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Mike's Update

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Hi Everyone,

Since it has been awhile since I have been on here but as those of you who have followed me I am sure you can understand why. Mike is sleeping at the moment so I thought it would be a great time to catch you all up.

This past weekend we had all the kids over for a visit and when Mike took his normal nap, we all sat out in the backyard so I could update them on how things were going since we went on hospice July 4th. Each day I see the changes in Mike and I know that each night when I close my eyes for those few hours of sleep brings us closer to the time when we no longer have the ability to hold onto him. We are now on the pill form of morphine 15mg 3 times a day which is extended relief, supplement with 0.5ml liquid morphine for break through discomfort, 1mg of ativan along with 0.5ml morphine at bedtime. Mike no longer is able to sleep through the night and takes 0.5ml of the liquid morphine sometimes twice a night. I got smart and brought up two syringes to put by my bed instead of running down in the kitchen tripping over my own feet on the carpet. Oxygen is now pretty much 24/7 which brings comfort in breathing and he sleeps more during the day. He is still eating by mouth what he can but he is starting to show little desire in food and we now go every two weeks for throat stretches until they can't be done anymore which I know the time is coming soon. Making the trip to the hospital for 3 hours is starting to takes it toll on him.

Now I know what everyone is thinking after reading all that but I want to share you something that my three boys said in my backyard and that is this, "Mom, you would not believe the sense of peace and tranquility when you walk into this house since Dad went on hospice." That statement brought me to tears for it confirmed deep in my heart what I knew what was the right thing to do, as difficult as the decision was to make let alone think about it was putting Mike on hospice. That our entire hospice team has supported every single decision we have made and that because of hospice Mike CAN HAVE the things to make him comfortable that he would not be able to get if we were still going through treatment. Mike as he has said many times that all the prayers that have been said for him were not for him in respect to curing his cancer or going through the treatments that made him sicker than ever but rather those prayers were to lead us to find peace with his dying and that he can do so with honor and dignity. That alone has brought great strength and comfort to Mike and our entire family.

We are all connected in some way or another because we are here on this site. Our stories will forvever remain with us whether they are ones of saddness or joy. The key is never stop talking about this disease because awareness needs to happen so hopefully our children will never have to be in the place we are today. When hospice may become a topic of conversation, please don't fear or shut it out. Yes the decision is extremely difficult to make as many will see it as a sign of giving up but that is farther from the truth. It is about taking control of things while it is still in your power to do so and its about reducing pain. Mike is not in pain and that alone to hear and see makes all the difference in the world and hurts just a little bit less. 

Ladylacy
Posts: 457
Joined: Apr 2012

Thank you for the update on your husband.  Have been looking to see how things are going.  Thoughts and prayers coming your way.  Be sure you take care of yourself also.

Sharon

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thank you for your note and for all the thought and prayers. They are very much felt and greatly apprcaited. Please know that you and your entire family are in my heart and prayers as well. You also take care of yourself too..that is so important..more than you will ever truly realize until you burn out and crash. I have been there and done that so I am more aware of what I need for my moments of escape. Be sure to find yours too.

Christine

lindadanis
Posts: 267
Joined: Nov 2009

Hi, you do not know me but I lost my husband to this cancer three years ago coming up.  I used to be on this site quite often but took a much needed break a while back, however, I do check this site often to read some of the stories and sometimes reply to people.

I was reading the above post and thought I would send you a message.  I went through the exact same thing with Eddie, the cqncer, the lost of weight, not eating, and then finally hospice.   It is a horrible beast that someones you can beat and sometimes not.

My husband was not so fortunate to beat it since he was staged four with tons of mets when diagnosed.  He did go through six months of chemo and then eventually got a brain met and did radiation which totally destroyed him and we stopped everything.  From beginning to end, he last eleven months.   We were married 25 years that year, 2010, and we did however renew our wedding vows in August, only to him passing away September 15, 2010., a little more than a month afterwards.   It was the best thing that we did.

I know that it's a horrible decision to have to call hospice, we did not want to, but our doctor made the calls and set up everything for us.   We had them a little over three weeks and at the end, Ed died at the hospital due to complications that could not be handled by hospice.   You sound like a very strong woman and your husband should be so proud to have you by his side.   I do remember the way I felt back then, never really leaves you mind, no matter how many years have past, the saddness, the emptiness, the lonliness, etc.   There are some very dark days and nights that you go through and often wonder how are you going to get through another day.   I just wanted to say that we are all here for you, if you ever need to talk to someone, you can always pm me and I will write back.   I had Loretta and Bill Marshall back in my days, they are no longer on this site, but they were both a tremendous help to me along with Sherri, who also no longer writes on her.   Without all of them, I do not know what I would of done because they were there for me everyday, every step of it.

 

I do not know your husband's story, when he got this cancer, how old he is, but one thing I know for sure is we all suffer when someone we love gets it.  Cancer is a family disease, it affects everyone in the family.   I lost my poor mother one week after I lost my husband so 2010 was a tough year for me and my daughter.   We have since moved into a smaller home and life does go on, but very differently for sure.   There is not a day that I do not think of both of them nor a day that I do not miss them.

My prayers are with you and your family during this very difficult time,

 

Sincerely,

Linda

callerid
Posts: 99
Joined: Dec 2012

So glad to hear from you. I have been thinking a lot about Mike and you. I attempted to post earlier in the week to see how you were doing but this site has been acting funny.  And there have been so few posts it as if everyone disappeared.

I am so sorry this is part of your journey now. Your kindness and courage is always so evident in all your posts.. Thank you so much for including all of us.

Take care of yourself. Allow others to help you along the way.

 


 

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I have had some trouble getting on the site at times. I think it is because it is so popular and there are so many of us in the cancer world. Thank you for your thoughts and your kindness as well. It is my pleasure to keeping everyone updated on our journey and if I can help one person get through the day just a little bit easier, than my heart is complete and I am proud to be a part of such an amazing and strong group even when we don't feel so strong, we really are more than we know.

Take care of yourself as well and I have learned to ask for help. It took a bit to realize I was not wonder woman nor would I look as good in the outfit as Linda Carter did but I am grateful for the help and take full advantage of it. What i thought was a sign of weakness is actually a sign of strength..to know when I can not do it alone. 

Take care and thanks for everything.

Christine

Dad'sfight
Posts: 155
Joined: Feb 2013

You guys are always in my thoughts and prayers. Thanks for the update, I've been thinking about you guys.  It brings me comfort that your boys said that too.  Maybe that's how I will feel about my father when the time comes.  I'm glad that his pain has improved, I know that its so hard to see them suffering.  Your  experience and perception of hospice has really changed how I feel about it. Thank you.  He's so lucky to have you, your strength and courage is something I envy.  Your an angel :)

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thank you for the prayers and good thoughts. It makes a world of differene to know just how not alone no matter how much we think we are. Thank you for thinking I am strong but honestly I am not always but I know that I have to put one foot in front of the other in order to take care of my family. People ask me how I do it and there are many times I just have no answer expect to say I just do. We are all strong in our own way and you are too. Sometimes it is hard to see it but you are and when the time comes for hospice, you will know it for you will feel it when you hear what they have to offer not only your dad but you and your entire family as wel. They are there for you too so even if you are not at the point of hospice, it does not hurt to pick up the phone and talk to someone just so you know what it is about. I did long before hospice was even a thought with Mike but knowing what i knew they could do for him made the choice to do it easier.

Your dad is just as lucky to have you as you are to have him. Hold onto that and love him all you can. My heart is always with you.

Christine 

luby's picture
luby
Posts: 6
Joined: Apr 2013

Thanks so much Christine for all your posts about your journey.  You have explained Hospice so well and taken the fear out of it. Prayers and best wishes to both of you.

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thank you for your kind words. They mean a lot and my prayers and best wishes go to you and your family as well. It is always my pleasure to help any way I can and share my journey if it can help ease someone through their journey.

My prayers and thoughts are with you and your entire family.

Christine 

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

Christine,

Thanks for the update on Mike. I think of him often. Those of us that live with esophageal cancer on a day to day basis; and the fear of recurrence, draw comfort from the knowledge that in the event that we need it, hospice is there to bring comfort in our final days. It makes me sad that so many people refuse to consider hospice until they have suffered for much too long. I am so glad that Mike has you to help him through this process.

Continued prayers for peace and comfort for you both,

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

 

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

RKMikulski's picture
RKMikulski
Posts: 34
Joined: Apr 2013

i am glad Hospice is able to bring you peace.  You and your family are in my prayers.

Deathorglory
Posts: 58
Joined: Jul 2013

Hello,

I'm glad to hear that hospice is providing your family with what you need at this time.  It sounds like your family is making the most of what you have.  I wish you peace and hope you create some lasting positive memories for yourselves.  

ernie694
Posts: 8
Joined: Apr 2013

My thoughts and prayers are with you Christine.  I understand how difficult it must be to post updates at this stage but wanted to take a few minutes to reply and let you know how helpful your post is to me.  My dad went onto Hospice on July 5th.  I am back down with him now and I also must admit there is a greater sense of peace in the house now that we are no longer exerting our energies on fighting this beast but focusing on just comfort.  I will include you, Mike and your family in my prayers for continued peace as you travel down this road.

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