Time for my experience and help
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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
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
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,
MarionCarlos, 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.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
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;
CarlosHi Carlos,
How is your mum feeling today? Did she get some sleep last night and are the new pain killers working?
Best wishes
Gavin
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,
MarionLainy;
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
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.
Lainy;
I trust that the good evolution can be mantained and I wish I can enjoy my mother for a reasonable time with a good quality of life.
None deserves this disease, but people as good as my mother in all aspects even less.
Believe me that it has been nearly three months from the initial diagnosis and still can not believe what is happening.Regards;
CarlosThank you so much for the good news! What a relief, yes? Perhaps mom could just sit outside in the fresh air a bit. Keep that good news coming!! Recovery takes a long, long time and it sounds like she is really trying!
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