Time for my experience and help (Page 2 of 7)

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

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 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

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

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

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