Appendix and Forms:

Inside of 'Cancer Coaster - One Woman's Experience of Stage III Ovarian Cancer' there is an Appendix and forms in the back of the book. 


​I think they are very helpful to have to bring to each Doctor's appointment as you are usually not allowed to record the appointment and by the time I left the office I seemed to forget why we made changes, and what changes were made...  I was lucky and blessed to have my husband along with me for every doctor's appointment and chemo treatment.  I also had the best Chemo nurses on the planet.  (ok, subjective, but amazing women!)


​Here are the Forms, Resources, Prayers and information in the Appendix portion of the book.  I would love for you to read the book and continue to follow me on the blog for updates and new information about my journey.


​Thank you for your trust and curiosity.  I look forward to hearing from you with any questions and requests for more information on this site!


Appendix


Helps, Forms, and General Information


I’m sort of organizing this appendix similar to the book. I have it in a ‘sort of’ chronological order, meaning, I think this is the order I “should have” thought about stuff or “should have” organized stuff or dealt with stuff, but I didn’t. There were some preconceived notions I had about certain things, like the chemo. I didn’t think about it like “therapy”, or medicine, it was something to injure me, to bring ME to the brink of death.
It does that, I think, but what it kills first is the cancer. That’s medicine. If you can do it any other way, good for you. I investigated a lot of holistic treatments which are available, and none were ones we could afford first of all, and some of the others I chose to use to build me back up after the chemotherapy was finished. I chose to utilize both-the best of allopathic (western medicine) and holistic (eastern medicine) medicines and practices.
You can take what works for you and leave the rest. (Cue the music for “I Did it My Way tm by Frank Sinatra…) As Nike says “Just Do It tm”, it really doesn’t matter, just don’t NOT do it because “you are overwhelmed” or “can’t think of that right now” – GET PEOPLE TO HELP YOU!
OTHERS REALLY DO WANT TO HELP! And in tangible ways, so when they offer, don’t feel weird about asking for SPECIFIC ways that they may help. Even offer to show them a list of “things needing to be done”, and
ask them to pick something that they would be willing to do that could be of help to you. You’d be surprised how much some folks are willing to do (and in some cases please have a back up, because sometimes people are very well meaning, but flake out because they are uncomfortable or WANT to help, but really can’t. Some folks just find that they are unable to say NO, so just have a back up…)
Some of the information here are “forms”. They are designed to be taken to each visit and kept in a binder of sorts. These forms will eventually be put onto the website www.Cancercoaster.com for download for your personal use, so you can keep track of progress and have someplace to refer back to in cases where your memory may not be great.
Please use them, modify them, and send me feedback. Let me know what worked and what didn’t. Use what works and toss the rest. Blessings on your own personal ride.
Staple Doctor’s Business Card Here
Nurses Telephone Extension:___________
Billing Person Tele Extension: _____________________
Notes: ________________________________________
Insurance Information: Customer Service Agent’s name and number or extension, ____________________
Your Group number, insurance carrier, perhaps make a copy of the card and staple it here:
Customer Service Phone number for you: _________________________________
Customer Service Phone number for physician’s office:________________________________
Staple business card of Doctor’s Billing Person here if available:
Department of Managed Health Care – the boss of all insurance companies’ phone numbers: in your state:
_____________________________________________
Staple Doctor’s Business Card Here
Nurses Telephone Extension:_____________________
Billing Person Tele Extension: _____________________
Notes: ________________________________________
Nurses Telephone Extension:___________
Billing Person Tele Extension: _____________________
Notes: ________________________________________
QUESTIONS TO ASK DOCTOR
What stage cancer do you think I have? ___________________________________
What happens next? _____________________________________________
Pre-approval for surgery or procedures name of office person who handles it: ____________________________________________________
His/her phone number and extension ___________ /_________
QUESTIONS TO ASK DOCTOR Cont’
Procedure codes for Insurance Company, name of procedure and billing/procedure code: (CPT Codes) ____________________________________ ____________________________________
Do you recommend Chemo or Radiation or both for this type of cancer? What meds are in going to be in the chemotherapy treatment? ____________________________________ ____________________________________
Can we do Chemosensitivity testing (see http://csn.cancer.org/node/141179) to see if the cancer cells that I have are going to respond well to this cancer drug mixture first? Y / N
Do you give those treatments here in your facility? Y / N If not where? Get Card and staple here:
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: _______________________________________
QUESTIONS TO ASK DOCTOR Cont’
Do you recommend a Port-a-Cath? Why or why not now? If not now, when? _________________________________________
Can I get my prescriptions filled here, or is there a pharmacy that is in the building / close that I can pick up or have delivered while I’m having my chemo treatments? Y / N Get Card and staple here:
Name of Pharmacy for drugs and Phone numbers _____________________________________________
Pharmacist name: ____________________________
Pharm Tech name: ___________________________
Do you have any Cancer Support Groups available? Get Card and staple here: __________________________
When do I start disability and do I fill out the forms here? Does your office have a person to handle that or do I mail them in?
_______________________________________
Person’s name and Phone Ext. __________________________________________________________________________________________
Are you available only during office hours? Y / N
What are those hours?:__________________________
Who can I call after hours in case of emergency or potential emergency questions? _____________________________________________
Staple Bus Card here: _______________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
QUESTIONS FOR THE HOSPITAL
Can I donate my own blood at this time? (If surgery is immediately scheduled you’ll need other family members to donate for you if you do not trust the local blood supply)
Can my family / friends donate blood? Y / N Who do they need to contact to arrange to donate? _________________________
Family/friends whose blood I am willing to accept: _______________________ __________________________ _______________________
Family / friends whose blood I am NOT WILLING to accept:________________________ ______________________________
Do I have time to donate my own blood for my surgery? Y / N
Who do I contact for blood donations or can I make an appointment today before leaving the hospital?
Date: ____________________ Time______________ Contact Person: __________________________
Tour of the Facility / Hospital / Chemo Center - pre surgery Date: ____________________ Time________________________
Contact Person: ___________________
Can I have someone stay with me during my hospital stay? Y / N
If YES, what do they need to bring with them? _____________________________________________
Toiletries / towels / razors / pillow / are Laptops allowed?
Is there Wi-Fi at the hospital? __________________
Wi-Fi Password:_________________________________
What are the facilities? Blow up mattress? Cot?
Pull out couch? Linens provided? Y / N
What is the down time to be expected? Potential length of time in Hospital? _____________________________________________
Best Case Scenario?:________________________________
Worst Case:____________________________________
What can I bring from home / What am I NOT ALLOWED to bring from home: ____________________________________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
THINGS NEEDING TO BE DONE PAGE
Tour of the Chemo Facility
Date:_______________________ Time:___________________
Chemotherapy Nurses Names:___________________________ _______________________
Tour of the Radiation Facility
Date:_______________________ Time:_____________
Radiation Techs Names: ________________________
Nurses Names: ________________________________
Signed all the papers for: Surgery / Hospital:_______
Donated Blood___________________________
Advance Directive
You may have been asked to “get your affairs in order” prior to your surgery. Have you completed those forms? The hospital may have an Advance Directive Form in the paperwork that you were given. If you were not given anything like that, here is a website that may have some helpful forms:
http://www.agingwithdignity.org/
Speaking with a Lawyer may be a smart move if you have assets to protect, and wishes for your valuables after your death, in this illness or not. An Advance Directive (Like a “Do Not Resuscitate”) is different in each state, so please contact someone reputable to get help. They can even help you with rules such as “if my wishes are contested or disagreed with then everything of monetary value gets donated to charity.”
You may have wishes that the family needs to know about that you may not want in writing. I have an acquaintance of mine whose uncle passed away recently. He had a DNR on file and the children knew about his wishes. When he arrived at the hospital he explained to the nurses that he wanted to live past his birthday coming up soon, as he wanted to simply say he made it to that birthday, so they did put him on life support and he was in and out of consciousness during that last week.
When the children objected to him changing his mind so abruptly they wrongly assumed it was their Aunt who wanted more time with him. Finding out after his death, the children learned that his retirement and pension was not going to go to any of the family were he to not live past his upcoming birthday, so although his wishes were to not be placed on a respirator or have life prolonging efforts made on his behalf, he felt it necessary for the well being of his family that they be taken care of financially, so he spoke to his wife and they made the arrangements for him to be put on life support until after his birthday. Evidently the nurses were in on it as well, as on his birthday, once the family left, per his instructions, the nurses dressed him in his cowboy boots and canvas riding jacket and jeans, and unhooked him from the machines, wheeled him outside onto the patio and allowed him to pass “his way”, outside, just him and God. Nicely done. Specify what you’d like, cowboy boots and hat and all.
http://www.agingwithdignity.org/ - I found this site very helpful with my mom, who has no real assets to speak of except for a number of sentimental antiques, but she felt it important to signify who she wanted to have each item after her death. The paperwork on the Aging with Dignity site is called “The Five Wishes”, and although it is not a “legal form”, but it makes the wishes known, and on paper, which is good clarity for the family.
This is also a way to make it easier to speak to your family about some of the decisions that you have made or want to speak to your family about regarding what you want done in the event of your death. Face it, we’re all “terminally ill”, it’s just a matter of time; some of us get more time, some less. The Five Wishes form can be done online or mailed to you to be filled out, and costs $5. at this time.
DNR’s
Many states require a person to fill out a Do Not Resuscitate form filled out and signed by a doctor. This form lets emergency personnel know that you don’t want them to use life support treatments when you are dying. Please check with your doctor to see if you need to have a separate legal form signed.
Are you going to have visits from spiritual leaders from various religious churches? Are the hospitals’ visiting hours for clergy different than family or friends? You may be in a hospital which specifies spiritual preference on your arm band. When they are asking you questions when you first get to the hospital sometimes I had a hard time understanding their questions – “any spiritual preference”? that was the question… I didn’t understand the question… I wanted to say YES.
They were asking about denomination or church affiliation. Even if you are in the hospital for something routine, please have the information on file with the hospital.
Are you an Organ Donor? Y/N ________________
Did you know that if the family contests you being an organ donor, that after your death that you may not have your organs donated? It may behoove you to have a signed document from the family members agreeing to your being an organ donor. You can also agree to have certain organs donated and others not. You may want to speak to your doctor, or your family, or a spiritual leader about this and any feelings or disagreements you may have so to come to agreement.
Are you a Blood Donor? Y/N _____________________
Because of your illness, for example my cancer, I cannot donate. I have a friend who has very rare blood type who also cannot donate because he has Hepatitis C. Because of my cancer I cannot donate any tissues. They are considered contaminated. Are my Organs unable to be used as a willing Donor? ______________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
POST OPERATIVE QUESTIONS
Most of these questions “should” be in your release paperwork but just in case it’s not….
What do I need to be doing right now to prevent post surgery infections or other issues? _____________________________________________
When do I get the staples / stitches out? _____________________________________________
Next Appointment?_____________________________
Do I need to be eating anything differently? _____________________________________________
What are my movement restrictions? ____________________________________________
Physical Therapy – what is the “time frame” for PT for a cancer patient?_______________________________
Do I need help driving? ____________________________________________
If I’m uncomfortable sleeping or having trouble sleeping what can I do to get comfortable? Can the nurses help with positioning pillows and suggestions? _____________________________________________
_____________________________________________
Can I take a sleep aid along with my medications? _____________________________________________
What over the counter drugs can I take if I find that the prescriptions are too weak or too strong or that I don’t need as much as the prescription or that I need something for breakthrough pain or nausea? _____________________________________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
WEEKLY / MONTHLY VISIT SHEETS
What has changed since our last visit? __________________________________________________________________________________________
Medication? __________________________________________________________________________________________
Side Effects:
__________________________________________________________________________________________
Dosages:? __________________________________________________________________________________________
Added Medications?_____________________________
For what reasons? ______________________________
How long until we see results from new medication? _____________________________________________
Removed or reduced Medications? _____________________________________________
For what reasons? ______________________________
Am I noticing any changes in my body since our last visit? Sleep, Numbness – hands / feet,
Mood Changes – Depression – sleeplessness, fear, anxiety, rage, other: __________, Chemo Brain, Breathing?
Questions for YOURSELF or between you and a close friend or Parent or discuss with Doctor if you find you may need medication to help get through this time period.
How is your mental spirit?
_____________________________
Do you want more company or less? _____________________________________________
How is your irritation level? _____________________________________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
MOOD / SPIRIT
Do you think you may be depressed? This is different than sad or upset about the changes in your body and mind. Chemo brain is real and can be very irritating, the scars can be scary, and the change in your sexual self can be difficult and upsetting as well. Studies have shown that simply having a “good cry” actually improves your mood by 40%. That can be a huge help when you are feeling overwhelmed by so many changes in yourself and in the way others treat you. Go ahead and cry! Get alone if necessary and just do it!
Good cry collection of movies and songs – what songs and movies help you to cry when you need to have a good cry?
List 5 -10 here: ________________ __________________ _________________________ ________________________ ___________________
My suggestions for adults: Films: The Doctor starring William Hurt, Philadelphia Story starring Tom Hanks, The Notebook Starring James Garner, A Walk to Remember Starring Mandy Moore, The Last Song
Starring Greg Kinnear and Heaven is For Real also Starring Greg Kinnear. Songs: Butterfly Kisses by Bob Carlisle, Christmas Shoes by New Song, I Will Always Love You, by either Whiney Houston, or Dolly Parton, both versions are amazing, Dance with my Father by Luther Vandross, and Don’t Take the Girl, by Tim McGraw.
If crying is not what you need right now, a good laugh could do it for you – laugh therapy may be something that a therapist in your area can get you some information on. (It seems silly to me to pay to laugh, but laughing in a group can be more therapeutic sometimes… why do we pay to go to the movies, could it be simply to have a great laugh with other folks.)
Good laugh collection of movies and songs – what songs and movies make you laugh? Singing along with kids at a park can be so fun! You may be weak, but even a small game of ‘ring around the rosy’ can really lighten up the mood, especially fun when they get the words wrong. If you have no one you know with young kids, I recommend you checking in at a preschool, or elementary school, telling them you are doing “research” for your cancer and would like to observe the kids – this would go over well at a local university who has a daycare for their students.
Make up new noises for Old MacDonald had a farm – YouTube.com has got to have some strange and funny
odd video of some young kids musicals that would make you laugh. How many seasons has “Funniest Home Videos” been on the television? You can probably get it on Netflix or YouTube.
Books – Anything by Louise Hay I recommend. Find the ones you like and re-read them. I’m a huge James Herriot fan. My hubby read a lot of him to me while I was in bed. (he was not always thrilled, but I loved it)
Hospital support groups in your area – Start one if there are none available. Talk to one of the LSW’s (Licensed Social Workers) who come to visit while you are in the hospital, or one of the Dr.’s or Nurses regarding starting one at the hospital if there are none already available.
SPIRITUAL HEALTH
Can someone who is not a “believer” go to a church to talk to a Pastor or Priest? YES!!!
Healing Masses / Services per denomination
Call local “Catholic Diocese” phone numbers to get information on “healing masses” being said - people lay hands on you and pray over you. You may also ask your nurse if they have Chaplain’s available to visit on a regular basis. Their extension at the hospital? _______
Name or business card:_____________:____________
VISUALIZATIONS
There is a young child diagnosed with cancer and he loved playing video games. He (and probably one parent or both) developed a game similar to Pac-man for kids with cancer where the ghosts in this game are eating up the cancer cells, for kids going through their treatments.
While you are sitting in the chair or laying down getting your Chemotherapy treatments, or Radiation, imagine the “medicine” is getting to the cancer at the cellular level, it is killing every “bad” cell in your body and letting it go. Allow the dead cells to go out of your body every time you exhale, each time you urinate or defecate, the bad cells are leaving your body. Every inhalation is bringing in new life to your body. It is restoring health to each of your cells and allowing them to do their job to kill off the invading cells like a cold and restoring you to full health.
MEDITATION
Focus on your breathing. Take the time to feel the inhalation and exhalation. Each breath, each inhalation is bringing in new life, and each exhalation is releasing the old ways. Release the stress. Release the expectations of anything, your family is free to be who
they are, your job is free to be what it is, the drivers on the road are free to be who they are, and free to drive however they choose, and I can chose to let it be. I am releasing the world to be just as it is; knowing that I am right where I need to be right now in this moment. I release myself. I accept my life as it is. I forgive those who have wronged me and allow them to be in God’s (or Higher Power, or Universal Life Force, or Karma’s) hands to get what they deserve when it is time for them, I release them now. I accept healing from God’s (or Higher Power, or Universal Life Force, or Karma’s) hands now. With each breath God (or Higher Power, or Universal Life Force, or Karma) is here, doing the healing work I need. I accept God’s (or Higher Power, or Universal Life Force, or Karma) healing work.
For caregiver’s eyes only – family member caregivers eyes only… not the pro’s…
Get rest; get time alone, and with friends who are there for YOU not a give and take in this time of need. Get a housekeeper if necessary – cleaning for a reason has cleaning people available to come, call and get someone scheduled to help out. www.cleaningforareason.org.
Spend time with your loved one, spend time with them, read to them, lie in bed and talk with them if they are unable to get out of bed. Call friends for them to come visit, as they may want that, but feel embarrassed to do that on their own, ask first of course.
Going to church or places where you or your loved one are regulars can be embarrassing for the person post surgery to see the looks on people’s faces. Although you think you look pretty good, people haven’t seen you and your loved one since the surgery and they are shocked, and sometimes you see it in their faces, for me it was so awful. Maybe wait to see “acquaintances” till after you feel better. Or get a number of friends from that place you are going, and let them know you are attending, so you can be surrounded by friends who can buffer the cancer survivor from others who may not be tactful in their responses.
Don’t’ be afraid to ask people to leave. If you need your sleep or your privacy, just let them know. Simply tell
folks, “I’m off to get my nap now, thank you so much for your visit and for your time; however I really need to get my nap right now”. Or have a schedule, and let your family and friends know what it is – then when folks are visiting just explain, “I really need to stick to my schedule”, thank you so much for coming to visit, or for bringing the food”, or whatever they’ve done. People want to be helpful and they may not know they are overstaying their welcome. I am an extrovert so people visiting was awesome, but I got tired quickly and needed my husband to walk me upstairs first, and then go down and walk people out of the house so that he could then come up and help me get into bed, help me to get comfortable, for me that was also about my anxiety, I wanted him close to me, to read to me, so I could hear his voice.
In terms of the doctor’s or the professional people…If you are not getting the care that you feel you NEED, do not feel badly about asking for a different doctor, nurse, medical assistant, orderly, housekeeping or even to the point of taking your loved one to a different hospital. Trust your instincts.
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
Pre Surgery Questions:
Who can come and visit and be with me prior to the surgery in the waiting room? Do they need identification with them? _______________________.
Who can come and be with me in the prep room and post op rooms? _______________________________.
Is this a faith based hospital (if so it may offend your faith and not work well for other folks in your family, so be clear with either the hospital or with your family members what your wishes are, prior to getting into the surgery room or the week before surgery. I think you need to take the week prior to surgery to simply be at peace and relax during that time. This is not the time to be discussing theological arguments / disagreements / political stances etc.
Are there other surgeries you’d like to have i.e. cosmetic in nature to have during the procedure? i.e., breast implants, tummy tuck?
Would you rather have a colostomy if you’re going to have ongoing issues with digestion?
What ongoing issues with digestion may I have with this procedure? What is the worst case scenario once you get in there and find cancer has spread, what organs will you remove and what will the consequences of lifestyle be? i.e., if my pancreas is removed I will have diabetes. If my gallbladder is removed, does this mean no greasy French fries in my diet? __________________
What changes in my household need to take place PRIOR to the surgery? Will I be walking up and down the stairs without assistance? Ramp to house necessary? Driving on my medication after how long? If I am on an extended release medication are their usual release times so that I can drive? _____________
What can I do to prevent post surgery infections? ____________________________________________
What are the time frames for referrals to other doctor’s, i.e. physical therapists, nutritionists, exercise classes at the hospital? ________________________
_____________________________________________
Get the business cards of the doctor’s doing the “rounds” at the hospital who are seeing you post surgery, because there may be one that you “click” with more so than the surgeon who just worked on you. They may all be oncologists, so you can always ask for a referral to that doctor if you felt a better connection
with him or ask the other doctor for a second opinion on the treatment / procedures you are getting currently. Your surgeon may have been great, the best, but if the bedside manner and follow up is not quite what you want, CHANGE DOCTORS!
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
Parents with children who are diagnosed
Forms to take to doctor’s appointments,
blank ones to fill in:
Date – ________________
Treatment:___________________________
Results Given:________________________________
Copy of Lab results from what date:
Dates: ________________________________________
Stapled to back of this page in chronological order, or use a new page for each lab test.
Issue # 1 currently experiencing:
Recommendation for issue # 1:
Issue # 2 currently experiencing:
Recommendation for issue # 2
Where to obtain these OTC (over the counter) drugs or treatments:
Pharmacy √ Medical Supply √ Online √ Health Food Store √ Nutritionist √ Acupuncturist √ Neurologist √ Urologist √ Other Doctors:_______________________
Are we allowed to stay overnight in the hospital? _____________________________________________
Do we want our child to know the truth regarding everything, or would we prefer to tell them ourselves? _____________________________________________
Would we like to insure that the conversations regarding our child’s health not be held within hearing distance of our child? __________________________
Initials of Dr. / Nurses that they agree to above privacy request: __________ ____________ ____________ ____________ ____________ ____________ ____________ ____________ ____________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
New Form Most Recent Visit
Forms to take to doctor’s appointments, blank ones to fill in:
Date – _______________________________________
Treatment:
Results Given:
Copy of Lab results from what date:
Date ______________
Stapled to back of this page…
Issue # 1 currently experiencing:
Recommendation for issue # 1:
Issue # 2 currently experiencing:
Recommendation for issue # 2
Where to obtain these OTC (over the counter) drugs or treatments:
Pharmacy √ Medical Supply √ Online √ Health Food Store √ Nutritionist √ Acupuncturist √ Neurologist √ Urologist √ Other Doctor:________________________
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes:________________________________________
FINANCIAL HEALTH
Beckstrand Cancer Foundation at Beckstrand.org was a helpful place for me to get help with our utility bills and medical bills. You can apply or look them up online.
Ask the Hospital if they have any sort of “Charity Care” or other program for taking insurance payments as full payment. This will allow you to have no co pays. They may have also a low income assistance program.
Take advantage of all LSW’s and social workers who come to visit you at the time of your hospital visit, sometimes they can be good sources of free counseling or resources in the community.
Call #211 – This can give you information on resources for food banks, churches that can help with medical expenses, rides and other local places that can be of assistance.
American Cancer Society www.cancer.org call and if they are unable to be of assistance to you, they are able to give you references to other organizations that can help.
Is it true if you donate your body to science that you get cremated for free? This is a process that would need to be taken care of ahead of time as you may need to designate the university where you would like to donate
your body. https://en.wikipedia.org/wiki/Body_donation is a great bit of information regarding body donation and the rules governing such acts.
If you would like to be cremated and have everything taken care of ahead of time, there are “Societies” that list many advantages and help that will be given once your loved one has passed away. “Just one call” and the “Society” will take care of all of the details.
Trident Society… The Trident Society is one such place that gives you the ability to make payments on your cremation and gives a card, similar to a credit card, with an account number on the card, and in the event of your death, the next of kin, calls the number and the Trident Society personnel take care of everything, from picking up the body, to transporting the ashes etc.
Neptune Society, I have heard that this service is similar to the Trident Society and can also assist in having your ashes taken out to sea.
After looking online I am hesitant to sign up with these folks. I see good and bad reviews for a number of companies offering similar services. I like the idea of having someone help out with certain aspects, although some things may need to be done ahead of time, like obituaries, what would you like said about you? Would your loved ones agree? Work it out ahead of time.
After reading up on some of these “societies” I am thinking I need to check in with the Society that we have for my Mom to insure on a yearly basis that the “fine print” in these contracts that can sometimes read “where available” have not changed for my area. I want to make sure that I have the details taken care of for my family in the event of my passing.
When my Dad passed after his bout with Lung Cancer, we were all so unprepared, which was dumb, but he had gone in for a “routine” procedure, we were not expecting him to be gone in two weeks.
Needless to say, it was a comedy of errors, or a tragedy of errors…we bought two urns, one of which we still haven’t received, we can’t even remember who we bought the second one from. We were given the option of two chapels for services, one at the funeral parlor, one at the Cremation place. We had the service at the Church where my Father had been a parishioner for years. They also charged money for the service, the pastor, the organist and the singer. Even as a long time parishioner. We didn’t have a picture for the memorial service; we were confused about which one would be best or who had which picture. Be aware and prepared for those costs and for some confusion, but prepare ahead of time. Check in with your church. Check up on your “Society” on a yearly basis to ensure that when the time comes, that you are up to date with all of the information with up to date contact names as well.
Financial Planning
Financial planning? There are a number of good financial planners out there, good reputable companies. I am not qualified to speak to which company can help with your specific needs for retirement planning as well. I recommend getting help. If you have been fortunate enough to have had a financial plan that you have stuck with and have assets, make sure they are protected. You want to have final say over your finances and you don’t want to have what you have left eaten up by burial costs or loved ones fighting. Make your desires known so that there are no negative vibes after you leave. Make your leaving this planet a celebration.
Positive Affirmations
Positive Affirmations – one site I like is the Adult Children of Alcoholics website, they have a number of wonderful affirmations listed on their site. http://www.adultchildrenofalcoholics.com I find the site a bit difficult to peruse, so here is an excerpt from http://www.adultchildrenofalcoholics.com/jump2.htm
Acceptance is the pathway to peace.
When we try to force results by manipulation, we wind
up in a quagmire pit.
My life is in session whether or not I attend.
When we can accept even troublesome events as gifts from God, it brings joy to us.
Once I totally accept the situation as it is, it will begin to change seemingly of its own volition.
I'm here because God thought I was a good idea.
There is no emergency. I'm just reporting for duty.
I have many privileges.
Your opinion of me is none of my business.
"Let go and Let God" means "Shut up and hands off."
Acceptance equals "mind my own business."
It's not how much you have or don't have. It's what you do with what you have.
Learn how "to be" not how "to do." "To do" means to bring to pass, to carry out. "To be" means to have an objective existence; have reality or actuality; live.
I put myself in idle. I don't have to be in action. Put myself in idle and enjoy life. There is a wealth of life happening around me as I relax into it.
There are books with affirmations for each day that are available at many book stores and to download if you prefer the eBooks. You can get a kindle app on your smart phone and read the affirmations anytime.
Remember you are Beloved regardless of how you feel.
Nurses Telephone Extension:______________________ Staple Doctor’s Business Card Here
Billing Person Tele Extension: _____________________
Notes: ________________________________________
Medication Side Effects
Medication side effects: List all of them for future reference. From the pharmacy bottle / inserts and check out online web sites as well, as there may be other side effects that are not “confirmed” as of yet. Not to be a hypochondriac, but to be sure that if you are having side effects, that you are increasing your awareness especially if you are a caregiver. It may seem that this person is simply whining or having a moody day, when in fact it is a side effect that is rare for some people. I have “pain” as a side effect of my pain killers. Ugh, go figure. Headaches from the Norco. Common. Stupid, but common. And thank God for the Norco.
Medication # 1 _____________________ _____________________ _____________________
Medication # 1 cont _____________________ _____________________ _____________________
Medication # 2 _____________________ _____________________ _____________________
Medication # 2 cont _____________________ _____________________ _____________________
Medication # 3 _____________________ _____________________ _____________________
Medication # 3 cont _____________________ _____________________ _____________________
Medication # 4 _____________________ _____________________ _____________________
Medication # 4 cont _____________________ _____________________ _____________________
Medication # 5 _____________________ _____________________ _____________________
Medication # 5 cont _____________________ _____________________ _____________________
Recommended Reading / Support
There are many .99 cent books on Amazon.
There is help through the Cancer Society:
http://www.cancer.org/
The Cancer Recovery Eating Plan by Daniel W. Nixon
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=the+cancer+recovery+eating+plan
The Caregiver's Companion: Lessons from a Life Interrupted by Bill Chionis
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Bill+Chionis
CURE Magazine as mentioned earlier in this book, is free to any cancer patient, survivor and / or caregiver.
http://www.curetoday.com/subscribe
Miracles Never Ending by Robert Canton, http://www.robertcantonministries.org
Try local hospitals. Contact their Public Relations Department for classes and workshops as well as exercise classes specifically modified for those of us with weakness due to chemo or radiation or neuropathy or balance issues.
Contact local churches for assistance.
You can also dial 211 and they can give you information in your area.
Saint Vincent De Paul Society was helpful to me locally with food bank assistance when our finances were really low. http://www.svdpusa.org/
Prayers
Praying is unique to each of us. Here are some “old school” prayers. Jesus taught his disciples to pray:
Our Father who art in heaven, hallowed be Thy name, Thy kingdom come, Thy will be done, on earth as it is in heaven. Give us this day our daily bread, and forgive us our trespasses, as we forgive those who trespass against us, and lead us not into temptation, but deliver us from evil, amen.
My thoughts on breaking down the “Our Father” Our Father, who art in heaven, hallowed (respected, honored and revered) be thy name, Thy kingdom come, Thy will be done on earth as it is in heaven. Give us this day our daily bread, and forgive us our trespasses (when we step into other’s business, when we violate boundaries of respect, safety or when we literally trespass against another’s personhood) as we forgive those who trespass against us. (we may not be forgiven if we hold a grudge against another, so let it go!) Lead us not into temptation, but deliver us from evil, Amen.
Higher Power, please allow me to be ready to go from this life, when it's time. Help me to not be hesitant but to have my relationship with You, and my faith be so grounded in this lifetime, that I will be ready to run into your arms when it's time for me to transition to this
next round. (I meant to say realm here but I'm not sure I don't like round better), Amen.
I have one prayer that has been taped to my desk for the last few years from Robert Canton Ministries – www.robertcantonministries.org
HEALING AND KEEPING PRAYER
Heavenly Father, I thank You for loving me. I thank You for sending your Son, our Lord Jesus Christ, to the world to save and to set me free. I trust in Your power and grace that sustain and restore me. Loving Father, touch me now with Your healing hands. For I believe that Your will is for me to be well in mind, body, soul and spirit. Cover me with the most precious blood of Your son, our Lord Jesus Christ from the top of my head to the soles of my feet. Cast out anything that should not be in me. Root out any unhealthy and abnormal cells and multiply my healthy cells. Open any blocked arteries or veins and rebuild and replenish any damaged areas. Remove all inflammation and cleanse any infection by the power of Jesus’ precious blood. Let the fire of Your healing love pass through my entire body to heal and to make new any diseased areas so that my body will function the way You created it to function. Touch also my mind and my emotion, even the deepest recesses of my heart. Heal the hurts and pains and all the wounds that I have in my life. Saturate my entire being with Your presence, love, joy, and peace and draw
me ever closer to You every moment of my life. And Father, fill me with Your Holy Spirit and empower me to do Your works so that my life will bring glory and honor to Your holy name. I ask this in the name of the Lord Jesus Christ, Amen.
Maitri Prayer:
May I be Happy, May I be Healthy, May I be at Peace, May I life with Ease. I pray this for myself, my loved ones, my friends, a stranger, our enemies and all beings.
Before meals recite: Ita Da Ki Masu – the Japanese wording I take this nourishment in gratitude (to all beings).
After meals recite: Go Chi So Sama - the Japanese wording Thank you in deepest gratitude (to sustain my life).
Of course there are many formal prayers out there, as many as are different denomination and practices and traditions. The important part is to start the conversation. If you’re having trouble, I recommend going to a church and speaking to the Pastor or Priest.
They may have someone on staff for Pastoral counsel. You can also look up prayers on-line, there are many.
You may also look for counseling from a professional counselor. I recommend an MFT as they have more observation time with families, a psychiatrist may have more medical knowledge, and so if you are having more medical based issues, perhaps a good psychiatrist or psychologist can be helpful. I recommend a PhD as they have more education and perhaps start by calling a few asking regarding their specialty. Also the LCSW’s at the hospitals may have good referrals for you, use them as a resource.
Bottom line, take care of yourself, take care of your loved one. Talk to those you love. Make nice. Love covers it all. Proverbs 17:22 states: “A Merry Heart doeth good like a medicine: But a Broken Spirit drieth the bones” Keep Merry!
Acupuncture can be very helpful, especially for help with the side effects of chemo and radiation. It helped me with my anxiety, and nausea and joint pain a lot. I found a local school where I was able to get treated.
Above all, listen to your doctor. Mine told me NOT to look at the web for any information because it will scare you and sometimes misinform you. I had a lot of questions, but I also had my gynecologist, my
oncologist, my neurologist and my holistic physicians to help me out. I did my own research, but that’s me.
Be well. Seek your own Higher Power. Glory to my God for helping me in each moment, each day with grace and mercy. Ask.
I hope this has been helpful. When I share my struggles, they feel lighter. When I hear your struggles it encourages me.
Thank you all for being part of my journey.
I am truly blessed.