Dear Shelagh, You sister is a very strong person- I wish that strength for you also during this very painful journey. I hope that the two of you will be able to spend meaningful time together over the next months. Amy.

It sounds like you're all doing as well as you can. I work in hospice in the United States and we often see patients get that burst of energy that your sister is having with the prospect of going home...even if it is for a weekend. There are differences in your health system but the concept of a visiting nurse is pretty universal and homes can be modified to promote optimal independence. Hope she gets to do her Christmas shopping. Regards JoAnne

I'm glad your sister is doing somewhat better. I recently joined this site myself and found it very helpful. I was diagnosed with squamous cell cancer in the mouth about a year or so ago and I didn't get treatment immediately. I started treatment this Sept or Oct and at first I could eat soft foods. Now I CAN'T eat at all. I, for the last two months, have drank all my foods. I don't even consider potatoes because they are the dryest and worse to swallow. I, like your sister, did not want a tube but was told if I didn't put on weight it would be most necessary.

Since October, I have blended 3 eggs (70 cal ea0 in olive oil (120 cal/teaspn), instant oatmeal (different flavors @ 130-150 cals), Nepro nutriental drink (475 cal), carnation instant brkfast (220 cal w/cup of milk). EVERYDAY. I dont taste much, but its easy to drink and has lots of calories. I'm waiting to eat solids again.

Snacks is four scoops of vanilla icecream (180 cal/2 scoops), two packs of instant breakfast (220 cal/pack w/milk) and Nepro nutriental drink (475 cals.

Lunch/Dinner is always large cans of Progressive Soup blended (300-350 cals)

I'm not tired of it yet because it adds up to lots of calories and I'm gaining weight and people are commenting on how good I look. It feels good and I didn't have to get a peg or tube in my belly.

I am and will continue to pray for your sister because it sounds like shes in a tough spot. I encourage you to stay on her though. Reminding her that this is a fight for her life and that you love her and want to spend lots of more years with her. My youngest brother has been a TREMENDOUS help to me. Words can't even explain, its as if the disease was his and it has help me so much.

My prayers are with and for you. I believe God is listening to not only me but He also sees your heart and care for your sister. He'll answer. So you be encourage as well.

Lesley eventually got home on Thursday last week. She now has a district nurse going in morning and evening to check that she is setting up the overnight feeding tube properly - and then dismantling it in the morning. She's getting quite confident using it now - but doesn't yet feel any benefit from having the "brown water" dripped into her stomach. She tires very easily now - but is just glad to be back in her own home.
Thank you 'Cooldown' for your kind thoughts. Your words of encouragement are greatly appreciated - especially as there are now days when I can't seem to say or do the right thing for her. I know it's not her fault when she gets snappy.
So we're looking forward to Christmas. Way back in March when she was diagnosed, we never thought she'd see the end of the summer, let alone the end of the year. So each day is a bonus.

Shelagh,
You know I am writing you this, first hoping that all is well, then secondly, I was reading over your original posting and noticed the doctors comments of " this thing is going to kill you". Over the weekend, I was speaking with my family and talking about my hospital stay. During my time at the hospital, my family was there 24 hours a day. I was asking them "why did someone stay with me everyday & night" and my brother told me the doctors said to them, blantantly " He'll probably "expire" before his teeth come out".

I had no idea that he had said that. I find it very offensive for a doctor or for any person to try and dictate to me my life span. They are not GOD. They can look at symptoms and make conclusions, but they certainly cannot say, who is going to live or die.

When I was looking at your post tonight, it just upset me that they say things that they really don't know for sure. They attempt to put fear in the hearts of our family members, who in turn transfers that fear into us, the patient. We don't need fear, we need hope. I encourage you to treat your sister with love and care, as you always have. But put no certaninty in the "man's" words of the lifespan of your sister. Again only God determines who lives or dies. And the doctors ought to be more humble and use a better choice of words. With Love & Compassion. Cooldown!!!!

Dear Shelagh, as hard as it may be, you can't take the "snappish or irritated" remarks personally. It just goes with the territory. Stay strong and hug her alot. Amy

Some of us prefer a straightforward assessment of our condition and propects from the medical professionals, whereas some of us want it to be more subtle or even non-existent -- What hurts is when MedPro is one kind and the afflicted is the other. The MedPros are often wrong because it's not an exact science, but I believe it's valuable to have at least an estimate of the expected severity of the situation.

Pete

Peter, Very well put----I could not agree more with you and perhaps JoAnne 1981 could address this issue. Some of us would love to know that we have 6 mos. left and others would stop living and fall into a depressed state or a combination of both. Dr.'s I believe don't try to play God it is just so difficult to predict and they base their prognosis on many similar cases. If we all adhered to stats most of us wouldn't be posting here. There are so many involved and so many lives affected other than the patient that I think I would appreciate an honest calculation from my drs. If I prove them wrong that's not so awful.

Back to the medical hospital today when the docs casually told us that there were now numerous tumours in my sister's neck. Apparently there is no point in operating to remove them as they would just re-appear. The doctor also thought that surgery would present a new set of problems for her, so it just isn't an option. Neither is a further dose of radiotherapy. He was also unable to tell us if the tumours were fast or slow growing - so all in all, it wasn't a very good appointment. Having to accept that nothing further can be done is very difficult. She still goes weekly to the hospice to see the palliative care staff and has an occasional visit at home from a nurse to check that all is well with the PEG tube. So she's still managing amazingly well on her own, all things considered, though I know today's news will have knocked her back a bit.
So we've decided to ignore what we learned today and just carry on as 'normally' as we can. What is the point of worrying when there's nothing that can be done to cure things. There is no alternative - other than to give up - and I know she's not going to do that in a hurry!
Thank you once again for all your kind thoughts.
With best wishes to all for the New Year.

Shelagh, I am so sorry that your sister is not improving, It must be so difficult for you. I will be praying for both of you.
Mark D.