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is anyone willing to give advice to a caregiver/sister

emhk21
Posts: 1
Joined: Dec 2013

I am a sister as well as a caregiver in need of counsel from someone with experience as a patient. I feel disconnected, at a loss, and immobilized. I find myself literally holding my breath, obsessed with each update and waiting to exhale. Is anyone willing to advise me?

Sten's picture
Sten
Posts: 44
Joined: Apr 2013

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

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I'm visiting from the kidney cancer board. My husband has stage 4 kidney cancer, which is not curable. We are 42 years old with two young children. I will tell you how I cope. It's not easy. I'm scared. But I remind myself constantly that worrying doesn't change what is going to happen, it only sucks the positives out of now. I take life day by day, trying not to worry about what the future might bring. Sometimes I have to take it minute by minute. I'm so sorry you're having a hard time. 

mccindy
Posts: 82
Joined: Jun 2013

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.

Sten's picture
Sten
Posts: 44
Joined: Apr 2013

Hi again emhk21,

Reading your post again I come to think of more advice.

Since you are worried and upset, you may benefit from some relaxation technique.

I use physical yoga and a little tai chi every day, and sometimes yoga meditation and breathing technique. These methods can help you to calm down. Qigong is good too.

I believe that zen meditation can also be an alternative, although I have not tried it.

May God help you to get peace of mind.

Sten

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