is anyone willing to give advice to a caregiver/sister

Hi emhk21,

I understand that things are tough for you right now.

I am a 69 year old patient and I was diagnosed with CNS lymphoma (brain tumour) in March 2012. After treatments with among other things high dose chemo and stem cell transplant, I have no visible cancer since more than one year. I still take cytostatica tablets (Temodar) since 10 months for four days every month to prevent a relapse, and this is planned to go on for 14 more months. I feel generally OK and have been able to go abroad three times lately, to Spain and to Greenland and for walks in the Norwegian mountains.

During my disease, I thought about what is important in my life, and I realized that it is my family. Then I thought about what I could do for my family. I checked my testament, and I simplified our economy so it would be easier to handle. Then I went through all the tough treatments, and I tried to keep my spirits up to make my family feel as OK as possible. I felt that living is not so important for me, since I have grown-up children, and my wife would be economically OK if I died.

Well, this is my background. How can I then advise you as a sister and caregiver?

Even if it is hard, try to accept things as they are. Think about what you can do according to the situation. Do not hide your feelings. Try to be kind and loving to the patient. Be realistic but optimistic. Life can be difficult, but you can only do your best. Well, my advice is perhaps not very tangible, but this is what I came to think of. If you have specific questions, then I can try to answer them.

Good luck!

Sten

You are getting some good advice here, from everyone.  My own addition would be this -  be worried when it's appropriate.  We are all scared when it's time for the next scan, because that's when we are going to find out if there is a recurrence or growth of our tumor.  When the scan is done, and you know things look good for the time being, try not to worry.  Worry and stress take away your attention from what's important, which is spending time with your family now.  Every day I try to be aware of how much I love my family and friends, and enjoy my job, and can go see a good movie, and enjoy some good food.  Each day is in itself a gift.  Try to take each one as it comes and let tomorrow worry about itself.  You can not predict the future or change it; all you can do is firmly grasp the present and enjoy it.