1. Imerman Angels. “Having a mentor from Imerman Angels was so helpful - I met someone who was a survivor of the same kind of cancer that I have and she ended up becoming a very close friend. She also encouraged me to communicate my needs to my family and friends because otherwise they often would not intuit them - she was quite right.”
1. Stupid Cancer. “Stupid Cancer is a cancer support group for young adults - nationwide with a lot of tools and events.”
2. Cancer101. “Check out Cancer101. It was created to help the newly diagnosed manage the impact of the disease and help them navigate through the questions that they have and the resources available.”
3. Facebook. “Facebook is a good start. There are FB online communities that support patients suffering from just about everything. Throughout that community you can ask and find local in-person groups and other resources. NYS has organizations like Parent to Parent that are amazing resources for families. NJ should have non-profit organizations that will help with mental health, peer support, transportation and many other services.”
4. Gilda's Club. “Gilda’s Club is an incredible resource offering free support for cancer patients and their families. All the branches throughout the US operate independently you will have to find one close to you. The NYC branch is very active.”
5.Summer Hope Foundation. “Summer hope does "hope baskets" that are personalized baskets intended to bring joy to people with cancer. They are free and really, really nice.”
6. Friend’s Health Connection. “A non-profit called Friend’s Health Connection is based in NJ and the idea is to connect sick patients with fellow patients who are similar age, ailment, gender etc. who they can relate to since they are both sharing similar experiences.”
7. Unconditional Healing. Unconditional healing is essentially about finding sanity, compassion, and connection during adversity. The tendency during health crises is to isolate and to live in your head, always problem-solving and Catastrophizing. This is the website to the group.
8. Stages of the Cancer Journey: A great overview of the different stages of feelings, family communication and outcomes of the cancer process.
9. Mary’s Place By the Sea It’s a fabulous organization that generously welcomes women with any form of cancer to their gorgeous house in Ocean Grove, NJ (one block from the beach). You can go for a day or up to 2 nights, fed delicious vegan meals, and partake in their many services (massage, reiki, nutritional counseling, meditation, yoga, etc)...all for FREE! Highly recommend to any woman newly diagnosed, currently in treatment, or up to 1 year post treatment as that is their guideline. Special place to spend time to heal: mentally, physically, and spiritually.
Other Resources on Park Slope Parents
1. Resources to talk to a child or teen about cancer
1. Supplements. “I would not recommend any supplements while under treatment unless cleared by your doctors. Find someone who’s an expert at side effects from chemo and radiation. For supplemental support you might try finding a naturopath doctor who specializes in cancer treatment. They would work with your doctors (if the oncology doctors are willing) to support with nutrition, herbs etc. In my experience it is out of pocket but perhaps they could work out a payment plan (or you could gift a couple of sessions?) There are a lot of foods patients can’t tolerate while undergoing chemo so be patient but persistent. This is where an expert comes in because they know what to try and what will not interfere with medication.”
“Decreased appetite is a hallmark of chemotherapy as is weight loss. I recommend voicing concerns about it to the nurses at the infusion center, they should have a dietician on staff that would be able to help and/or be able to help themselves. That being said, protein supplements are wonderful, simple extremely nutritious foods, easy to chew and not overly fragrant are helpful. Ensure is frequently given in the hospital. If decreased appetite continues to be an issue look into/ask your provider about Miranol, it is an appetite stimulant frequently prescribed to Oncology pts. Beef liver pills are amazing as well, they aren’t given in the hospital but can help with anemia.”
“Medical marijuana is supposed to be the most effective treatment for appetite in cancer patients and I believe there are other potential benefits that are probably worth researching. However, I know marijuana is approved as a treatment for leukemia in the state of New Jersey and shouldn't be discounted.”
2. Herbs. “If you want to go in the herbal direction, there is a class of plants called "nourishing" (nettles and red clover are two great ones). They are full of protein and easy on the system. You can make a medicinal strength tea that steeps overnight and you sip them all day instead of water. Here's a link to instructions from a very well-respected herbalist”
3. Nutrition Drinks+. “I'd say yes, anything to get calories. My son lost so much weight early on that the hospital started giving him nutritional drinks until he couldn't stomach them anymore. Think high fat, high nutrient foods like avocados, rice pudding, ice cream, milk shakes, nuts and nut butters, adding butter and cream to foods.”
“I saw a nutritionist for weight gain and was told that the Boost Plus has the highest calories and was told that these are the easier/most painless nutritional drinks to drink because they are not too filling.”
4. Corrine Furnari. “If you can afford to visit Corrine Furnari in the city, I highly recommend her for nutritional information. She will also tell you it's important to supplement with organic milk whey (Warrior Whey) because it helps to keep mass on while also fighting cancer.”
5. Milk. “We learned that milk and lactose-based food can be very bad as milk makes mouth sores that some people get from chemo much worse.”
Miscellaneous Advice and Resources
1.Nancy Keene. “Nancy Keene is an excellent resource for leukemia information, and her book 'Childhood Leukemia: A Guide for Families, Friends, and Caregivers' is particularly helpful in covering pretty much any aspect of the illness and treatment.”
2. American Cancer Society. “There are some interesting resources on the American Cancer Society website.”
3. The Truth About Cancer. “Watch The Truth About Cancer. It's incredibly informative, and chock full of information, and a must watch for anyone thinking about cancer.”
4. Leukemia and Lymphoma Society. “I've watched the Leukemia and Lymphoma Society really grow so I'd start with them. They seem to have a support line too. There is so much that is out of your control as a cancer patient and it’s really hard on young adults who are trying to find their own identity, etc.”
5. Advice. “1. Stay away from the internet. The worst thing my I did was to look there. Now is not the time to look there, there will be time to look and research web but not now! 2. Let someone close deal with the doctor appointments. You need time to digest your diagnosis you don't want to be stressed about the appointments. 3. Let other people in your family help, let them cook and let them clean, they need it and you need it. 4. If you have children let other people help you with them. 5. Talk to someone who went through it to help navigate your feelings and fears. 6. Ask for help 7. Sleep and, if you need to, take pills to help you with your anxiety 8. It is rough...it is rough on everybody in your family. Take a deep breath and then another one and then another one...one at the time."
6. Jeannine Walston. "An interesting article on the stages of cancer. I thought the information surrounding the diagnosis was particularly helpful. I know some of these things rang true for me."