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Newly diagnosed and need support

Britt74
Posts: 2
Joined: Oct 2017

Last Thurday, October 26th I was diagnosed with Follicular Lymphoma. They don't know what stage it is yet. They do know I have enlarged lymph nodes in my neck, both arnpits and groin. Those are the ones they can see. I am getting a port put in on Monday. This type of Lymphoma is not curable but they can at least manage the symptoms with chemo. I was born with Spina Bifida which means I am paralized from the waist down and use a wheelchair. I live with my parents for support. This all started because I have had moderate to bad pain in my hip, ribcage and pelvis for the last several years and my doctor has been trying to find out why. She has sent me to an orthopedist to see  if it was a damaged bone issue, nope. Then to a pain doctor for shots but those didn't work either. Then to a physical therapist but that only made it worse. I have taken Gabepentin for a couple of years and that worked for awhile but in the last three months or so it hasn't done much good. I have a good day or two here and there but thats it. So as a last ditch effort she was going to send me to one more pain specialist so she sent me for a CT scan so the pain specialist would have a better idea what he was dealing with. That's when the enlarged lymphnodes showed up. So the pain doctor went on the back burner and she sent me to an oncologist who just so happened to be her husband. He looked at my scans and said it looked like lymphoma and ordered a biopsy. So as you can tell I have had a lot of doctors appintments recenntly and my mom and dad are both saying they can't handle all of these appointments. They don't want me to pursue the pain relief issue. They say I just need to learn to live with it. That is easy for someone on the outside to say who doesn't have to experiennce it every day. I have always had a high pain tolerance. I'm not a wimp but it wears you down after awhile when you can't get away from it and you don't see an end in sight. I am grateful for life and every day that I have been given. I know it's a gift, but there are some days when I just want to be done. I just want it to all be over. I know it is har on my family to have to take me to so many medical appointments and I feel bad. It's no fun for me either. I have so many emotions about all of this. I go from being at peace, to numb to angry to sobbing. I can't talk to anyone around me about  it because my family wants it to stay private because they don't want people to be constantly asking them about it or me. They say that if I tell people my life will be all about my cancer but it feels like that anyway. Thats why I came here. Here no one knows my family so it is safe. It is too hard to keep it all inside. Thank you for listening to me ramble.

po18guy
Posts: 1009
Joined: Nov 2011

First of all, as you know, fNHL is a chronic, manageable disease. Very rarely is it ever an emergency. As to stage, do not worry about that, as lymphoma staging is completely different from all other cancers. It is a "liquid" cancer and staging mostly determines treatment strategy.

As to your living situation, it appears that your parents have burned out. You may have to think of extended family of even an assisted living facility. Your need for personalized care has just increased. You might want to contact the social services people at the cancer facility or even your government agency and inquire about a social worker interview to determine what will work for you.

You are clearly a very strong person, and that strength will be a great help to you both now and in the future. I can offer only advice and prayers. 

lindary's picture
lindary
Posts: 658
Joined: Mar 2015

I was told Dec 2014 that I had follicular non-hodgkins lymphoma. The first CT scan also showed I had pluerisy of the right lung and a mass in the abdomen. That qualified me for stage 4. I spent most of 2015 doing chemo. Six rounds of R-Chop, each treatment cycle was 3 weeks. The scans in July showed the lymphoma was not completely gone. So then I did 3 cycles of RICE. Each cycle meant 3 days in the hospital. I am now in remission 2 years. 

Yes it can be hectic but it is doable. I was lucky in that my husband is retired so he was able to take me to many of the appointments when I couldn't drive.I was able to keep working since I am able to work from home or the hospital.

One thing I did was to be honest with my co-workers, family and friends about what was going on. I had set up group in my email address books to make it easier to send out the updates. At first htere were a lot of questions and such but after a month or so it becamse "old news". It was great the first time someone at work greeted my with "hi, how you doing?" and I relaized they weren't asking about my treatment. It was just the normal kind of daily greeting. 

For you it is a little more difficult having some physical limitations. I do have a few friends who have physical issues that cause constant pain. I know it is not easy plus it must be very hard for your parents too. Hopefully our little group here can be an outlet for you. 

Poguy is right in that many cancer centers have resources that will help you get to appointments and treatments. Some area may even have volunteer groups that wil provide transportation and support. This would definitely give your family a break. 

Good luck.

po18guy
Posts: 1009
Joined: Nov 2011

"We're pullin' for ya' We're all in this together"

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Britt,

It may seem as if life is "piling on," but as Po suggested, your form of NHL is definitely controllable, usually for decades.  And much sooner than that, a "cure" that puts the disease in remission forever will probably be found.  

My best friend in elementary school had spinal, and she has lived a pretty normal life. Last I heard, she had been married for decades. She was able to walk, but with difficulty.

I was in effect crushed to death in an auto crash decades ago at the age of 30.  I could not walk for about a year without a walker, and was at home that whole time. My mom kept me, seeming to be fine. Then one day she just had a total meltdown, went hysterical... screaming she could not bear it any more.  It seems the doctors had warned her that I could have a lung recollapse, which would require fast EMS response to save me. (I had been in respriatory arrest at the wreck scene, and then went into respriatory arrest again a week later while in ICU from recollapse).  She had been afraid of finding me dead in my sleep the whole time.    I couldn't even speak more than a few words at a time for nearly a year.  The doctors had told her I most likely had significant organic brain damage from low oxygen over prolonged periods.   Advanced Hodgkins and Stage II prostate cancers later, I now feel better than I have in at least ten years.  Despite lung fibrosis and asthma, I also breath better now than I can remember.

There is no telling what your parents are thinking at the moment.  The suggestions Po gave are as good as any that I am aware of.  You do have new friends here now,

max

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Welcome to the group. I hope you will find the help and support you need. I am so sorry you are experiencing so much pain! I know that must be draining to deal with. 

You have just been diagnosed with cancer and that is always a shock. Do you even have a hematology oncologist yet? He or she can definately help you sort things out. And I agree that you should contact a social worker. My local cancer center (and I do not live in a major city) has social workers and nurse navigators to help with finance, transporation, home health care, and more. 

As far as your parents not wanting you to tell anyone about your lymhpoma, which is very treatable, I would like to point out it is not their decision to make. You need the support and friendship from family, friends, church members. People want to help--let them. Your parents need the help and respite too. 

Please keep in touch and keep us posted?

Hugs,

Rocquie

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Hi Britt74,

   I can approach this from a different side.  I have a daughter who is a paraplegic and confined to a wheelchair due to Spina Bifida.  From the time of her diagnosis 16 weeks gestational, our lives changed.  We did our research and to the best of our ability gained a clearer picture of what the future was likely to be for our family as a whole.  Yes, we spent the next 3 years at numerous appointments and surgery waiting rooms, not to mention my husband was deploying to the middle east during all of this.  My daughter is now 27, and although some of the appointments have slowed down, I know that the health of my children will always be precious to me.  Only those who suffer from SB understand the the gravity of the diasability (catheterizing yourself to save your kidneys, incontinenece both bowel and bladder for many, shunt malfunctions, spinal fusion surgery, the numerous orthopedic surgeries, and list just goes on). 

   I know it just doesn't seem fair to be hit with yet another medical issue, but you my friend have concquered things that not just anyone could.  You are better equipped than most to leave Lymphoma in the dust.  When my daughter is feeling overwhelmed we remind her of how much she has managed to overcome.  Try to reflect on your accomplishments, and know that you will BEAT this! 

As others have responded already, as much as you look to your parents for support, it may be time to seek a different source of strength.  You will need to have positive structure around you, so reach out to either social services or your local Voc Rehab office.  They will surely point you in the right direction.  They should even be able to get you set up with handicapped accessible transportation to go to your appointments, so if you choose to stay with those you love you can stiil get to those appointments without undue stress for anyone-yourself included.  

Healing Prayers and Blessings for you and your family.

God Bless

 

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