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- Talk to people who are helpful to you.
This is your journey and it is important that you get through it in the way that is best for you. For some of you, that may be someone who encourages you to be positive. For others it may be someone who just listens so that you can work things out yourself, they may be someone who sympathizes, they may be someone who has been through this before and can empathize. A word of caution though, you are different from your friend and what was right for her may not always be the best for you. It is important that you make your own decisions with your medical team, feel confident about your decision, believe in its success and embrace it fully. In life there are also people who, though well meaning, drain all the energy out of you. It is OK to tell people (or have someone else tell them) that you are too tired for visitors.
- Keep notes of all your questions, doctor’s meetings, test results, treatment options, medications taken etc.
Having them in one notebook really helps. In addition, I bought a three ring binder and filled it with transparent page protectors into which I put all my MRI, CT scan, bone scan, biopsy and pathology reports as well as my blood test results.
- Take a voice recorder (small tape voice recorder or buy a voice recorder attachment for an ipod) to your doctor’s appointments.
Most doctors won’t mind and it really helps ease the stress of having to remember all the details and make accurate notes as well as listen.
- Prepare a list of questions before your doctor’s appointment.
See the following links for suggestions of questions you may want to ask prior to surgery, chemotherapy and radiation.
- Write a journal.
It helps to relieve stress, anxiety and frustration.
- If possible, take a friend or family member with you to key appointments.
A helper/advocate is so important when given a diagnosis like this. You may feel overwhelmed and having another mind and pair of ears really helps. They can also help to take notes and drive when you are not able.
- Agree with your individual physicians as to when you should call them.
In other words, what symptoms should trigger you to call and what is their preferred method of contact, e.g. phone call to hospital switchboard or their cell phone, email etc. Find out how rapidly calls are returned i.e. within the hour, by the end of the day. You may also want to check under what circumstances they would want you to go straight to urgent care etc. Whenever something is of concern to you, do not delay in reporting it or seeking help.
- This is a time to do things at are nurturing to you.
Things I found extremely helpful were prayer, meditation, guided imagery and breathing exercises to reduce stress (I used a stress relief CD but there are also classes you can attend), writing a journal, lighting aromatherapy candles and curling up in my favorite places in the house either by the fire or looking out on my garden, being outside and appreciating nature, having my hands and feet massaged, listening to music.
- As part of your support you might consider contacting organizations with facilitate one-one-one face to face, group, phone or online support programs.
For example, the American Cancer Society’s “Reach to Recovery” program, Breastcancer.org’s community discussion boards, Cancer Survivors Network, Cancer Hope Network, or The Wellness Community.
- Beware well meaning but inaccurate advice!
I received from well-meaning friends a number of forwarded emails which purported to be from learned medical institutions. Usually one look at the language used was enough to convince me that these were phony. On reading them I realized that they usually contained a grain of truth but the rest was completely fabricated. Please don’t forward articles unless you know what they contain is the truth and if you receive them please check their content with your oncologist/physician before making changes based on what you read. The problem with this mis-information is two-fold 1) it causes fear and adoption of life-style changes which may be of no benefit and 2) causes guilt about totally irrelevant prior behaviors which had no bearing on why cancer developed.
- Do talk to your physician/oncologist about diet and life-style changes that will be beneficial to your health.
- BE CAREFUL, especially driving.
Try not to let your mind wander when doing important things like driving, it can be very dangerous for you and anyone else on the road. This is a very distracting time, ask for help if you need it.
- Let others know what you need.
It is OK to ask for the kind of help that is most helpful for you. For some people this may be having people drop off dinner, doing your housework or laundry, taking kids to school, picking up kids after school and keeping them for a couple of hours for a play date, picking up groceries or medicine, driving you to appointments, or just listening when you want to talk. Let people know that because chemotherapy damages your immune system you need to limit your exposure to people and anyone with even a sniffle should stay away.