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I hope you and your family have some quality time with lots of good memories, laughs, hugs, and peace. I have not yet experienced sharing the end of life with someone. I lost my father due to a car accident 9 years ago, so I didn't get to say good bye. The thought of having to walk with someone at your father's stage of life is terrifying to me, so when I come up to that experience in my life, I will remember your posts and that book. I guess we will never know which is worse, a long, sad good bye or not having the opportunity to do so. You are a strong person and a good son for being so supportive of your Dad and step mom. Your Dad is your hero, but I'm sure in many ways you are a hero to him. Just think of the pride and satisfaction he must have for you knowing that he raised a compassionate, loving, and loyal son. I wish you peace and comfort in the coming time.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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Having walked this path with my dad (sister and mother) I have much empathy for your struggle. It can be a dark and lonely place. It forced me to look long and hard at my own mortality and that was long before I had cancer. I suppose that it prepared me somewhat for my own experience with cancer. Soon after my initial Dx, my wife and I did a living trust, will and advanced directives.

Some of the things I learned about the journey are that the human body is remarkably resilient and death is not always an easy or forthcoming thing (in spite of how frail a person may appear - he was quite lucid until his last breath). My dad had non Hodgkins lymphoma and lived much longer than we expected. He was down to under 80 lbs when he passed. His pain symptoms mitigated as the body was slowly shutting down. A year ago I revisited this journey with my MIL when she died from a botched surgery. The hospital staff defied the DNR orders and broke her ribs attempting CPR and also mortally wounded her from damage to the recent surgery.

If he is at home and goes into arrest, call the hospice people - not 911, as EMT's are required to take heroic measures to resuscitate. At least keep a copy of the DNR on the refrigerator door and this may prevent this procedure from happening in case EMT's are called. I also believe that, in many instances, we actually choose the time of our death. My dad died during my one day off (and he knew how distressing this whole thing was for me). I can't speak highly enough of hospice care. They educated all of the caregivers, provided all kinds of aids. Insured a pain free quality end of life, provided assistance with bathing, respite care, visiting nurses and bereavement support afterwards.

I am sorry that you have to go through this but losing your parents is a rite of passage. This is also the time to converse, express, remember, dot i's and cross t's, find out family "mysteries" and many other wonderful aspects of your lives together.

On my fathers death bed he revealed to me that I had 7 brothers and sisters (I was always told I was adopted because I had a single mother which wasn't acceptable in the 40's as it is now).

Last edited by Gary; 11-26-2011 11:54 AM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Sep 2011
Posts: 4
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another couple of crazy weeks. I do have to call out that it's been about 6 weeks since my dad was referred to hospice. You have to be thankful where you can. Also, I can't stress enough how much the book "Final Journeys" has helped.

So, last week, things take a different turn. My step-mom caught the bug going around. She was self-medicating, etc. She finally gives in and goes to the ER, thinking she would see a doctor, get an RX, and be back home in no time. She was admitted into the hospital with pneumonia, and was there for another 4 days. Luckily, with me working in IT, I was able to work from home the entire week and care for my dad (ok, we watched westerns all week long. I highly recommend Encore Westerns.) I bring this up because I think this is all too common for the primary caregiver to not care for themselves. It's an extremely tough job watching someone 24 hours a day, as they slowly deteriate. Sometimes, though, you have to let things run their course and be there to pick up the pieces... There's no shame in being second-string caregiver (and keep in mind, the care is part of the grieving process.)

So, my dad had the bug the week before. I was glad that hospice did treat it with antibiotics. I was a little concerned that they would say "oh, it's part of the cancer, it's just part of the process." He did really good last week (for where he is.)

Again, I'm back to thinking we're taking some final steps. A couple of things that I've learned;
- People dying of cancer lose weight. They also lose their appetite, this is part of it. Don't keep telling them how much weight they're losing. They know.
- The reason they are losing weight is that the cancer burns the calories faster than your body does. Therefore, the more you feed them, the more you're feeding the cancer. This one is tough, but at this stage is all about comforting the patient. Listen to Hospice on this one.
- I've noticed that there is an increase mucus in the throat. I'm thinking this is part of the cancer taking over. Additionally, as he was suctioning out the mucus today, a piece of his tongue came off. I'm thinking that can't be good.
- This is a tough time for the patient. You're sent home, basically expecting something big to happen. Yet, you get home, and nothing is happening. After a while it starts to get old, I'm sure. On one hand, they don't really want to leave. Yet on the other, this crap of just sitting around kind of sucks. As the caregiver, or even second-string caregiver, just being there is good. Don't sweat about what you're going to talk about, or try to make conversation. Sometimes just being there is enough.

Anyway, I hope this helps someone.

Robin


Father was diagnosed in early 1980's with Oral Cancer.
-Surgery+Radiation+Chemo
-Recurred in 2010
-Began treatment at MD Anderson in Houston, TX
-Scan in summer of 2011 showed mass in neck
-Further scan found cancer in lungs, spine, legs
-October 2011 - stopped treatment, referred to hospice
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"OCF Canuck"
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God bless - my wish is that he begin to feel stronger daily and his body fights this disease. Good for you for spending time with him watching westerns that's fantastic. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Robin,

You have learned a great deal and are well prepared...as much as a person can be, anyway. Thank you for the insights and resource recommendations--particularly the book, "Final Journeys".

Those westerns will become a part of your cherished memories and family folklore. Create as many of those memories as time allows. There are never enough of them.

I sat with my dad while waiting--a precious, and all too short length of time. He told me stories about his childhood and teen years. I was fascinated. He had never shared them before. I think he had things he wanted me and our family to know about him and remember. My sons are now 12, 18, and 21. I find myself telling them the stories about when my dad was their age. I'm glad I can bring him into their life through stories. More than anything else, I feel blessed to have had that time with him.

May the memories you create together sustain you as mine have sustained me.

Sending wishes to you and your father for great peace as his journey continues.

Sandy
xoxox



Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Robin,
Thank you for your very wise words. I too went through this with my Dad. It was a very hard time but a gift as well (although it wasn't readily apparent at the time). He also had cancer and the weight loss is part of it. My Dad was less then 80 lbs. at his death. Some remarkable things I learned are when the body starts to shut down, the pain ceases and also there is no sensation of hunger or starvation even though they are not eating (or eating very little). This is all part of the natural process of dying, but can be very disconcerting for the caregiver. The mucous buildup in the back of the throat is normal as well and will cause a "death rattle" (you will never forget this sound). Death is imminent, usually within 24 hours, at this point. It was a gradual process with different organs shutting down in sequence. It surprised me how resilient the human body was and length of the process. My Dad was lucid right up to the end and we had great conversations and time together that I will cherish forever.

God bless you as you go through this journey.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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