What I (we) learned (did) that could help others.

Terry_s wife
Terry_s wife Member Posts: 21
edited March 2014 in Head and Neck Cancer #1
Make as many appointments as you can. I didn't miss an appt. where we saw his radiation doctor nor did I miss a chemo visit. I literally was the tattle tale - of course he didn't like it :-) Ask your own questions and if necessary write things down in between visits to discuss. Sign up for medic alert! Keep track of meds and treatments. I set up an excel spreadsheet from diagnosis to last visit. I updated it with every major change and kept copies with me. This was especially handy when we had to go to the hospital. I just gave them a copy and they attached to his admission sheet. I also kept his meds listed at the top and changed as needed. My daytimer literally became his - I kept his appts., doctor cards, lists - everything needed in one place. When he became a larengectomee patient I made copies of the "emergency resuscitation procedures for neck breather" and visited the fire stations closest to us. I spoke to the emt's and gave the info to them. The response was that they got training on neck breathers but in all honesty had never had to utilize the training. They seemed to appreciate the "refresher". Contact your 911 central control. I was able to e-mail our information. I gave them our address and they "flagged" our account in the event that a call came to dispatch and the responders would know he was a neck breather. Our system set up to do a "dry run" beforehand. I also found those clingy things that stick to windows that said a complete neck breather is here. I had one on our door from the carport, our front door, the driver side of his truck and the passenger side of my SUV - kinda funny watching people trying to read the sign that pulled up beside us, you knew they were clueless. Understand that you are not the enemy. My husband would give me or do anything in the world he could. During the last 6 months of his life I was the one that he lashed out to and at. I knew that the person lashing out was doing so because of the medication - he was on morphine and roxicet. Expect to lose friends and know who you can depend on. Seriously. Friends [I thought] never came around but were able to come to the funeral. Most of which I have not heard from since the funeral. I know it was because they didn't know what to say or do. The worst thing was that he would really would have liked the company. I would be more than happy to share other things we did that worked for us. Don't hesitate to contact me. Best wishes for everyone.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Thank you
    Terry's wife, you were a real trooper! And a most well-prepared one! I applaud you for all that you did on your husband's behalf and am certain he appreciated it greatly.

    As well, I would like to thank you for the list of items you cover in your post. I intend to copy them, if you do not mind, and then paste them when appropriate as responses to people with particular questions, as you have done a most thorough job, more than anyone could really expect, as a caregiver, as a lovegiver.

    Take care,

    Joe
  • slickwilly
    slickwilly Member Posts: 334 Member
    #3
    soccerfreaks said:

    Thank you
    Terry's wife, you were a real trooper! And a most well-prepared one! I applaud you for all that you did on your husband's behalf and am certain he appreciated it greatly.

    As well, I would like to thank you for the list of items you cover in your post. I intend to copy them, if you do not mind, and then paste them when appropriate as responses to people with particular questions, as you have done a most thorough job, more than anyone could really expect, as a caregiver, as a lovegiver.

    Take care,

    Joe

    terry's wife
    What a great post from an amazing caregiver. So many people are in shock from the cancer diagnosis that many issues are not thought of. You are truly an inspiration and teacher to many about being proactive while dealing with cancer and its side effects. The best decision your husband made in his life was when he married you. You have so much to offer the caregiver section of the discussion boards and I hope you will stay around and offer advice. Nobody has all the answers but you have done things I have never seen on here before. Slickwilly
  • Terry_s wife
    Terry_s wife Member Posts: 21
    #4
    soccerfreaks said:

    Thank you
    Terry's wife, you were a real trooper! And a most well-prepared one! I applaud you for all that you did on your husband's behalf and am certain he appreciated it greatly.

    As well, I would like to thank you for the list of items you cover in your post. I intend to copy them, if you do not mind, and then paste them when appropriate as responses to people with particular questions, as you have done a most thorough job, more than anyone could really expect, as a caregiver, as a lovegiver.

    Take care,

    Joe

    Thank you. Feel free to
    Thank you. Feel free to share. When Terry was first diagnosed we had no idea what was to come. It wasn't like you could run to WalMart:-) After his surgery we were given a packet of info. and literally 1/4" thick of websites to scour. One thing I didn't mention before which we found really really helpful was to develop a rapport with your pharmacist. Terry got relief with a product called "Hurricane Spray" and our pharmacist kept it on the shelf for him. HS is the spray version of what the dentist uses to deaden your mouth before giving a shot. It's about $40 a can but worth it! When I got the one they had on the shelf they immediately reordered. I am a very organized person and what I posted worked for us. It got where when someone asked him a question he would just smile and point to me - Out came the planner! I hope the information helps others. Paula
  • Terry_s wife
    Terry_s wife Member Posts: 21
    #5
    slickwilly said:

    terry's wife
    What a great post from an amazing caregiver. So many people are in shock from the cancer diagnosis that many issues are not thought of. You are truly an inspiration and teacher to many about being proactive while dealing with cancer and its side effects. The best decision your husband made in his life was when he married you. You have so much to offer the caregiver section of the discussion boards and I hope you will stay around and offer advice. Nobody has all the answers but you have done things I have never seen on here before. Slickwilly

    Thank you. I think we both
    Thank you. I think we both made a good decision even though we had our moments - Terry was 12 years older than me and at times it made for interesting conversations! For example, I was starting kindergarten when he graduated high school! That sounds bad but I wouldn't trade a moment I had with him. He accepted me with a 3.5 year old and adopted her when she was 12. She is so much like him it is scary - his temper, his disposition - especially since they aren't blood kin. I was serious in my post, I will help any way I can just ask. Thanks again. Paula
  • Craig_Griffin
    Craig_Griffin Member Posts: 52
    #6
    Thank you
    Terry's_wife, Thank you for writing your story. I was originally diagnosed with throat & neck cancer more than 1 year ago, and was given a 50% chance to live. I appreciate hearing about your support, knowing that my relatives who supported me through all this were never quite ready for it all, but helped as much as possible. Some friends hung up the phone on me because it was too much for them. One of the most helpful things anyone can do is rely on the help and support of others. I admit that for so much of this last year- that when I had nothing left to give, it was the medical staff and my family that got me through. I am certain that you know what they went through. Miraculously I have recovered and I am quite surprised. Somehow this csn site helps me deal with the experiences of the last year or so. I hope that it can help you too.
  • RoseEm
    RoseEm Member Posts: 32
    #7
    Craig_Griffin said:

    Thank you
    Terry's_wife, Thank you for writing your story. I was originally diagnosed with throat & neck cancer more than 1 year ago, and was given a 50% chance to live. I appreciate hearing about your support, knowing that my relatives who supported me through all this were never quite ready for it all, but helped as much as possible. Some friends hung up the phone on me because it was too much for them. One of the most helpful things anyone can do is rely on the help and support of others. I admit that for so much of this last year- that when I had nothing left to give, it was the medical staff and my family that got me through. I am certain that you know what they went through. Miraculously I have recovered and I am quite surprised. Somehow this csn site helps me deal with the experiences of the last year or so. I hope that it can help you too.

    Caregivers are angels
    My sister-in-law also kept spreadsheets of drugs I was taking, for what, when started and stopped. We kept a separate medical history. You are absolutely correct in that you can hand them those documents and not fill out the same forms over and over. It was so great to have that when I had to be taken to emergency. (We kept everything in a bright orange binder. Before leaving for any appointment or run to hospital, the question before leaving the house was always, "Do you have the binder??")

    Also, on the tax/financial end of things, she started a spreadsheet to compare claims, what I paid, etc. Came in very handy when hospitals, doctors tried to tell you you owed additional money.

    One thing you didn't mention (or I missed it) was a portable recorder. It was invaluable to us. Three of us could hear the same doctor and on the way home, we'd have three opinions as to what he said! We referenced those tapes many times. Only one doctor during a hospitalization had concerns with it and he came around.

    My brother and sister-in-law gave up 7 months of their life to care for me. They live in another city and would alternate weeks coming to my home. There is no way, no words to thank them. They are a big part of why I'm still here. We all learned so much during the journey and most of all, I learned what true love and faith are.
  • mwthrasher
    mwthrasher Member Posts: 1
    #8
    Terry_s wife said:

    Thank you. Feel free to
    Thank you. Feel free to share. When Terry was first diagnosed we had no idea what was to come. It wasn't like you could run to WalMart:-) After his surgery we were given a packet of info. and literally 1/4" thick of websites to scour. One thing I didn't mention before which we found really really helpful was to develop a rapport with your pharmacist. Terry got relief with a product called "Hurricane Spray" and our pharmacist kept it on the shelf for him. HS is the spray version of what the dentist uses to deaden your mouth before giving a shot. It's about $40 a can but worth it! When I got the one they had on the shelf they immediately reordered. I am a very organized person and what I posted worked for us. It got where when someone asked him a question he would just smile and point to me - Out came the planner! I hope the information helps others. Paula

    Products
    I had throat cancer in 2007 and finished treatments on December 31, 2007. I was amazed how good I felt for the first 8 months after treatments. Now, 15 months later, I'm beginning to have a lot of problems with sores in my mouth that are very painful. I thought the treatments were bad but this is really worse because it is so difficult to eat. I was glad to hear of a spray that might help with the pain. I now use what they call Magic Mouthwash and it works well but it doesn't last long enough for me to finish a meal. I was really surprised that there are so few products on the market for the side effects of treatments and of the cancer. I got very little help while going through rad treatments and chemo and then I realize that most doctors don't even know how intense the pain and nausia is and I don't think all of them are familiar with or they are too busy to check the products that are out there and some tell you to just tough it out. Yeah right!! So far I'm cancer free but live in pain everyday. There needs to be more research and developement of products to help people survive during and afterwards. Life is hard enough without having to live in constant pain.

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