Explain how real world support group(s) have helped you deal with brain tumors.

2. n/a
3. People with similar experiences sharing info. Have learning from others experience and able to share my experience. Having been doing this for 20 years, sharing is a major benefit of participating. Very healing for me.
4. N/A
5. I have not joined any real world support groups due to time constraints.
6. They talk about real-world problems and how to deal with them using local services. Able to refer newly diagnosed to local sources of treatment expertise. Morale-boosting to physically see long-term suvivors that are doing well.
7. na
8. N/A. Wish my husband would attend one.
10. Face to face interaction with people in similar circumstances. The ability to actually see how they are impacted, even if that is just a scar...seeing how the scar is healing or has healed. Encouraged by the long-term survivors. Realization that my husband fairs well in comparison to others' deficits, and appreciation for it. Rewarding to see how my presence helps the others in some way. Additional interaction with the NO and team of doctors and nurses at the hospital.
11. We belong to a real world support group at our medical center but we rarely attend. We do not like the way it is structured or the leaders of the group.
12. Not at all. I never found one.
13. No help whatsoever
14. Not used
15. There are no real world support groups in my state. (MN)
16. N/A
18. Online support groups help validate my emotions. It is a place to go where people understand what you are facing. They are a place to discuss options with people that have been through similar or same experiences.They help investigate all possibilites for treatments.
20. n/a
22. not readily available in the rural area we live in.
24. N/A
26. n/a
27. helpful - note that I did not answer questions related to real world support groups in this survey because we have not belonged to one in about a decade, but at the time of the original diagnosis it was very very helpful to meet other families and to sit and talk together with people who understood
28. We do not have any pediatric support groups.
29. as a safe place to express feelings and comfort others dealing with these diseases
31. N/A
32. There are no real world support groups where we live in the UK
33. not applicable
34. I went to a caregivers group which was very helpful because they got how hard it was to be the caregiver and feel so alone and face the death of a spouse
35. None in a rural area. Not willing to travel for one.
36. I went to two meetings of a support group immediately after my mother was diagnosed. It helped me to learn more about the disease and helped me feel that I was not alone. My mother also went to a cancer support group for several years, though no one else had brain cancer.
37. Would join a real-world group if one was available, but haven't found one.
38. N/A
40. n/a
41. connection on, and affirmation of issues I deal with and, in some cases, friendships
43. I love the chace to meet others in my community who are struggling with this disease. We're able to help one another out in practical ways... offering driving assistance, recommending local resources, etc.
44. N/A
45. Great to meet people, exchange information, and for my husband to tell his story to others, as he does not participate in any online support groups.
46. N/A
47. Real world support groups have not helped me at all.
48. Nice to get a real hug from people you build a relationship with.
49. Our real world support groups have been mostly about having FUN!!! and forgetting about BT's for an evening or a weekend. We are fortunate to be in Orlando and have support groups form Give Kids the World which provides lots of attraction tickets and fun events as well as parents night out. Another support group that is affiliated with Candlelighters (www.basecamp.org) which offers parents night out and lots of other events, parties and overnight "camps" for the kids. Also, a new group has started recently that is also affiliated nationally Starlight/Starbright Foundation, which has offered lots of fun events for the kids.
51. Cannot convince husband, with bt, to go to a real world support group.
52. "Real-world" person-to-person support groups are, in my opinion, are very helpful because they are real. Talking face-to-face with other cancer patients allows me to help others, sometimes just by being there listening to their stories and sometimes by sharing mine. Being there for other patients helps me help myself through this experience.
53. It is comforting to talk with real people who are fighting the same disease together with you.
54. n/a
55. n/a
56. n/a
57. I haven't found a real world support group in my local area that I can attend. I am in north shore of suffolk. And my husband has no interest or energy in joining or socializing in a support group.
61. It was helpful to feel that I was not alone and to have other people who had survived a brain tumour to talk too. I did find that quite quickly I was the one supporting the new members of the group as my experience and medical background(I am a nurse) was helpful to other people in the group.
62. N/A
63. Only support group I've attended was to meet and see David Bailey
66. N/A
68. N/A
70. N/A
71. Rehab, free support, meeting fellow sufferers, counselling etc.
72. NA
73. Not joined.
77. N/A
78. learn about other treatment options, how others have coped with situatioins being with other people conferences have a chance walk we have a great support group
79. There are lovely people at the BT support group offered by our neuro oncs hospital. Its very hard for me to share how I really feel in front of folks new to this journey. After 20 years we've seen the worst of the worst. I have no desire to take hope when there is every possibility that there may be some from them.all situation are different. Plus its just too hard to arrange for help at home or evenharder to take my husband along. Online I get instant love and understanding from the best people on earth.
80. N/A
81. More information and education on these tumors helped me learn about it, though the doctor was giving a brief description, I came to know more about it thru these websites.
82. Meeting people and feeling that we are all in this together. Makes you feel stronger.
83. n/a
84. A diverse group of people with the commonality of being a parent of a child with a brain tumor; Sharing how to get betadine stains out of a First Communion Dress, how all the kids were picky eaters but would eat McD's French Fries, etc.
85. n/a
86. N/A - There are no real life support groups in my area that I know of.
87. See #42 above.
88. n/a - no bt-specific support groups in our town.
90. i made contact with brain injury support but forgot to follow up
91. n/a
93. I only attend a local widow's group....it is not specific to brain tumor loss
94. Provide information, provides opportunity to meet other survivors
95. It is so helpful to know you are not the only one dealing with this. It helps with info of new treatments, places, doctors, research, insurance battles, receiving and giving information to other survivors and their families. Cannot say enough about the support groups we belong to.
96. I met and heard Lebutti several times; the support group introduced me to Ruta 6 protocol; initially introduced me to temodar back in 2000; I started temodar in Jan 2001 and was on it for 28 cycles.
97. It shows me how lucky I am compared to other people
98. Have not gone for first meeting yet. Going to first meeting in September.
99. you get honest information
101. They have provided information, support and ideas about the different treatment options that are available.
102. face to face support, seeing the people in person and being able to touch them, give hugs, walk together, do things together. Speaking with local resources.
103. We have a WONDERFUL Group - like family. It's ok to share how we really feel. We hear that we are not alone in missing who we used to be, and encourage each other to be hopeful and positive. It also gives me a chance to ncourage others by my poaitive attitude and survival. We hear people who have had longer survival now. I see myself as a survivor! We love each other. We understand each other.
104. I have learned how other patients have dealt with their problems. I realize how lucky I am that both tumors removed, one in 97 and the other in 05 were benign. I have seen the courage that young patients with malignant brain tumors and their caregivers, cope with their ongoing treatment. Their courage reinforces my desire to live!
105. n/a
107. N/A
108. n/a
109. I have found that all the issues that go along with long term rumor damage is not isolated to just my family and I that it is synonimus with the brain tumor and all caregivers are going through the same thing
111. It is good to be able to have others to talk with that can truly empathize with what you're going through. The support groups can be very educational as well in regards to new and improved treatments.
116. I have not gone to real world support groups.
117. Just seeing every month that their are survivors out there, gives us hope that you can still live a high quality life with brain cancer.
118. I try and help other people battling cancer even if it is not the type that I have as I have not met another person with brain cancer. I am kind of afraif to hear what they have to say or what their prognosis is I believe that I am different as I was told that I had to types of brain cancer both malignant and stage 3 very rare so I convince myself that I am just different and wierd and will beat this and so far I am. I have gone to healers and try not to go to patients of my doctors because I ran 2 medical offices when I was diagnosed and I know that if people have had a bad experience then they will be negative. I do no that doctors are not god and we are sometimes not even a person to them but a number or statistic that makes me crazy so by doing research family support you can beat the odds with help and a lot of prayers.
120. n/a
121. use trust the people you talk to that has the experience.
122. I belong to a brin tumor support group that meets monthly. The leader is a ditz, albeit a nice person. She is mostly interested in hearing herself talk and to talk about her personal problems even if they don't have anything to do with brain tumors. So I haven't received much help.
123. Have never been.
124. Practical knowledge
125. There's no substitute for sharing hugs and in-person encouragement when needed. It's a great feeling being in a room together with others who share and understand the same challenges.
126. N/A
127. It is always good to be among "peers".
128. n/a
129. n/a
130. N/A
132. somehow it makes it relistic when one sees that this happens to real people.
133. N/A
134. n/a
136. same as above
137. When 1 initially joined I felt like I finally met people who understood me. That was very short-lived. The group didn't help me deal any better with my situation.
140. N/A
142. I don't go to any real world support groups.
143. Do not use.
144. I don't know what a real world support group is.
148. NA
149. My doctor has never recommended a support group of any kind and I am not aware of any such support groups in my immediate area.
150. n/a
151. N/A
152. /
155. Haven't used
156. na
160. only family
163. Just by knowing there are others going through the same things that you are.
164. n/a
166. Wel actualy we didnt use any real world support group, but my mothers firend she had a tumor and she survived and she told us a reciept for a drink, a mixture of some vitamins and some fruits with AloeVera. so she told us that it helps so much.
167. Everyone treated the same in the groups. No favorites.
168. finding out that a number of other members used the same surgen. and I learend some of the questins i should be asking
170. n/a
171. n/a
172. helps to hear others stories
173. Caring people, and now it helps my husband to attend and lend support to others.
174. n/a
175. Not Applicable.
176. n/a I live in east end of Long island and there is no group near me
177. N/A
179. Once in a blue moon, one of the female care givers actually has someething useful to say. But you have to wade though a ton of useless emil messagers to find it.
180. NA
181. I don't go to real world support groups because none were specific for brain tumors in my area after I checked initially. There is a support group for brain tumors where my dad gets his treatment about 100 miles away but I have never attended due to caregiving and job responsibilities.
182. n/a
183. n/a
184. do not know what these are yet.
185. na
186. N/A
187. They validate my feelings and help me research other options.
188. See above. (Question #42)
189. N/A
191. Being able to physically meet others like us. Real hugs, real tears, real joy. Having someone local I can talk to.
192. n/a
193. Met some local spouces of people dealing with BT's so we compare notes.
194. N/A
196. Have not joined any real world groups.
197. THE ONLY ONE I'VE ATTENDED WAS BECAUSE DAVID BAILEY A LONG TERM SURVIVOR WAS SINGING, OTHERWISE THE PATIENT HAS ATTENDED ONLY 1 OTHER SUPPORT GROUP AND DIDN'T LIKE ALL THE NEGATIVITY AND HAS NEVER GONE BACK
198. have not used any--find one social worker to be an idiot one psychiatrist was a complete moron with the subject
199. N/A
201. n/a
202. N/A. I haven't wanted to go to one.
204. N/A
206. Discussions with other people face to face hearinfg their experiences, their opinions, their advise, their limitations, job discrimination issues, insurance issues, just plain person to person interaction
207. Its a place we can chat about our hospital and general cancer stuff.
210. N/A. I don't have time to get to a Wellness Community group, for instance.
211. Personal contact.
213. N/A
216. I didnt even know there was a real world supprt group
217. I have not been in any support groop's
218. I have never heard of real world support group(s).
220. N/A
222. it is good to talk to real people that might need my input and or get ideas from others
223. Not Applicable
224. None available in my area.
225. NA
227. Priveded information on how other survivors and fanily mebers are dealing with it; offerers opp. to exchange information. Shows me how fortunate I am and what others are dealing with.
229. Since I live in Annapolis, I don't have a real world support group. It is only 45 minutes away, but have my husband drive, no way.
230. give us hope- we did go to teh Simonton CAncer center and nobody else had a brain tumor but the people and Carl Simonton has been wonderful
232. Not tried these yet.
235. I live in a small town in Oregon. There is NO brian tumor real world support groups. I wish there was!!!