Erin's Tumor

[greggerin]

Hi

I have a 15 cm tumor. It has been resected 6 times over 7 years and I have had two additional operations due to spinal leaks. I lost my bladder ( I self cathaterise ) and I must manually clear my bowel.. I have also lost all felling in the sexual region and I have a foot drop.. I can still walk. Not far but I need a stick and frankly I am just grateful to walk.

Just recently my husband pulled out of the marriage. I am 47 years old and I am a mother of two beautiful boys 11 and 16. I live in Australia. I am going through a messy nasty divorce and once I get through that then I am having another go at surgery.

I guess I need some support. I try and help others as much as a can I just rarely ask for help my self and it is not such a good thing to do.

So this is a a very rare call for help. I looked at this site 7 years ago but I was scared stiff. I have just soldiered on.
So if you have some time I would love to hear from you.

[guest]

Hey Erin, I am sorry to hear about your divorce and your dysfunctions in your bowel and bladder. These tumors surely take their toll on each of us.. and I'm no stranger to the constant pain and muscle spasms and numb butt and female area. Sex would not be fun as I could not feel it. My husband may as well be gone as he is pretty mean with remarks.. it is no different except I cannot work and have no way of providing myself with income if he did leave.. so we just roll with it.. He is ill and so am I so this works out. I would not be so hard on myself and not call out for help.. It drives your spirit down People need one another..and we need the support of other humans.. What does Bruce Springsteen sing.. The Human Touch.. it says alot and makes you feel bad when others do not have any compassion for how you are feeling and what you are going through.. Your husband will someday feel the wrath of illness and will know then how it feels when others walk away from him when he is feeling lowly.. I tell people I hope you get a spinal tumor just so you know how I feel. Mysister asks why I would say that to her because she would never want others to feel her pain. But it makes me angry when she doesn't believe me when I tell her my back , hands, arms, shoulders hurt terribly.. she has heard of others who have had these tumors and they are doing fine, unlike me who isn't, she thinks I am faking it.. I know how it feels to be slighted.. I wish you well in your surgery.. God Loves You, Jesus Loves You and so do I.. Take care..Lulu

[imnotmaggie]

Erin I am a single mom and my daughter's father left long before the tumor. I've. Found it hard to even date since the tumor because I feel like damaged goods. I've lost so much feeling below my waist that even when I had an endometrial biopsy I felt nothing and I hear it's actually quite painful. I worry how the lack of feeling would effect my potential husband and if I would ever find a man that will love my broken body.

I am a very independent person and being a single parent when I had my surgeries it was hard to ask for help but an important part of recovery is a solid support system and realizing it's okay to need help. I always did everything for everybody and I was overhwelmed by just how many of those people were by my side taking care of me and my daughter when we needed them the most. Even four year later those people are still here taking care of me and my daughter and I am able to find ways here & there to reciprocate so I don't feel like I'm always taking & never giving.

I know we are half a world apart but I'm a good listener and my ears are open if you need them.

[Kev]

Hello Erin,
Dispite what you have and what you will go through you must remember that there are people who care. I too have similar symptoms ie; drop foot,self cath,bowel dysfunction numbness etc... my issues began back in 2001-02 and since 2003-04 have not had any sexual adventures due to the nerve damage. I am fortunate to have my partner still around if she can endure this, there is hope for all. Please be positive and patient.
I had my tumor partially excised back in 2007 it was located at T12-L3 and to date no reoccurence.
I understand you've had reoccurence and surgery on more than one occassion, I hope things settle down for you.

All the best !

Kevin

[kansasmom]

Erin,

I am glad you finally posted here. You have already been through a lot and I'm sure that having some understanding listeners will help - even if it is just a little.

My son 'C' is the one in my family with a SCT. He is 15 yrs old and has a myxopapillary ependymoma from L1 to L4. He's had both surgery and radiotherapy in the last 5 months. The effects of his tumor are similar to yours - he has cauda equina syndrome. He's in PT for now and he has a AFO (ankle foot orthotic) and also knee braces (these are recent and we've not quite figured out how to use them). He uses a wheelchair (mostly), a walker, and is working toward elbow crutches.

Do come back and chat whenever you want. Most posts happen in the general forum area (I didn't see your post here until now). That's the best place to post.

[tiffanysmom]

How are you doing now, Erin? I'm sorry about your situation. I think the cold, heartless people in this world are the weak ones. Those people would not be able to cope with a headache let alone a serious debilitating medical problem. I don't think I could go through everything my daughter has gone through. Hang in there - people do care.

[tammyg]

Ok, we could be twins...I have had 4 tumors removed and my husband left for an 'undamaged' woman after the first surgery leaving me a single parent to two kids, 1 and 6 at the time....it has been 4 year of fear, surgery and recovery. I am walking with canes now and have a possible cyst or tumor again in the t4/5 region...just waiting on a follow up mri to confirm diagnosis. I am thinking a wheelchair is in my future as I have regressed quickly these last few months. I too wish I had someone to help me through this...to give my daughter a bath when I am dog tired and sore, or to make dinner once in awhile. I so understand when you say damaged....I can't imagine anyone would want to get involved with me right now. Oh and I self cath too. I just try to focus on waking up everyday and pushing fwd for my kids and if I have a good day than that is good enough for me right now. I have been reluctant to take help, but have recently realized I need it and have really embraced the helpers and appreciate them. It is hard though and I am constantly doubting myself about how good a mother I am because of my limitations....just rise from the ashes that are your life everyday....