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!

My 8 yr old son is a cancer survivor. I assume you have similar feelings. The shower is where I cry. You have everyright to feel what ever you are feeling. No one can tell you how you should feel. Most cancer centers have support groups for caregivers.

R.,

I will pray for you and your family. Mostly another miracle for your hubby. You are welcome to call me and cry on my shoulder any time. ###-###-#### I live in Corona California, if you are anywhere near me we can get together. Please don't hesitate to call me when you need me. We as moms all love you. J.

R.,

I'm sorry for what you are going through. You may already be familiar with this website, but if not, check it out, it looks to have lots of helpful information. I wish I could be of more help.

http://www.lls.org/hm_lls

M.

Hi there I am a cancer survivor 1 1/2 year. Your comment about three wonderful kids and a great husband and you love God and everyone in your life. Love is the healer. I believe you can get through this by daily praying and asking your creator to reverse the problem make the mass shrink your husband was afraid he should of responded immediately; but with the stresses of everyday life he put it off. Your role is to create a healthy environment, food, comfort, soft music, praises to him and shield with love and teach your children not to be afraid. The medicine and treatment will pull him through. You said you have two home businesses so financially you may not suffer too much. But emotionaly be strong because strength is power and your words must be positive and full of expectancy for the future, to believe your partner will be by your side with a smile and to raise and enjoy raising your beautiful children. God Bless L. Burrola from Perris, CA Lots of
prayer and love sent to your family.

Hi R.!!!

Big hugs to you. This can't be easy for either of you and with 3 small children I can only imagine your worries of how you will provide for them if he doesn't make it through. Lean on your God and know that He will provide in all manners.
In the meantime, you might want to google the name Harry Hoxsey. He actually created a cure for cancer, but was banned in the US because he would not sell the cure to the AMA. I don't know if it will work for your hubby's certain strain, but it's at least worth a look. If you are interested, I do know where to get the herb so feel free to contact me.

Yikes! I have no experience with what you are going through, but I just wanted to say "Vent away". Have you tried asking your hubby's doctors/hospital if they have support groups for families? Maybe there is one close to you through meetup.com? Or maybe a grief support or caregivers support group through a local church? I know that we have both types of support groups through my church, Rancho Bernardo Community Presbyterian. (www.rbcpc.org)

My heart goes out to you and your family.

Over the past few months I have learned about 2 close family friends who have had relapses in their cancer. One of them after 6 years of being cancer free and the other after 2 years of being cancer free. And my best friends MIL has Non Hodgkins Lymphoma and is on chemo treatment #3 this week.

Praying that if this is a relapse for your hubby that they are able to treat him and that he is able to fight it off once again. Praying also for God to give you and your children strength and endurance through all of this.

Hi R.,
I am so sorry to hear what you are going through. I can't even imagine how scared you must be. Do you have a church you attend that you can share? Or even a pastor that you can talk to? Many churches have support groups, etc. that will also help to encourage you and give you a safe place to share your fears. I am sure that there are also a multitude of groups that you can find on-line if you do a Google search. My prayers are with you.

What about a support network through the hospital or clinic that has treated him? I'll be praying for you, your husband and children.

R.,

I am so sorry to hear of your husbands second scare!! Cancer is such a terrible disease!! I lost my mom a little over a year ago to Ovarian Cancer and the only thing that got me through that time was the help from a great group. If you live in the Pasadena, CA area...through Huntington Memorial Hospital ...there is a non-profit organization called The Wellness Community. They help families and loved ones in all aspects through this difficult time. If you don't live in this area, I would suspect that any large hospital in your area would have somewhat of the same kind of support system...just give them a call.

Hope this helps....take care and my thoughts are with you and your family!

C. C.

I will be praying for you, your family, and that you find the perfect support group that you need. Take care.

Hi! R. my blessing and prayers are with you! I hope the best for you. I live in Monrovia,CA if your near me I would like to help you out. Maybe watching your kids for an hour or so so you can relax or at least spend time with hubby alone. Also try the hodgkins association maybe they can suggest a support group you can join so your not so stressed and you can support your husband with an open mind:) Good luck:) e-mail me ____@____.com or look me up on facebook:) Let me know how your doing time to time ok:)
yours truly,
D.:)

Hi R. I am an oncology nurse in San Diego Ca I was about to delete this email but decided to read it. You touched my heart and I would love to chat with you not sure what to do next but pls contact me at ____@____.com. Thanks T.

God Bless you and your family. You are in my prayers. You will all get through this. Stay vigilant and know that God will give you the strength. Be sure to ask people around you for help. Don't try to do everything yourself - it is OK to ask. Have someone to come by and watch the kids while you take a few minutes for yourself to renew yourself.

I am so sorry. Big hugs going your way. (((()))) God will get you through this. I know it is hard, but try to lean on your faith. I have never been throught the same thing, but is it not okay to cry in front of your children? Can you just tell them mommy is sad? Sorry if that is not the right thing to tell you, but I would think they could support you and give you big hugs that will make you feel better, at least for a bit. You should not have to bottle up, you are going through alot. You are a strong woman and you will pull through. : ) Try to deal with the now and not the what if's, hope that makes sense. I wish you the best. God Bless you and your family.

This is a time where you should reach out to friends and family for help. Even if they can only drop off a dinner. Let them know EXACTLY wht you need help. If they can only give you an hour of watching the kids, drive up to starbucks and have a drink while you sit in your car listeninng to music. You can only be as strong for your family as you are strong for yourself. I hope thi helps. I will keep you in my thoughts and prayers. The best thing you can do though is to take care of you too.

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