23 answers

Wife of Hodgkins Lymphoma Survivor - Possible Relapse

Hello,
My husband had Hodgkins Lymphoma when he was 24 years old. He was diagnosed in stage 3B. He underwent chemo and radiation for a year. He went into remission and was fine for about 7 years. In 2003, he came home with a lump in his neck and had surgery. We caught in time but barely. Had we waited, he would have been full-blown again. Well, here we are again. He has a large mass on his tonsil, his liver came back abnormal and a prominence in his hilar was found. Honestly, I don't know what all this really means but he is having a ct scan today. I'm really scared. He has had this mass for 5+ months and never showed me. When he showed me, I got him the next appointment available (2 days later). I guess all I want is someone to talk to. Someone who knows how I'm feeling. Scared and helpless. We have 3 young children and the only time I get to even feel anything is when I'm in the shower (pretty much the only time I am alone!). I need some sort of outlet because I'm going to break down. I work full-time and am on the verge of crying all the time. I guess I just need a helping hand to give me strength. Thanks for reading! R

1 mom found this helpful

What can I do next?

So What Happened?™

You are all so wonderful! Thank you from the bottom of my heart for all your support. Unbelievably, my husband still has the mass, has not had surgery and I am still a wreck. He is scheduled for surgery on November 17th to remove the mass, tonsils, and adenoids. Why is this taking so long??? I don't know. I have fought to get through to him (my husband) but he is putting all of his trust into this ENT. I want to know why his oncologist hasn't been contacted or if his PCP even knows what's going on. Believe me, I've called both but my husband won't let me intervene. I hope I'm wrong but I feel like he's maybe given up. His platelet count was low two weeks ago and now he has a cough. I feel like I've aged 10 years. Hugs to you all!! And, again, thank you!!

More Answers

You are in my prayers. It's so hard to keep it in and be strong for him and your kids. I hope you find some spiritual support.

I'll also share with you something called the Budwig Diet which has helped a friend achieve remission. You could give it a try as it is easy and can't hurt...you can use yogurt instead of cottage cheese. The key is they must be very well-blended.

http://www.cancertutor.com/Cancer/Budwig.html

I believe in alternative healing and not relying just on chemo or allopathic medicine. Wishing you and your family deep faith and healing.

http://www.scribd.com/doc/14150181/Why-Doctors-Do-Not-Tak...

PJ

2 moms found this helpful

You need some real life support. The clinic should be able to refer you to either a support group OR to a social worker, or both!

One of my best friends is a social worker for Cancer Care Northwest, and 90% of what she does is counsel families. She does individual therapy as well as groups that whooooo boy have a range. From the obvious ones, like the kid's group, to nutrition, integrating alternative medicine, death & dying, sex post op, etc. etc. etc. Some of her clients she's been seeing for over 4 years now. The social workers connected with cancer clinics as well as hospitals work very closely with the doctors & nurses & patients, so they know exactly what's going on and where you're at.

There's so much going on though, at the time of any patient appointment, that the patient's family's mental & emotional well being is usually very very low on the doctor's priority list. There are a TON of resources out there though. If the front desk can't help you, whip out the phone book and start calling hospitals & asking for their social work department. They should be able to point you in the right direction.

1 mom found this helpful

I am so sorry for the situation you are in. The best thing I can recommend is to contact the Gerson Institute in San Diego and get as much info. as you can in regards to their therapy in treating Hodgkins. My brother in law did his own version by juicing twice a day and did kimo and fought the same cancer. It is very rare to have a reoccurance. I have spoken to someone who did this therapy and got cured twice from breast cancer so it really works.
It is curing cancer by organic foods, natural vitamins, etc.
I would give them a call and get some info. Best of luck to you all.
E.

1 mom found this helpful

Hi R.,
My father-in-law has Hodgkins and so does a very good friend of ours. I'm so sorry to hear about your husband. If you google Hodgkins lymphoma support groups, quite a few entries come up, such as this one: http://www.dailystrength.org/c/Hodgkins-Lymphoma/support-...

For sure, check with your husband's doctor for local groups, too. I wish your family much strength, love, courage and peace during this very difficult time.

Hi, R.,

I'm not sure what you've tried to improve/cope with your situation, so I'll just tell you what has helped me and those around me. (I hope that I'm not telling you what you already know or what you've already tried.)

I'm a graduate psychology student who comes from a family of therapists, some of whom specialize in pain management and psychological issues of chronic/severe illness. I don't know where you live. If you tell me which area you live in, I can direct you to various support groups and services. In my area, in and around Culver City (Los Angeles Westide/South Bay), there is the Wellness Community--South Bay Cities and Didi Hirsch Community Mental Health Center. Several hospitals offer support groups and services. Let me know if I can help.

Along with joining a support group, I recommend learning about and practice guided imagery and mindfulness exercises. (I've done this to help myself cope with surgery and some conditions that cannot be cured or fixed with very good results. I plan to use these exercises with my future psychotherapy clients.) I recommend checking out CDs by Belleruth Naperstek, a therapist who runs the Health Journeys website, and Full Catastrophe Living by Jon Kabat-Zinn, PhD. These are great resources (inexpensive and can be done by anyone anywhere) for busy mothers like you (and me).

Good luck,
L. E
____@____.com

Hi R.,
Yes it is in fact scary. My mother caught colin cancer in time and it was all removed, however was considered a high risk and is going through chemo. We had ourselves convinced she would be a low risk and we would just be watched. The news of high risk was a real shock to us.

I find working and keeping busy my savior. If I sit still, I think I will curl in a ball and scream...it won't help. I have two sister capable of helping out with her treatment, however find myself by my mothers side every treatment. It is nearly a chore for me since they don't participate.

When emotions are running hot, I find myself like a mom away from her baby. I often feel comfort when I am with her and lose the anxious feeling.

I have to constantly remind myself that this is the medication which is the cure not the disease, however I somehow often find myself sad that she is going through this. I know there are other cases that are a lot worse, so I try to remind myself this is not such a bad thing.

I work the Susan G Komen race for a cure and find there is a lot of energy there. You will see tears of sorrow and joy. Perhaps you can contact them and find out if you can volunteer. I find it very uplifting. It is not the same as my mothers cancer, but it reminds me there are others who suffer and hurt as well as others who have survived.

Hugs to you R..

Dear R.,
Both of my brothers are currently in remission (from cancer/MS). So- although I cannot imagine the overwhelm you must feel to have your husband be the one, I have had some experience with these helpless feelings and overwhelm. I see that a lot of people suggested a support group and I think that would be a great first step. Can you take a drive by yourself? I found it really helpful to take a drive into nature- and cry and cry and scream and yell. I was so angry about my loss once that I shook an aspen tree until snow fell all over me, but I felt better and I will always love that little tree! Nature will bring you closer to your source and will give you some peace in your heart and allow you to uncork your feelings- so that you can stay healthy. Another thing that my aunt taught me- was no matter how awful your life feels at any one time- just roll yourself out of bed a little early if you can- and say "Thank you God for my life" and spend a little time feeling that. Another thing that helps me is to start going through the alphabet and list things starting with ABC... that you are grateful for. It doesn't have to be profound, just the first thing that comes into your mind. I have been surprised how much that has helped me. In fact thank you for your post- you have reminded me to do these things again.
Don't go it alone- reach out to your friends- let them help you through.
Be strong - you are not alone.
S.

You, your husband, and your children are in my prayers. God bless you abundantly!

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