“So what do you do when you’re given a cancer diagnosis? After you get over the shock and the air returns to your lungs; after your soul returns to its body and you no longer feel as if you’re floating above watching the scene unfold beneath you, do you feel sad? Yes. Scared? Yes. Confused and paranoid? Yes. Do you feel sorry for yourself? Yes, hell yes! At least for about 3 seconds and then you have a choice: put your head in the sand and wait to die, or hold your head up high, summon the courage that is deep in your soul and show yourself and the world just what you’re made of. You just get on with the business of healing. I chose, and I still choose, to never give up; to fill my heart with the love that is within me for the people and places that hold special meaning; to take control of the new journey I find myself taking and embrace every day.”
It doesn’t matter how you word it. Life as you knew it is over. Nothing will be the same again, not for a very long time, if ever. You have a new life, a new normal and that can be a hard pill to swallow. None of this is news to you, and I’m not trying to scare you, the diagnosis did that already. But what I will do is show you how to go from being overwhelmed to feeling empowered.
First of all, you’re not dying of cancer. You will be living until you take your last breath, and whether you still have decades ahead of you or only a short time make the choice right now to really live your days with love and purpose. Do I believe in miracles? Yes. But I’m also realistic and I know that this thing we call cancer is strong and sometimes relentless. Stronger men and women than I have been beaten by its ugly existence. f I am to survive, if you are to survive then we must fight with everything we have. If you believe the cancer will win then it probably will. I can’t guarantee that any of the strategies I share with you will save your life, but I’m a true believer in the fact that to a certain extent we have control over our destinies and we can create the life and the outcomes we want for ourselves. It all begins with our attitudes.
I’ve taken ownership of my journey and I encourage you to do the same. Modern medicine is only one piece of the pie, albeit a big one. But look around you; remember all those pieces of your life that are now all over the floor? I’m going to show you how each one, and the way in which you now handle it, has a significant role to play in your healing journey. Preparing to heal is very much about organizing the details that have suddenly become important in your life, and let’s face it, life and our commitments and responsibilities don’t stop just because we’re sick, so preparing to heal is about organizing those details as well. Preparing to heal is also about adopting a positive, never give up attitude, using healing strategies and making changes. Follow the steps outlined below and you will begin to feel empowered and more peaceful in your journey through cancer.
Step 1: Don’t be afraid to show your emotions – it just means you have a big heart. So if you need to scream, scream. I you need to cry, cry. If you’re feeling sad and scared that’s OK, its normal and you’re entitled. It’s easy to slip from feeling sad to feeling sorry for yourself and that too is normal and a natural reaction but I beg you not to stay there, its not conducive to healing. It takes effort to snap out of it but its crucial.
When I felt self-pity or negative thoughts creeping into my day I took a quick look at the clock and made mental note of the time. I the allowed myself 5 minutes to acknowledge the feelings, think whatever thoughts I wanted and went through all the “if only” and “what if” conversations in my mind and sometimes out loud as the tears streamed down my face. When those 5 minutes were over I forced myself to put it away, move on and do something else. I always counterbalanced with positive thoughts and reminded myself that it takes more energy to be negative than it does positive and that I only had so much energy and couldn’t afford to waste it on negative thoughts.
I also wrote down my thoughts and feelings. Writing is really cathartic and provides an emotional release.
In The Healing Journal: Taking Control of Your Journey Through Cancer, I’ve included a Journal section specifically for this reason. To provide a place for patients to reflect as they move through their journey. Whether its letters to yourself or others, music or poetry, writing has been shown to reduce stress and bring a sense of peace.
Step 2: Organize your support system and the daily details of your life. These two go hand in hand. Take stock of what has to be done or arranged in your daily life so that you can get on with the business of healing. This is essentially your to do list. Keeping in mind that your health is now your top priority – it has to be – you need to find people to take over the other responsibilities in your life.
If you’re fortunate enough to have a strong support system then much of this can be deferred to them to deal with. I would suggest asking one person to be your lead contact and spokesperson giving others information on a need to know basis.
This person can also be responsible for coordinating the support
services, be it friends bringing meals, or getting you to your
appointments. One really good resource is the Care Calendar. It’s a donor supported web based system for patients and their families to organize help with meals, errands, chores and more. It’s easy to set up and easy to use.
Essentially a ‘leader’ (person responsible for setting it up – this can
be you, your spokesperson or primary caregiver) enters the information
into the calendar and shares it with family and friends who can then
sign up to help where they can. It can also be used to give status updates and upload photos. Other excellent and similar resources are Meal Train and Lotsa HelpingHands. These are definitely worth looking into.
If you don’t have a strong support system with family and friends then you really need to decide a) what can you just eliminate altogether (car pool duties, coaching responsibilities, etc.) and b) who can you call and count on to step in and help out. Don’t be afraid to ask for help. Most people when you tell them that you have cancer will offer to help and most of them mean it. Friends and family want to feel like they’ve helped you so ask for that help, don’t be shy.
Keeping in mind that not everybody has a strong support system at home, and even if you do, sometimes you just want to talk to somebody who is not directly affected by your illness, consider talking to members of your church, your colleagues or contacting a cancer support group in your area or online. At the bottom of this page I’ve listed a number of different resources to support you.
So what kinds of things will need to be done? And who can you ask to help? Depending on your stage in life, commitments and responsibilities you will either have many details that need to be taken care of or only a few calls to make. Either way clear your calendar as quickly as you can. This is not optional. You may feel fine now but believe me, once your treatments start you won’t be physically, emotionally or mentally at your best and forcing yourself to maintain your duties and obligations will only hinder your recovery.
I’ve learned that while I may think that only I can do my job, the truth is that while our personalities and perhaps our expertise may be missed, we are replaceable. It’s that old Kleenex theory. Nothing in your work life is as important as your health. You can go back to the work when you’re healthy.
Other areas where arrangements will need to be made include
You’ll need to take a look at the compartments of your life that were strewn around you after the diagnosis, and pick each one up, determine a) if you can eliminate it all together or b) what will be needed in order for it to continue to run smoothly, and assign/request help to ensure it happens. When you as the patient, do not have to worry about the basics of daily life, you’ll be able to concentrate on healing.
Note: I am not suggesting that you do absolutely nothing for yourself. In fact I’d advise you to do for yourself what you can and want. Sometimes in an effort to help, family and friends want to do so much for you that you begin to feel as if you have no control and are left out of your own life and somewhat victimized. Don’t let that happen. You need to remain an active participant in your own life, even if all you’re able to do is tell your primary caregiver what your wishes are or make yourself a cup of tea.
In my book The Healing Journal: Taking Control of Your Journey Through Cancer I’ve included a section called Getting Organized in which I provide you with charts for your ‘To Do’ lists as well as a record for ‘Thank You’ notes and calls you’ll want to make as people extend a caring hand. It’s hard to remember everything life throws at us during times of health and even harder during times of illness, especially when you factor in ‘chemo brain’ and your mental faculties are tested to say the least. Having a designated space for your lists will be really helpful in keeping it all together.
Ok, so now that the daily details of your life have been taken care, its time to concentrate on the medical side of your healing journey.
Step 3: Everything Medical! First and foremost keep in mind that this is your journey, your body and your life. Remember I talked about taking ownership? Call this a moment of truth because now the business of healing is your full time job and it starts with letting your medical team know that you are in charge. As I discuss on the Survivorship page of this website, it’s easy to feel lost in the sea of tests and appointments. By being the one in charge, taking control of your journey, you can avoid this desperate and overwhelmed feeling. Arrive at all your appointments prepared. Ask questions, a million of them and take an advocate with you. This can be your primary caregiver or spokesperson. It’s just a good idea to have two sets of ears when unfamiliar terms are used and you’re coping with both the symptoms of the disease and the side effects of treatments.
In The Healing Journal: Taking Control of Your Journey Through Cancer I’ve dedicated 4 sections to the medical details:
Medical History: In an attempt to tailor your treatment to your specific needs your health care team will ask you what feels like endlessquestions about your medical history. In fact every specialist you see will ask you questions about your health, lifestyle, family medical history, medications etc. etc. It’s hard to keep it all straight and remember details. Having a detailed history at your fingertips will enable you to provide accurate and necessary information in a timely fashion.
Appointments: You will have many of them! The appointment blocks I’ve provided give you plenty of space to record the date, time, place, person, reason, special instructions as well as space for your questions. No more lists that you forget to bring – keep all the information in one handy place. And, have a complete record of past and future appointments at your fingertips.
Treatment Journal: Some sound advice and record pages to keep track of your protocols and each treatment – where, when, pre-treatment medications, special instructions, concerns & comments. Keeping track will give your health care team accurate data to consider as they work with you to achieve your health goals; give you a visual record so you feel in control as you talk to your team as well as reference to compare treatments from one session to another.
Contacts: We all have our address books whether they’re electronic or paper. The idea here is to again, have all the important information in one organized place. The big blocks of space in the Contacts section are for the members of your health care team, primary caregivers and anyone else that is an active participant in your healing program – yoga instructor, nutritionist etc. Each block allows for name, address, phone, fax, email and plenty of space for other. This ‘other’ section can be for specialty area, directions, website address, assistant’s name or anything else of importance.
In addition to keeping track of the current details I would suggest getting hold of an accordion file or plastic file box and inside put fileslabeled as follows:
Through your journey you will no doubt have a multitude of forms to complete for your employer and insurance company. Keep all correspondence from them neatly organized in this easy to find and
navigate system. I would all suggest that it is imperative you keep a copy of any form you send in.
If you don’t have a copy/printer at home get one of your helpers to copy the forms for you before you send them in. On the form write the date it was mailed. More than once I have saved my own rear by having a copy of a form.
It is also your right and your responsibility to ask for a copy of all your medical tests results. If you have to pay for them, do it. Having these speaks to ownership and being able to read and re-read the results as you progress will be motivating and reassuring as well as ensures that if you forget what the doctor said, or don’t understand, you can get someone else to read them and explain them to you.
Another section in my book is indirectly related to medical, that is the Travel Arrangements section. Many of us have to travel outside of our home cities, provinces or states to receive treatment. That brings a whole lot of other details to keep track of. In addition to some handy travel tips specific to medical travel and complete lists of hotel chains, airlines and rental car agencies in North America, I’ve included pages to keep track of important details surrounding transportation & accommodation arrangements as well as pages for recording your expenses, an important step especially if some or all of your expenses will be covered by your insurance provider. Having everything in one organized place will help you to feel more relaxed about the trip.
If you forget the medical or travel details, and you will, just reach for your journal and get the information you need. No more slips of paper, searching through your calendars, or having to look for business cards. Everything you need, organized in one place. You will be able to free your mind and concentrate on healing.
As I say in The Healing Journal: Taking Control of Your Journey Through Cancer “This book will help you to keep it together when it feels as if your world is crumbling all around you, and the more you use it the more you’ll realize that you can handle this, you are handling this and there is life, during and after cancer.”
Step 4: Organize your medications. In the Medical History section of my book I have designated places to record your medication information: name, dosage, what its for, side effects, who prescribed it, refills, pharmacy and more. Its really important to keep all this information handy so that either you or your primary caregiver can access it as needed.
More than that you need to physically organize your medications and other supplies. Have one designated place for storage that is out of reach of children while still being accessible to you. Perhaps a bathroom or kitchen cupboard. Consider typing up a list of what you have to take and at what time, then posting it with the medications. Pill dispensers are also really helpful and there are many different kinds available.
Set up an Action File in which to quickly sort incoming mail and other papers so that either you or someone in your team of caregivers can take care of it later. You can also use this for notes you want to leave for your team. Sample files could be:
- For Review
The actual file categories you choose will be largely dependent on your
time in life, type of mail you receive and size of your caregiving team
as well as whether it is you or someone else doing the sorting.
When you get the mail or as you think of a job that needs doing jot
down the details and leave it in the appropriate file for your team or
for you to deal with yourself later on. Having an Action File will keep your household running smoothly and your mind clutter free.
Keeping your house clutter free is also important because you may have
rehabilitative equipment that needs to come into the home. Consider what your needs will be and how you can re-arrange your living space to accommodate such equipment.
Examples may include:
You may also want to consider setting up a daybed of sorts in the living
room so that you can feel like you are part of the action when you want
to be, while still resting comfortably. Or simply putting a blanket and pillow next to your favourite chair. Also for consideration is your bedroom set up.
Something as simple as putting away all the decorative touches such as
pretty little pillows that really serve no function and deciding that ‘making the bed’ really means straightening the sheets so that its easy to get back into bed when you need to.
Other ideas to aid in your comfort and healing:
* Feel the healing warmth of the sun by moving a favourite chair by a window.
Step 6: Organize your financial affairs. Nobody wants to think about the worst case scenario but in the back of all cancer patient’s minds is “what if I die?”, and all the factors – family and financial that represents. In fact, the stress of the uncertainty often weighs heavily on our hearts and our minds. Financial matters are for the most part just black and white, math equations and paperwork. You need to be as stress free as possible to concentrate on healing. By sorting out your financial affairs it will just be one less thing to worry about and, should the worst happen, you will make the transition process easier for your family.
First and foremost you need to have an updated and legal will. If you use an online program or an at home will kit just be sure that its going to be legal in your province or state and that you follow all guidelines for having it properly signed and witnessed. Otherwise hire a lawyer to help you with this. You might also want to consider having power of attorney and living wills drawn up to protect you and ensure that your family members all know your wishes.
Create a complete list of all your accounts including account numbers, related contact people, associated passwords and other pertinent information. This should include but is not limited to the following:
I know you will be nervous about including passwords but it will take the guesswork and frustration out of settling your affairs should your family need to access and close these accounts. You can also store this document in your safety deposit box or home safe.
Create a file for all the important legal papers you have and include in this a copy of your will and if you’re comfortable with it, a list of accounts, as well as the keys to the safety deposit box and contact information for your branch or account manager. I use a zippered accordion file. It works perfectly and both my husband and children know that should the worst happen, they’ll be able to find anything they need in that file.
By the way, this is actually something that we should all do – irrespective of whether or not we’re ill. Life takes unexpected twists and turns. This is one way to prepare for them.
Speaking of your bank, I would suggest making an appointment with your account manager, letting him or her know what is going on and ask them to ensure you have filled in proper documents to have beneficiaries listed on all your accounts or consider making them joint accounts with your spouse/partner. You might at this time be able to consolidate a few things and set up automatic transfers and payments to make your life simpler over the coming months.
Automatic payments and transfers can also be set up with online banking. I would advise doing this and also have utilities bills etc. set up to be paid automatically. It will just eliminate the stress of you worrying about whether you paid a certain bill.
Essentially you want to identify all the pieces of your financial puzzle
and provide information and/or make changes to ensure that your family
has all the information they need and so that you can relax knowing your
finances are being properly looked after while you’re recovering.
Step 1: Don’t be afraid to show your emotions
Step 2: Organize your support system and the daily details of your life.
Step 3: Everything Medical –contacts, appointments, treatments, medical history and
Step 4: Organize your medications
Step 5: Organize your home
Step 6: Organize your financial affairs
Once you’ve completed these steps, with the help of your caregivers and/or a Professional Organizer, you will have prepared to heal and be ready to concentrate on healing.
Step 7: Organize your life and your future. Stress, the environment and lifestyle factors have a lot to do with disease. Your cancer may or may not have been caused by any one of these but now that you are ready to heal and are moving
along the recovery process I urge you to take stock of your life and
think about what factors may have contributed to your illness. In my book I have a section called Healing Strategies in which I discuss living life in the balance, the importance of diet and exercise, faith,
relaxation techniques, setting goals, relationships and more. Each one designed to give you some food for thought, ideas you can incorporate today to aid your healing, and tomorrow to improve your overall health and your life. I also urge you to read the information I have for you on the Life Balance, Survivorship and Food & Fit for Life pages of this website. Each are filled with information, helpful advice, additional resources and recommended readings. Each one is designed to aid you in living your best life, during and after cancer.
Whether you buy my book or create your own binder the principles are of course the same. One of the beauties of my book is that it’s spiral bound and a compact 6 x 9 making it easy to use and carry with you anywhere. It also has a photo pocket to keep a photo or photos of your loved ones with you at all times to remind you why you’re fighting so hard, and a handy file pocket at the back for prescriptions or lab requisitions. It also has colourful tabbed dividers making it functional and easy to flip between the various sections.
You need to get organized around the details of your life, your illness and the many aspects of your healing journey.
Do that and you will move from overwhelmed to empowered. Simplify your home and your life and you will truly be
free to concentrate on a healing path.
I wish you the best of luck in your healing journey. Stay positive and DON'T EVER GIVE UP!