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?