Updated: Jul 30, 2020
Now What? Below is a navigational guide.
Being diagnosed is beyond difficult for most people to understand. Cancer is an equal opportunity illness which affects everyone regardless of status, race, ethnicity, education, etc. Below is a short guide to the many areas of working with a cancer diagnosis. Technology and non-profit organizations abound with ways to make this easier so that you and your family do not have to nagivate alone. They are listed at the end of the blog and I encourage you to look through to see which best suits your needs at this time.
Step One: Organize your support group.
After telling the news of your illness, ask for help for future months in treatment. This is not the time to tough it out and do it all yourself, but an opportunity to pace your energy for the important work ahead. You may be proud of being an independent person who always helped others etc, and this diagnosis may have you feeling strange that you need to ask for help so early on. It matters for the treatment ahead. Become comfortable asking for help for the most important things that need to be done to reduce your stress. Make a list. Give it a creative name. Think on the things you find stressful which can be delegated to others. One of these items that does not go on the list is insurance claims. If fighting with insurance companies over insurance claim denials is expected, ask for help within your oncology facility as there are staff available for that purpose. There are also resources you can ask about regarding prorated services that you may find helpful.
For everything else related to your home, make the list. If a messy house makes you stressed, that is a priority for the list. If having no food in the fridge for meals stresses you out, add that to the list. If you can walk to dog for a few weeks until fatigue sets in, then add that to the list for the next month. Non-essential things or occasionally important things can be a lower priority but still make it on the list. Plan ahead for the next month so the amazing people who are helping you can schedule it in and not feel like its a last-minute ask.
Who makes up your support group?
It can be anyone you are close with, but sometimes people you know in passing are also wanting to help. Welcome all the help you can get. Family, friends and neighbors may all be interested in helping but it could be with different levels of commitment/time available. Your job right now before treatment starts, is to find out what things will need to be done and who is keen to do that. Some people can cook, but hate cleaning, others can clean but dislike laundry, etc. Find out these details, and match your support to the things needing done so it all does not fall upon your main caregiver (who could be anyone like your best friend or a close family member) because these important people also get tired and worn out and can develop a type of burnout called compassion fatigue. They cannot work, manage health care bills and insurance coverage claim denials, clean, cook and drive with you to every appointment for the entire duration of your treatment. It is important for this person to save energy for the highly important role of emotional support for you. Think of them as the team lead in your support group - they walk beside you in each step of this illness, but they also advocate for you and delegate to others what needs to be done.
Tip: The larger the job, the more the number of people are needed. These can also be set on a schedule when you are away receiving treatment so if fatigue has you exhausted, you don't have to feel like you are in the way, have to stay awake, or are obliged to 'entertain' your support while they are there.
An example of such a care calendar could be to cover off essentials like laundry, cleaning and groceries.
- Monday when someone comes for 4 hours to wash and fold and put away laundry.
- Tuesday where a team of support cleans the house so it is not a marathon for one person.
- Wednesday where grocery shopping is done based on a menu you have created with your clinical support team and family.
- A caregiver day off
- A driver for appointments so the caregiver can keep working to pay bills etc.
A note about food: Pre-made meals are welcome when your taste buds are functioning early on, but some types of treatment affect how you can tolerate spices and temperature. People will have great intentions and want to bring 'comfort' foods which taste great indeed when taste buds function normally, but the downside is they may be causing more inflammation which drives cancer growth. Have a group of anti-inflammatory foods and recipes handy from a cookbook or your own resources to help everyone be successful on giving and making food for you. Google anti-inflammatory recipes and cookbooks ahead of time for these wonderful people who love to cook and want to make something.
Step Two: Your New Routine
Create a self care routine for your ongoing rejuvenation. This means a routine that will help you thrive through treatment and beyond. This can include but is not limited to the list below:
1. a daily schedule or a weekly schedule for sleep and napping.
2. mild daily activity like walking daily or daily TaiChi, Yoga, Pilates to fight fatigue.
3. moderate aerobic exercise twice per week (within guidelines as approved by your care team) to fight fatigue.
4. positive social interaction with a support group, family or friends that is not cancer-focused.
6. time for fun and laughter and joy.
7. support group that is cancer focused AND meets your needs.
The above are all important and have evidence to support their use in combating cancer. If some sound unfamiliar, investigate and keep an open mind.
Step 3: Get Qualified Oncology Supportive Care
This is about getting care to run intervention to your side effects WITHOUT detracting from the effect of your conventional treatment plan. There are many who offer treatment instead of conventional care and I highly discourage this. It is important to understand the education, experience and credentials from whom you are receiving supportive care. Find someone who works in Oncology over 90% of the time, and is not a general practitioner. Find someone who belongs to an approved accredited association and has education at post graduate institution that is NOT online. Oncology care cannot be learned in a weekend online course. The most highly trained integrative care providers are usually board certified by an association representing that certification. The earlier you can find this professional the sooner they can implement options to keep you and your treatment plan optimal.
Step 4: Begin your treatment You are ready for your treatment! You may have completed the steps above, though maybe in a different order. That works too! Maybe you already started treatment - its completely fine - start working on the things you can immediately put in place and build the other things in as you go. With these in place, you can step up to the start line of your marathon fight against cancer.