My husband and I have been at the Cancer center of our choice for the last week.
Alan was diagnosed with oral cancer for the third time about a month ago.
We went to the clinic to find out what kind of cancer and how bad was it and what were the treatmwnt options. It was a roller coaster of emotions and tension. Now a week and a bit later we are home.
After finding our it is the same cancer he last had in 1991. It is in his tongue, ear canal, the new jaw bone from the reconstruction, the front of the mouth area and down as far as the larex. It is moving at an excelerated rate,as initially when the GP sent him to the ENT three months ago they only saw a patch on his tongue and a little on the back of his throat.
There was only one treatment option, an extremely radical operation taking the jaw bone , the tongue, the larex, part of the inner ear, and the lymph nodes on the right side. He would be breathing through a stoma and eating through a stomach tube. There would be no new jaw bone. He would be having troubles swallowing, probably drewling. Oh there were no guarentees that they would get it all and they still gave him less than 20% chance of surviving five years. Oh and by the by because of the radiation treatments he had before he may not heal so he could end up with open running sores and being in the hospital till the end anyways.
At first he decided to go for it but after some deep reflection and relization what it would mean and more descusions with the medical people he has decided to take quality of life rather than length of life.
I am glad. I was willing to support any descion he made but this one means more time for us. Instead of in the hospital we are planning a wedding with our eldest son, and a trip to the coast in July. He is looking at finishing off the workshop and completeing some woodworking prodjects he had been promising.
The doctor's said any where from three months to less than a year but at least it will be a family time not a medical time.
Sorry for the spelling errors.
I was hoping some one could give me an idea of what to expect roughly of course since each person is different
Thanks.

Mar, I'm really sorry to hear the terrible news. I have a great deal of respect for both of you, taking what is an impossible decision with courage, determination and resolve.

I fully understand your husbands decision. I'm not sure if it is the one I would make, and I pray I won't ever have to find out.

As for what to expect...I don't know. from descriptions I have read, it's a cruel type of cancer in end stage...not that they aren't all cruel. I really think that would be a question best asked of his Doctors.

I see you're in Prince George. that's beautiful country; a relative of mine was the fire chief there for many years until recently. what cancer center are you going to? I assume it's in Vancouver.

I wish I could offer you more in terms of encouragement or answers. Others may well be able to do so; know that there is another Canadian here, thinking about you
Wayne

Thanks Wayne; Actually we went to the Tom Baker Cancer Center in Calgary and saw Dr's Dort And Matthews. Then we saw a team of Dr's including Dr. Burke. They basicly all said the same.
I must phone Vivian tomorrow to tell them he is not haveing the operation. Half our Family lives in Calgary.

Mar,

If you get an opportunity, please read through the thread discussion I started back in December (Refused all treatments) in this same forum.

My mom chose to do nothing when diagnosed with oral cancer in March, 2006. In golfer terms, she is long into the back 9 (I fear on the 18th tee about now)... Two different doctors diagnosed her as level T4 cancer. No procedure was done (not even a biopsy).

The one thing I have learned from talking to the hospice nurse and caregivers is everyone is different. The cancer location matters. The direction it grows matters. That combination makes it difficult to predict.

My mom's tumors were originally pinpointed to the roof of her mouth (pallet), right side of her head and back of her throat. They also noted two unknown masses on her lungs. As you will see from my thread, her main problem now is difficulty in eating (she has severe pain when chewing). Her cancer seems to be mainly attacking the right side of her head. This is one of the few positives so far (since my mom is a side sleeper and can still sleep on her left side).

Her pain points in no particular order are presently:

1) Right ear pain at times (knife stabbing type pain). Significant at times but is controlled by the Vicodin.

2) Right jaw bone. Chewing is painful. Her eating ritual involves taking out her dentures and applying pain gel. Then putting her dentures back in. She is now limited to very soft foods.

3) Nasal flaps failing to close when she swallows. This forces fluids back up the nasal canal and out her nose. Given all the frustration in eating, this one is the most aggravating for her.

4) Limited passage when swallowing... My mom cannot swallow pills (must be liquid form). Also, anything larger than a piece of corn will not pass down her throat... She is mainly eating soups and her ice cream... Ensure drinks sit in her fridge until they expire. She refuses to drink them claiming my dad didn't like them so she will not drink them (amazing...).

5) Her voice... She hears echoes in her head whenever she speaks. Not pain, just annoyance... To me, she sounds as though she has a bad cold.

6) The most recent growth area is the right side of her neck (straight down from the ear). This new location is extremely painful to the touch.

My mom's cancer did not spread to her tongue. Although, since she cannot open up her mouth wide enough to see, it may have spread to the tongue but we just don't see it.

My advice is to focus on the past and immediate present. Try to eliminate dwelling on the future. He will need hospice nurse visits. Initially, my mom had the nurse come once per week. They are wonderful people. I need to stress one thing... When I said focus on the past and immediate present, I was mainly talking about you... As the full time family member caring for a sick loved one, you need to remain in a positive frame of mind. Avoid as much as you can silently grinding over the inevitable end. I know this sounds silly (and perhaps difficult or impossible to do) but this is extremely important for your own personal well being. Focus on the good memories. Whenever the illness comes up, I try to focus on the present changes in her symptoms. Identify the cause and try to come up with a solution that alleviates his discomfort as much as possible.

Whenever I am there (pretty everyday...) I often bring up non-illness related topics (some goofy minor thing with my kids, the house, work, a recent old neighbor that visited my mom etc). Pretty much anything that takes my mom away from her illness (even if it is only for a few minute discussion). These discussions often lead to reminiscing about my dad. I cherish those moments. Keep it simple and never bring up any serious long term challenges (affecting you). You don't want your husband to fall into a deep depressed over something he perceives he will not be around to help you through.

It is a journey...

Good luck and write whenever you wish,
Paul

I read over my update... I need to retract what I said about not bringing up any serious long term challenges... I spoke out of line and I apologize. I am dealing with a sick mom and not a marriage partner. I expect there will be topics he needs to work through concerning your future after he is gone. I am sure my mom dad had those same discussions while he was going through his final journey.

Thanks,
Paul

Mar,
that's AMAZING. Dr.'s Dort. Matthews and DeHaas did my surgery, a year ago on June 5. Amazingly talented men, all three.

my experiences with them have been that they are very straight shooters as well; they will tell you the truth, outline all of the potential problems, and leave the decisions in your hands. I vivdly remember sitting waiting to go into surgery, all prepped, vascillating from second to second whether or not to just get up and run.

I was more frightened than I have ever been in my life. right around the time when the running was starting to really seem like the best plan, Dr Dort came out, put his hand on my shoulder and talked to me, face to face,man to man.

He promised me they would all do their absolute best. He told me they would take complete care of me, and that I had nothing to be afraid of. I would see my wife again, and my family and everything would be OK

Had he not been the compassionate person that he is, I doubt if I would be here today. I'm near certain another 2 or 3 minutes I would have bolted.

I wish you, your husband, and your family well. Feel free to send me a PM anytime, and I'll give you my number. I'd love to chat with you if you make it to Calgary
Wayne

Dear Mar, Having recently been through a good bit of what you may face, I would be very willing to talk to you via e-mail or phone anytime you wish. In most respects, this will be a very personal journey for you, however, there are some "hard core things" that others of us have experienced and had to figure out a way to deal with. It's hard to guess what questions you want answers to now [and I suspect they will change as time goes forward]. Just want you to know that we are feeling your pain. Amy in the Ozarks

Hi Mar,
I would find out about hospice programs in your area so that you have the help you need. They are also trained at assessing and managing symptoms and will interact with the medical team on your behalf as his condition changes. Pain management seems to be the biggest issue and there's a wide range of medications that are very effective.

For what it's worth I think this is a good decision for the cirucmstances. Jack's mother died from leukemia last August and spent her last 3 months suffering thru treatments that were never going to work. We tried to talk her out of it to no avail. She didn't get to do the things she wanted because she was sick from side effects or at the hospital for treatments. In the end she died from a complication and was not prepared.

Hospice allows you to deal with this as a family in the surroundings of your own home. There are important discussions to have, including how much you love each other. We will all be facing this situation for ourselves or loved ones at some point and I wish you both well.

Regards JoAnne

My thoughts will be with during this horrendous time

Liz in the UK

Update on Alan:
We were back at the Cancer center twice since May. In June He Couldn't have radiation or chemo because he was too fragile to withstand the treatment. The dr's talked him into the PEG tube.
The PEG has made all the difference. He is still losing weight but is no longer dehydrated. He gets all his med's through the tube except the Fentanol which is on the patch. Alan only manges sipping water by mouthand prefers it with a little rum. Thank you.
This last visit to the Cancer Center was just frustrating. WE saw an associate of our main cancer oncologist. She decided that Alan needed anothe CT scan because the steriods work at giving him back his mind. This means brain cancer. With Brain cancer no chemo. Apparently they missed the fact he got really bad headaches. We got back to PG and the dr's office here didn't know about the need for another CT scan. Alan doen't want the radiation treatment for the brain cancer.
The only good thing about the trip was seeing our kids again.
We are taking one day at a time. I get so tired and have started falling again. I hope I am not going into another CFS bout. Stress does seem to do it. Then what?

Oh Mar i am with you in spririt and wishing you like me will survive this terrible journey we are going through.Last week the Doctors flagged up Robins headaches and muttered about seconderies.Still with the steroids taking the swelling on his face down the pressure seems to have been reduced and the headaches gone.

I dont get on the boards much as i am so tired when i get home from the hospice but i think of you all coping with your demons and i pray for you all every day.

much love liz

Marlene, Liz...hang on with everything you have. I know it's unimaginable what you're going through. I am still not completely over my own battle, and now am watching my father lose his fight with lung cancer.

He was diagnosed a week after his younger sister passed away from it...my fifth week of radiation.
Of course, initially they were talking about significant success, and then dicovered his cancer had penetrated the left ventricle of his heart.

Radiation slowed the primary, but he couldn't tolerate chemo. He wound up in hospital with kidney failure after one round, so they stopped it.
A CT scan this past weeks shows infiltration into his hips and his other lung. He is in so much pain trying to walk around, and the choices left to him are to be medicated for pain until the end ( not long), or try additional radiation and a modified chemo cycle, add a month or two of life but be sick starting immeidately.

Tough choices. Ones that I firmly believe are his to make, and whatever he decides I will back him 110%.

I love him dearly and don't want to ever lose him. At the same time, I don't want to see him suffer through something that will not change the end result. It's not my choice, nor my call. Each of us has our own needs for moving from this life to the next. It is so terribly hard to watch...I FEEL the pain he is in; it is an old and personal enemy that I have battled. I UNDERSTAND his sense of dipair, and being overwhelmed....I have my own experience with both. He and I SHARE the hatred of the Beast that is cancer on a deep, intimate level.

Alcoholics Anonymous will tell you the only person who can truly relate to a drunk is another drunk; I think to a degree that is also truly of a cancer patient. That's not to say that you can't relate; you both can understand, sympathize and empathize with what your loved one is going through. My trouble is that I know from first hand experience how horrible the disease affects your body, in so many ways not obvious or even explainable to someone who has not endured them.

I wish you all peace, as much as that is possible. I wish for the two of you the understanding and support that you need so desparately right now. I hope this life, and it's consequences don't defeat you. There is much to come in our lives, good and bad. I think our best sometimes comes out in the worst circumstnaces. I see that in both your posts.

Your men are very lucky men indeed to have women like you beside them, walking with them through this journey.
Wayne

Hi Friends:
Our oldest son and his wife are here to help go through the basement and put the stuff into storage so that the basement can be insulated and finished into two rooms.
The idea is that my youngest son will move down there and I will get my office and the family room back.
This is needed as I am going to need to do more work at home. I haven't been at the office since last Wednesday. Alan has had a bad time and can't be left alone.
My youngest daughter TM is taking an unpaid leave of absence from her job to help with my husband and my business. I thought she had a background in bookkeeping as well as banking but she reminded me that it has been 7 yrs since she did any bookkeeping and that was a course in college. Now I don't know what to do.
Alan is detirating by the day. today had a shouting match because I keep changing where we live and he had no say in it. So where do we live and what happpened to the house we bought?
We have lived here since 2001. We bought the house after living in Rental accommodation for 3 yrs. I understand the confusion as we have traveled to visit family and stayed in our old home visiting my daughter JM. She bought it form us in 2001. As well we have visited with other family and stayed in a B&B while traveling. I had to get the deed to the house out and Alan is studying it.
He is very confused about the size of this house and can't find things. The destamathorizine isn't working its magic anymore.
The cancer has ulcerated in his mouth and he is going at it with lydocaine and a green scrubby brush. I think he pops the tumour open and releves the pressure as he cleans his mouth.
He is having accidents with the PEG tube because he doesn't remember what it is for. So far he tried to drain it. Clean it out by running tap water into it. Tearing it out of the pump because that stuff is going to get him. And asked when the oxygen will be conected to it.
The worst part is when he doesn't remember he has cancer and doesn't understand that that is the only way he can eat. I have to tell him all over again and it just deflates him like a ballon. Then he just sits in the chair and stares out the window.
The off spring are fighting me on bringing a hospital bed in. They make it sound like I don't want to sleep with him any more. He is having trouble s breathing, laying flat and he is being feed at night so he isn't supose to lay flat. He is starting to lose control bladder and bowel function as well.
I will admit that the smell coming out of his mouth wakes me up at night too. I want him comfortable and safe.
I am tired. My clients need better than what I am giving them. My husband deserves my full time care and I need to rest or I will also need care. I am totally confused.
I hate this Cancer.
Marlene

Hello Marlene

Please call me tomorrow.

Peter Billias 561-667-3631

You need to call HOSPICE and they will handle all these things for you, no charge. I can get a bed but I do not need one at this point.

The nurses and drs. come by regularly and they set up my meds and make sure I have everything I need.
I have a 24-7 phone line to call, and a HOSPICE EMERGENCY# to call if needed. They bring my meds to the door and handle everything. They will help you with housing and "end stage" if needed.

I can ask for 24 hr. car if needed, but I do not. My family comes by, but we just chat and go.

The dr is coming tomorrow for check-up and nurse will refill all my meds that I need ,(I have plenty now). They will give you a social worker, phyc. Whatever you may need.

Please call. You should not be carrying these burdens. Even if HOSPICE is not your choice, they will handle many of these duties for you.

I may be here next month, or I could be gone tomorrow. But I an in no pain and I am comfortable. That is what they want for you. They get you ready for bed. Just like mommy used to do.

No kidding, that's how I feel. I just have not fallen asleep yet.

Please call me. You should not be carrying this on your shoulders alone.

My wife knows all the nurses and the dr and has all the numbers.

This is just the beginning of your husband

Marlene, I think about you and Alan often. I wish there were comforting words to say that would make things easier...I'm not sure there are any of those words left to say.

You have to do what it right for you, and for Alan. I think Petey is right about the hospice, however that is a highly personal and individual decision. I would love to talk to you, of course that's up to you. If you like, send me a PM and I'll pass along my number
Wayne

Dear Marlene,
I have no advice to offer, but I will continue to keep you and your family in my prayers. It is so disturbing hearing the first time that you have cancer, I can't imagine having to tell your husband repeatedly. Your heart must ache. I am so sorry for what you are going through.
God Bless.
Donna

Dear Marlene, unlike Donna, I do have advice to offer since I have recently been in your shoes. You DO need Hospice help-NOW- or you will quickly become a "basketcase" from lack of sleep and too much responsibility. Please belive me when I say that Hospice will make Alan more comfortable than you can, and will teach you things about nursing that you don't know. You need to disregard your children's advice about the hospital bed and do what is best for you and Alan. This is not about sleeping together, it is about coping with his cancer and your stress level. [ In fact, I had to disregard alot of advice from John's son during his last 3 months because son was #1.in denial about his Dad's condition, #2.son was only in and out of our house to visit- not there 24\7 #3.Son had no clue as to the effect the pain meds were having on John mentally, which also affected me because it was hard to leave him alone for very long - ie- no sleep for me. If you daughter can't handle the bookkeeping, find a temp. bookkeeper. You will not be able to run your business and take care of Alan as he gets worse. This is where you have to gather up all the strength you have to go forward. Sending you best wishes. Amy in the Ozarks

And this is where this board is so invaluable! No one can offer advice like the person that has walked thru the storm!

Thanks Amy for your insight...I can't imagine your pain as you relive this nightmare thru other's experience and I appreciate the strength it takes to continue the fight.

Deb

I can only echo everything that Amy has said.I hope you got my e-mail.

love liz

Hi friends
Update:
The occupational therapist was in today she gave me advice in how to set up the bedroom for Alan and explained the use of the hospital bed to everyone. Alan has decided to try it.
I have what they call here in BC Pallitive care. They send a nurse by every day if I need it. There is home care hours if I request it.
My daughter =in-law insists I phone and get them to set up time with a councilor so I have someone to talk to that can make sure my meds are right. Did I ever mention I am a CFS/ME patient. "no stress" LOL
I stripped the wall paper off the walls in the bedroom that is going to be Alan's new room. New floor in this week and then I will call and have the bed delivered. We still go to the Dr's office but he has said he will come to the house as Alan progresses.
I am hiring a full time assistant. She starts on Monday. Like an idiot I also have two new clients starting next week as well. I may hire a second one just to keep things going.
Son #1 took care of Alan this Am so I could get into the office. He got to answer the uncomfortable question and tell alan where he lives. It showed them I wasn't making this stuff up. They became much more fexible when the OT and the home care nurse were here.
Alan is having the mind problems because the cancer has moved into the brain area . It effects the blood flow and the memeory area. Thanks for your advice and suport.
Hugs Marlene

Dear Marlene,

What a difficult situation you are in! My mother-in-law lost oxygen during hip replacement surgery and this greatly affected her memory (among other more serious things) and she could not hold it in her mind that she was not going to recover. When this was conveyed to her in various ways she was devastated and shocked and this happened nearly every day in some way or another. I sometimes felt as I was turning a knife in a wound as she could not hold onto this information and it was like seeing her distressed nearly every day. It reminded me of the Drew Barrymore movie called "50 first dates" but of course it was extremely painful for my husband and I and for the nursing staff. My mother-in-law eventually went under hospice care just over a year ago. We found them to be very helpful in consulting about when the time was right for her to enter hospice (in her case, she did not have cancer but lots of other problems due to complications for loss of oxygen during surgery so it was actually difficult to get her into hospice as it was difficult to ascertain that she was likely to have 6 months or less to live). Nevertheless, the work we did with the hospice staff was very helpful in both leading up to her actual care under them and in her care in her last months. It felt as if we were able to shift some of the burden of trying to make extremely difficult decisions to experts who cared about my mother-in-law but who also cared that my husband and I did not deplete ourselves in caring for her. Plus, her pain and discomfort was finally addressed in a compassinate manner. Please take care of yourself as you can't help your husband if you are feeling as if you are barely holding on. I sometimes find it difficult to take care of myself and feel pleasure or comfort when someone I love is so distressed.

Sophie

Dear Marlene, all the steps you've taken above are very good ones. And I know many caregivers here are thinking "Thank Heavens Marlene is getting some help!" Keep getting as much help as you can and include the kids as much as possible. The more personal contact they have with Alan's battle, the more it will strengthen them as adults. If you need a "kick in the pants" or a shoulder to cry on, I'm here as are many other caregivers who learned that we indeed could cope when we had to. Amy in the Ozarks

Hi peoples.
I phoned the Pallitive Care and asked for referal to a councilor today.
My daughter-in-law watched Alan so I got to go and deal with a client's payroll issues. She is going to watch Alan tomorrow AM as well.
Alan is angry tonight as he feels that Taylore threw aout his carefully prepared supper and cooked a totoally different mealwhile we were napping. He hadn't, she didn'tthrow anything out. She asked if she could cook and I gratefully accepted. I told him I said she could cook so he is angry with me.
Alan was a wonderful cook. I miss his meals. I hadn't cooked in almost 20 yrs when this started again. He took care of the household, I worked 60 hrs a week and rested otherwise. Relearning all the household stuff and takeing care of him has been an adventure. I knew I was spoiled rotten and I miss it. I guess the worst thing is I miss his personality that this Cancer is robbing from us.
He is still at 175 mmg fentanol patches and the hydromorphine breakthroughs are only three times a day. We are blessed.
Hugs to everyone. Marlene

Morning to all:
I just realized that I should move this over to a blog. I am naming it Alan's Journey. I figure that is where this belongs.
Hugs Marlene

Marlene: I have no words that will comfort you during this most difficult time. Just know that you, Alan and your family are in our daily prayers. I envy your strength! You are certainly an encouragement to all of us...

Lois & Buzz in NC

Marlene,

I wish I could be there to help you. You, Alan and the kids are in my thoughts and prayers.

Please know that I luv you all and admire your strength in dealing with this.

If you ever need a shoulder to cry on, please call me

Wendy