Share this:
roxy37

looking to join a support group

Posted by @roxy37 in Cancer, Oct 23, 2011

I am interested in joining a support group, even if only by chat. A week ago, I had surgery to remove part of my bladder among other things. I have a rare cnacer, urachal andenocarcinoma of the bladder. This is a rare cancer in the US but only happens 1 in 5 million. It was rather scary as not as much is known about this cancer. This is my second cancer. My first was last year...I had uterine cancer. Once I had a hysterectomy, I became cancer free. This is a whole new cancer, diagnosed 1 year and 2 days later than the first. To top it all off, I am the youngest of three girls in my family. All three children have cancer. We lost my oldest sister after a 6 year battle with breast cancer, in May 2011. I was diagnosed in Sept 2010 and my middle sister was diagnosed in December 2010. All three of my parents children have cancer and they have already lost one child. I also have a 19 year old son and I worry about him, physically and emotionally!

Though I have supports, as those with cancer know, those well meaning supporters don't understand what is truly like because they don't have cancer. I need to talk with others that understand.

Thanks!

Tags: Cancer, mental health, healthy living

Roxie43, POPPOP, JDouthart and 1 others like this
jeannettew

Posted by @jeannettew, Oct 31, 2011

Sorry to hear about you and your family and the battle with cancer. My heart goes out to you. I didn't realize how much cancer there was in my family until I was diagnosed in March wtih breast cancer. I also have two sisters. So far I am the only one with cancer and I hope it stays that way. My daughter is in her 30's and I worry about her. I share your fear for your children. You are right about others not understanding. They just can't help it. I didn't understand either until I had it. I had melonoma surgery last summer, 2010 and then breast cancer this year. It is very scary. I have always had checkups and mammograms but this didn't show up on a mammogram. It when from 1/4 inch on an ultrasound to 3 inches on an MRI. Very scary. I have just finished treatment, chemo and radiation, and I am now waiting to get my strength back. It has been almost two weeks so I am getting restless. I have no energy. I hope you have a Happy Halloween. This year has really gone by fast. When you are living from one treatment to another, time flies.

roxy37

Posted by @roxy37, Nov 2, 2011

Hello Jeannette,

Thanks for responding. It is helpful to hear from others that are going through the emotional and physical feelings that I am. I am thankful that at this point your sisters don't have cancer. I hope they are being checked regularly as it came out of the blue for my sister and I (my oldest sister was the "index case" as they say). My two sisters both have/had breast cancer and I haven't. I had uterine cancer in 2010, had surgery and thought I was cancer free (that's what the doctor told me). I began having some other troubles and by shear "accident" they found this rare bladder cancer.

How frustrating for you that the mamogram showed a 1/4 inch and the MRI showed 3 inches. So you haven't had any surgery? Is that something you need to do or will you need to continue with chemo and radiation. I've been lucky that I haven't had to have chemo and/or radiation. This last tumor was resistant to it. Both of my sisters have gone through radiation and the sister I lost had chemo for years. I know how exhausting it was for them and how difficult it was to come back. I'm really in need of some normalcy in my life again. I have a wonderful support group of family and friends but there are times I still feel more alone than ever in my life. I just want to be done with all of this and get back to my life. I haven't been working so I want to find a job and move on. I am a creature of habit and need my routine.

It is very difficult to be restless yet have no energy, I understand. Thanks for understanding. I'm wishing you energy and enjoyment. Best to you!

jeannettew

Posted by @jeannettew, Nov 3, 2011

I had a mastectomy of my right breast April 6, followed by chemo and then radiation. I guess I left the surgery out. I am still very sore from surgery and the radiation. I finished it two weeks ago. My skin is much better but the breast bone is very tender. Normalcy. I forget what that is. I feel that it will ever been the same. I just try to make the most of each day, despite the lack of energy, even if that means just watching TV and resting. I go on facebook and play games on my computer or Iphone. I am just optimistic that it will get better soon. My doctor told me yesterday it could 6 months. I am counting on it being soon than that. I am glad you have a good support group from your family and friends. That is very important. I didn't realize how many friends I had till this happened. Everyone has been very encouraging and several have helped with transportation to radiation treatments after I got to the point I couldn't drive myself. I am afraid right now to drive because I get very weak and feel like I'm going to fain just sittting in a chair or laying in bed. I sure don't want to be behind the wheel of my car when that happens.

I know about routine. My teaching job was cut last spring and it was very difficult not to start the fall getting ready to start school again last summer. This summer it was out of the question because of my health. I retire in April of this year because I had to and I hope to eventually get a part time job subtitute teaching of something. I need to do something, too. In two weeks I hope to be able to walk around the block for 10 minutes and a month after that walk for 20 minutes. Right now it is hard to walk out to the mailbox and back.

It is amazing tome that the bladder cancer was discovered. I don't think the doctor are aggresive enough with treatment and miss what is really going on because they don't do the right tests or stop before they find what's wrong. I had melonoma last summer on my right leg and the dematologist suggested waiting to do a biopsy on the mole on my leg. I said no because I had lost my job and needed to get things done while I still had insurance. I said do the biopsy now. He did and it came back melonoma. Stage 2. I had surgery. When the lump in my right breast showed up on the ultra sound the prognoisis was to wait three months and recheck it. My GYN said he wanted to get a biopsy and see what we were dealing with. I said thank you. The biopsy came by cancer. Treatment needs to be aggressive or these things are missed until it is too late for treatment.

I hope you are able to find your Normalcy and a job. I wish the best of everything in your health and career and family.

Posted by Anonymous-209bab32, Nov 5, 2011

I am SO sorry to read of your situation...I was diagnosed through bloodwork with a very rare subtype of Chronic Myleogenic Leukemia that only 5% of all leukemia patients have so very little statistics of me either...I take a daily chemo pills which made me quite sick for a few months but am doing a bit better. I will be on this for the remainder of my life which isn't known either how long this will last...there is no cure for it. I totally understand the emotional state you are experiencing.......

jeannettew

Posted by @jeannettew, Nov 5, 2011

Dear Anonymous,
You sound like one tough person. I hope you continue to improve and that the medicine becomes even easier on your system. It is wonderful that they found out what it was. So many times disgnosises of this type go undetected. Some don't seem to know what to look for. Good luck to you in your treatment. I wish for you a long quality life.

Roxy37 likes this
roxy37

Posted by @roxy37, Nov 22, 2011

PS - I'm turning 40 on November 28th and am praying that my 40's will be the healthiest yet...we all can do it. And my sister Robyn, that passed in May due to breast cancer at age 46....was incurable from the moment of diagnosis. She was "supposed" to only live for 2 years and lasted for 6 years. She was strong and fought hard...her montra "it's not an option to die" that kept her going for 6 years! Thank you Robyn for sharing your strength with me. And, thanks for watching over me. I love you sis!

Roxie43 likes this
jeannettew

Posted by @jeannettew, Nov 22, 2011

Great words to live by!

Roxy37 likes this
sebley12

Posted by @sebley12, Nov 12, 2011

Wow, you have been through a lot and I pray that you find strength and courage and peace through all of your journeys through this lifetime. God Bless you.

Roxy37 likes this
roxy37

Posted by @roxy37, Nov 22, 2011

how lovely of you!

carolmartin

Posted by @carolmartin, Nov 21, 2011

I was diagnosed with chronic lymphocytic leukemia on Nov. 14 (also my birthday--what a gift, eh?) They are taking a wait and see approach. I am glad you are receiving treatment, but the "no cure" prognosis is the pits, but also true for cll. It is hard to wrap your mind around it and it is all that is on your mind. I think most of my grandchildren because we are very close and I do not want them to worry about my diagnosis, so I asked their parents to say nothing to them right now. Do you have grandkids and how did you deal with telling them? If you have any way of dealing with these emotions, feel free to share. I feel like I am on another planet right now.

roxy37

Posted by @roxy37, Nov 22, 2011

Hi Carol,

Thanks for writing and having the courage to share your story and more importantly your honest concerns. I am honored that you chose to do so. First and foremost, I am so sorry that you have this horrible diagnosis. Is there really no cure for your leukemia? What about a bone marrow transplant?

I understand it being hard to wrap your mind around and being ALL that you think about. I ended up having many nights (my partner works nights so I was able to have time), I layed in bed and cried. I cried because more than anything I was afraid for my son. He is 19 and has only had me. His father didn't become a part of his life until only the past couple of years. My son is strong and independant but still looks to me. It scares me that if I were to die, he would become cold and hardended and not let anyone in. Of course I thought about my partner and my parents but as a parent yourself you know that nothing is as strong a love as your children. To top it off, we just lost my sister in May at 46 years old to breast cancer. My parents have 3 girls and all three have cancer. The other two have breast and I was "blessed" with two different types of cancer and neither breast cancer. So my parents are grieving the loss of their first child, the oldest, and having to worry that me, the baby, is going to die as well. My father was falling apart! It was so difficult to have to share the news with them. In regards to my grandchildren....I have 3. They are my "step" grandchildren legally, but that means nothing to me....they ARE MY GRANDCHILDREN! I love them with all my heart and would give my life for them. They are young still....5, 3 and 1. So the only one with any understanding was the 5 year old. I explained to him that I had to have surgery to make my belly better and that I would be away for a few days with the doctors (he gets nervous about the hospital thing). I told him when I came home I wouldn't be able to play for a while like before and I would need him to be careful around my belly but we could still kiss and hug and sit together and read books. He asked me if he could help me and I said if he wanted to. When I got home I reminded him of our conversation and for a couple of days he wouldn't kiss me. I was sad and asked him why not. He said "I don't want to give you germs that will make you sicker." He got over that in a few days, he was helpful and I still made efforts to read and talk. He's fine with it and said he wanted to thank the doctor for making my belly better.

So I have a bit of an "out there" way that I worked on dealing with my emotions. I read this book about cancer support and it gave creative outlets for handling the cancer emotion. I took on one of the crazy ones. It is my "cancer wall". I chose a wall in my house (its upstairs the space between my bedroom and bathroom - 8' tall and about 5' wide) and it has become MY WALL. I have used marker and drawn on it, wrote on it, put pictures up....done anything I wanted that made me feel better. I used it over months....added something that I wanted whenever. At first my family thought it was crazy. I said "I pay the mortgage and it's only a sheet of sheetrock. I can paint over it or change out the sheetrock....big deal! If it helps me, its nothing compared to what this cancer is doing to me. I wrote all sorts of random things....some things that only meant something to me. I noticed that when I wasn't looking my partner and my son....by themselves....would stop and look at the wall and would start to look for new entries or activities. Once, I saw my son and walked by without saying anything. He seemed embarrassed and went to his room. I never said a word. Later that night he asked me what something on the wall meant and I answered him honestly. It was a great way for us to talk as well as for me to deal with my overwhelming emotions. I have put pictures on my facebook and I would be happy to add a picture here if you want to see it. It's still there and will be for some time. Its a good reminder of how lucky I am.

I have found that no matter how much your family, friends, loved ones want to help, there is only so many times they can keep hearing about it. They have their lives as well and their own stuff going on. For us, ALL we can think about is the cancer. Though they want to be there, you can't help but see the look in their face when you bring up your feelings or the cancer. And we can't help but eat, breathe and sleep cancer. And the constant "upbeat" attitude suggestions are all well and good but at some point we need to honestly vent.....however that may look. But they get upset and look to us to be strong. It's hard. Then you feel alone. I have found that although my family and friends really want to help, the best help I get are from people like you. Even though we don't know each other, no one can understand the feelings and emotions of cancer better than someone going through it. So, please keep talking to support groups and to others who understand. I will be here and willing to offer any support I can. I'm still going through it too but am getting stronger both physically and emotionally.

Please reach out...
Best, Roxanne

carolmartin

Posted by @carolmartin, Nov 22, 2011

Hi Roxie,
Thank you so-o-o-o much for posting. I love the idea of your wall because it does allow you to communicate with your loved ones. You communicate so well, unlike myself, but I will do the best I can. Right now, I am realizing that I will have to call the surgeon who removed the lymph nodes because I have a fever and I think the area under my arm is infected. Sunday I worked outside for three and one half hours spading, planting 60 bulbs that I had purchased from my granddaughter's fundraiser, and digging carrots. No one is going to do that for you and i would never ask someone to. So, I looked at the doctor's discharge orders and it says nothing about activity except to limit them for the first 24 hours and it has been 17 days since the surgery. Besides which my daughter invited me to go along to Florida for Thanksgiving break and we are supposed to leave today. A--A-A-R-R-gh!

Your family has really had a lot of cancer sorrow. I shared with my soon to be 89 year old mother that I was struggling to cope with the idea of mortality and she said, "but carol, we are all going to die." Of course she is correct, but I did not appreciate the comment.

Once again, thank you for answering---your kindness produced a stream of tears as I read your post, which is good. It has always been difficult to cry, but now I feel it is necessary. Fortunately (not) I live alone so I can cry whenever. Thanks, Roxie

roxie43

Posted by @roxie43, Mar 11, 2012

Hello
I read your post as well as other's and it's amazing the things human beings go through in life. It's ok to cry. I was raised thinking that crying was a bad thing but as an adult when life's challenges become so overwhelming I too cry and you know what? It's not a sign of weaknes but instead a healthy way to cope with all that one is experiencing.
You are all in my prayers
Rox

roxy37

Posted by @roxy37, Nov 22, 2011

Thank you so much for sharing and I am very sorry to hear of your diagnosis and treatments. I can relate to the scariness that a rare form of cancer brings. Its so hard to get answers even from the doctors because they also don't know. They give you their best guess, which I do appreciate, but when it comes to having an idea what will become of my life or how long I have with my son or my partner, I'd prefer to have more than a "best guess". I understand their are NO guarantees, but some eductated information would be helpful. I must say that I am lucky in the fact that I don't have to have chemo or radiation. This is due to the fact that the type of cancer I had is RESISTANT to any chemo or radiation. I also thank God and count my blessings that I am now CANCER FREE, but as you noted, the emotional aspect is still very much a huge part of my life. I have been traumatized by this. The first cancer, last year, I handled okay...as weird as that sounds. But this time has been a beating on my emotions. I struggle to talk about it with anyone that doesn't have or have been through cancer because someone not there can't truly grasp the pain I have been through. There are times I'm afraid to get in the car for fear I'll get into a car accident. I can't imagine being laid up again. I don't think I could handle it at all.

I am so sorry that the chemo pills have made you so sick and I hope that subsides quickly. How do you feel about having to take it for the rest of your life? And what side affects will that bring to you? There is no other way to get rid of the leukemia? Can you have a bone marrow transplant? A friend of mine is working toward that and she has leukemia.

Please feel free to keep writing if you need support. I understand your position and would love to be a support system for you.

Best,
Roxanne

peacekeeper

Posted by @peacekeeper, Nov 14, 2011

This has been removed for violation of our terms of use.

jberry1

Posted by @jberry1, Jan 4, 2012

I know what you are going through. My parents had 4 girls. 3 of us had and have breast cancer. My sister who was 2 years older than me passed away from cancer. My dad passed away 6 months from her passing of lung cancer. My siblings that are left 3 girls including myseldf and my twin brother all have kidney falure also. Docs just shake there heads when asking about our medical history. This is my 3 round with breast cancer. Currently I am cancer free. Don"t ever loose hope. Miracles happen all the time. I am not suppose to be here now. I always say things could be worse or there are so many people with worse problems than me Prayer helps alot!.

roxie43

Posted by @roxie43, Mar 11, 2012

You are amazing and strong and I totally agree that having hope and perseverance is powerful. So sorry for all your trials and may God bless you with continued remission.
Sincerely,
Rox

roxie43

Posted by @roxie43, Mar 11, 2012

My paternal aunt passed away from cancer and it was difficult for the entire family because she was such a wonderful person. Towards the end it was so sad. No one deserves to suffer like that. A friend passed away from brain cancer and all he thought he suffered from were migraines.
I'm so sorry that this horrible disease has been so prevalent in your family. I dont blame you for worrying about your child. For now, try to take care of yourself because you have to properly recover. You will be in my prayers.....
God bless
Rox

roxy37

Posted by @roxy37, Mar 11, 2012

From one Rox to another....thank you so much for your kind words and support. I'm so sorry for your family as well. Cancer is such a terrible disease....so life changing in EVERY way! The fears of cancer returning are overwhelming!

Thanks so much!
Roxanne

roxie43

Posted by @roxie43, Mar 11, 2012

Hang in there and have faith that all will be ok. I wish a cure is found soon because cancer is a horrible disease.
God bless you and yours,
Rox

tristenjohnson

Posted by @tristenjohnson, Apr 16, 2012

I was diagnosed with colon cancer at 38 and since family history of cancer and my age they referred me to a geneologist. That Dr did tissue samples of my tumor and it came back with a abnormality and now im being tested for Lynch Syndrome. I am the youngest of 5 girls and the 2 one to have cancer. As Im waiting for my results all I can think about is my kids, grandbaby, husband and my sisters. If i have Lynch it puts my kids and sibilings at a 50/50 chance of also having it. Just hang in there and everybody who fought, is fighting or lost the battle to this horrible thing called cancer is in my prayers!

china

Posted by @china, Jun 15, 2012

hi. how r u feeling

Please login or become a member to post a comment.