Re: Time for my experience and help

There is no rhyme or reason, Carlos. For awhile we had quite a few men who had served in the Korean & Nam wars coming down with CC and it was thought that they picked up a parasite in Asia called "liver flukes". I have also noticed a lot of people from the East Coast States versus other areas. The most frustrating thing for me right now is the amount of "younger" people we seem to be getting. And then the frustration that there are not enough of us to get attention. But we are working on it. To some your 3 months would be an eternity to others not a lot of time at all. Sounds to me though like you are doing quite well as mom's advocate and care taker. Side note...I am a travel consultant and about 15 years ago took 400 people from Time Insurance to Marbella and Morrocco. Spain is just beautiful both the land and the people. I loved it. We stayed at the Don Cesar and also took a side trip to Casablanca. Stay positive we need a lot of positives in our world today.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Lainy;

I would do anything for the person I most loved, love and never will love.

And what you say about Marbella, it is the south of Spain close to Africa. I live in north of Spain, Bilbao, close to France border where the weather is not so sunny

Regards;

Calos

Re: Time for my experience and help

Carlos...great to hear that your Mom is finally getting some sleep and experiencing less pain.  You might want to remember that pain medication has a tendency to cause constipation which in turn can cause pain, also.  Moving around, plenty of fluid, high protein intake, and a stool softener may help to prevent some of these problems. 
Good luck,
Best,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Marion, thanks for the advice, I

Re: Time for my experience and help

Hi Carlos,

How is your mum feeling today? Did she get some sleep last night and are the new pain killers working?

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Hi Gavin;

Althought as you know the progress is slow I think he is finding herself better each day and medication is being positive .Family and friend visits are
another positive point here.

Kind regards;
Carlos

Re: Time for my experience and help

Hi once again;

I just received a notification from the hospital for the next week for the first oncologist appointment.

Althought I know oncologist will have the last decision, i

Re: Time for my experience and help

Carlos, glad you have the appointment. Remember in the end it is really your mom's and your decision. If it was my parent, yes, I would take them to the appointment. When your mom is fully aware she will be able to discuss it all with you and make decisions with you. But that is my humble opinion.  As for the chemo/rad I am sure you will get some more answers on the board. There is a lot to take into consideration.
I am not versed on Chemo as Teddy had radiation and then cyber knife. You are headed in all the right directions.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Carlos....I always accompanied my husband to all visits.  The information can easily be overwhelming especially, for someone who is not well.  I always took notes and at times, I used a tape recorder.  This way I could recall everything discussed.
Chemotherapy or not.  This has been the question for many.  You will see, on this board both, those who choose not to use it and many others who did.  Hopefully, others will share with you their reasons for their decisions.  Please, write down the suggested chemotherapy if so advised by the physician and share it with us.
Best,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Carlos,
As Marion indicated, this is not a one-answer-fits-all. Please take notes throughout the appointment. In fact, don't start with a blank page, start with all the questions that occur to you now and write them down. The amount of information to be conveyed both ways can be overwhelming and if not written, it is easy to forget what was asked or said. I don't know how alert/informed your mom is or wants to be, but most patients benefit from having an advocate to ask questions. Ask to your heart's content. Let your mom take the lead, but if she doesn't want to ask questions, you should then start asking. Most doctors will provide the patient with answers to any asked question, but they don't often volunteer the possibilities or the unlikely events. Many times, when the patient describes symptoms, the doctor responds with "that is normal." If I had known it was normal, it would not have worried me as much, so I like to ask what to expect as well as what alternatives I have. An iimportant part in what treatments to follow-up with is whether we are dealing with quantity of life or quality of life. As a patient, I'm fighting for every minute of life I can get, but the day may come when no treatment is expected to help me get better, and treatments could merely prolong the pain. That might be when I would consider giving up. My mom was in her 80s when diagnosed and preferred staying home with little treatment. Her oncologist didn't think she would live a year more, but she almost made 3 years anyhow. So even if a majority of the people on this board all recommended chemo or radiation, they could all be wrong. If your mom is willing and interested in making that decision, we would all support her in that. If she wants you to make the decision, go with your instincts and you will be right.
Hang on for the ride of your life! Do you like roller-coasters?
Keep smiling.
Louise smile

Re: Time for my experience and help

Hi Carlos,

Thats good that your mum seems a bit better each day and that her meds seem to be working. Visits from family and friends are indeed positive and will no doubt help her mood. I know when my dad sees some of his old friends it works wonders with his moods.

As to chemo or not, well for my dad I said to him it would have to be his choice if he should start it or not. He was initially treated with PDT last year with a view to maybe doing chemo later. As it turned out, we found out this week that he was not suitable for chemo, but if he was suitable, it would be his decision to do it or not if it was offered to him. I couldn't make that decision for him and my mum also agreed with that. Radiotherapy was never an option for him.

When my dad met the oncologist or his specialist, I was always there with him as that is what he wanted. He also told me that I could ask any  questions that I wanted of the doc's and raise any issues that I thought needed to be discussed. Also, when the docs would ask dad something and he would answer, he also told me to mention things that he may have forgoten to say in his answers, or if dad was just wrong in what he was telling them. I dont know if this approach would be suitable for everyone, but it is the way that my dad wanted to handle things. And doing things this way meant that he could ask me what was discussed etc if he forgot something at a later date, which he does quite a bit. It also makes it easier when we go to see his local GP or the GP's at his day care if I know what was discussed etc with his specialists.

I also very much agree with what the others have said regarding taking notes and having questions prepared and ready to ask. The information can seem overwhelming as Marion points out. Again going back to my dads situation, sometimes he seemed like he wasn't taking the information in, especially if the news wasn't great, so it helps to have someone else there who can take it all in.

Hope some of the helps.

Best wishes to you and your mum.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Thank for your answers.

What is clear is that nothing is clear with chemo.We

Re: Time for my experience and help

Dear Carlos,

Your mother doesn't need to go outside to walk. The important thing is for her to move her body, to get her blood circulating and her muscles working agiain. She can just walk inside the house from one room to another, if that's what she wants to do, but it's really important to do it a little bit longer every day. She can start with just one or two minutes, and add a few minutes every day. Tell her that walking will help her feel better much faster.

Maybe you can find her some very loose clothes to wear-- like a very big dress.

How old is your mother? That information might help us find more ideas for her.

You are such a good son!

Kristin

Peace, hope, and healing to all!

Re: Time for my experience and help

Dear Kristin;

As you can see from my first post she is 74 years old but very helathy and strong.As example, the day before to the surgery she was walking during 2 hours.

Sometimes social pressure is negative. Family and friends with good intentions but really don

Re: Time for my experience and help

Hi Carlos and mom! You are so right about outside people who mean well. I got through all this as caretaker by putting up a wall to the outside world until Teddy and I were ready to let them back in. It is such an undue stress to answer to everyone when all you want to is get the best for your mom. What I did was form an e mail update list. Teddy had spent about 7 weeks in the hospital and every evening I would email everyone on his progress/what is happening. I first sent an email saying we were under a tremendous amount of stress and I would appreciate their understanding that I just can't handle a gazillion phone calls after spending all day at the hospital.  Fortunately everyone was extremely understanding. My mind was totally focused on Teddy and that really relieved a lot for me. Now with Teddy's new spot and my recent DX after surgery, I am in my blocked mode again, at least for a bit.
P.S. in that first e mail I also described to them what he had and what was being done. One they hear what CC is all about, they kind of back off because its really too scary for them to wrap around. Just a suggestion  on how to hold well meaning people at bay a little.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hi everybody;

I think my mom everyday is feeling a litle bit better but she hasn

Re: Time for my experience and help

Glad to hear mom is doing better, Carlos. I don't think there is a right or wrong protocol. I would make a list with your mom of any questions you can think of that you would like answered. Use that list so that you get everything answered that you want know. Good luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Thanks Lainy.

Although each case is different, in your opinion which would be the basic questions of that list?Only to get an idea.

Thanks;
Carlos

Re: Time for my experience and help

Well, I would want to know what the doctor feels the prognosis could be after chemo. Like what are the chances of the chemo really helping versus no chemo. To be straight forward, what if she had no chemo at 74 years of age. What if she did? What are the common side effects with chemo. Perhaps if you looked back through some posts here it would help you to say oh, yes, that's what I want to ask. I am sorry to sound stupid but since Teddy didn't have chemo not sure what I would ask. I could tell you everything about cyber knife!
I just know some of our "family" will gie you some better suggestions.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Carlos

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Hi Carlos,

Glad to hear that your mum is feeling a bit better each day and I hope she is managing to get some sleep as well. I can't really add much to what Lainy and Marion have said regarding questions to ask, but what about asking would the chemo be given in the hospital or with tablets at home? And perhaps how long would the treatment take, how many times etc.

Sorry I cant be of more help. I hope the meeting goes well.

Best wishes to you both

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Thank you very much for your answers.

At this moment I don

Re: Time for my experience and help

Dear Carlos,

I think it's really important to tell your mother that this disease is very, very different in different people, and some people do live for years with it. Doctors can tell you statistics, but statistics only say what happens to large groups of people. They don't tell you what will happen to one person.

Yes, it's a very bad disease, but some people have a much easier time than others. And there's no reason why your mother can't be one of them!

I agree that you should ask the doctor about the possibility of radiation treatment. It's much easier on the body than chemotherapy, and in my case, I had very good results.

Please let us know how everything goes. We're all thinking of you and wishing you the best.

Kristin

Peace, hope, and healing to all!

Re: Time for my experience and help

Hi Carlos. I believe your mom should know about the disease so that she understands why the doctors make the choices they do and so that she can be a part of making the decisions. It is true that CC behaves differently with everyone. The word "statistics" doesn't matter that much, would be a little easier if it did. You know your mom best and if you feel she could not handle it then that is another story. I know this sounds strange but if you think she could handle it, well, those people come out with the best attitudes. I always feel the more you know the more you fight. Good luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

You are really wonderfull.

What i