willingness to share

[worriedwife]

My husband is a SCT survivor and it has greatly affected our lives. Wondering if there are any people out there in the same situation as me willing to discuss their expeiences. Thanks....

[garyw]

My husband is 6 weeks post surgery, and is in a wheelchair in a rehab hospital. There are huge changes in our life at this point, and when he comes home, I think everything will be very different from what it was before the surgery.
I think every step of the way will bring new challenges, but I know the worst thing in the last couple of months was the incredible stress, and the unknown - from doing a lot of reading, I knew the whole range of things that could happen, but I didn't know what was going to happen in our case, because everyone is different.
I guess so far I have found that it is important for the caregiver to take care of him or herself self too, because it is vital to be healthy and strong and able to cope with whatever.
There are many people on this list, all with differeing levels of pain and deficits from this disease, probably some with similar problems that your husband has. One of my ways of coping is to learn as much as I can about this, so I can understand what my husband is going through, and maybe find some way to help.
Stay strong, and from the comments I have read from people who have been in this situation for a long time, we can adapt to the new life.
But it's tough, on the survivor and the caregiver.
Judine

[worriedwife]

My husband was originally diagnosed and had his first surgery over a year and a half ago. The surealness of it has begun to set in and now the everyday reality of it has start to hit, and I ask myself the infamous question that I really don't want the answer to...while he has come so far and is truly my hero....is this the best he is going to be, and if so, what is life going to be like for him in 5 years....and will there be one....I wish you so much luck and if I can help you in any way, please don't hesitate to ask. Funny, I have multiple college degrees, and in the last year I learned more than all put together. It's a tough road, but I can honestly say, my husband and I are closer now than we have ever been in our entire marriage. Best of luck.

[jim3587]

If it helps any my husband had surgery 11 years ago and recovered pretty well although it did take a couple years to get back to his new normal. He has deficits that are fairly significant, but he can walk(sometimes with the help of a cane for balance) and do most things to lead a pretty normal life. At least annually he goes back to physical therapy for a sort of tune-up. There's no getting around the fact that these things change life forever..he used to run or bike everyday and I know he still misses that. And everything is harder and takes thought and that is tiring for him even now. 11 years into this he's starting to see things get physically harder than they were, but again he is still able to do many - even most things. I came along a few years into this so my life didn't change with him, I fell in love with the new normal. We now have 3 little kids and he's a wonderful husband and dad. I do think that having kids renewed his sense of loss, seeing from a new perspective all the things he wouldn't be able to do. But even the 4 year old has learned that there are things daddy can't do and we just figure out a way that we as a family make everything work. I don't think if you had asked him a year or two into recovery if he thought he would get married and have a family after going through everything that he would've thought it was likely. Things change and keep changing and somehow we adapt to the changes.

You and your husband will most definitely have a good life 5 years from now, it just may not be the life you both expected and planned on. You need to take care of yourself in order to help take care of him. Just know it takes time and that everything will settle down and seem normal again at some point.

And if you have any questions please feel free to ask.

Good thoughts!

Tina

[caregivingsis]

My brother was diagnosed 12 years ago with SCT- myxopappilary ependymoma. He had a relatively normal life after partial resection and rehab. Learned to walk again and was doing pretty well with recurrance and chemo and all the radiation he could take. He is now in hospice care as nothing has worked and tumors continue to grow. He has become quadrapelegic in the last 6 months and slowly getting worse. My parents in their 70's are his main caregivers- I am his secondary caregiver. I am losing my mind somedays. I don't know how to get through and am so unprepared for him to die. Anyone been through this part and have advise? How will he ultimately die? any advise would be appreciated. Best to all.

[nancy]

I thought Tina's comment of finding a "new normal" is exactly that. I cared for my sister and it took her almost two years to find a comfort level with her abilities and such. As the caregiver, I've felt all kinds of emotions and questions, including why did I have to take care of her. I am a single parent with two teenage boys and a handicapped mother. To care for my sister I had to arrange care for all of them and my beyond full time job. I felt a lot of stress and guilt for having those feelings. I've learned so much about the stress on a caregiver and how we can also learn about ourselves and from our "survivors."

The bigges thing... is to create a new normal. The old normal no longer exists. This may also mean the new normal includes finding support and coordinating "breaks" for yourself without feeling guilty. I learned it's hard on the patient too to watch you change your lifestyle because of them. My sister and also my mother now, seem to like when I get some time for myself. Maybe it means they don't feel so guilty either?

My best to all the caregivers and the daily decisions they make.
with love ~ Nancy