Newly diagnoosed and need support

Britt74

Last Thurday, October 26th I was diagnosed with Follicular Lymphoma. They don't know what stage it is yet. They do know I have enlarged lymph nodes in my neck, both arnpits and groin. Those are the ones they can see. I am getting a port put in on Monday. This type of Lymphoma is not curable but they can at least manage the symptoms with chemo. I was born with Spina Bifida which means I am paralized from the waist down and use a wheelchair. I live with my parents for support. This all started because I have had moderate to bad pain in my hip, ribcage and pelvis for the last several years and my doctor has been trying to find out why. She has sent me to an orthopedist to see  if it was a damaged bone issue, nope. Then to a pain doctor for shots but those didn't work either. Then to a physical therapist but that only made it worse. I have taken Gabepentin for a couple of years and that worked for awhile but in the last three months or so it hasn't done much good. I have a good day or two here and there but thats it. So as a last ditch effort she was going to send me to one more pain specialist so she sent me for a CT scan so the pain specialist would have a better idea what he was dealing with. That's when the enlarged lymphnodes showed up. So the pain doctor went on the back burner and she sent me to an oncologist who just so happened to be her husband. He looked at my scans and said it looked like lymphoma and ordered a biopsy. So as you can tell I have had a lot of doctors appintments recenntly and my mom and dad are both saying they can't handle all of these appointments. They don't want me to pursue the pain relief issue. They say I just need to learn to live with it. That is easy for someone on the outside to say who doesn't have to experiennce it every day. I have always had a high pain tolerance. I'm not a wimp but it wears you down after awhile when you can't get away from it and you don't see an end in sight. I am grateful for life and every day that I have been given. I know it's a gift, but there are some days when I just want to be done. I just want it to all be over. I know it is har on my family to have to take me to so many medical appointments and I feel bad. It's no fun for me either. I have so many emotions about all of this. I go from being at peace, to numb to angry to sobbing. I can't talk to anyone around me about  it because my family wants it to stay private because they don't want people to be constantly asking them about it or me. They say that if I tell people my life will be all about my cancer but it feels like that anyway. Thats why I came here. Here no one knows my family so it is safe. It is too hard to keep it all inside. Thank you for listening to me ramble.

JosephK

Thoughts and Prayers are sent your way

Britt74 you are not alone. Don't ever hestiate to come on and never apologize for 'Rambleing'. Thats what this place is for. If your parents are unable to get you to appointments look for other services that can get you to where you need to go. This site can help with that I believe. Thoughts and prayers are with you. Stay strong, keep a good attitude, be your own advocate and never hestitate to ramble.

Elaine_wi

Social Services Agency

Britt74,

I am glad you posted to this site - that is why it's here. You are dealing with a lot right now and you deserve help. Contact the social service agency in the county you live. You can probably get help with transportation and advice on your family issues as well.

There is a lot of help out there - don't be afraid to ask. I will pray that you get more support than you are getting now. God Bless!

ClaCla

Lymphoma

Britt74, you've had a lot to deal with in your life!  I understand your parents' point about not wanting to tell people of the diagnosis because they don't want people to always be asking about it.  My husband and I made the same decision about my lung cancer; not even family members know (we don't have children or living parents).  Contact the American Cancer Society about needing a ride to appointments; there are volunteers who do that.  I think you can find out who to contact through this website.  As far as pain management, do you think your parents' concern is possible addiction?  That's not good because eventually the pain meds make the pain worse, not better.  But you still need to see a pain management specialist, and of course discuss it in depth with your oncologist.  You are in my prayers.  Best success.

llhgrey

Chemo Angels

Hello, I am so sorry to hear of your diagnosis - if you are receiving chemotherapy, there is a support group called Chemo Angels.  You apply, and once your application is accepted, two angels are assigned to you.  Your angels send you cards and notes of support, even small gifts to help you throughout your treatment.  Here is the website address:  http://chemoangels.wixsite.com/chemo-angels-1

Laura