My father is a 10 year cancer warrior, lately he is showing signs of anxiety/depression...

randy714

My name is Randy. My father's name is Joel. Joel was diagnosed with Stage IV Nasopharyngeal Carcinoma back in 2000. Originally, the doctors advised my father and the family for a rough road since the cancer had metastasized through his body (spine, above liver, neck). After several rounds of chemo, radiation, every alternative herbal therapy, spiritual, diet, etc he has survived 10 years now. He has no saliva, no smell, significant paralysis of his tongue, kidney damage, skin damage around neck/face, ulcers, and the list goes on. The side effects have impacted him in every aspect except his will to live.
Recently, his oncologist found that several tumors has doubled in size over the last 5 months. However due to my physical condition, the doctors are not so willing to expose my father to anymore chemo. in addition, the location of the tumor (wrapped around his spinal cord) will not allow another radiation round. Since, January he has been in significant pain (managed by pill form of morphine) resulting in significant anxiety and emotional ups-n-downs. He has become detached from the family & friends. He began submitting for clinical trial all around the world for his type of cancer. About 3 weeks ago, a research group located in Boston has contacted him. He was on a "high" for about 2 weeks. We have submitted hundreds of pages of medical records, doctors summaries, etc. He has been getting extremely frustrated with the hospital and the research group for not making things move at light speed. He actually confronted a representative from the research group just a few days ago asking "why do you need all my records - why not cancer related only?" I told him to just give them everything they need instead of filtering it out - all this will do is slow down the screening process. He then confronted the records admin at the hospital yesterday because they weren't able to give him 10 years worth of records in a few days. Yesterday, he made the statement "at this pace i will dye before they even can help me" and broke down crying uncontrollably over a few hours. This is the 3rd time I’ve seen him cry in the last 10 years. Prior to cancer I never saw him cry. You can say he is thick skinned control person. I found out from my mother that he has been skipping his Ativan pills and that the morphine has not been effective in managing his pain. My sister and I want to sit down with my father to address his anxiety however he has been extremely irrational lately. Need advise on approaching the subject of possibly increasing his pain meds and addressing his anxiety. Please help!

AnnaLeigh

Getting Dad to talk
Randy,

This must be a very difficult time for you and your family when you realize your dad is no longer The Warrior but also is not open to letting any one else help him with his battle. You may want to try ASKING him questions about his level of pain and anxiety in order to get him to open up and talk about the subject. After you have really and earnestly listened to him, he will be more receptive to another person's input and suggestions. I know how stubborn fathers can be, and approaching him with directives or sermons on what he should or should not do, only serves to shut their listening down.

Skipping the Ativan medication has probably contributed to his emotional roller coaster and caused him to exhibit things that are out of character. Approach him with love or approach him with humor. You know him best and you know what he would normally respond to. Your dad is having to process so much right now (medical information, medical staff, new diagnosis, feelings of mortality) that he is probably on overload. Please find out if he will allow someone to assist him in taking care of all of this frustrating paperwork and the process it involves. It sounds like he is dealing with way too much physical and emotional stuff to be able to be rational right now.

Small suggestion about pain management to discuss with your dad and his doctor. Morphine and opiate pain relief is available in patches that adhere to the skin and deliver a constant dosage. This can be supplemented with oral pills as well for the times when break-through pain can occur. Patches are easier on the digestive system and deliver constant relief. Constant pain wears on a person and can cause depression and anxiety.

It is so obvious that you love and care for your father and I hope all of you will tell each other daily how much you value each other.

Please keep us posted on how you, your father, and family are doing. We care and will honestly and earnestly listen.

AnnaLeigh

grandmafay

Frustrating
I can certainly understand your father's and your frustration. After a 10 year fight, he shouldn't have to deal with paperwork, etc. Unfortunately, hurry up and wait often seems to be the name of the game. I agree that it would be great if you can get someone to help with the paper work and the phone calls that often go along with it. Crying may be one way to relieve some of the frustration. It is hard for us to experience, but it may be a good release. Just hang in there and give your dad as much reassurance as you can. You have all been through a long haul. I'll be thinking good thoughts. Take care, Fay

bluerose

Hi Randy
First let me say that I am a 20 year survivor of non hodgkins lymphoma and really I shouldn't be here with all the medical issues I have had since my diagnosis and transplant I had to have for the cancer. But I am. First let me tell you that miracles happen all the time and no one can predict how a cancer survivor will do long term but there are lots of us long term survivors out there so there is definitely hope.

I know how your father is feeling. Pain can wear you down over time, it has for me too, and at times when emotionally you aren't as strong it can grab you and take you deeper into anxiety and despair. I would strongly encourage you to find a good counsellor to help you help your father - have your Mum and yourself and any other family members who will go come with you and talk to them about how you can help your father through this. If you can get him to go that would be excellent but I have a feeling he might not be up for it now but you never know. He might feel it's just one more doctor and he is probably sick of them by this time, I get like that too.

Cancer survivors go through alot of stages of anger, fear, and many more stages and its important to go through them all but not to get caught in any one of those stages for too long. Also there are pain clinics and specialists in pain who might be able to help him through as sometimes morphine and other meds will stop working well after awhile - his doc might also be able to do something for him in that regard too.

Sounds like he has good support from you and his family and that's very important. Also if he feels like coming on this site there are lots of people on the discussion board and in the chatroom we have here too that are ready and willing to talk to him or you for that matter as well.

All the best and hope your Dad finds some kind of emotional relief and physical relief too as well.

Blessings,
Bluerose

Barbara53

gently taking over
Like you, I'm caring for a terminally ill parent who has always gotten her way, but she's not functioning fully anymore, so I have to gently take over almost everything. She declared herself in remission 6 months ago, and finally finally agreed to see her oncologist last week due to lots of symptoms. Anyway, it's really frustrating to deal with our family matriarch as if she was a four-year-old, and what comes out is a very interesting mix.

Maybe some things don't need much discussion. Your Dad probably know more than he's letting on, and he's mad. Heartbroken. Why shouldn't he cry? I would!

What Mom is liking is spending lots of time reminiscing. She's helping me as I create a powerpoint of her life by scanning old photos. It's really time consuming, but I'm hearing so many wonderful stories I never heard before. In a way, it's like the medical mess is almost over, and we're moving on with the business of ending a wonderful life.

randy714

Barbara53 said:

gently taking over
Like you, I'm caring for a terminally ill parent who has always gotten her way, but she's not functioning fully anymore, so I have to gently take over almost everything. She declared herself in remission 6 months ago, and finally finally agreed to see her oncologist last week due to lots of symptoms. Anyway, it's really frustrating to deal with our family matriarch as if she was a four-year-old, and what comes out is a very interesting mix.

Maybe some things don't need much discussion. Your Dad probably know more than he's letting on, and he's mad. Heartbroken. Why shouldn't he cry? I would!

What Mom is liking is spending lots of time reminiscing. She's helping me as I create a powerpoint of her life by scanning old photos. It's really time consuming, but I'm hearing so many wonderful stories I never heard before. In a way, it's like the medical mess is almost over, and we're moving on with the business of ending a wonderful life.

Thank you.... Progress
Thank you all so much for the response, advise and support. I absorbed all responses and shared them with my sister. We approached my father late last night. After spending some time watching the Winter Olympics and discussing the strange sport of Curling, my father actually started to discuss his recent behavior change and expressed his concerns. We are totally caught off guard. In addition, he told us the most recent test results and explained the actual measurements of his main tumor. He explained how the tumors have been more active in the recent months versus the last couple years. He explained how his social "friends" have abandoned him over the last year and that he has no social life. After talking, crying, yelling, he even asked if we could talk to his oncologist ASAP to discuss his anxiety and confusion. He also agreed to follow the suggest pain med dosage in stead of using the minimum amount to bring the pain down to "bearable." He seemed like he really need to let it all out on his own terms.

I am so thankful for this forum and for the wonderful people that have responded to me. We have added all of you to our nightly family prayers.

bluerose

randy714 said:

Thank you.... Progress
Thank you all so much for the response, advise and support. I absorbed all responses and shared them with my sister. We approached my father late last night. After spending some time watching the Winter Olympics and discussing the strange sport of Curling, my father actually started to discuss his recent behavior change and expressed his concerns. We are totally caught off guard. In addition, he told us the most recent test results and explained the actual measurements of his main tumor. He explained how the tumors have been more active in the recent months versus the last couple years. He explained how his social "friends" have abandoned him over the last year and that he has no social life. After talking, crying, yelling, he even asked if we could talk to his oncologist ASAP to discuss his anxiety and confusion. He also agreed to follow the suggest pain med dosage in stead of using the minimum amount to bring the pain down to "bearable." He seemed like he really need to let it all out on his own terms.

I am so thankful for this forum and for the wonderful people that have responded to me. We have added all of you to our nightly family prayers.

Great News
Oh Randy I am so happy to hear that your Dad has started to talk through his cancer concerns and issuues. That is such a wonderful sign on so many levels for both you and your family. Wonderful.

Sometimes just taking part in family time like you all did watching the Olympics can lead into discussion of things that are on individual family member's minds and sounds like that is exactly what happened to him. In that setting you were all so at ease with each other and he felt safe and was able to let some of it out - WONDERFUL.

Curling? Strange? lol. I am Canadian. Say no more. lol. I think the Olympics opened alot of eyes to this fascinating sport. Or are you all still laughing? lol.

Anywho just wanted to tell you how happy I am that he is talking now, what a relief that must be for him and your whole family.

Blessings, Bluerose

grandmafay

randy714 said:

Thank you.... Progress
Thank you all so much for the response, advise and support. I absorbed all responses and shared them with my sister. We approached my father late last night. After spending some time watching the Winter Olympics and discussing the strange sport of Curling, my father actually started to discuss his recent behavior change and expressed his concerns. We are totally caught off guard. In addition, he told us the most recent test results and explained the actual measurements of his main tumor. He explained how the tumors have been more active in the recent months versus the last couple years. He explained how his social "friends" have abandoned him over the last year and that he has no social life. After talking, crying, yelling, he even asked if we could talk to his oncologist ASAP to discuss his anxiety and confusion. He also agreed to follow the suggest pain med dosage in stead of using the minimum amount to bring the pain down to "bearable." He seemed like he really need to let it all out on his own terms.

I am so thankful for this forum and for the wonderful people that have responded to me. We have added all of you to our nightly family prayers.

Progress
That is wonderful progress. Now you can all work together. I will hold you in my prayers as well. Fay

randy714

grandmafay said:

Progress
That is wonderful progress. Now you can all work together. I will hold you in my prayers as well. Fay

It gets better
Hey All,

Again thanks so much! We just got notice from Harvard - they want my father to come out to Boston, MA. Out family spirits has rised and my father's attitude has made a 180 degree change... Amazing stuff. We do realize clinical trials are not the end all solution however the fact that he can get involved with something that can make difference for the future is all he needed. He has become very open - strange.. We're not used to it. I'll keep you guys posted.. Thanks!!! Randy

AnnaLeigh

randy714 said:

It gets better
Hey All,

Again thanks so much! We just got notice from Harvard - they want my father to come out to Boston, MA. Out family spirits has rised and my father's attitude has made a 180 degree change... Amazing stuff. We do realize clinical trials are not the end all solution however the fact that he can get involved with something that can make difference for the future is all he needed. He has become very open - strange.. We're not used to it. I'll keep you guys posted.. Thanks!!! Randy

Keep the communications open
This is awesome news for you, your dad, and your family.

It is also a wonderful opportunity for you to get to know your dad as a man. Man-to-man. You will be amazed !!!!

And you will always be thankful that you took the time to see him as someone other than just "Dad".

AnnaLeigh

appleyellowgreen

randy714 said:

It gets better
Hey All,

Again thanks so much! We just got notice from Harvard - they want my father to come out to Boston, MA. Out family spirits has rised and my father's attitude has made a 180 degree change... Amazing stuff. We do realize clinical trials are not the end all solution however the fact that he can get involved with something that can make difference for the future is all he needed. He has become very open - strange.. We're not used to it. I'll keep you guys posted.. Thanks!!! Randy

Boston News!
Randy -

I haven't commented because you have been getting fabulous advice and feedback. Your news is wonderful. It is amazing what HOPE and ACTION can do for a patient.

Your dad's willingness to communicate must come as a great relief to you. That too is a wonderful surprise after your past agonizing on this topic. You have dealt with all of this so well and the outcome is the evidence.

Where in Boston will the tests be done? My husband had surgery in November at Brigham and Women's, that houses Harvard Med. Our surgeon moved from Boston to New York City and then back to Boston. He was wonderful so we followed him.

I will follow your posts for progress reports.

AppleYellowGreen

bluerose

Yikes, in many ways your Dad could be me
Hi Randy,

First of all let me say how sorry I am to hear that your Dad and the family are experiencing so many issues with side effects of treatments, me too. I am not in the same place as your Dad in type of cancer or stage but am a 20 year survivor of non hodgkins lymphoma. Although his cancer and mine are different, side effects from meds and just dealing with a long battle with cancer itself are often the same in many survivors, me being one.

The first thing that jumps out at me is that your Dad 'withdrew' from ativan quickly, or so it sounds, and I would look to your pharmacist for ideas as to whether this in itself could have caused an anxiety situation or depression or both, mood swings too. Secondly I find the morphine issue interesting as I am on morphine and have been for a long time, by capsule as I think you said your Dad was (well pill), and I have in the last 6 months been battling the worst anxiety I have ever had. I am now wondering if it's from the med instead of just from other emotional issues linked in great part to long term survival with many sideeffects. I will check with my specialists for sure about that.

Of course your Father is in a much more dire situation right now with cancer than I am for sure and I think that he is quite obviously depressed period and who wouldn't be. Still the long battle with cancer and side effects for us 'long term survivors' can in itself rise and fall in emotions soemtimes seriously, we are simply sick and tired of being sick and tired and for your Dad on top of that he is facing trials too.

I have never been in a trial but the stresses of waiting and hoping and praying and being discouraged by statistics and docs appointments and invasive testing are huge for the survivor.

My recommendations, having been there and still am in many of your Father's issues, is that first I would call his pharmacy and check on the side effects caused by going off ativan cold turkey. Secondly I would ask again about morphine side effects and anxiety and in fact any other meds that might produce the anxiety he is experiencing. Ask the oncologists too but you can get answers today from the pharmacist for sure. Does your Dad see a counsellor of any kind, do you on his behalf? That's my other suggestion, they really know the ropes, especially the grief therapists, but get a true professional like a psychologist who specializes in grief and traumas and that might guide you to explore other ways to help your Dad.

I feel for your Dad as I am there too in many of his battles which are my battles as well, be patient with him and see that counsellor for more assistance on how you can help him and guide you in helping yourself through it all as well.

Blessings to you and yours,
Bluerose