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Husband is paralyzed by advanced cancer 
Started by Loving Wife
09 Aug 2015, 12:25 AM
My husband has been daignosed with advanced prostate cancer. He found out he had cancer when a tumor compressed his spinal.cord and paralyzed him from the waist down. We had no idea he had cancer when he began having back problems about 10 months eatlier. He was seeing a chiropractor but only getting intermittant relief. Then one day at work he could not stand. He was rushed to the hospital where we got the terrible news. He had a tumor on his spine and it was cancer. He had an operation that night, but it was too late. The cancer was determined to be stage 4 prostate cancer and the paralysis has turnrd out to be permanent.

I can'r even put into words what this has dne to our lives. Normally, after news like this we would want to travel and enjoy life as much as possible and fight the cancer as hard as possible. But this life we are living is very constricted. My husband can't bathe, dress or get into a car without a lot of help. His attitude is great, but his body is very weak.

I want us to enjoy our time together, but even going out to dinner is a challenge. We have not tried a hotel yet because he is so limited. We have not found a hotel that has all of the bathroom accommodations he needs. And he is only comfortable in a hospital bed with an air mattress. We are going stir crazy just being home. To make it harder, an't find anyone rise who has ever been through this.  I see support groups for.paraplegics and those for cancer patients. But we have found nothing for people whose metastatic cancer has left them paralyzed. Even our oncologist is helpless when dealing with the paralysis issues. And the doctor who deals.with the spinal.cord injury seems to know nothing about cancer. 

This is very lonely and hard. And scary. Has anyone else had any experience with thiis?

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Reply by moderator | modératrice
09 Aug 2015, 4:19 AM
Hi Loving Wife,

How frustrating that health care is divided into compartments that often don't align with reality. Cancer is often not an isolated disease. The rarer the combination, the fewer supports we can find. While there is a member of the Virtual Hospice community that has lived your exact experience, I know there are many who care or cared for their partners.

You will find compassion here. We listen without judgement, ready to virtually be by your side whatever you have to face. You will be welcomed by other members soon.

In the meantime, we'd like to get to know a bit more about you. It sounds like you are both pre-retirement age and that travel is very important to you both. Are day trips possible? 

Talk soon. In the meantime, I'm going on the search for some resources for you.

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Reply by Loving Wife
09 Aug 2015, 7:14 PM
Thank you Colleen. We are both pre-retirement. I just turned 60 and have a couple of years more to work before my planned retirement date. My husband is 63 and has had to retire on disability. The cancer is totally heartbreaking, but the paraplegia is life-changing. I feel like we can't make the best of the time we have left. Each day is spent with me working as hard as possible to take care of my husband, my job, the house and yard. My husband is consumed with TV and the computer because that is all he thinks he has. The highlight of any day is when we have company, but people rarely come. Even our daughter, with whom I believed we would always be close, only comes if ther is an occasion. she loves us but can't deal with our limitations and the sadness they bring.

i am becoming aware of what I have heard so many others say...that this kind of suffering causes some to lose the people we were close to and create all new relationships. Some people who were only acquaintances before are closer than my own family. I am grateful for them!

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Reply by Carlyn
09 Aug 2015, 7:58 PM
Hi Loving Wife,

I'm glad you posted here. It is very hard to have such a change in living and routine.  

I've had a bit of experience with cancer limiting mobility in loved ones I cared for and it was difficult to adjust to new life routines. I live with illness myself now and it limits my life in many ways.

TV and computer may seem less than ideal but they can both give some valuable quality of life. I've toured the Louvre, watched documentaries about science and arts, all on youtube mostly. They get my mind off my illness and circumstances and help me feel a part of life and the world. It sounds sad I know but it is better than life used to be pre-internet with illness :-) 

That said, I know that feeling as a caregiver that it shouldn't be like this, that people should be around more, that dear loved ones are not showing up and trying to understand why and what to do to keep spirits up of loved one? It's a daily vicious circle.

You're both still adjusting and it's normal for this to be emotional time full of concerns. If it helps, talk with each other about each day, make small plans you can do with ease for now until you've both adjusted and have more supports. Look into hiring a service to cut lawns. 

Talk with your daughter about her feelings if you're up to it. Suggest she could come and talk about things unrelated to your current situation, make her Dad laugh or be stimulated by a topic he finds interesting. Whatever they used to talk about is still worth sharing.

I hope this is a start. I know others with more experience will join in welcoming you soon. Take this one day at a time and focus on what matters and let go of what isn't really a priority or necessity. It takes time to figure those things out I know. 
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Reply by KathCull_admin
08 Sep 2015, 9:28 PM
What a difficult time this has been for you. So many competing demands. It is good to hear that new relationships are supporting you both. Do you think your daughter would find it helpful to talk with a professional - it must be hard for her too not to be able to spend time with you both.   

I wanted to make a comment about your nickname. After my husband died, several people told me they had noticed our warm and loving relationship (believe me we had our disagreements too:) - I don't think any comment has meant more to me. Your nickname brings back lovely memories and tells me a bit about your relationship with your husband too.  Thank you.

Until we talk again.

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Reply by Loving Wife
08 Sep 2015, 10:44 PM
Thank you Carlyn and Katherine for your kind responses. As I write this, my husband is back in the hospital for unmanageable pain. Last week he stayed 4 days for pain management and hallucinations from the meds he was on for pain. Today I received a letter from our insurer that this visit will not be covered because hallucinations are not covered for in-patient stays. 

My husband received news from his latest ct scan yesterday that his spinal tumors have grown and he has new ones even higher on his spine. He is frightened and heartbroken. He is such a faithful optimist, he never really believed that his cancer would not be cured. I hurt so bad for both him and myself that I can hardly function at work. I just want to be with him every minute, but someone has to have an income and insurance. And I have certainly missed plenty of work in the 11 months since his diagnosis. 

I want to be positive, but it takes all I have to stay positive for him. When I am alone, I have to admit that I am struggling. 

 My daughter is suffering too for her dad, but she is trying to run from it. I do understand that. It is just too painful to see him flat on his back, paralyzed, sad and, in many ways, helpless. This had definitely challenged my faith. It will survive, but it has changed. 

Thank you for letting me vent. I know I am fortunate to have loved someone so very much.

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Reply by Carlyn
08 Sep 2015, 10:57 PM

Venting is a must. This is a safe place for it.

There are a lot of great people here with a wide variety of knowledge and experience too. 

I'm keeping you and your family in my thoughts. If you're comfortable with hugs, sending a virtual (Hug). If not, that's totally ok. We're all here for you.

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Reply by JennJilks
14 Sep 2015, 3:57 PM
Wives tend to find themselves in difficult situations, don't we?!
My husband had his prostate removed a year ago January. The cancer cells have metastasized and it is just a matter of time. Changing your husband's catheter bag, and giving him enemas and suppositories has brought us closer together. Bizarre, but there you go.
 We are determined to enjoy each day.

Being in pain is a totally different and difficult situation. I'm wondering where you are, since you said your insurance isn't covering your husband's stay? This sounds like you are in the US. In Canada we need not be declared palliative, nor qualify for particular care. We also have a program whereby we can take time off of work to give care to a loved one. The son of one of my clients sent on this, since he was caring for his father. I am a hospice volunteer.

We have paid for little other than transporation and parking, which is a relief. The costs add up when this isn't the situation. 
I would suggest you contact your local hospice to see if you can get some support or an advocate for the both of you. They can lead you to agencies who will do so, no matter where you live. You can search 'hospice + your city/town'.

Another suggestion is to try and Skype or do Facetime (iPad) with your family. This has helped us. This might be a solution for friends, as well, but I have few friends, truthfully, and havne't tried it!

Are you in a faith community? Reach out, if you can. Religious leaders can be great or terrible in such situations. It so depends!
In Ontario we have Symptom Management nurses who are experts in the type of medication and alternative symptom management that would help you (Reiki, Therapeutic Touch, massage).  Physicians are notoriously bad at this. When my father was dying it was the inexperienced nurses who would phone and request particular meds from the doctor. This is bass ackwards.
We have so much knowledge of pain management, for most of us, we should not die in pain. These are my suggestions.
All the best, and let us know what we can do, other than moral support! Or if you have further questions.
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Reply by KathCull_admin
01 Dec 2015, 2:21 PM
How have you and your family been Loving Wife? So much can happen in a few short months. My heart aches for you.

You mentioned in an earlier post LW - your husband needing to retire on disability. I was talking to a woman yesterday and she said one of her greatest regrets was not being able to say she had 'retired' because she had to stop work due to illness. 

Failing Friendships  was started by lindseymarie last year - not sure if you had seen it. Talks about the disappointment when friends just arent' there.

Until we talk again.

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Reply by Loving Wife
02 Dec 2015, 1:45 AM
Hi Katherine,

Thank you you for asking about us.  My husband is brave and positive in spite of his suffering. He is nauseated almost every day. We're not sure whether that is from the cancer or the treatments. He has asked to stop one treatment that helps with pain, because it made him sick to his stomach. I hope that ends up being a good decision. It's hard to decide between pain and nausea. 

It is very hard to see him go through all of this, but it is hard on him when I get upset. For me, it is certainly a change in responsibilities. He cannot do anything around the house and needs a lot of help with his self care. I am really too busy to feel things as deeply as I would normally. I only have time to think when he is in the hospital...which hasn't happened since September. I hope we can make it through the holidays at home!

I will try to make this Christmas as warm, pleasant and stree-free as possible. I want to make memories!

Loving Wife
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