thebeckenator's Blog

I haven't blogged in a while

2010-11-26T22:03:38Z

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

RE: Ongoing Second Opinion

2010-10-02T00:58:18Z

My husband has been seeking a second opinion for his terminal diagnosis of bile duct cancer from a new specialist in Leicester. Our first visit to see him was at the beginning of September to discuss the latest CT scan. There was 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.

Hubby and I went to see the new specialist on Thursday to get the results of the MRI scan and blood tests. He says that the scan shows not much of anything! It certainly shows no change since his last MRI scan 14 months or so ago. Nor have the CT scans he has had over the past year shown any changes. The blood tests show no tumour activity either. Nor have they in the past (we were not aware of that).

The doctor is now scheduling a laparoscopy procedure in a few weeks to go in and look around and get a tissue sample for biopsy. Which, his original doctors have never been done before! We didn’t know that they had never done a biopsy! They had gone in to to other procedures when he was first diagnosed and we just assumed that they had done a biopsy.

The new specialist said that if it is cancer it is very unusual for this type of cancer to have no change or spread after this long. But, he also said that it is possible that they could go in and see something that was not showing up on the scans.

How can doctors tell someone that they are going to die in 3-9 months and put them through months of chemo without doing all of the tests necessary, or possible to diagnose? Even the new specialist said that he would not tell someone that they had a terminal illness and put them through chemo without a tissue sample first.

The only thing they did do was take ‘brushings’ (a sample of a few cells) at the site when they did the initial endoscopy approximately 14 months ago and they were negative for cancer. We didn’t know that either! Also, the new doctor said that if the cancer diagnosis IS wrong he could be limited in treating my husband’s condition because of the stents they put in his bile ducts. He said that there are many other conditions that present with the same symptoms that are treatable and not terminal. Why didn’t they test for these other things or at least do a biopsy to be sure it was cancer?

Hubby is up and down and all over the place (we both are) as you can image. He just says keep your feet on the ground. They really don’t know for sure if the cancer diagnosis is wrong. They could go in and find that it is cancer. We just don’t know for sure. We have to wait and see. He also keeps asking me what I think is going to happen. I tell him that I am hoping for the best and I will be right by his side no matter what.

The waiting is really hard.

I know they may do the laparoscopy and say that the original diagnosis of cancer is correct. But, I still can’t stop myself from hoping and feeling like my husband is not going to leave me. I also feel very angry at the doctors that have possibly misdiagnosed the cancer or, should I say, didn’t bother to do all they could to correctly diagnose his illness. I can’t help it.

This last 14 months or so have been extremely hard. I have been feeling physically ill myself and my brain is like mush. I have just started taking some time off of work for stress related illness and exhaustion.

The only positive thing that has come out of this so far is that we have had the chance to say how much we love each other and how much we mean to each other. We have become closer and appreciate each other more. That is something lots of people don’t think about until it is too late or you take it for granted.

Also, it shows you who your real friends are. Who is really there for you and who isn’t. I have some lovely neighbours and a few friends who offer more support than some family members.

I feel guilty for even moaning about this. There are many people on this site who are dealing with so much more and some who don’t have the hope of a second chance like we do.

I am praying for that second chance and I am praying for the lovely, caring and supportive people on this website. Your kindness, humour and courage are amazing and inspiring. Thanks.

Rant over.

Love,
Becky xxx

That's What I'm Feeling Right Now - Part V

2010-09-06T21:16:23Z

Hi Y'all,

I got mail today advertising some lovely cruises. I would love to book a cruise with my husband or go back to America with him like we did just before he got sick.

We had the honeymoon last year that we didn’t take when we were first married ten years ago. He got sick two weeks after we got back. It was a wonderful trip the best time either of us ever had. It was the first trip we had taken for just the two of us. Usually, our holidays were centred on the kids and visiting family.

One of the places we went to was Monument Valley, Utah. I am not kidding we both felt like we were spiritually different people after being there. It was truly amazing. We stayed at the hotel on the Navajo Reservation and our view from the balcony was the Mittens. It was a wonderful time. We also spent a week in Flagstaff, Arizona and saw the Grand Canyon, Petrified Forest, the Painted Desert and Sedona was gorgeous. The scenery was absolutely breathtaking.

http://en.wikipedia.org/wiki/Monument_Valley

The best of all was (this is sarcasm) Meteor Crater the world’s best preserved meteorite impact site near Winslow, Arizona! The Meteor Crater was hubby’s idea. It’s a big hole in the ground and it cost $15.00 each to see it. They even had guided tour walks along the edge of the crater. ‘Folks to the left we have one side of a tremendous hole in the ground and to the right is the other side of the tremendous hole in the ground…Thank you for visiting the Meteor Crater we hope you have enjoyed seeing the tremendous hole in the ground.’ (I am kidding they did not really say that) Hubby took pictures and they had a museum and you could actually touch a piece of the meteorite. It was great fun…if you have testicles. The last time I checked I was testicle free. It was a laugh though.

http://www.youtube.com/watch?v=ScG0ilS0dgI&feature=related

We also drove along Route 66 and saw lots of Harley’s and ‘The Road Kill Café – You Kill It We Grill It’ where ‘Thumper on the Bumper’ is on the menu at $3.95. Tasty bargain bunny if you ask me! (Kidding, I didn't eat Thumper). We saw lots of great old places and we met some really interesting folks along the way. That was really fun.

http://www.road-kill-cafe.com/roadkill.html

We ended up in Las Vegas for a week before returning. That was amazing too. Before we got married we joked about going to Vegas and getting married by an Elvis impersonator. The really do that there. I almost booked a renewal of vows when we were there but hubby talked me out of it. Now, I wish I had done it anyway. We also went to Death Valley, California and to an old ghost town. I always take a small rock or a bit of sand from places we go. There were signs everywhere ‘Beware of Rattlesnakes’ I let hubby go find the rock for me when we were there. LOL.

We made some lovely memories. I will treasure them. Oh, if we could turn back time. I would be so happy that I would gladly pitch a tent and stay in the damned Meteor Crater.

Hugs to you all,

Becky

That's What I'm Feeling Right Now - Part IV

2010-09-05T10:25:49Z

Hubby finally let some feelings out this morning. He says it he is so upset and frustrated. He almost wishes that the consultant had waited until after the blood test/MRI/laparoscopy to perhaps say, “Hey, I’ve got some good news for you. The cancer diagnosis is incorrect.”

Hubby says that right now he has to endure the next 4 – 6 weeks with three choices.

The diagnosis is correct and I am going to die.
The diagnosis is correct but it looks like I will have more time before I die.
The diagnosis is not correct and I am not going to die.

He asked me what I thought was going to happen. I had to be honest with him and say that I just don’t know. But, no matter what I will be there beside you. I also said that I didn’t think the consultant would say to us that the cancer diagnosis could be incorrect unless he really thought it could be.

The only real comfort I have is that I believe in the hereafter and I know that if my husband passes before me that we will be together again. We will always be together.

In July 2009, after being hospitalised for weeks, my hubby was diagnosed with cancer. I am not a person that goes to church every Sunday but I believe. I believe that there is more than this life we live in our physical bodies. I believe that our spirit or soul goes on. I believe that our loved ones are still with us at times even though we may not be able to see them and they will be waiting for us on the other side.

I have done some reading before and after my hubby got sick about how our love ones who have passed on can leave us signs that they are with us. Some see white doves or find white feathers. I also believe that we have Angels watching over us. They are helping us, protecting us, guiding us or just being there with us. They can give you a sign if you ask. Yes, I talk to my angels and my hubby’s angels. I pray for them to watch over us. I pray for guidance and for help to do the right things to help my husband, the family and myself get through this. It is always a calming experience.

I take my dog for long walks in the woods and let him run around. I have a special place in the woods where there is a fallen tree that is just perfect for sitting. I call it the praying tree. During our walks we always stop there. Sometimes, I really feel like I need let it all out and pray and cry. Sometimes, it is just enough to sit there for a minute and just breathe. Before I leave the tree I always try to say thank you to God and the angels for something I am grateful for. Like, I am grateful for having my hubby for another day or the smelly git of a dog that is with me, muddy from the creek and slobbering all over me. Sometimes I just say thank you and I let God figure the rest out.

Well, the first Angel Feather experience came soon after hubby was diagnosed and the dog and I were in the woods. I was walking up to the praying tree and I asked out loud for ‘my Angels’ to give me a sign that they were with me. I sat at the praying tree and prayed. Got up, walked ten feet and there were 5 perfect white feathers on the ground in front of me. I was so excited. So, in the days to come I asked for more signs. It was really freaky. I started seeing white feathers nearly everywhere I went. I started counting and collecting them. I would find, even in the mud and muck, a perfect clean dry white feather. I have a couple in my purse that I keep with me and a couple in the car. I had to stop collecting them after a while or I could stuff a pillow by now. I am comforted and calmed when I find them. It reminds me that we are not alone and sometimes it happens when I need a reminder of why my husband is doing annoying things like making me check tyre pressures or the oil.

Just a few weeks ago my husband was making me check the oil in my car and I was really irritated because I had just gotten home after a stressful day at work and did not feel like doing it. I bit my tongue and lifted the car hood and there was a white feather under the bonnet! My hubby said how on earth could that have gotten there and stayed there. I saved that one. I totally chilled out after that. Another reminder for me that he is trying to make sure I will be okay after he is gone.

You may think I am nuts. But so what if I am. I hope I haven’t offended anyone by talking about this. I know some people don’t believe. I just know it has helped get through some tough moments and has inspired me to be a better person. My husband was a sceptical person and over the past year he has changed his mind. He has found Angel Feathers too and has spent time with me at the praying tree.

I have more Angel Feather stories too. I hope to share them with you. Has anyone else had an experience with feathers or something they have taken as a sign? I have a friend at work whose mother has cancer and she believes the same as I do.

Big Hugs,
Becky
x

That's What I'm Feeling Right Now...Part III

2010-09-04T22:38:50Z

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

That's What I'm Feeling Right Now...Part Duh.

2010-09-01T17:47:52Z

This is my second blog post. I have been a little reluctant and a little scared too. But I decided that oh well, I am going to take the plunge. I am just going to write how I am feeling. Good, bad or indifferent and I hope I don’t offend anyone.

The reason I joined is because I need support. I am a wreck. I also want to help others if I can. If it also helps someone to read my loopy ramblings that is great. I am off work this week and have a little extra time to do it as well. Heck, if we were perfect and happy all the time I guess we wouldn’t need to let of steam or seek support. Personally, I intend to whinge and moan for England if I need to and be strong when I have to. I may even change my name to Moaney Moanerson. Just call me Moana. As you can see from my post it has gotten to the point that I am just a little past loopy. Lack of sleep will do that to you.

I got mad at my hubby yesterday and I yelled at him, “Don’t make me a widow yet”! I felt like poop about it too. I had better explain. He is writing a manual for me. Yes, a manual. It has instructions on everything I will need to know about maintaining the house and cars with pictures and diagrams. Yes, Everything. (And there will be a quiz later). Yesterday, there was a man here until almost 10:00 pm fitting parking sensors on the front and back of his car. He is so afraid I am going to bend it when he is gone, or not polish it, check the oil, or keep the leather seats conditioned etc.

Everybody repeat after me… “Armor All is our friend”.

Also yesterday, he was making me check the oil (again) in the car and wanted me to drive to someplace I was not familiar with using only the Sat Nav. (Yes, I have been quizzed on the use of the Sat Nav too). I have a bug and I felt like doing anything but. “I won’t be here forever to help you,” he says. That’s when I said, “Don’t make me a widow yet”. I am sorry about saying that. He is genuinely so thoughtful and loving. I know he is doing it for me. He is so wonderful and yet sometimes annoying.

I do hate driving. I am originally from Dallas and the roads here are so different and scary to me. I drive to work and the places I really need to go and that is about it. I am fine with that. Hubby is worried that I won’t get out and I will cut myself off from being with people and going places when he is gone.

I am crying now. I can’t think of anywhere I want to go without him. I want to be strong for him. He is the most wonderful man. He is so worried about leaving me behind. I am so lucky to have had him to do things for me and to be cared for and loved like that. I have never had anyone in my life care for me that way until I met him.

Yesterday, when the fellow was here doing the parking sensors, Hubby brought me in a perfect white Angel Feather. He found it lying on top of the car. It is just a reminder to us that we are not alone (and for me to chill out). I have some more Angel Feather stories to share another time.

Becky
x

That's what I am feeling right now.

2010-08-30T23:17:34Z

Today, just up the street, was a cluster of neighbours talking on the sidewalk. The news is that one of our neighbour’s wife died of cancer yesterday. I didn’t really see her that often and I see him slowly walking his dog occasionally. His dog is an ancient, overweight, mild mannered Jack Russell. Unlike my boxer dog Kojak who is the opposite of mild. I saw him out once walking just as slowly and carefully with her too. She was wearing her chemo headscarf and looked thin and pale. I remember saying to my husband that I had seen our neighbour out walking and she has cancer too. That was just a few months ago. It really makes me sad. I did not really know them. But, I wish I had.

My husband has cancer. He is not going to get well. I couldn’t help thinking that one day, just up the street, there will be a cluster of neighbours talking about us.

When my husband was in the hospital and first diagnosed I feel like I went a little crazy. I went home and screamed and cried. My poor dog just lay down at my feet and wrapped his front paws around my ankles as though he was hugging me. I never knew what keening was until I heard anguished wails and realised that they were coming from me. That was just over a year ago. They had given him 6-9 months. He has beaten the odds and is still hanging in there.

I am so afraid, devastated, scared, and heartbroken. Not to mention exhausted, depressed, hysterical at times. The hysterical part is usually late at night, when I am alone and sobbing quietly. I don’t want my husband to hear me. He is so lovely. His biggest worry is that I will be taken care of when he is gone.

The reality hits me sometimes and takes my breath away. I feel like I don’t want to go on without him. There are also times when I feel sort of numb. I guess you have to be that way sometimes just to function and not go bonkers. Though at times I think I have become completely unhinged. I am so seriously tired and stressed out that I feel like my brain is made of cotton wool.

That’s what I am feeling right now.