Year help: ~Scared Of My Tumor~ - Help.com

i’ll pray for you. keep strong.

no problem, but you can talk to me any time. i’m here to listen.

LIL you are strong willed and strong hearted, although this is a complete ***** of a thing to happen you will get through it!
I belive in you and I will always be here for you.

don’t think like that, keep positive.

I am so sorry you are going through this. Will you be having surgery? When I was younger I suffered from severe vertigo attacks, so I understand how you feel about the vertigo. It can be very scary. Hang in there and stay strong. Don’t always allow what you read to affect you, sometimes research and statistics are wrong. My mother had a tumor the size of a tangerine in her heart, which they didn’t think she could suvive, but 4 years later she is fine. My dad was told he would never walk again after a concrete block fell two stories onto him, but he was walking witin a couple of years. That was 25 years ago and he can still move just fine. You need to stay positive and know that anything is possible! You will be in my prayers!

Lil_Bit, Hope is truly one of the most powerful medicines on our planet! :)

Sweetie, I’m still praying for you. I know I have talked about my chordoma. It was a malignant spinal tumor which damaged my T-12 vertebrae. I was diagnosed with paraplegia actually a few days before they figured out what type of cancer I had. They told me I would never walk but I worked and got movement back in my feet. I have some limitations and I can no longer work (but I have experienced more than just the one surgery and several other things since my diagnosis in 2002).

Here is what I think is important:

- Your tumor is very rare (like mine was) so it is important to know that medicine doesn’t know a lot about it. You are such a positive person, and the mind is such a powerful tool. Do like I did and decide what you are willing to accept and what you are not.

- Remember that no one should tell us our limits or life expectancies. M.D. means Medical Doctor (not Medical Deity)! When my Dad and I were diagnosed with cancer, they kept trying to give us life expectancy but I learned to ask the doctors about theirs. Life is such an uncertain thing and the strongest tool we have is our faith.

- I would consult with a few neurosurgeons and ask your doctor to find you the right specialist. As soon as I found the right one, I felt differently about the treatment I had to pursue. Also make sure you know why they are doing the treatments they’ve selected. I only had surgery for the tumor. They told me chemo was used if an organ was involved. If they throw up radiation, make sure you know why - some times they do that to shrink a tumor (but steriods thru IV can do that too). Radiation before surgery can some time cause complications in surgery. So just make sure you really understand what the doctors say from here and make sure you tell them what you will agree to and not. Don’t let them talk negative in front of you.

I know you are a positive person and I know you’ve been through just as much as me. I know what you mean about being tired and feeling like it is never going to stop. I think we just have to give ourselves days when we do nothing and don’t think about what we have to do. I learned the only way I could get through it was to try to stay in the present (what is going on right now). I couldn’t change the past and I couldn’t control the future. So I try to enjoy right now as best I can.

You have your kids to keep you strong and they give you a big incentive for fighting hard. I will also say - this is a time to give yourself a break. Feel what you have to and let it out, then try to get back in that strong space again. And if you aren’t comfortable now asking for help or accepting it, learn to be. You could probably do this alone but it will be so much easier.

I was there and I know having symptoms is hard and knowing they might be there with you long after the surgery is over, it is hard. Some of quite embarassing too. You know I treat my life as an open book - so I will tell you the hardest symptom I continue to deal with is rectal bleeding. Of course I have a lot of pain from the surgery but some days I have to force myself to leave the house.

You might also want to check into some holistic/alternative health therapies. They can help manage some of the symptons and stress. I know how you feel and I’m with you - I am exhausted and tired wondering when things will get better and I have to tell myself that life is a gift and it takes a lot of self talk. Some times you feel like you’ve already gone through all these hard things that either people don’t know or don’t understand and there are things you need help (like financial matters if you have problem working) some times you have to accept people might not help. I’m starting the fight to help with that and you remind me that I have the strength. You can do whatever you put your mind to.

Lil, **** hon… Is this tumour operable?

Lil if you want to talk, you know where I am!! You on Msn? I’ll open my e-mail for you.. much love:)

Lil, your more than normal.. remember that, but I know what you mean! I’m sure you’ll get through it.. your one of life’s survivors hon:)

Best to you and yours Shi. Good to see that you are focusing on getting the information about it. Don’t let your mind stray too far past that into the “what ifs”, it’ll drive you bonkers sister.

lil_bit_shi wrote:
thank you kneady… that is a very positive way to look at things… and i will try working on that.. also.. i will make sure that the dr’s that i see are knowledgable about everything that is going to be done… before they do it.. another fear that i have is… this is my spinal fluid canal… one wrong slip.. and im paralyzed for life… not something that i want to happen of course… but thank you so much… and best of luck on your issues too.. so how did everything go the other day for you?

I know exactly what you’re talking about. It is scary learning you have a tumor and you just want the thing out of you. I hope you get nothing but good news from the doctors. My tumor was on the spinal cord and I understand what you are saying there. I checked out the neurosurgeon before surgery (to make sure he had a steady hand) and I learned his hobbies were painting and stone carving. When you find the right doctor, talk to them about your concerns so they can help put those at ease. I just helped my friend Scott. He had a chordoma too but his was at C2 so they were dealing with the top of the spine and near the brain. He was looking at some of the issues as you and was afraid. I told him I saw him as the Phoenix - the bird of inspiration because no matter what happens - it rises out of the ashes and has new life. Scott had an 18 hour surgery and spent 13 days in ICU, he crashed on day 10 and they weren’t sure what would happen. But he made it and he doesn’t have any of the side effects they thought he would.

Make sure you are getting proper rest, eating as much protein as you can get and taking care of yourself. I’m not a doctor and I wish I could tell you more. You might have to travel to another city to find the best doctor and make sure you meet them face to face before you make decisions. I live in Cincinnati, Ohio and we have a couple really great neurosurgeons here. Scott came to Cincinnati and he was in awe of how prepared the doctor was - he even pulled out his laptop and medical books to explain everything. He did tests and was really prepared and he stayed focused - the guy did the whole 18 hours of surgery without turning parts over to someone else (which they did in my case - and my surgery was only about 8 hours). You’d be surprised to learn how strong you are - I know you are a strong woman but you have an inner strength that is going to kick in and you’ll find you’re even more powerful than you thought!

I’m hanging in there. I will tell you since I am six year down the road now from my tumor that you will have peace and it won’t be hard all the time. It is hard not knowing what will happen now but it will start to get better after you get treatment started and behind you. You deserve to be happy, healthy and whole.

I belong to an online international MSN group for chordoma patients (though I am on break from them right now) but we let other people with tumors of the spine or brain join - you just can’t participate in research unless you have chordoma). Anyway, there are a lot of other people who have/are dealing with tumors on the spinal cord if you want it might be a place to talk to people, get perspectives on doctors and treatments and make a few friends who really understand what you are experiencing. Just go to MSN groups and search on chordoma and you’ll find us. I’m ‘princesskneady” on that site.

My interview went well the other day and I had to spend two days tracking down the doctor so they can schedule time to get the medical side and the piece should air in 3-4 weeks. I’m starting to deal with the disability issue. I just never thought it would be denied. Have a nice evening sweetie and do something just for yourself tomorrow. Feel what you need to and get it out before you start treatment.

i dont know what to say……

lol thanx…..

Hey! I have a link for you: http://groups.msn.com/chordoma/_whats….

Just note that there is a guy on the site that pushed my button and really hurt my feelings so I was on break from the site. I got emails from a few friends there asking what happened and now since my friend (you) need support I just posted a message telling them I am back and that I invited you. I will send Ann (the group manager) an email telling her as well that you’re going to take a look at our group and I really think since we all deal with spinal cord issues, paralysis and a lot of the symptoms you mentioned that this might be a good place for you to find a support network to understand this experience. Caregivers are welcome too. I’ve met a lot of loving people here!

Hang in there. Some days will be easier than others and on those other days - just lean on us! Love ya,
Diane

Okay Tammy - I also emailed Ann Wood - the manager of the chordoma site. Take a look at it when you have time and feel free to sign up and see if this is something that might help. Our group consists of patients and caretakers and parents (some patients are as young as 3 sadly). We deal with the spinal cord and tumors and we have the same fears and similar stories so I hope it can help. I’m made some great friends on the site and we keep each motivated to keep going! Prayers!