Learning How To Count

Hey, so I’m 23 and I had this wonderful illness who took so much from my life, but yet at the same time, I feel that it gave me so much! Yes, that’s me confused. I don't know who I am any more. I feel as if everything I have ever been taught is gone. I can't remember anything, I ask the most obvious questions, I'm constantly hungry, tired, weak, and most of all irritated. I just remember when I knew my body so well, and how I knew what my reaction would be to things. Now I don't know if I’m coming or going and just when I feel like I have it figured out, something else comes along to prove me wrong and does the fear of this demon returning ever go away? Right now my latest affliction is my stomach----horrible heart burn 24/7 diarrhea, vomiting, just everything. So I’m freaking out that I have like colon cancer now----all my docs say that I’m to young for that---but being diagnosed at 18 kind of leaves me guessing. I’m trying so hard to lose weight, I do yoga every day, and try to eat healthy, but nothing is working. I’m desperate for help. I could go on all night but, I wouldn’t get anywhere--so please anything anyone can offer, I’ll take it.

Trying to cope,
Catherine

Hi,
Sounds like you're having a hard time, feeling confused. It's normal when you're diagnosed with cancer and it can become an emotional roller-coaster ride. It's tough when you get it so young... but what treatment have you been given? What stage is it? Are the reactions you're getting caused by the treatment?

The problem with any type of cancer is that the outcome is open-ended. People usually get diagnosed when there aren't many symptoms. But the treatment is where the going gets rough. And after, you have to cope with the side-effects and also the threat that it might come back. Also, you miss out on quite a lot while you're trying to get better.

Do you have access to any counsellors? They can be good for helping you vent your feelings and getting a perspective on things.

JD

Hi Catherine.

My name is Kathleen and I to was diagnosed with Hodgkins disease when I was 18 and I am now 34. I agree with you that having Hodgkins was a very difficlut time in my life but it was also a blessing in disguise as I believe it helped make me the person I am today.
I to have had issues after I went into remission but not until I went on some message boards did I realize those problems were directly related to my treatment. Were you treated with chemotherapy, radiation therapy or both? Back when I was diagnosed with stage 2b in 1989, they decided that radiation therapy was all that I needed. Today, I believe the treatment has changed and they usually treat it with both chemo and radiation. They found radiation caused more long term problems which I have been faced with. The first problem I had was with my breathing. They found my thyroid was underactive and I was immediately put on medication. When your thryoid levels are to low you will have problems with weight gain.
My second and most prevelant problem to date is with acid reflux. I have been diagnsed with barretts esophagus most likely caused by the radiation therapy. These are things you should definitely be on the lookout for if you had radiation therapy.
I would love to hear from you if you have any questions or just need emotional support. I wish the internet was around when I was going through some of the rough times I had during my cancer and first few years of my remission. Sometimes noone else knows what you are feeling or going through quite like someone who has been there.
Take Care of yourself!

Oh Kathleen you made my day. (I'm so sorry if I spelt your name wrong), you are like music to my ears -- I was stage 2A, and I had both a little bit of chemo and radiation -- however it was not the normal protocol for Hodgkin’s, I was an experiment so to speak. I was treated at Loyola University in Chicago. So about 6 months post treatment, with a routine CT I had been told that I no longer had a thyroid gland and I also was put on meds -- however they also said that my cancer was back -- so then they suggested a bone marrow transplant -- so naturally I did that -- I was unable to live at home during the time due to risk of infection -- so my mother and myself moved to Chicago for 4 months -- it was through the Thanksgiving and Christmas months so it made it really hard. All my friends left me -- my loving boyfriend of 5 yrs was with me through it all and still is here. As for the acid reflux I am just now experiencing that and I hate it -- it seems that nothing helps it -- my poor stomach. What other symptoms do you have -- or have noticed -- are you still real tired -- it's only been three yrs since the transplant, and they told me it would be 5 yrs till I felt better? -- Do you still go for CT? Thank you so much for writing back -- I hope that I don't annoy you cause I’m sure I’ll bombard you with tons of questions -- oh yea -- were you able to have children -- if you don’t mind my asking? Well that’s all for now -- thank you so much -- it feels so good to hear your words.
Love, Cate

Hi Cate
I'm glad you received my reply. First let me start by telling you that you can e-mail me anytime and I won't think you are a nuisance. When the internet became so prevelant I used the message boards to help me find some very valuable information that I hadn't even gotten from some doctors. I don't know how long I would have lived with the acid reflux if someone hadn't told me that they found out they had Barrets Esophagus from the radiation treatment. I went many years just dealing with it and it probably wouldn't have progressed to the point it has if I would have known it could have caused this damage.
In answer to your other question about children, I have the best 4 and a half year old son a mother could ever ask for. I wasn't sure if I would have problems getting pregnant but as soon as I decided I wanted to have a child it happened very quickly. I am extremely blessed and I am sure it will not be a problem for you either.
If there is one thing cancer has taught me it is to always be positive in all aspects of my life. I love the phrase "don't sweat the small stuff" and I try to live by that. Life is precious and we shouldn't waste time with negativity in it. I am really sorry to hear that some of your friends left you. I know how important it is to have a good support system at that time. I found that it changed who I was for a short time while I was going through my treatment. I was moody and angry at some times and took alot of my anger out at the boyfriend I had at the time but he was great to me and very understanding as was my family and friends. I would look at that as a positive though because it enabled you to see who your real friends are.
I am so happy to hear that you are cancer free. I can tell that you have been through a lot. I have not had a CT Scan since my 8th year of remission but I continue to have chest x-rays every couple of years (I can't say I am sad about that drinking that Barium was the worst.) I still go to an oncologist once a year for routine follow ups and do some tests (mammogram, endoscopy, blood work, ekgs) but everything besides the Barretts has been good and I am hitting 15 years of remmission this June. I hope that you are at least seeing your oncologist once a year. That is very important.
Please don't hesitate to ask me any questions you have. I was so glad to find someone to help me during some very confusing times I would love to repay that kindness to someone else.
Take care of yourself and I look forward to hearing from you again!
Kathleen