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Patients Against Lymphoma

 

Support > Patient-to-Patient > Patient Experiences & Guidance

Living with the "Beast"  ~ Patients helping Patients

Last update: 07/21/2011

I was diagnosed with stage 4A Follicular in Feb. past. I've been doing OK since then, but haven't been able to locate anybody else in  the same boat. Family, friends and co-workers had all been great. .

And I would be completely lost without my loving wife,who has helped me make it through more then one rough night. But it's nice to locate others who are more or less in the same situation I am. 

I work in Health Care, so unfortunately I've seen how bad it can get. More then  once I've woke up from nightmares so bad I can't get back to sleep. Then the wheels start spinning, but I'm too groggy to think clearly.  By the time my wife wakes up and figures out what's wrong. 

I'm completely in the rats. But somehow she always helps me make it  through till morning. And I know there are others, who probably don't  have that luxury. In any case I'm still working my regular job, and 
that helps. In addition, over this last year, I've spent a considerable amount of spare time producing a DVD of family pictures that runs from Christmas 2005 all the way to Christmas 2006.

Complete  with music, special effects and commentary. It made a great Christmas Card for all our friends and family, and my ulterior motive : now everybody has a backup copy of myself, my wife, and my daughter enjoying one of our best years ever. But now I'm looking for suggestions on what else I can do to distract myself. 

Nothing too strenuous, but something that helps make the watch and wait more bearable. 

Thanks. 

~ D (nhl-follic)


==
I took up painting classes since my diagnosis--something I enjoyed way back in high school but never made time for. I love the classes and it really takes my mind off more serious matters-- maybe looking back to an earlier time in your life and remembering things that you used to enjoy but let slide would be a good place to look for distractions?

- anjouj (nhl-follic)


==

Fretting is a real downer, and I suspect it isn't good for anyone to do. So looking for diversions is a good idea. Here are some possibilities. 

1. Read. Read for enjoyment or for education. Right now, I'm fascinated by Tolle's The Power of Now. It's a book about a philosophy, or life practice, and it's sort of a compilation of talks responding to questions from would-be practitioners. Spiritual enlightenment is the end product, but the path there involves a lot of practices you can easily begin now, and I've found it helps me become more peaceful when I'm clenching my jaw, etc. I also highly recommend Bryson's A Short History of Nearly Everything. The list is endless. Cancer has helped me rediscover reading.

2. Walk or exercise somehow. Keeping physically active is good, and I get that from my work, but the practice of "doing" exercise is better. Do it with purpose, as in zen-style. When you walk, focus on  walking, your body, the surroundings, etc. See how much you can be aware of at the same time. This is a practice to keep you from thinking. I've started going to spinning (cycling) classes at the Y. You ride to music, with a bunch of other people. It works for me. Hiking is great, but it depends on where you live, I
suppose.

3. Minimize your dwelling on the past or future. Focus on being with your family and friends and making the moments count, enjoying them fully, etc. Many of us have likely done the photo album or family movies DVDs, and that's good, but don't spend too much time on that.

I'll stop here. It may get easier with time. I think about mine daily, but just notice the thought and then let it float away. No more gripping sensations, nausea, panic, etc. Just "it's going to come back, and I'll deal with it then". I know at first that wasn't something I could do. I'd have to play with the fear, run scenarios, consider different possibilities for how it could return, treatment, etc. None of that really matters. It will come back how it does, and you'll play your best hand then. Meanwhile, focus on living fully and save the future for when it arrives.

I have two sons, 10&12 btw, and am married for nearly 20 years.

Mark (CA)
mixed cell follicular NHL stage 4
Dx 4/01 Tx 6/01-1/02 CVP x2, CHOP+Rituxan x8
technically "complete" remission 2/02
autologous peripheral stem cell transplant 6/12/02, CR

==

I was diagnosed with stage 4 follicular NHL in January 99 at the age of 30. The day after diagnosis we found out my wife was pregnant with our first child. Had CVP and was completely clean, bone marrow clear also. Came back in '03 and went through CVP+Rituxan that ended in 10/03. Nothing since.

I used to dwell on it and get angry and sad, but do not any longer. I know have 2 boys and a beautiful wife and focus on living. I cannot control the uncontrollable so I place my life in my God's hands and live. I enjoy things I never did before and I appreciate the small details of life.

In my eyes people younger and older pass away unexpectedly all the time. I am blessed with time to enjoy. Like a good redneck friend always says "you've got to race what you brung to the track". I am just running along with what I was given. I have been given a glimpse of the mortality that I possess and I plan to use it in the positive. Appreciate things and enjoy  the ride.

It is sometimes easy to dwell on the thoughts of NHL and the statistics. My Oncologist was great when he told me I was not a statistic. My course with NHL will not be pre-determined by stats so stop reading them. Best advise ever.

My suggestions, trips, golf, fishing, hiking, etc... Live it up!

~ GD (nhl-follic)

==

Greg, I copied and printed your words to show my husband. They will bring tears to his eyes, I know, because they echo the thoughts I have been  sharing for the last three years. It can be a journey getting to the point  (after diagnosis) where you once again realize that the cup is half full,  not half empty. Some days the cup feels downright overflowing, and odd as  it might seem to someone new to "the beast", I think my fNHL has contributed  to that feeling.

All I can add to everyone else's advice is... stay busy if you can, set a  few short-term goals for yourself, and be open to love and support from  others.

Patti, age 51
dx 2/03

 
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