missing-u

Hi Lisa- wonderful that no mets were found to the brain! I know how absolutely time stands still while waiting for the results of tests and I wish you strength to guide you through those long anxious moments.

Your dad’s sense of humour is refreshing… he sounds like a really neat man! I’m glad that he feels up to going to the Flea Market tomorrow… it will probably feel nice to get out in the fresh air and to do something normal. I know he’ll not feel completely fine the entire time, but the outing will be good for everyone’s soul… these are precious memories and as I look back, the memories I most treasure are the simple ones.

Lisa… don’t feel that there is a certain expectation to post from those of us who respond and are concerned for you… there aren’t any rules or expectations- I think the more we get to know each other, the remote involvement sometimes means that we also anxiously await news and sincerely hope all is well. It is beginning to feel to me that we are a family of sorts, not connected by illness, but connected by the common denominator of the love we feel for one of ours who is experiencing one of life’s greatest challenges. So, our love and concern is what unites us.

Have a wonderful weekend with your family!

Missing U

Hi Lisa- I am sorry at this recent turn of events. You’re absolutely right, you have to respect your dad’s wishes. Perhaps if you can find out the impact that not going to the hospital will have on him and let him know, that way he is making an informed decision.

What initially brought my Dad to the hospital was constant vomitting- not holding anything down… and the pain as well. In Canada we have this toll free health advice number and when I called, not knowing what to do, they called the local hospital, explaining my Dad’s symptoms and called us back to have my Dad go in. It turned out that my Dad was dehydrated. He also had very low haemoglobin and was transfused. The doctor told us if we hadn’t bought him in, he was at risk of a heart attack due to the low haemoglobin. Although the transfusion and the IV fluids didn’t prolong his life (which was not our intent it the longer life meant longer suffering), but they did prevent further damage to his body and I am so glad he didn’t have to contend with anything else.

I’ve read and was also told that we may think the body is hungry or thirsty, but at certain stages of illness, the individual does not experience these things. Not much comfort when you watch someone seemingly starve… however, my Dad made his decisions and that amount of independence is significant when the illness seems to be determined to do damage.

We all know how difficult this is, Lisa. I also respect the difficult space you are in with your siblings. My own family kept telling my Dad stories of survivors and this was painful to hear, not every story ends happily, or with extended years of quality life. It seemed like too much unfair pressure put on my Dad. Like Joyce, I also had to bear much of the burden, being the only one who was realistic… often the cost was anger and hostility towards me… and I was sadder than most at what was occuring.

If he is sleeping that much and appearing confused, it may be excess ammonia as Joyce suggested. There are procedures such as stents which will ease the symptoms of this… and if he is in pain, it is important to have him comfortable. My Dad went almost immediatly to Dilaudid and it wasn’t long until he needed break through doses.

Peace and prayers go out to you, your mom and your dear dad.

Missing U

Hi Lynda- my heart goes out to you and your husband. I lost my precious Dad at 69 this year on January 13th, only 10 weeks after diagnosis. His cancer was at stage 4 and he had extensive metastatis to the bone.

I know you will find many useful resources on this site. Most importantly, you will find comfort and support from those who walked a similar path.

Prayers going out to you, your husband and your family. Your love and support will be the best medicine for him. I was honoured to walk along side my Dad on his journey, as was my mom. As heartbreaking as the journey was, I take great comfort in having been there until the end. It will be your presence, I believe, that will be the most significant way you can support him.

Thinking of you and hoping for the best,

Missing U

Hi Lisa- it looks like we were both posting at the same time… I posted just prior to your last one… I guess, I was hoping to encourage you with my response.

I agree with you wholeheartedly, each person is different regardless of the statistics presented.

I am so glad that your dad is eating better and the pain is being managed… this is truly wonderful news!!!

Enjoy the precious moments with your dad and if it is appropriate to say to him… please let him know that he has a group cheering him on in cyberspace… if not, just give him a hug from us…

Missing U

Hi Ginger- I am so sorry for the loss of your dear aunt. I lost my precious Dad on January 13th of this year. He was only 69 and had been healthy his entire life. My Dad had 10 weeks from diagnosis to death and when they discovered his primary, there was nothing they could do but keep him pain-free.

Ginger, it was a heartbreaking time for my mother and I, watching my Dad’s life slip away day by day. You’re right… at the end, the appearance is altered, an insidious characteristic of this thief of an illness.

My only comfort is that my Dad didn’t have to suffer years of pain and discomfort. My most significant comfort is that I had the honour of being with him until the end of his days here… both my mother and I had this honour.He knew how much he was loved and that is all we can do sometimes.

Your aunt sounds like a wonderful woman… it’s ironic, isn’t it that these illnesses seem to want to lay claim to the best among us? I am certain that she touched many along her way and that will be her legacy.

Mydeepest condolences go out to you and your family during this difficult time.

Brightest Blessings,

Missing U

Hi Lisa- It’s very frustrating not having a definitive answer. When we were searching for my Dad’s primary, it took about four weeks. During that four weeks I felt every grain of sand move through the hourglass and I was so worried we’d run out of time.

I couldn’t believe they were having a hard time finding the primary… where did that leave us? I tried to have them do certain blood tests- namely the CA-19 to find out in an uninvasive manner what tumour markers were triggered. Perhaps you can ask for certain blood tests that will help narrow the search?

It sounds as if your dad is feeling better and that is wonderful news. The fact that he was hungry is so good to hear and sounds very positive. It also sounds as if he has a more hopeful perspective and an individual’s mental outlook can be a big source of healing. Your dad is trying and when he feels a little bit of his strength returning, he will probably feel even more hopeful and who knows what positive effects that will have?

Although his search for the primary has not concluded yet, on the positive side, there is still a chance that for his cancer, there are more options than if he had CC. This is what I hoped for with my Dad. It might be a bit of a reprieve.

You asked how could there be no lung involvement if they determined that his primary was lung. At one point the doctors were saying my Dad had cancer of an unknown primary and I asked the same question. I was told that there may have been a tumour but my Dad’s immune system may have broken it down and that it only took one cell to “land” in another area to metastasize. This angered me greatly… to think that my Dad’s immune system worked and fought off a predator, only to have a small spec resume it’s invasion elsewhere. What I understood with cancer of an unknown primary was that they can determine the general type and use chemo that targets that type. It is still a way to treat the symptoms, the unfortunate aspect is that a specific target is more effective.

What I learned was that it doesn’t really matter which cancer one has, the doctors can be dumbfounded. Cancer appears to be a determined foe… it can manifest differently and individuals can present differently as well. My Dad’s CC metastasized to his bones and I am told that this is rare. That keeps me wondering if he did in fact have CC. The other day I wondered if they made a mistake, I was actually going through the situation in my mind when I recalled them doing a procedure to place a stent to help his bile drain… obviously they wouldn’t do this if it wasn’t CC.

It’s scary to think that medical professionals don’t have all the answers, but it does happen. What I have learned is that regardless of the diagnosis, the journey is similar… Hang in there, Lisa… we are here to support you and your family. I am really pulling for your dad and I am so glad that he is feeling better.

You mentioned that you didn’t want your dad to have false hope… I think that as long as a heart beats, there is hope. Hang onto that, Lisa. I recall what my dear friend said to me, these were the words that pulled me through and pulled me up “let him see hope in your eyes”.

Prayers going your way,

Missing U

Hi Lisa- what I did was hope for a miracle, but inside I had to be realistic with what was happening. My philosophy is that we never know what is in store, so temper your realism with a dash of hope, because many miracles have happened and continue to happen each day.

This is your dad’s experience, for the most part… I really tried to gauge what my Dad needed from me and tried to react to that. If I felt he needed hope, I gave it to him. If it was reassurance he needed that we’d be ok, I tried to do that too. There were times when I just wanted to cry and cry, in front of him telling him that this was so unfair and I was just so heartbroken that this was occurring.

My Dad had a hard time with emotion… extreme emotion… he was ok with tears, but not with heartbreak. My mother felt strongly that we shouldn’t show our emotions around him so as not to deflate him. So, I imagined a moment where I’d have a talk with my Dad as is recommended in all those books… but there was never that “moment”… it was not my choice… please try to keep in mind that there are so many resources out there to tell you how to let go, but those resources don’t speak to every situation.

I was not able to have the talk I thought I should have because there wasn’t the right circumstance. I felt that I was robbed of an opportunity until I realized these books are often written for an ideal and a norm. Lisa, there is your situation and that is unique. You do what you feel is right and what is in your heart to do and say. That is what will pull you through. I also realized that that “talk” was more for me… I refocused on my Dad. I was so lucky that in my life nothing was ever left unsaid with my Dad… he knew how loved he was and I am so grateful for that.

So many times I wanted to chat with him and share memories, but towards the end he needed rest and I was only able to just be with him silently. But there is nothing wrong with just being there. That is important too… that is rarely mentioned in those accounts. Illness is exhausting… there must be a comfort experienced by our loved ones when they open their eyes and see their closest loved ones there, not expecting anything more from them than their very presence. So… don’t have any expectations for yourself and for the process. Follow your heart.

Think of what will sooth your dad and try to do that if you can. Those last few weeks when my Dad was sleeping a lot I read Final Gifts which comforted me much.

Lisa, I don’t want to be the reason you lose hope… but if you find that things look like they are not going to improve and if there is an end in sight, one thing to keep in mind… I don’t know what your religious beliefs are and I don’t want to preach mine… I believe in a life after this one… at the end of my Dad’s life I imagined that my mom and I were holding his hand just until someone else took it on the other side. I saw it as a sort of birth for him and as such I wanted to help him in that moment by providing love, support, telling him what I felt, etc. It might sound odd, but I truly felt that by doing that we were helping his transition be a peaceful one.

So… your best course of action is to be aware. I’m not suggesting to suppress emotion, but be aware of what your dad is saying and wanting. He may not want to take his meds and that is his choice, but there are some meds that will really help with the pain. Make sure you investigate side effects too because the stronger the med, the stronger the side effects sometimes and as a result, more meds will be prescribed to deal with the side effects. Also, my Dad experienced difficulty with nausea and vomitting that the meds didn’t help with. Eventually it was discovered that his stomach wasn’t absorbing the meds properly, so he took them intervenously and that helped him immensely.

My prayers are with you and your family hoping that your dad will be able to be helped.

I know how very difficult this is, Lisa… your dad is lucky to have such a caring and loving daughter to watch out for him.

Bright Blessings,

Missing U