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What happened to joy?

Started by Kirstie

17 Sep 2014, 5:16 PM

Hello all. My husband was diagnosed with stage 4 colon cancer, with mets to the liver. This was a "surprise" diagnosis after he was admitted to hospital with undiagnosed stomach pains. After a week, it was determined that the tumour had pierced his intestine and emergency surgery was performed. They got all the original cancer, but his liver is covered in tumours. He had been doing chemo ever since, and is coping valiently. I work full time (40 hrs) and have three teens at home. I have suddenly realized that there is no more joy in our lives. We seem to cope well, get through our days, but I can honestly say I cannot remember the last time I was happy. I want to know how we can get out of the rut. I know that his time is limited and I do not want to waste it being gloomy. I have tried to come out of this rut - but nothing seems to make me happy anymore. We have been on a few short trips, go out to supper as a couple, family events.. I am at a loss...

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Reply by KathCull_admin

17 Sep 2014, 7:53 PM

Hi Kirstie
Welcome to our community Kirstie. I am glad you found us. Other members here like Marstin, Xenia. Oldbat, and Jimmie will understand and support you.

You and your husband have been through a lot in the last little while. From the surprise diagnosis to the removal of one tumour to the liver tumours. It seems that being able to put one foot in front of the other for both of you and your children is more then enough.

Are you working now Kirstie? What support do you and your family have?

Katherine

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Reply by Brayden

18 Sep 2014, 2:36 AM

Dear Kirstie,

I can understand how just coping does not bring joy into your life. Have you reflected on the things you did before this rut, both by yourself and with others? You may have to find a way to get back to those things in spite of your new agenda. It is really important that you find time to do some self care, as you cannot go on with just looking after others. You may have to seek help beyond your three teens at home. You can rest assured that things will not improve and you have to manage your energy. If you give out, everyone will feel the pain. Please keep in touch here as many others are ready to support you as much as possible.

Brayden

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Reply by Xenia

18 Sep 2014, 2:59 PM

Good MOrnig to all and Welcome Kristie:

Like you I too felt that there was no joy in my life for a long time after my husband was given a 6 months to live diagnosis. My husband does not have as serious a cancer as your husband so my struggle has been long and protracted.

Try as I might to find some light into my feelings I had to take a good look at myself and get more proactive and talk to others who were going through or had gone through this time of no joy in their lives. Virtual Hospice and the professionals gave me a lot of insight into my own feelings. I could not take on my husband's feelings as it was too much of a burden. We do not have teenage children and this must be trying for the family.

As Brayden stated look at what you did as a family before this diagnosis, is there someone, somewhere you went to during the happier times. It is often sad to go back in your memory to remember the good times, however, it appears your husband is taking his illness in a positive manner and valiantley as you say so perhaps you could talk with him and remember the good times, hard as it may be. Is there a special place you both visited perhaps this could be revisited if he is capable, the visit may be bittersweet but it will bring joy to you. I had to do this with John, we are married 58 years, a lifetime, and I had lost a lot of joy just caregiving and trying to protect the family and myself from what was going on until I read the emails on this message board and found how to help myself and the family though being able to express my frustrations, anger, cares and worries to others and getting feed back from them.

Your teenagers may need to speak to a counsellor at school or if you have a physcian who can speak to you as a family. I would imagine the children must be walking on egg shells as they know dad is very ill, mom is the caregiver, we don;t want to tip the apple cart with our concerns etc. They may be over reaching in not discussing your husbands, dads' illness, as they too are afraid and don;t know how to express their feelings and are afraid of causing you more worries.

Please keep in touch and express your feelings without reservation as we are here to help you in any way we can. We are not trained counsellors or such, however, we have, are and have gone through the turmoil you are going through and sometimes joy can be just a song, a sunset, a rememberance of your good times shared with husband and children that you keep in your memory box.

Take care and hugs to all.

Xenia

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Reply by jorola

19 Sep 2014, 10:52 PM

Hi Kirstie,

When my husband Mick, was diagnosed with lung cancer in April this year, the world stopped. At the time we were not married and had been together for almost 9 years. Both of us had never been happier or in so much love. we laughed every day loved each other and enjoyed a simple life. I had a sucesful job, we had my two boys (truly good kids) at home and nearing adulthood. Mick's daughter had given birth to our first granddaughter. When the diagnosis came all i could do was to curl up in a ball and cry. Mick was the one comforting me. I never been so depressed in my life and i have dealt with chronic depression since i was young. So i get the absence of joy in life after cancer comes knocking.

Now we are married, laughing again and enjoying life. How did i get from there to here? It was multiple things i had to do.

One was i visted my psychiatrist more and talked about how i was coping and how to cope better. I also had an increase in my medicattion to sleep and help me cope. I talked with my best friend. I talked on here. I talked with others who had been through the same thing. Most of all i fought. I fought the want to lay down and give up. I fought to get back the life we had before regardless of the death sentence hanging over our heads. I had to kick my self in the butt many days and force myself to get going. most of all though we talked to each other. About our fears, our hopes and the hard stuff - planning for future- the good and the bad.

Little by little i took back my life. We all started taking back out lives back. This did not mean i didn't still have moments. sometimes i had to have time to myself and just let myself break down. sometimes we did it togther.

Like you i did not want whatever time we had together to be gloomy. Mick is a very strong man and a very strong sense of humour. There is no doubt his strength is carried us as well.

Kirstie it is not easy but you can do this. Reaching out is a great first step. It doesn't happen overnight but it can happen. Believe in yourself - that you have the strength to do what needs to be done. That and start small. I believe it is the simple joys in life - teens being goofballs, the family pet loving so unconditionally. When was the last time you had a nerf gun fight? Awesome times :)

Hang in there. Come talk to us - all on here want to help support. sending strength your way

Jodie

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Reply by Digger

24 Sep 2014, 3:56 PM

Kirstie,

You, your husband and kids are on a very special journey together. There are no easy words or simple fixes to be had.

Despite the diagnosis and treatment your husband will not die from the cancer, he will die with it. The cancer is like a taxi to the main event – which is the dying. Once he metaphorically steps out of the taxi and engages his dying then everything changes.

The promise of more treatment is often the promise of more time, not always quality time. The challenge is to make the best use of the time you have right now. This might mean saying no to further interventions that prolong dying.

Forget coping or trying to get out of a rut. Neither leads anywhere. Plan for a home death, if that is possible. Talk about the dying with your husband and involve the kids. Ask him where he wants to die and what he is most afraid of. Doing these things now will help you and your children later.

Your husband has much to teach you, and all of us about dying. You support the journey by walking with him toward the dying. It is an honour to do so.

Dale

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Reply by KathCull_admin

25 Sep 2014, 2:06 AM

Dale,

As you say there are no easy words or simple fixes.

A tag line for the Discussion forum is, “You’re not alone.” One of the things I love about this forum is that members walk alongside each other - we listen, support, and sometimes offer advice without telling people what to do. We help them know they are not alone. A member, Angelefish, wrote, “I don’t feel so alone knowing others have or have had the same feelings as me. It makes me feel less crazy and more normal…”

Thankfully it is not our responsibility to determine what is right or wrong for others. It is tough enough for us to decide on our own behalf, let alone trying to make those decisions when we have a very limited understanding of all the issues, concerns and questions.

Kirstie,
You are asking about joy. Your life, as you have known it, has taken an unanticipated, unwanted turn. Everything is upside down and nobody has a script to follow. Maybe joy will be absent for a time, but it sounds to me like you and your family are doing the very best you can in the circumstances - perhaps being aware of that will help support you in the next days, weeks and months.

Katherine

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Reply by marstin

25 Sep 2014, 5:49 AM

Hi Kirstie,

I'd like to join in on welecoming you to this forum. Although most of us never thought we'd end up here, we are all so fortunate to find comfort in the midst of turmoil.

I think when you first hear the word 'cancer' that it sets off a chain reaction of emotions within you. I can remember feeling so frightened and filled with disbelief when my partner of 23 years was diagnosed with bladder cancer. How could my perfectly healthy man have this terrible disease? For myself, I lost any real interest in life or activities around me and was all consumed with what was happening to him. I can remember Len getting down on one knee to ask me to marry him on Valentine's day and while he waited for my answer and our daughter's stood by ... what I really wanted to do was yell no! I was so angry. Not at him but at the circumstances. I felt so broken and just wanted everyone to go away. I did finally say yes but I think everyone was disappointed at my delay in answering. I know I made no sense to anyone, not even myself.

Have you been told that your husband is terminal? If not, then there is still a chance that he will beat this. I think that it took me awhile to accept that Len might lose the battle and then I went into a kind of auto mode. I can't say that I was able to be happy but in time I accepted that life as we knew it, would never be the same again and was able to dedicate my time to making him comfortable and well cared for.

How old are your kids? Our daughters were 20 and 22 at the time and were so very frightened. When we brought Len home for his final days they helped with administering his medication and spent a little more time with him while he was still able to carry on a conversation. I don't think any of us had ever felt so close to each other as we did at that time. How are your children coping with all of this? My girls both dealt with it so differently. One would talk about it a lot while the other would just close herself off in her bedroom or go out with friends. Are you finding this? This is a very difficult road to travel but know that you have found a place to share the load. We are great listeners here and will help you through this as time goes on.

Hugs,
Tracie

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Reply by Xenia

25 Sep 2014, 3:32 PM

Good Morning All:

There are many message boards I read and email to and with, however, this one came up on my email and I needed to vent this a.m.

John, husband, is not doing well and I am weary. Spoke with our son, John Jr., and he said to me death is easy, it is the dying part that is wearing both you and dad out. Yes, this is so true. I could accept John;s death as part of life, however, his dying has taken place a year the end of this October.

He was given 6 months to live and it appears that there is disbelief from our friends, family and co workers that "I don;t think your dad is dying", therefore we have taken care not to speak of his condition and only to close friends who understand and to family and even then it is hard to have them understand that John's body will not let him die. We don;t want him to die but we see he is tired even though he does not compain.

Yesterday, I had planned to go the pool with my friend who was in town. John had a very bad turn in the evening and I was up with him most of the night. Gave him his extra morphine to help him breath and massaged his arms until he went to sleep. In the morning he asked me "Did you rub my arms last night?" When I told him I was going to the pool he asked me, the first time in our marriage that I can recall - 58 years, don;t go. So, I cancelled my pool visit and the respite caregiver came and looked after John as if I was not here. Had a rest at home and at lunch, first meal in two days for him, he said to me "I'm glad you stayed". He told me that he has been having wierd symptoms more frequently and that he feels he is choking, his mouth is dry and his is floating. I presume this is part and parcel of his meds, his condition and his body wanting to shut down. All in all he is happy to-day, nurse is coming and we will be discussing his symptoms, etc.

I watched the movie "Away from Her" Canadian actor Prentice and Julie Christie. His wife has alziemers and how he saw her leaving him, body, soul and mind. This is somewhat typical of caregivers. We see our partners leaving us slowly and this is so difficult to watch. I try not to watch too many sad movies but this one interged me as it took place in Norther Ontario and was so typical of the families dealing with the demise of a loved one both at home and in care.

Enough of my sad talk. Taking it easy to-day, it is raining and fall has set in. The leaves are turning and I see the geese flying in large groups this morning. Even though we live in a city the geese come to visit our pond and travel to the Fraser River.
Have to clean off the patio for winter and son is coming over to take down a planter that has seen better days so hope for sunshine on Saturday.

Best wishes to all on this message board and keep messaging as we all, and myself especially need the support and understanding of all.

Xenia

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Reply by NatR

25 Sep 2014, 5:20 PM

Hello to everyone on this thread. I wanted to reply to Xenia - your note touched me, your patience despite the long process you are watching John go through - your cooperation when he asked you to stay home despite respite care being there.

xenia it was a big thing that you gave john - but after this period of your life is over - you will be eternally grateful that you gave john so much comfort and support.

he is letting you know his fear, he can sense what's going on inside his body as you cannot
you gave peace of mind by remaining at home . What a kind loving wife you are - it's a shame we cannot hug each other but I send you a giant hug with this note.

your long endless seeming year this October is almost unbearable when seen from the inside of your daily life as a caregiver
do not feel guilty, do not feel shame or disappointment in yourself.

When john has both body and heart in the same place - then things will fall into place as this journey comes to it's destination

i have not walked in your shoes Xenia but I think of you often and your daily care and love to john.
i do hope that as your son said - the difficult days will soon come to a conclusion that gives both you and John a final peace

I have no answers, I only know that you and john have shared a wonderful life and he worries about leaving you - as you worry about him.

keep sharing your thoughts and your worries and I will be here along with others to read and listen, to reply and understand as best I can.

it is fall as you said - geese flying and colours so spectacular in the fields and trees. Maybe and I wish this in a good way, maybe the winding down of Mother Nature will be echoed in your life - and I wish you both nothing but peace and comfort

I wish I could share a tree I saw yesterday, it was golden yellow, burnt orange and various shades of fall - sending you special thoughts today and hoping you know how much your notes mean to me and others I am sure.

Sincerely,

NatR

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