Nodular lymph-predominant Hodgkin's lymphoma in husband

dlrenn

Hi,

My husband was diagnosed with nodular lymph-predominant Hodgkin's lymphoma in November/December 2012, began chemo in Jan 2013, finished then began a round of radiation in March/April until May 2013. He now undergoes Rituxan maintenance treatments every other month and I think has another year left. He is quite a bit older than me, but we have 4 kids, 3 of them 5 and under. I am sharing here because I have been taken aback by people's attitudes at various points in this process. Everyone thinks that now that the cancer is gone, life is back to normal. But my husband hasn't returned to normal. Life is challenging enough raising 4 children on one income when both people are young, energetic and healthy. It's a lot more difficult when both of you are being stretched beyond what you feel you can handle. My husband still doesn't feel "normal" yet. He definitely experiences side effects from the maintenance treatment that leave him feeling severely fatigued and just generally "unwell". I decided to join here for 2 reasons: 1) I just want to be able to come to a place once in a while where people "get it". People just don't get what daily life is like around here. The cancer is gone but the battle isn't yet over; this is a marathon, not a sprint. 2) I believe that there are probably people who could use support and encouragement and I would be happy to offer both to someone in need.

I wonder if someone could maybe explain to me which things on here are public and which are private? I think these discussion boards are public, if I read it correctly, so then which parts are private?

Thank you for reading this.

Grace and peace,

dlrenn

Jeff148

Hi

Thanks for sharing your thoughts. It helps us that are just beginning the journey. I think the forums are public. However, you can message members and I believe those are not open to the public. Not completely sure. 

Max Former Hodgkins Stage 3

Hope this site helps

dlrenn,

Welcome. From what you have stated thus far, it certainly sounds like this forum will be helpful for you, and that you have a lot to offer us who have been here for awhile.

Complete remission is never the end, as you have noted. I have been in CR for about five years now, and it is not the end .  Almost every individual who writes here (it appears to me) still has worry or fears regarding the disease . Many regulars here have relapsed, either into their original cancer, or some other form.  Although lymphoma is one of the most controllable of cancers, we have also had a number of beloved friends who have passed from this life.  So, you are very correct in noting that the end of treatment (with or without maintenance follow-up) is never "the end."

Some individuals sort of waltz through treatment, with few side-effects, and others are smitten with horrible side-effects, some of which can persist for years, if not forever. I fit in the latter crowd.   But I am optimistic and profoundly thankful for recovery.

There are many features at this site, and it is beneficial to "wander around' a bit to research them all.  As Jeff mentioned, you can e-mail any member privately by clicking on their name and then selecting the "Send Message" feature. The exchanges between you and the person you e-mail are private, viewable only by the two of you.  These Board Discussions are in the public domain, and anyone who comes to the site can read them, but only people who register can submit posts. 

max

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jimwins

Welcome

Hi dlrenn and welcome to the site.  The others have pretty much covered items.  The only thing I might add which I suppose is obvious but don't divulge any personal information in your posts as they are public. 

We "get it" . 

Hugs,

Jim