would think I would be jumping up and down but I just feel like a deflated balloon. I have felt absolutely ill. That is the truth. I don't know how to feel or what to do. It has been such a hard year. I feel drained. I feel like I am made of lead.
Love and hugs to you all,
Becky
x
