Dealing with the Family

Noneya
Noneya Member Posts: 35
in Colorectal Cancer #1

   Been reading for a long time but first time poster. 57 years old 2 years ago stage3 crc surgery with 1 year Chemo. Let's just say local oncologist is a quack but only option at that time and Me to stupid to know better (trust Me I'm a Doctor). declared cured(never want to here that lie again). Two follow ups Two blood test no scans during complete time of 2 years. fast forward to Dec 1,17 rushed to Er after my Granddaughter's 9 mounth old Golden pup jump up to see me cracking my sternum. After xrays ambulanced to hospital in next state as metastis found in lungs on xray. complete workup of five days inpatient ICU. Found in liver and lungs biggest 5x2 cm no not mm total 5 spots 1 in liver 4 in 4lobes of lungs not operatal at this time. released and sent home to await Dr's in mean time got second opion closer to home at local college hospital that just opened a new cancer treatment center two months ago. Will say even though the Dr lacks any real bedside manner I really like her bluntness. eg( no treatment hospice in two months, pallitive 24 or more.) Started chemo blah blah blah. 

   I've known that I was high risk all my life' worked in hazmat and bio remediation before rubber suits was norm heck major improvement was tyvek coveralls you didn't have to wash each day. While in hospital I came to terms that at best I would have a long stalemate with this. We didn't tell kids till after christmas but now am feeling guilty as they want to help by taking care of Dad. I mean that even at my parttime job working for me. For some reason they think I should quit everything I do and just rest. NOT GOIN HAPPEN yes there are things that either take longer or I need more breaks to get done. My biggest problem is the stress of not being able to get them to deal with it.

 

  My question is how to get them to accept it and get on with their lives, two of the three are now so worried that they are now on anxiety meds. I've woke up from naps with my kids standing over me staring afraid I needed an ambulance. I have a dinner planned for my 2 month "BEST BUY DATE" not expired Thursday of this week. My wife is somewhat better as she understands that telling me I can beat this was setting expectations to hhigh and so we are trying for the 20+ yr stalemate and love hearing about long term people. She's even setting up a web site for crafts people to make trinkets to be given to Cancer Patients and centers as a friend made me a necklace with the mushroom I make tea out of to help me through the chemo. Any other suggestions would help.

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #2
    I'm so sorry to hear what's

    I'm so sorry to hear what's been happening with you. I hope there are some options and that you'll have a good response to chemo. 

    As for the family accepting it, I'm not sure what to say. I've long thought that it's harder on them than on us. Even now my husband has a bird if I sleep a little late. He had a heart attack and triple bypass in September and I feel the same way if he sleeps late. I think it's something they have to come to terms with and there's not much you can do to help them through it. 

    A suggestion for a craft is to make soft covers for seat belts. Many cancer pateints have ports or delicate skin and the seat belt can be very uncomfortable. Another thing they did at the cancer centre I go to is fill bags or small purses with things like a small package of kleenex, crossword puzzle or word find books, a pen, a card with an inspirational quote, lip balm, hand cream, things like that in them. And, of course, knitted hats for people who lose their hair is always appreciated.

    What chemo are you on now?

    Jan 

  • Noneya
    Noneya Member Posts: 35
    edited January 2018 #3
    chemo plan

    cetuximab, leucovorin, 5fu, irinotecan, now with a 2 day pump on 5fu aalso several herbs from India and Native American medicines. Iriinotecan is the hardest on me but the alternitive meds control alot of the side effect and did get a smilefrom the Dr. when she saw the rash on me after just two treatments, said it was working. Told if iI had to go through puberty again I was going to act 14 again. She gave me a referral for another alternitive but since I was in Law Enforcement for many years I haven't come to terms yet will see how this goes.

       As for the family I suggested that maybe they might want to get back to prayer and Church to talk with their Ministers as I believe it's not in my hands but God's and if I'm to take courses of Chemo for the next twenty years so be it.

  • KarenMG
    KarenMG Member Posts: 109
    #4
    I'm with ya

    Definitely I feel your pain. Coming to terms with all this is difficult to say the least. I can't say I truly understand your specific situation, but it sounds like your family really loves you and wants to support you the best they know how. You must really count your blessings every day for that! Not everyone is so lucky.

    I pray the best for you and hope that your treatment works the best it can. I don't mean to sound so generic here but I didn't want to delve into all my emotional mess, I'm going to post on the emotional support threads for that.

    I really do feel for you and wish you were not in this situation, none of us here!

    Take care, keep posting on here for support!

    Karen

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited February 2018 #5
    Thank you for sharing

    My children and husband also struggle so much. I feel your pain. I can't sleep at night worrying about them. Who is going to take over all the stuff we do? I can't imagine. But having lost my own mother to cancer, when I was 26, I know it's possible to continue to live. It took me over a year to smile again though.

    I sincerely hope you, and all of us in later stages, can prove miracles do happen. There are so many survivors on here. It gives me strength daily.

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited February 2018 #6
    Cancer is tough on your

    Cancer is tough on your family. I was upset with my wife over something several months ago and expressed that I was having a really hard time and she came right back and said that, "This is hard for me too." Chemo drugs are awful; but they may be the only things around to keep us alive; even if we don't feel very good while we're taking them. I hope that you can get the level of care that you need to stick around for a long time.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    That's very sad

    I'm so sorry that you are going through this and having to deal with this with your family.  It's not easy dealing with it yourself let alone your childrend and spouse.  I'm sorry to hear about your children that are on anxiety medication as it's got to be hard on them.  My thought is to reassure them that you are going to do everything possible to be able to be there with them many years to come.  There has been much progress in the last 15 years to help colorectal patients and you have a great chance of being a long term survivor.  I'm one of them at 9 years and I'm still here trying to support all of you newbies just because I've survived.  There are people on here that are stage 4 and still helping people.  You are going to be the one that can get upset and frustrated and that's ok, but make sure that you come on this board to express all you need to - we are here to help you get through this.  It's a rough road that's for sure.

    Kim

  • Noneya
    Noneya Member Posts: 35
    #8
    Well we tried something right or wrong

      I had my kids write a short page of what they feared. I then had a dinner that included all the Family extended kids also as my wife and I kind of adopted a couple that are my kids friends or they adopted us. I then showed them that most of the fear was shared by all. I then pointed out that my wife and I shared them also. I then told them We had done our best and they now looked at their support group that anything could be dicussed within that couldn't be shared with others. It went quite late as we discussed things but when we decided to break up the evening, I informed them that as of midnight I had gone beyond the 2 month date I was given by the first doctors so there was hope. My wife was able to inform them that the current Doctor revised the origanal time line to maybe a couple years or more.

      Biggest fear shared by all including my wife is that I accepted it to easy. I just had to remind them that as a Deputy  I had faced my mortality several times and I just had to trust my decisions of how and when to fight. I also had my wife confirm that my Sheriff I worked for was a 30 year cancer survivor, which she had forgot and admitted that if I held on to those times now I was still FIGHTING.

    I just want to thank everyone on these boards as even though I don't write much I do read daily and find insiration to get out of bed even on the bad days.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited February 2018 #9
    Great idea!

    I love that you had a family meeting like that. I may do the same. Congrats on beating the 2 month mark. Not one physician has ever given me a specific prognosis. I get upset when they even suggest how dire my situation is. Not sure how I'd handle specific guesses. 

    Hope you'll keep posting to keep us updated!

    Sending you prayers and well wishes, --Beth

  • Noneya
    Noneya Member Posts: 35
    #10
    Just a quick follow up

     I thought it was hard with the kids but they get to see daily my condition. Just the last week my Parents (now near 80's) showed up bringing Aunts and Cousins with them. Talk about a hard stressful time as they didn't tell us till the day before(also arrived on chemo day or zombie day as we call it now).Mom had to see her son one last time. I contacted my Dr. who had my regular Chemo nurse talk to them the day the pump came off. She informed them that other than a couple blood work test everthing was great that the tumors are shrinking and I being watched carefully by a Team of Dr.s because I kept up with a course of alternitive meds with the chemo.The biggest worry then was about the cannabis use. They were able to see how and when I used it and one of the Dr's showed them what info he had on use. While there he noticed my Dad in pain when he moved his neck and suggested that he try the CBD only cookies I use. After about a week he was turning his head while sitting outside and realized it was working. Dad is going to follow up with his DR and doesn't think of it as an excuse for me to be dopey anymore.( he got to watch me at work). Now after two weeks I think they are relieved that I'm better than at the first of the year. Best part is got Mom toteach me how to cook meals that Grandma use to make. Grandparents lived into their 90's without any traces of cancer. Meals are so much better from home and it gives me something to do on those bad days that takes my mind from me. Even got Grandma's Potatoe Donut recipe, I know fried foods bad but with a scoop of Ice cream they are a great treat once in a while.  And I've lost 60 pounds since Christmas with only 19 to go.

  • darcher
    darcher Member Posts: 304 Member
    #11
    Im almost jealous

      Your family has your back.  I'm not going to discuss differences but I can say I wish I had your support network.   That's a huge plus and benefit. 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #12
    Noneya said:

    Just a quick follow up

     I thought it was hard with the kids but they get to see daily my condition. Just the last week my Parents (now near 80's) showed up bringing Aunts and Cousins with them. Talk about a hard stressful time as they didn't tell us till the day before(also arrived on chemo day or zombie day as we call it now).Mom had to see her son one last time. I contacted my Dr. who had my regular Chemo nurse talk to them the day the pump came off. She informed them that other than a couple blood work test everthing was great that the tumors are shrinking and I being watched carefully by a Team of Dr.s because I kept up with a course of alternitive meds with the chemo.The biggest worry then was about the cannabis use. They were able to see how and when I used it and one of the Dr's showed them what info he had on use. While there he noticed my Dad in pain when he moved his neck and suggested that he try the CBD only cookies I use. After about a week he was turning his head while sitting outside and realized it was working. Dad is going to follow up with his DR and doesn't think of it as an excuse for me to be dopey anymore.( he got to watch me at work). Now after two weeks I think they are relieved that I'm better than at the first of the year. Best part is got Mom toteach me how to cook meals that Grandma use to make. Grandparents lived into their 90's without any traces of cancer. Meals are so much better from home and it gives me something to do on those bad days that takes my mind from me. Even got Grandma's Potatoe Donut recipe, I know fried foods bad but with a scoop of Ice cream they are a great treat once in a while.  And I've lost 60 pounds since Christmas with only 19 to go.

    Good to hear

    Awesome that you continue to do so well. Thanks for keeping us posted. That is amazing that CBD has helped your dad! Just got 2 grams of THC oil from a caregiver today. It is most definitely medicine. 

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #13
    Sounds like you have a load

    Sounds like you have a load of folks loving and caring for you, which is great! I also know how the suprise visit can test your energy and patience, trying to respond or engage family when you may just want to sleep or zone out. Glad to hear things are shrinking, and your acclimated to this new reality, as much as one can be. I wish I could lose some weight, since the Dec. hernia surgery, I'm not sure I've lost much if any of the 35 lbs I was aiming for, work and exercise just making me hungrier could be the culprit. Anyway, thanks for checking in, and foring reminding me to find some CBD form that helps, I'd like to lay off the Tramidol for aches, and that sounds like a better way...........................................Dave

  • Noneya
    Noneya Member Posts: 35
    #14
    Best feeling ever

    Yeah family is deeply caring. Best was a discussion of how parents wanted to name my wife in will as they felt after 35+ years she had stuck it out and deserved to be included if something happened to me. Mother relaxed when she saw I was fitter than in the last 13 years( lost 60lbs ). Good to be able to teach comfort meals to kids from Grandma. Made a batch of medical donuts and brownies today with kids helping to bake as I was having a hard time standing. Off week for chemo but taking longer to recover. Boss hired my replacement but promoted me to Manager something I can do from my bed if needed Boss's husband got a hammock for me so I can be onsite if I'm not feeling good. Yeah it's a heck of a support group. Reminds me I have to start Sunday's spaghetti dinner tomorrow for them all. Wish parents could be here for that!!!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #15
    Wow, even your boss is

    Wow, even your boss is supportive! Mine let me go. That's wonderful and shows how valuable you are!

    I hear you about the difficulty standing when you're fatigued. I was also cooking while exhausted and would have to keep taking breaks to sit down or cut up vegetables whle sitting at the table and things like that. But the satisfaction of being able to make a meal was so worth it. I hate feeling useless. I've always been busy and can't stand being weak and having things done for me. Good for you for pushing through it!

    Jan

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #16
    My kids freaked out. 

    My kids freaked out.  Freaking out is normal.  My mom is 78 years old and has alzheimers, there are days where I completely break down.  You just have to let your kids be your kids, no matter how old they are.  I'm 48.  The thought of losing my parents is horrifying.  My mom is the only person on earth that I can call, and no matter what I say to her or do to her or do in life, she will still wake up loving me the next day like I am sunshine and rainbows.  Losing that person is such a scary, hard concept.  It's great that you are fighting and keeping busy the best way you can.  60 lbs is incredible and skip the treats until you get to the other side.  I'm there and I encourage everyone to just wait until they are cancer free to eat the sugar. I did no bbq, no wine, no sugar and I ate so healthy it would make you want to vomit.  To me treats are for people not trying to get cancer cells out of their body.  It was hard to do but I stuck it out.  I'm also on a weight loss journey now post cancer.    I'm at 27 lbs down.  It's a good way to fight back and feel in control a little bit after such a hard time in life.  I have a lot of pain and medical issues but I just keep on pushing.  I hope you keep fighting hard, you can do this.  

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