My Dad

[thistlebloom]

So happy for the brighter outlook you have now Journey!

There is no reason to lay down and quit at this point. Each day is a gift from God!

That's an attitude even the healthiest among us should have.

 

[Carol Dee]

Yeah, the first couple months of not knowing much is definitely the worst! You hear the word terminal and you immediately freak out, not realizing that there is a whole lot of living still to be done in the meantime and somehow life does just go on. The doctors give you a pretty bleak outlook with this type of cancer my dad has, but through my GBM support group I am hearing of a substantial number of folks who are in remission with this cancer for 5, 10, 15 years or more. New and better treatment options are up and coming.

I think once we get through the radiation, things will really settle down to some kind of normal. All in all we are still very blessed. Dad is feeling pretty good in spite of it all. The chemo has not been as bad as we feared. He is still very active and capable and not in any pain. Can't ask for more than that really! What I am hearing on this support group is that complete resection of this type of tumor is the greatest indicator for length and quality of life. The entire lump was removed, but they say there will be rogue cells left behind. I am optimistic yet. There is no reason to lay down and quit at this point. Each day is a gift from God!

AMEN

 

[Gardening with Rabbits]

Yeah, the first couple months of not knowing much is definitely the worst! You hear the word terminal and you immediately freak out, not realizing that there is a whole lot of living still to be done in the meantime and somehow life does just go on. The doctors give you a pretty bleak outlook with this type of cancer my dad has, but through my GBM support group I am hearing of a substantial number of folks who are in remission with this cancer for 5, 10, 15 years or more. New and better treatment options are up and coming.

I think once we get through the radiation, things will really settle down to some kind of normal. All in all we are still very blessed. Dad is feeling pretty good in spite of it all. The chemo has not been as bad as we feared. He is still very active and capable and not in any pain. Can't ask for more than that really! What I am hearing on this support group is that complete resection of this type of tumor is the greatest indicator for length and quality of life. The entire lump was removed, but they say there will be rogue cells left behind. I am optimistic yet. There is no reason to lay down and quit at this point. Each day is a gift from God!

I agree! I had to get past all that terminal way of thinking. DH did not even know about it at first. He did not understand what they were talking about and when he did realize, it set him back, but then he got over it and seems to just be carrying on fine. He is tired, sore muscles from side effects, but I tell him all the good news I hear. He got shingles last week. That has set him back. Now, I am worried about DD, DS and myself, we have never had the chickenpox.

 

[journey11]

I agree! I had to get past all that terminal way of thinking. DH did not even know about it at first. He did not understand what they were talking about and when he did realize, it set him back, but then he got over it and seems to just be carrying on fine. He is tired, sore muscles from side effects, but I tell him all the good news I hear. He got shingles last week. That has set him back. Now, I am worried about DD, DS and myself, we have never had the chickenpox.

Oh no, not shingles. I hope it clears up quickly for him. My grandpa said it is quite painful. I didn't know you could catch the chickenpox from it. Of all of my childhood memories, I remember the chickenpox so vividly! (My first grade "boyfriend" gave them to me, lol--see, boys really do have cooties!) Is it too late for you guys to get the vaccine or would that even help?

 

[aftermidnight]

Shingles , after having them for the third time my GP sent me to get the shingles vaccine. that was 5 years ago so I'm good for one more year. Only people that have had chicken pox can get shingles, people with active shingles can give someone chicken pox. When one has had chicken pox the virus stays in your system for all time.
5 years ago the vaccine up here was pretty new and you had to go on a waiting list for it, I lucked out, when I went to sign up, someone had backed out, too expensive, so I got their shot.
Apparently it has a short shelf life, expensive yes, but I didn't mind if it was going to stop me from getting shingles again. Can I describe the pain, have you ever hit your thumb with a hammer, well the pain is ten times worse. A friend got shingles in his eye, even after an operation he still has trouble with that eye and can't see very well out of it.
If you think you might have shingles get to your doctor immediately, they can give you something to lessen the blow but it has to be within the first 24 hours. After the rash has subsided there is a salve that will help with the pain, which can linger on for weeks, months or even longer. I still get jolts of nerve pain from the damn thing,
I advise anyone who has had shingles to get the vaccine, I know I'll be getting another shot next year.

Annette

 

[Poka_Doodle]

So happy to hear everything is improving.

 

[seedcorn]

My DR won't give vaccine till you are 60+. Friend got shingles, took the pain and treatment for 3 years. Then he got the back inplant to subdue the pain.

Vaccine is 60% effective in stopping shingles but it greatly reduces the outbreak. My Dr doesn't give boosters. One shot, good to go.

 

[Gardening with Rabbits]

He got to the doctor in time to get medicine to lessen all of it. Bad thing it is in the same area of his back where he had radiation for the broken vertebra. Very odd to me that same place and skin on his same leg is sensitive where he had shooting pain from the nerve damage from the cancer breaking the vertebra. All that had cleared up and now has the shingles pain. I have lived 60 years without chickenpox and kids are 22 and 16. I am not sure how much of a chance we have of getting chickenpox from this. The sores are under his shirt and under the waistband of his jeans, so not open to air. My mother got the shingles on her legs when I was in my 20s and did not catch chickenpox or my brother, but he later got chickenpox in his late 30s when I lived in another state.

 

[journey11]

Things have kinda been rough with my Dad here lately. He's been done with his radiation and first course of chemo for a couple of weeks now and will start his 5 on/23 days off chemo rotation next Monday. He is feeling pretty good physically for the most part, other than a little fatigued and his appetite hasn't been great. He's having a lot of trouble mentally though, which has made it difficult to care for him. His memory is poor and he is very confused about his condition and his meds, doctors, etc. He refuses to take anymore meds, forgets what his condition is, wants to quit his Parkinson's meds which he has taken for many years, etc. I think the dementia is getting bad enough that I'm going to have to hire someone in soon, at least part-time. Side effects from the radiation can pop up months, years later. He is done with the blood thinner shots, so my mom won't be going over twice a day anymore. I think he's depressed too. I think I might be a little depressed. It's really weighing on me. Since he lives alone and is resistant to change, it's hard to take very good care of him, which I am afraid will speed up his decline. We still have many tough things to talk and sort out. That will be a rough conversation. He loses his temper easily too. Very stubborn and even petulant at times. We have his first post-op MRI this Friday to see what is going on in there. Doctor's appt on the 23rd to go over it. I need to get the garden in tomorrow before it rains again. I need the "therapy". Haven't had much time to visit on here or much to show for myself anyway.

 

[Carol Dee]

Oh @journey11 I wish the news was better. Sorry to hear about the troubles. Sending hugs and prayers.