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Brain Mets

Started by marg_10

22 Dec 2006, 9:37 AM

My husband has small cell lung cancer but the weird thing is that it does not affect his lungs; it is in his brain. He has had a bad time with seizures and has sustained some neurological damage - loss of short term memory, severe problems with mobility. The doctor has said he will likely die of another seizure. He has just returned home from hospital and we are having serious trouble managing. I am totally burned out. Any suggestions which might help us? It is very scary not knowing when the next seizure will happen.
marg

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Reply by Simone Stenekes

28 Dec 2006, 11:06 PM

Hello Marg, I am very sorry to hear of your husband's illness and the struggles you are having. I do have some suggestions for you, which I hope will be helpful.

You are saying you are burned out, and that is important to recognize. You may find it helpful to link with home care in area (if you have not already done so). Home care would hopefully be able to provide you with some services to assist you in caring for your husband. They may also have some equipment to help with your husband's mobility issues.

It may also be useful to find out if there is a palliative care program that you and your husband have access to. The Canadian Hospice Palliative Care Association (CHPCA) has a comprehensive database of palliative care programs in their Canadian Directory of Services, which may help you find a resource in your area. This database is available at: http://www.chpca.net/canadian_directory_of_services.htm

The other issue is preparation for another seizure or other potential symptoms. It is helpful to have a plan in place so that when things change, you have talked about what to do and are aware of the options that you have. A plan could include you calling a neighbor or friend to come to your home and be with you. It would also include other actions that you may take or medications to give to your husband. A good resource for developing a plan would be your husband's physician, a home care nurse, palliative care health care professionals, or a combination of these people and others. When developing a plan it is important to consider the goals that you and your husband have in terms of where he would like to be cared for (ie. home, hospital or other care setting, if one is available). It may depend on the type of symptom(s) he experiences and your level of comfort as to where care can be provided and what may be done. Having dicussions such as this can be dificult, but it may help to ease some of your anxiety when you prepare and know what can be expected.

Sincerely,
Simone Stenekes RN (Manitoba), MN, CHPCN(C)
Clinical Nurse Specialist
Canadian Virtual Hospice

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Reply by debbied

08 Aug 2008, 6:06 PM

My husband has brain cancer and over the past 6 years we have dealt with seizures - random at first and now daily.

The first one was the most scary because I had never seen one up close. He fell flat on his face and hit his head on the desk, bit his tongue and was unconscious for about 10 minutes. (It sure seemed longer). After his ER trip he was unsteady and weak for more than a week.

After that, we became "old hands" - I wrote out a history of his disease, along with key phone numbers and a listing of his medications and kept a copy beside each of our telephones for reference. When you are panicked, you have a hard time recalling all of the information that the paramedics want. We also make sure that my husband puts his wallet in the same place every day so we can access his health card. Whenever he had a seizure, we could then spring into action - 1 person on the phone with 911, one person to collect the dogs and put them in a room away from the action, 1 person to clear the path for the paramedics, and 1 to collect the health card and medications into the clear bag we kept with the wallet.

When the seizures became more frequent (weekly), we were sent to a Neurologist and he gave us a script for Atavan (sp?) that we could give sublingually in the event of a seizure and it would stop the seizure. It really knocked him out and he usually slept for 4-6 hours afterward.

The brain cancer has progressed to the point where we cannot look after him at home - his seizure activity is at least twice per day. He is in hospital awaiting transfer to a hospice facility near us.

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Reply by Diane_23

13 Aug 2008, 9:34 PM

I'm sorry for you Debbie. My husband also has cancer which has moved into the brain. My son and I are caring for him at home. He has had no seizures to date but has had several falls. There is a bed available for him in a hospice when we are ready but my younger son has taken time off work to be the primary caregiver to keep him home. I don't know what I was thinking would happen in the earlier years of this diagnosis but I sure never imagined this kind of care. It sure teaches us a lot. I feel like I am really knowledgable now.

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