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just wanted to talk about it

markwwxiii's picture
markwwxiii
Posts: 7
Joined: Mar 2009

I was diagnosed with stage 4 Hodgkins lymphoma when I was 11 and am now 23 and have been in remission for about 10 years. I feel that I handled the experience fairly well when I was younger but within the last year or so its been kind of hard to deal with for some reason. I cant really explain it but I have been feeling depressed about the whole experience, I think I might of needed to talk about it with people the had the same experience as me. I just joined this sight like 10 min ago and hope to be able to hear for some of you and well i guess well see how this works, thanks.

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hey Mark,
Congrats on your 10 year remission and many more to come. Right? My name is Don and I was dx with stage 4 follicular nhl in Jan. 08, then went through treatment in May and June and have been in remission since August. I was very happy and thankful to God that such a great thing had been done for me. I wanted to shout and share my experience with anyone that wanted to listen or talk about it. I hope that you can find peace in your quest. Live life for what it is, not what it was.
Be strong and positive

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi Mark, Just wanted to extend my congratulations on your survivorship, I like to refer to it as survivorship rather than remission, just a personal more positive way of thinking. To me remission insinuates that it will come back at some point and it doesn't have to, cancer is curable today for many people including me. I am a 20 year NHL survivor and the docs considered me CURED several years back. Like Donald said here in his post 'live life for what it is, not what it was'. Positivity and moving forward is a huge part of getting over the cancer experiences you had. Prayer is extremely important as well but, just to reasssure you, it is definitely normal to rethink events down the road for sure - it's not just you. Heck you went through a very traumatic experience with getting the diagnosis and all through treatments - a real life change - no way you will ever forget it completely, memories will come back now and again.

As far as finding it depressing so long after diagnosis that's pretty common for most of us. Something will occur in our lives, at certain points, and subliminally even may remind us of our battle with cancer and that may send us into a negative pattern, that's normal, the danger comes when we stay in that negative thinking pattern for too long. If that happens and our lives are interrupted by this for too long then it's a really good idea to seek a bit of counselling - grief counselling is fabulous to help us move on - but a good family doctor or pastor who we trust can help us through as well.

I think you are just stuck for the moment, by the sounds of it, I have been there many times and actually I find that even though I don't consciously think about it I often find myself down about it all and reminiscing about the treatments etc at the same time of year that it occurred, I mean since the diagnosis and treatments were in the Fall I can get depressed even yet at the start of the Fall seasons. It doesn't happen that often, time does heal, now but every now and again something will remind me and my thoughts start to go a bit dark but it passes.

This site is so great because you will find that, like this topic you raised, you will find you aren't alone - many of us go through the same things. That can be very validating and comforting. Talking about our feelings and emotions in it all is very theraputic and very healing so you are doing the right thing by wanting to talk it out.

Welcome to the site Mark and if you want to join us in the chatroom here sometime, you are more than welcome too. Blessings, Blueroses.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Mark. Welcome to the boards. I found myself here 4 years after I had finished my cancer treatments. I had difuse large B-Cell lymphoma. It seems that most of us are left with unanswered questions. And we quickly find that there is a big difference between talking to someone that has had cancer and those that have not. Some thoughts or side effects will always be with us and its nice to know we are not alone. Trying to forget that we had cancer is not really possible. Medical forms, insurance forms or from a young age wanting to have children later bring the topic right back from where we have tried to bury it. Even our children need the family history of cancer for medical forms. So even with a perfect recovery and no medical side effects cancer will always be a part of our lives. To those like me that are now in remission, cancer free or in survivorship as Blueroses says enjoy the value of each day we have been given. Blessings Slickwilly

mcarva
Posts: 17
Joined: Oct 2008

First of all congratulations Mark on 10 cancer free years. I am 50 years old and was diagnosed with Hodgkins, Stage 2A, in May of 2007. Currently 1 1/2 years in remission. When I was going through treatments, I was so focused on getting through everything and beating this disease and I felt my emotional state was very strong. Now things seem to be "falling apart." On a daily basis, I have fears that it is going to come back, that it is going to turn into a different type of lymphoma, that something else is going to show up on my scan, etc. I wonder what happened to that strong, determined and positive woman of a year and a half ago that was so determined to beat it and have it become ancient history. This is my first post to this discussion board and although we are at different ages (my son is just about your age) and lengths of remission, I feel we are having a somewhat similar experience. I wish I could offer you some advice but it seems like I am in need of the same advice as you are. I feel very down also and want to put it behind me. Maybe it's because I am still "new" to this, I don't know. I am here for you anytime you want to talk and as I search for answers, I will be more than happy to pass any information on to you. Life with cancer is hard, sometimes I think survivorship is even harder!
Mary Ann

MichelleHenry's picture
MichelleHenry
Posts: 11
Joined: May 2009

I agree! I just had my 3 month check up and I think when you are going through treatment you are so very sick and into what's going on, you don't think about anything else. You already have cancer, why would you worry about getting it? I have tried, myself, to figure out why the heck it's so hard to move on and just can't find an answer. I thought it was the weirdest thing while I was going through treatment and saw that there were support groups for survirors, now I need one! :)

I think this is something that all cancer survivors go through though.

I was told one day from my social worker at the cancer center, "why are you worried about all these stats when you can't do anything about them anyways?" I agree and have not worried much about getting cancer again since, but have had a hard time trying to get back to normal speed. Doing normal chores, being just "normal".

Any advice from anyone? When does this fatigue go away? When can I run and play with my 4 and 9 year olds?

Don't get me wrong! I am glad to be alive and be able to spend the time with them that I do, just wish I could do more.

vicken
Posts: 12
Joined: Mar 2008

Congratulations on your 10 year survivorship. Let me encourage you to keep coming to this site. I think you will find it very uplifting. My husband was diagnosed in March of 2007 with NHL Stage 4. We met with his oncologist today for the results of his latest PET scan and the news was very good. He has been cancer free for almost two years now and they say that that diminishes his risk factor somewhat. Evidently it goes down each year that he remains cancer free. Like Blueroses, I am trying to find words other than "remission" to describe his current status. Words have power.

I cannot imagine what it must have been like for an 11 year-old to receive such a diagnosis and go through treatment, and that may be why the emotions are now catching up with you, so to speak. The enormity of the situation may just now be completly sinking in, so be gentle and forgiving with yourself. This site has helped me a great deal during low moments, and believe me, caregivers and family members go through the devestation of this disease along with their loved one. The regulars at this site always have words of encouragment and compassion, and they have experienced what you have experienced first-hand. May God bless you!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am a 20 year survivor of NHL and I welcome you to the site. You won't believe this but I just finished answering another person's post who was having the same issues you are having with delayed reaction to the diagnosis and treatments. The time difference between you and her are different but that doesn't matter because this is pretty common. Sometimes the reaction is delayed and it also depends on whether you have experienced any side effects from the treatments like ongoing fatigue or anything else that may be slowing you down as well. You are right though, could be that you stuffed your emotions in the beginning and it is only catching up with you now, I have heard that as well. It's all about survival though, again natural, in the beginning after diagnosis we put all our energies into focusing on survival and then getting back into the swing of our lives and all of a sudden wake up and it's years later and then it all hits us.

As I mentioned to the other person who was experiencing this delayed reaction to diagnosis and treatment it can be normal but if this feeling down and worried starts to interfere with your life then you might want to consider counselling with a good psychologist, minister, or grief counsellor. You don't want to get stuck in any stage of the grieving your health process, for too long.

I went through this as well and check in now and again with my psychologist to make sure I am still 'firing on all pistons', lol.

Congratulations on your 10 years survivorship, celebrate that if you possibly can. Do let us know how you are doing, we understand what you are going through. Blessings, Blueroses

markwwxiii's picture
markwwxiii
Posts: 7
Joined: Mar 2009

I just want to say thank you for what everyone has had to say, it feels really good to read all the words of encouragement from everyone so thank you!!

judyy
Posts: 19
Joined: Jun 2009

Hi Mark,

So How are you doing? You first posted in march. Are you feeling less stressed? I hope so . I just joined myself and just today saw your post.
Congratulations on your 10 years. That is so great. I am sure it is your time in life that has brought all this up. The Lymphoma society does have people you can talk to . Just call them they will be so happy to help you. I send all my prayers and blessings to you. For your long and wonderful life. Like mary Ann said remimsion seems so much harder. I don't know why.

Take care of yourself
Judy

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Hi there,

I just wanted to add that I still have times of feeling a bit down 20 years after my last treatment. It is a powerful life altering experience when we go through cancer treatment. Hang in there. It is going to be fine!

Cheers, Lance

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