First thing is that you are not dying any more than every one with or without cancer is dying. I realize that fear is natural. when I was first diagnosed both my wife and I were very scared. I too was stage 4 so we started from similar points. For me that was over 8 years ago and I am still here and still fighting. The key is to decide that you want to live and fight the cancer. If your doctor will not answer your questions then find one that will answer all of your question and take the time you need to understand the answers. You have a right to answers. If you do not have family or friends you can talk to finds some, there may be people here on What Next that can help. You can even write me. We will help you. Know that you are not alone in this journey and that you can fight the necessary fight and you will win. Cancer is not a death sentence it might seem to be. Be positive and you will pre vale. Let me know if you have any questions I can help with.
Hodgkin Disease Questions
Asked by Modern on Tuesday, September 25, 2012
I'm only 18 and I have stage four cancer it's lymphoma so everyone says don't worry it's got a high cure rate but I'm scared my dr told me if i disnt get treatment Ide die soon I got on treatment am doing well but I'm still scared and no one will talk to me about this about what might happen and I'm scared and feel alone any advise for the possibly dying girl?
9 Answers from the Community
It's ok to be scared. It's a package deal and the fear comes with it but right now you're fighting....not dying. I've learned a few things over the course of my treatment:
1. Fear is a perfectly acceptable form of expression
2. Anger is also a perfectly acceptable form of expression
3. Attitude is everything.
You have a better shot at beating this than you do losing to it. That's fact. But you're not going to find anything anywhere that says it's an easy fight. You're not going to find anything anywhere that says Hodgkins Disease....piece of cake. Are there going to be ups and downs through this?? Of course!! I don't know what your course of treatment is but I received chemo (Cisplatin & Etoposide) 5 days a week. My treatments took about 7 hours each day. I then got two weeks off to recover. The first week off was the hardest. That's when I really felt the effects of the chemo. The second week off, I worked when I could. Just when you're starting to feel better they "whack you in the head again" (the words of my Oncologist). My cancer was Stage III. I had a 10 cm mass in my belly (that's about the size of a baseball) and a couple of 4 cm mass's in my chest. Those were about the size of a golf ball. If I didn't go through the treatment, the cancer would have killed me. I wasn't ready to go yet so I made the decision to fight. After that first week of chemo I was ready to throw in the towel but I couldn't. I had to keep fighting. It was a hard fight but in the end...it's a fight I won. I've been in remission for 6 months now. There were days when I would feel sorry for myself. There were days when I'd cry in fear. There were days when I felt completely alone. It was my decision to get out of bed each morning and go to my cancer treatment facility. I was tired of the smell of the place. I was tired of the ACS folks asking me if they could get me anything. I was tired of the nurses asking me the same question over and over again. I was tired of having cancer. But I had to beat it. For myself, for my daughter, for my wife, my family my friends. I had a life to live. It was my life and I wasn't going to let cancer take that from me. I realize that our cancers are different but the end result without treatment is identical. Don't give up. You're life is worth figthing for. Life in general is worth fighting for. You still have college to look forward to and I'm willing to bet in a few years time you're going to come across and 18 year old with Stage IV Hodgkins Disease that is worried about dying and you'll be able to say...."Let me tell you a story"....
Fear is one of the greatest "influencers" for how we live life, even when we are healthy. I am cancer-free from Hodgkin's Lymphoma for almost a year now. Fear is a God-given emotion to help us protect ourselves by taking high risks. Cancer is one of those risks that we have no control over, so naturally fear hits us hard. I know each of us has built-in shields to overcome fear. Hope is one. Over the years, I learned to find hope is to always look at the facts first, then your thoughts and thirdly your emotions. The facts are your truth anchor. We are wired to react emotionally, then defend our emotions with our thoughts and often we push the facts third in our decision making. Focus on the facts first, always.
In our politically and religiously correct world, often times people won't talk about those unspoken emotional struggles because those become awkward conversations. I put my faith in God and as a Christian prayed daily for God not just to heal me, but to give me new life so I can have a purpose. Often fear takes away purpose and others are incapable of addressing your deep inner fears, concerns and struggles.. Find someone, a pastor, minister, counselor, Christian support group or a friend whom you can talk to.
I know you are dealing with the unknown and while there is a high cure rate for Lymphoma, my biggest struggle was the side effects of chemo and those drugs can alter your mind so your emotions get raw. Your faith and hope can overcome fear and God is there with you. Look for him in the details of your daily life and you will be pleasantly surprised.
I was also diagnosed with Hodgkins lymphoma when I was 18 and was re-diagnosed when I was 21. I have been in remission for 19 years and just look at it now like a bad dream. The treatments now are so much better and there are so many resources to go to for information it's amazing (there was no internet when I went through treatment). You will be fine if you decide to be fine, alot of how you feel is mental and keeping a positive attitude will really help. You can do it and then you will be able to look back in a couple of years on this bad dream.
There is nothing wrong with being afraid. One of the the things that cancer does is make us aware of our own mortality, a thought most 18 year olds do not deal with. People who aren't living through cancer want us to have a positive attitude, attitude does count for a lot...but I'm not sure the realize the depth of the fear, depression, anxiety that we feel. Feelings that you need to learn to deal with before the positive attitude can show through. I would strongly urge you to see a psychologist. I was able to talk to one that was also a registered nurse, and she was wonderful. Don't feel bad if it is decided that you need medication to help you along the way. You can probably ask your oncologist or social worker at your cancer center for recommendations.
Yeah - young cancer survivors - you need to talk to other people dealing with what you're dealing with .... As young adults.
Check out stupid cancer.com
And google young cancer survivors....
And try to remember... We are ALL scared.
But I'm working hard to not let that fear rule my life.
I'm also trying to do things that help me LIVE... Like racing bikes and taking my kid out to get filthy by the river.... And so on....
I hope that helps.
It sucks that I had cancer.... But somehow, I feel like it sucks way more that you have cancer at 18.....
And one last thing.... It's totally okay to have a crappy day.... But be careful about who you share your crappy feelings with. As others have said, a lot of people put pressure on us to have a positive attitude all of the time. Guess what? We are still regular people and sometimes we are just pissy! Anyway, that was one of my biggest peeves about noncancer people.....
Ok - that is all I have for the moment.....
I am one more to say, you can beat it. I am a 24 year survivor of Hodgkins, stg 2, the first time, it came back about 6 months after treatment ended, and I beat that down. Had SCC of a tonsil 4 years ago, beat that down.
Keep a positive attitude, you will be ahead of the game.
Let us know if we can help with anything, everyone here is here to help.
You are very lucky to be so young! Your body will respond very well to the chemo. I'm 69 and had lots of cancerous nodes, bulky masses with spleen and bone involvement, so stage 3-4, and I'm 100% cured after 6 rounds. You can do it if I can!!! And at your age, it tends to not come back. As a grandma, I would give this advice to my granddaughter, who is your age: Chemo is not fun, but just plan to take this relatively short time, months really, out of your life and let it be "all about you." No question going through chemo is a humbling experience, but it is also a very spiritually uplifting time as you will be experiencing things that take many years for your peers to learn. Hair can fall out, but it DOES grow back. Drink LOTS of water. Keep a glass by the sink and just chug it every time you go into the bathroom or kitchen. That's SO important. Do everything the docs and nurses say, including taking all the pills they recommend. Constipation is an aggravation, and so are mouth sores. Keep things moving with the stool softeners and laxatives as recommended. You will feel like all you do is take pills, go to the bathroom, and nap, but do it. For mouth sores, get a moldable mouth guard from a sports store and wear it when you sleep or nap. Keep your mouth really clean, and with the guard, there should be little or no problem with the sores. You may have bladder issues, nerve problems with fingertips and toes, but the Vincristine, if you take it, can be reduced and sometimes eliminated after a few rounds and those issues will lessen and almost certainly go away within months after chemo is finished. Just keep reminding yourself, you WILL get better and all the crappy side effects will go away. And at least 1/2 of the time, except for needing naps and having to stay away from crowds, you feel pretty darn good! Make a plan to just get through the rough days one at a time and know that it WILL all go away. Hold that thought. One day at a time. It goes surprisingly fast if you allow yourself to accept each round as just a passage to get through.