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Thread: "Caregiver's Guide" Contributions

  1. #1
    Administrator Top User emily430's Avatar
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    "Caregiver's Guide" Contributions

    Hello!

    CancerForum's parent company, Internet Brands, also owns the website Urologists.org, and the content team there has asked if we could help them with a special project. They'd like to create "Caregiver's Guides" to help those supporting individuals diagnosed with Kidney & Bladder Cancers and Prostate Cancer (since those are the cancers related to urology). Since the members and moderators here on CancerForums are so well educated, it would be extremely helpful to the editors at Urologists.org to get some insight and tips, ideas, etc., from those with experience.

    If you feel like helping out, please comment on this thread with any insight, "I wish I'd known...," advice, etc.--anything you think would help the Urologist.org editor to create a good, comprehensive piece. In turn, the editor will include links back to cancerforums and credit us with having contributed to the article, which will hopefully help spread the word about cancerforums and what a wonderful place it is for support.

    Thank you!

    Emily430, Community Manager

  2. #2
    Super Moderator Top User Hope2012's Avatar
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    Emily

    Is there any way to see what they have so far? A lot of the things I'd write about are not specific to bladder cancer and more of what to expect as a caregiver to anyone with any type of cancer....
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  3. #3
    Administrator Top User emily430's Avatar
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    General feedback is great! It's totally fine if it's not specific to bladder cancer.

  4. #4
    Super Moderator Top User Hope2012's Avatar
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    Emily...took a stab at this. I'm sure I've forgotten MANY things that need mentioning, but hopefully others can add to this...


    A Caregivers Guide to Cancer

    Diagnosis

    When the dreaded words....we'd like to send you for a biopsy because of something suspicious we found on a recent x-ray/ultrasound/scan occurs the anxiety can begin for many people. Some people can not worry until things are confirmed one way or another, but others immediately imagine themselves in their graves.

    The absolute worst thing is that your doctor wont tell you anything at this point and rightly so. It would be irresponsible for them to speculate. In this internet age, the first big mistake people do is instantly search the internet which invariably has them convinced their loved one has cancer. They will immediately look to the prognosis and see how low the survival rates are. There are some things remember at this stage.

    1. You do not have cancer until a biopsy has confirmed it
    2. Do not use Doctor Google to diagnose. It will scare you and cause anxiety un-necessarily.
    3. The survival rates often use data gathered over a number of years and may not accurately account for recent advances in cancer treatments
    4. When you think of a question for your doctor, write it down as when you are sitting in front of them you may feel rushed and you will forget to ask something.

    Your Loved One Has a Malignant Tumour.....what next?

    If your loved one's biopsy comes back showing malignant tumour, then your world will spin out of control. This is normal. You may not be capable of processing anything that your doctors are telling you about your loved one and you will leave the appointment feeling like you have more questions than answers. Take a few days to let things sink in and once again write down any questions you have as you think of them. Depending on your loved one, they may or may not want to know exactly what is going on and you will have to accept that.

    Some information that you'll want to know is the following.

    1. What kind of cancer is it?
    2. Has it spread anywhere else?
    3. What stage is the cancer at?
    4. What are the treatment options?
    5. Who are the leading oncologists in the area that could take on the case?
    6. Dr Google can be helpful now that you have your diagnosis and stage.
    7. Join a community like cancerforms.net and speak to people who know what you are going through and ask as many questions as you like...both medically and for support.
    8. Has a power of attorney been assigned to make decisions on the health of your loved one if they are unable to do so themselves?
    9. Are their company benefits that need to be taken care of for things like short or long term disability?

    You will be overwhelmed with all the information that is thrown your way as a caregiver. One thing that will help in this is to not think too “long term”. Your life will be getting from one appointment to the next. By changing your frame of mind to lots of little short term goals instead of one long term one, you will be more able to cope with your new “normal”....your new day to day. So instead of thinking after the first round of chemo is done what happens if things haven't improved, make your goal to get to the first chemo appointment. Get through that first week of appointments. Make checklists for yourself so it feels like you are more organized and that you are actually accomplishing things. A pen and paper (or a laptop, smartphone or tablet if you are more tech savvy) will become your best friend! I can't stress enough to make little to do lists and check it off as you go. That feeling of accomplishment that in the past may have been nothing will now become how you maintain your sense of worth and help stop feelings of helplessness and drowning in grief from what may come. Do not think 6 months ahead...think in much smaller chunks. It will do you a world of good.

    During Treatment

    This time period you will feel as though you are stuck in a rut. With countless appointments, prescriptions that need filled, maybe you have a family you also need to take care of, you may start to suffer from “caregiver burnout”. This is also normal. It is very important that you take some time for yourself as well during this time period. See if someone can be with your loved one even for a few hours so you can treat yourself to a massage or a spa appointment. Go have lunch out with a friend or anything that can take your mind off things for a short time. YOU ARE ONLY AS GOOD TO YOUR LOVED ONE AS YOU ARE GOOD WITHIN YOURSELF. So do not forget about yourself during this time.

    Accept help from others. If friends and family ask what they can do, then take them up on it! Some things that can be helpful are:

    1) Have them prepare some meals that can be frozen and heated up. It's easy to stop eating healthy foods when the world around you is spinning!
    2) Gift cards to your favourite restaurants that deliver. You can either eat out for a change of venue or have them delivered to your home for convenience.
    3) Gift certificates for a housecleaning service
    4) Accept offers to have someone sit with your loved one if you need to get away for a bit.
    5) Anything else that can help you with some of the day to day things.

    Be prepared for a potential change in your loved one's mental state. Some may fall into a deep depression and want to shut out the world. Others may lash out at everyone around them. Some will begin to suffer from anxiety. Try to be patient with them and mention changes in behaviour to your medical team as there are medications that can help with all of these things.

    Chemotherapy takes a toll on the human body and your loved one may feel terrible during treatment. It's important to keep their weight up, so encourage eating. Prepare their favourite comfort foods. Large meals may not be realistic so lots of smaller snacks throughout the day may work. If they really aren't feeling hungry then have meal replacement drinks on hand (products like Ensure).

    Ask about any clinical trials that your loved one may be eligible for and if they'd be interested in participating.

    If You are Told There is Nothing Left They Can Do

    Unfortunately, this terrible news can come at any time throughout treatment. If the cancer was caught early enough and was eliminated from the body then that's great!! But be ready for those words that the cancer cannot be stopped. If this does happen then you have some decisions to make.

    Some may want to pass away in their own home....and others do not want to be a burden on you and want to go to a palliative care center or enter hospice.

    Check your local health programs to see if there are any hospice options close by. Ask your medical team what they can suggest as far as more advanced care is concerned. Make phone calls and be informed as to what all the options are. Then you will have to have a heart to heart with your loved to see what it is they would like.

    Pain management in this time period will be key as the cancer spreads throughout the body. Guage if it's increasing and not managed well. Make sure your doctors are aware of this. Pain medication can also cause constipation so be sure to have a stool softner in your medicine cabinet. It is so hard to see your loved one in pain so it's important to keep this under control as much as possible for both your sakes. The goal in this stage is to make your loved one feel as comfortable as possible.

    You may have to have some hard conversations during this stage. Ask about “Do Not Resuscitate” vs life support options. Make sure details such as the persons last will and testament are in order. Do they want to be cremated? Where would they like to rest once they pass away? When would be the right time to enter hospice or a palliative care unit? All difficult things to talk about, but very important as well.

    As the cancer spreads, it is normal for them to lose their appetite and begin to lose weight. This is also normal and as much as you'd like them to eat, you cannot force them to. In later stages, as the body begins to shut down, the body may not be able to process food so force feeding can cause abdominal distress or perhaps constipation, diarrhoea or vomiting. Be sensitive to what they ask for and do not force the feeding issue.

    One issue that can creep up throughout the entire process is if your loved one wants to see family and friends. Some want all the support they can get and want friends and family to visit often. Others do not want to see anyone. It's up to you to become their advocate and explain to others why they may or may not want visitors. For the caregiver themselves, accept all the help you can

    Caregiver burnout is common and most will feel like giving up at some point during this journey. It's so important to take time for yourself. It was said earlier but I firmly believe you are only as good to the person you care for as you are good within yourself. It's a rollercoaster of emotions journey...and it's ok to seek out help from a counsellor or therapist to help you figure out what's going on within yourself and to help you deal with everything on your plate.
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  5. #5
    Administrator Top User emily430's Avatar
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    Wow, thank you so much for your insight! We really appreciate you taking the time to share this!

  6. #6
    Administrator Top User lisa1962's Avatar
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    Hope2012

    I would love to see this as a sticky in each specific cancer forum as some members, especially new ones, do not venture over to other forums here. Within the lung cancer forum we have many ask this types of precise questions.

    If agree, can I copy to LC forum as a sticky?

 

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