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"In life, things happen around us, things happen to us but the only thing that truly matters is what happens within us." (Anonymous)

Monday, June 21, 2010

Tips for Relapsers - From a Two-Time Hodgkin's Lymphoma Survivor

When I first fought Hodgkin's Lymphoma (aka Hodgkin's Disease)  five years ago, everything happened so quickly. Before I knew it, I was receiving chemo and then it was six months later and I had completed the treatment. Three short months after my remission declaration, I relapsed to what many deem to be the easy cancer.   I understood Hodgkin's Lymphoma to have such a high cure rate, but I fell into the group of relapsed and refractory Hodgkin's Lymphoma.  Many are unaware that in some cases Hodgkin's Lymphoma can be a challenge to treat and cure.

A couple of years ago, I wrote some tips/suggestions for an acquaintance of mine who relapsed from Hodgkin's Lymphoma.  It was suggested that I share these tips on my blog in hopes that they may help someone else.  Mind you, I am not a medical practitioner, but because of my real-world experience as a cancer patient and cancer survivor, I am sharing these tips with my readers.

Tips/Suggestions:


1. Consult a top medical team at a cancer center so that you can take advantage of their full services. It's important that you have all the medical resources all in one place (oncologist, radiologist, nutritionist, sociologist, psychologist, therapist, support groups, etc.) so that you are more apt to use them. If you feel you need to change oncologist and get second and third opinions, don't fret ....do it. If this is a relapse, I suggest you also see a therapist for support. They can guide you and provide you with emotional support and advice.  (How To Find a Good Doctor If You Have Cancer)

2. My main thing is stress - Minimize it. Stress is a big factor in aggravating certain diseases. Think about what your life was prior to the relapse. Is there something you can change that causes you stress? Is there a toxic person in your life making things worse for you? When you're ill, you need to surround yourself with those who are supporting you and putting your health first. Think about this one and make changes accordingly because as serious as cancer is, a relapse is even more serious. When you are stressed, you lower your immune system which make you susceptible to illnesses, so try to let go of emotional baggage and negative thoughts as much as you can. Consult a therapist, a trusted friend, pastor, group, etc. for support. (How to Manage Stress)

3. I suggest you find books or CDs on positive thinking, guided visualization, mediation, yoga, exercise, health, nutrition, emotional health, etc. Oncologists know how to kill the cancer, but they don't always know how to treat the human behind the cancer. Arm yourself with all the knowledge you can, not just cancer knowledge but overall health, body and mind knowledge and play an active role in your treatment and recovery by doing your research and doing what you can from your end to beat cancer. You need to muster up all the strength and will to fight cancer. This is something doctors cannot do for you. It's up to you. You need to draw deep from inside and find your inner strength through guided visualization and positive affirmations. Don't give up on yourself and don't leave it all up to your doctor. Find that will!

Below are some books I personally recommend:

* Love, Medicine & Miracles by Bernie S. Siegel
* Getting Well Again by O. Carl Simonton, M.D.
* Heal Your Body by Louise L. Hay
* Fighting Cancer From Within by Martin L. Rossman, M.D.
* Guided Imagery for Self-Healing by Martin L. Rossman, M.D.
* What to Eat if You Have Cancer by Daniella Chace

4. Have a pro-active, action-oriented caring family member or trustworthy friend go to every appointment of yours and any hospital stay you may have. Don't do this alone. When you are weak and vulnerable, you need someone to be your advocate to take care of you and ensure you are getting the right treatment, to ask questions when you cannot and take notes.

5. Keeping hydrated is so important - drink you water! In addition, eating right, exercising and resting is also important, especially when you're fighting the cancer battle. If you're on a junk food or sugar diet, consider seeing a nutritionist with your doctor's approval. Ask a nutritionist or physical therapist for support and advice -- ensure your doctor knows that you are on an exercise/diet program.  (Read About Diet During Cancer)

6. Slow down a bit whether it is work or other responsibilities that wear you down and seek help from supportive friends or a caring cancer support group. Don't let anyone pressure you to return to your normal life because the "old" normal does not exist.  You need to find a new normal way of life consisting of putting your needs first. If you can take time off from work, do it. Some cancer patients can work part time and others prefer time off.  Make a choice that is best for you.  (Find Cancer Support Groups)

7. I strongly recommend online grocery shopping. Every week, they deliver all my groceries and bottled water. Rather than ask a family or friend to do your shopping for you and wait until they can fit it into their schedule, save your sanity and consider online grocery shopping. Delivery is less than $10.00 and they bring the groceries to your kitchen.

In short, this is the time for YOU to work on getting well and very importantly, stay positive, but also allow yourself to cry when you need to. Take it one day at a time, remember you come first. Gather strength from all those who love you, but also remember love yourself, first and foremost. A relapse is  very serious and you need to arm yourself with support, a great medical team and lots of strength. I am now in remission and in spite of fighting two battles with Hodgkin's Lymphoma, I feel strong and positive. I put myself first and made major changes in my lifestyle. It's still not easy, but you learn to make adjustments and find a "new" normal way of life.

~Ann
Hope & Dreams Cancer Awareness Shop

Disclaimer:  I'm not a medical doctor.  These tips are offered by a two-time cancer survivor.  For medical advice, please consult your medical practitioner.

From Our Sister Blog: Raising Hodgkin's Lymphoma Awareness Because It Matters

For over two years, we as a family, witnessed what our sister endured battling an advanced form of Hodgkin’s Lymphoma (aka Hodgkin’s Disease). The unexpected journey started in the spring of 2005 when our sister was diagnosed with this rare but deemed curable cancer during a routine check-up for flu-like symptoms. After our sister’s diagnosis, many in the medical field as well as cancer patients commented that Hodgkin’s Lymphoma was the “good” cancer to get if you had to choose a cancer.

Unfortunately, it was not the “good cancer” and the road to remission was a bumpy one to say the least. It took a rare syngeneic stem cell transplant and almost two years of back-to-back high dose chemotherapy treatment and radiation therapy to bring our sister into remission status. As a family, we experienced this two-year challenging journey right along our sister. This sobering experience inspired us to do something tangible in our sister’s honor and in honor of other cancer warriors and survivors to help promote worldwide awareness for Hodgkin’s Lymphoma, a cancer wrongly deemed the “good cancer”.

We launched Hope & Dreams Cancer Awareness T-Shirt Shop in 2006 to raise awareness and support for Hodgkin’s Lymphoma and General Lymphoma/Non-Hodgkin’s Lymphomas. The store first opened with an assortment of Lymphoma awareness t-shirt designs (Hodgkin’s and Non-Hodgkin’s) and later expanded to other cancer awareness merchandise.

Today, our sister is in remission and working on recovering from the harsh treatments. We are grateful to God that she has been given a second opportunity to fulfill her hopes and dreams — cancer free. Many have asked how our sister got through two years of back-to-back cancer treatment for aggressive Hodgkin’s Lymphoma, her answer is: determination, hope and most of all faith.