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Reply by Marymary
09 May 2015, 7:31 PM

Melinda - you went through so much, I didnt realize all the #s 1 - 18 were all related posts, but I have been reading your story over time and I have to hand it to you Melinda you had a lot to deal with and kudos to you. Im sorry for all the losses in your life, your daughter, your stan. but I am real proud of how you handled it all.   I know weird proud when I really dont know you but yes Melinda - you are one special lady, courageous, brave, strong person and I thank you for sharing a portion of your life on this site.  I for one am appreciative of your posts they do help me and we are just starting off at beginning of our cancer journey. 


It is my sons dad who is going thru cancer we have not been together for 15 years but are still close, everyone we know has always been amazed at our relationship, we do all holidays together, vacations all staying in same hotel room etc., we get along really well, always have.  Like someone said you guys are the epitome of exs lol.  I will be moving out of my place to move in there so I can help, they are both (my son and his dad) accepting of this.  At the beginning 1 month ago no not really but now yes.  Im kinda angry well moments of anger im changing my way of life to be there for him well moreso for our son (18) and he doesnt seem to have much respect for what im sacrificing for him, he gets mad he is the one going thru it and I agree but we all are together.  He has up days then down days, he is critical he just openly admitted that thurs. nite, said im dying which he never said in last month at all.  he is so terried understably you know.


He just found out yes hes doing chemo with radiation his prognosis is poor and may 40-45% he is terrified and just wants to get the ball rolling.  I am lucky the minute we saw radiation doctor he stopped drinking alcohol., not that he drank every day or anything but nope not even a sip.  He stopped smoking cigars after his kidney cancer which is great but they are both on my case now because I smoke., Im trying but its hard.


Like I remind him lets just deal with today lets only think of today one day at a time and hey today is a good day!!! It is sun shining its a beauty day out there and it is a good day!!!


thank you again melinda - i appreciate you sharing your most difficult time of life, i honestly do.  You are helping and Im sure your posts will help others who come along down the road.


TRACIE too - thank you for all your posts too, you two became fast friends and that is a wonderful thing, hope you two still keep in touch.


thank againWink

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16 May 2015, 2:04 PM

Hi Marymary,

Such wise advice to take it one day at a time. How are you doing today?  
Colleen 
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Reply by Marymary
16 May 2015, 9:17 PM

I'm doing ok actually, Wayne (son's dad) is doing better than I thought he would which helps.   I so apprecaite you asking feels like a warm hug.  
It's so funny, no one asks., no one phones weird hey., someone close in family has this diagnosis and the way eevry one reacts is like it is some kind of contagious disease.  I find that so weird.,  when they first find out oh if you need anything you we're here., but yet no one phones just to say hey., how is it going?  No one., I find that so bizarre.  I'm just leaving evryone be, if they call - they call if not oh well.  One friend actually called me Fri to say just wondering how it's going.  So that was so nice it was.,  I am just kind of shocked more about family than anyone else actually - I just find it weird.  They'll text me and ask how is he doing, or what's going on & I say why don't you ask him?  I do give a he's ok but give him a call he'd appreciate it but no one has.  I find it all so strange how people react but can't take that on either I do know that.  except for the one friend no one else has called me at all in a month, not even my own family.  I do have a lot of friends well thought I did.Just acknowledging how people's reactions are. 
He did first chemo radiation on Wed., then radiation thurs., friday.,  he does stay in hospital for 3 days due to only one kidney for hydration.  
still frustrated re: forms/paper work etc. but what is - is.  I can't even go there right now so like I say one day at time. 
I have to move into his place and have to concentrate on packing up my place which I have wanted to do all week but haven't had a chance to do so.  I have to be out of here by June 15th so lots to do.
I have to sort what I'm keeping with me, what goes in storage, what is being sold.  He's ok now but in 3 weeks time he will be really feeling the side effects so have to do as much as I can now., but one day at time - too much if i think down the road you know.  So i can do what I can and that's pretty much it.
I so love that you asked and sorry if I come across as whiny or bitchy not way i want to by no means.
thanks again :)  one day at a time
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Reply by Xenia
17 May 2015, 1:43 AM

Dear MaryMary:

I am here to offer you support in your dilema dealing with a loved one who has cancer.

The hardest part of dealing with a loved one and family and friends I found was that at the beginning everyone was very reciptive to our needs, husbands and mine and then as his illness lingered the questions and visits were less.

I wondered why and then began to see that they didn't know how to deal with their own fears of dying and had to back off.  I began to see that they found it hard to see their friend or loved slipping away and they could offer nothing concrete in help and as such slipped further away.  The odd time they called and I was thankful for that, however, like you I turned to CVH for help from others here who understood and knew what we, both myself and husband were going through.

John passed away January10, 2015, and at first I had many calls now fewer and fewer. I have learned to take it one day at a time and am glad that John did not really care if freinds called.  He was grateful for our family, 1 son and 3 daughters and two sons in law and a grandson who came faithfully to visit and showed their love.

I wish you all the best in your move and as you support your loved one you will find the support you need to help you through this journey as we all have.

All the best

Xenia 
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Reply by Marymary
25 May 2015, 7:53 AM

So as you know my son's dad has Stage 4B throat cancer and is doing 35 radiation treatments with chemo in there too., he has completed 8 so far  & I'm thinking he is doing ok,  better than I thought.  Still a long way to go I know or feels like it.
I am unsure of how I feel., people were not talking and now there's quite a few who are now asking I get so much feed back about this situation - i try not to think about what others think you knwho have come forw. just shocked and didn't know how to deal with or talk which is ok.  
But now, seriously no one's business really but I am going to be moving into my son's dad house to help out be there for our son and him, and people are like holy that is quite something. treating me like I'm some kinda saint or something you know - I don't get it but at same time - I just dont see the big deal.
My son's father who is my EX of 15 years., we have always been close due to our son, we do all birthdays, xmas, vacations etc. together, we haven't lived together for 15 years.  We get along really well moreso than a lot of EX's., which we have always gotten feedback on - like we don't see ex's act the way you too do., last year I threw him a surprise birthday., and I was his main contact person for dr's/nurses when he had kidney cancer & in ICU for 2 months back in NOV/13.  
So he has cancer again and will need help at the house our son is in Grade 12 & it is crunch time for him right now and will also be working in construction for summer so he has a lot on his place right now as well as his hockey, girlfriend, graduation etc., right now .  
So I am moving our of my basement suite and will be moving in with him., to take care of him, be there for my son too., it is a choice I FEEL is important moreso for my son to support him and be there for him #1 so he does not have to deal (lack of a better word) with his dad all by himself while he is so ill or will be so ill.  Yes his dad will require to help out in all areas., so it all works out better this way, makes sense.
Last time he had cancer I saw my suite twice for 15 mins each time in 4.5 months so paid for a place I did not even live in., so that is why it makes sense to me this time - you know. 
Every one acts like I'm some kind of angel or something., I kinda don't like the way people are taking this., take me of the pedastel please - am I wrong in this., I don't get it - I seriously do not get people.  I am doing what needs to be done period - no one would allow a injured person or animal be on their own - would they?  I may not be expressing myself clearly here.
Maybe I'm just frustrated or ???  I so don't want to move but feel I have too and I'm resigned to it now and accept it now period.  (took me a few weeks too) 
I have felt which only a couple of people know - is why do I have to up end my life for you - why?  You dont have family or friends and that is not my fault - so why should I do this?  These are fleeting thoughts., but they come and go., I am human.
i do it because I care and love and have compassion and feel a strong sense of duty ? maybe wrong choice of words not duty hmmm.  No one wants to see another person in harms way or hurt or sad etc., no one wants to see another being suffer period & that moreso than anything else is why.  But do I have to explain myself to anyone else - noI do not.
I may sound like a "B" but I mean I don't have to explain myself to others because I'mmoving inwith my EX while he's going to be going thru & dealing with treatments and hopefully gets better - you know.
Thank you for listening to me hash it out here :)  I do what i NEED to do for me & my son., we are his examples in life why not do it right

LOVE the saying - hey it's none of my business what you think of me lol

 

 

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Reply by KathCull_admin
30 May 2015, 3:52 PM

Hi MaryMary
It can be so good to write down what you are thinking and feeling - somehow it is like cleaning out a closet - you can see what is there + remove some things you no longer use or need and be reminded of what you have and can use. Hope that makes sense! I thought of that after reading your sentence 'I do what i NEED to do for me & my son, we are his examples in life why not do it right'.  In that closet of life - you are doing what you need to do.

I think it's a wonderful example for your son - how despite differences you can care for another. What do you think has shaped you in this way Marymary? Who do you think influences you?

Katherine
ps also - does the 'closet analogy' make sense to you? My husband often says if it is a mist in the pulpit it's a fog in the pew! 
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Reply by JennJilks
30 May 2015, 5:54 PM

MaryMary, I journal all the time. It helps. Also, when I want to remember how the last MRI, CT Scan or whatever went, how long, etc.

Xenia is right, people cannot come toterms with witheir own mortality.
I think I just invented a word! 

You do what you think right. I find having the language with which to respond is a help. 

When people interfere, "Thank you for sharing your opinion."
When people say you are a saint, use broekn record, and change the topic.
"I'm doing what is best for all of us at this time." or whatever you figure is a neutral response.
We're looking, perhaps, for weeks of radiation, and I'm not thrilled. People have been kind. 
"I just do what needs to be done."

 Take care.
JJ 
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Reply by Xenia
30 May 2015, 7:49 PM

Dear MaryMary and all:

Katherines advice about cleaning a closet of thoughts, pain and all we have in our minds is what I have to do and am doing slowly.  I regress daily as sometimes I am angry and I do not know with whom or what.  All I know is that I keep asking the question why and then I remember someone saying, who had a very tragic event in their lives, why not me.

When John passed away, like you I had many people calling during his illness and then slowly as time went on and John's illness became palliative and of a longer duration people backed off.  Support from the family was excellent and so we carried on.

My youngest daughter heard or saw a poem by John Updike:  Called Requiem and sent me a copy and it was exactly what I felt and what happens in ones life, especially if one is older and passes.  I am sharing this as so often we do not know the feelings of our loved ones who are going through the pain of a terminal illness and do not speak of their feelings.

Requiem, by John Updike

It came to me the other day:
Were I to doe, no one would say,
"Oh, what a shame! So young, so full
Of promise-depths unplumbable."

Instead, a shrug and tearless eyes
Will greet my overdue demise;
"I thought he died a while ago."

For life's a shabby subterfuge,
And death is real, and dark and huge.
The shock of it will register
Nowhere but where it will occur. 

I was truly surprised that our daughter understood that the passing of her father while all the while was painful and sorrowful to us as an older man the words from friends and family seemed trivial as most would say:  He had a good life, he lived a long time" and we would smile and say thank you even though we were hurting.

As our friends statements after the memorial we talked and realized that we too often offered the same words of condolence because we did not know how to express to the grieving family the loss they felt and we too were looking inward at our own vulnerabilty and our elderly loved ones lives.

Please keep in touch as this is where you will find understanding and sharing helps, believe me I for one could not have gone through the 18 months of home palliative care if I did not have CVH to help me through the days and the very long nights with my thoughts and tears.

Take care

Xenia
 
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Reply by JennJilks
31 May 2015, 11:22 AM

Xenia, you must be so proud of your daughter! I am of mine, too. Her late father dropped of a heart attack at her feet. He was having chemo, having had radiation, and post colorectal caner surgery. She was so good helping him, as were his sister and my son (despite living in Vancouver). She gave him CPR, but it didn't help. Her stepmother has dementia and didn't know how to dial 9-1-1. 
It's taken her time to recover, but she has. My 2nd husband had just had his surgery to remove his canerous prostate. It was quite a time.

Mary, take good care on your journey.  I love Xenia's poem.

Anger is an interesting emotion. I find I still get angry, post caregiving, and it's often when I trip, or accidentally hurt myself. Why am I being punished, I think. Then, I realize. It's just an accident.

Emotions are not wrong, they just are. Examine them, take them our of the closet for a moment, and let them go. That's my 2 cents! This is called Cognitive Behavioural Psychotherapy. I was just about finished my M.A. in this (only two more courses) and I quit. I couldn't take it any more.
Carry on, do your best, that is all you can do in the moment.
jj 
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Reply by Marymary
31 May 2015, 7:16 PM

Thank you so much JJ and Xenia!!!


JJ - closet metaphor yes makes sense - said very well I get it and thank you for the words.  Yes moment by moment - day by day.  thanks


Xenia - love the poem - yes you must be so proud of your daughter - that is alot for your daughter as is my son who is 18 yrs old.  He has seen a lot in his 18 yrs and I'm quite impressed with how he is handling this all as your daughter too, they are stronger than we give them credit for and they are our future, they will be able to helps others down the road too.


I am just at a loss for words for some people but then again I have so much to do and take care before I can even start care giving for wayne (son's dad), when I move in.    packing / moving it's great like a spring clean up but then again I also get melancholy thinking that I am not going to be living on my own anymore, kinda like my individuality - my independence some how is gone?  


Weird but quite emotional, what I'm keeping, what's going in storage, what is being sold.  They are just things, material things big frigin whoop - you know.  I am quite spiritual and I'm not a materialistic person - so why is packing up/selling things so bothersome to me - I am a hell of a lot stronger than this - I don't cry at a drop of a hat., i am who I am but yet again - I find that no I am not, who I was - I know probably not making a lot of sense to you all.  Emotions we all have them and they come up at the darndest time.


I love life, even through all this, moment are memories, live in the moment., cherish them all.  Live for today!!!  I can't and wont think about down the road., it's too much., too overr whelmingI have to for my own well being think of today and only today, is that delusional - NOT for me, it's not.  I have to be at my utmost for our son as well as for wayne so having tears while I pack is perfectly ok., i'm doing so while i'm not with anyone around just me.  I feel great after doing so too.  Release - healing - all good.


I think with the the packing up/selling things is like life, some people pack away bad memories in their mind and the selling things is getting rid of things you no longer need., putting things in storage - putting thoughts away for now and will deal with later - I think that is why I get so emotional., bcuz my son's dad has so many things packed away in the recesses of his mind.  The storage he puts things from long ago in the shed or where have you cuz he doesn't want to look at every day but he knows they are their, even though he probably won't look at them again - I do know him so well.  I think that is what bothers me most about this packing up/selling and storage thing - I'm applying to his life as well as mine - strange huh what we do and go through - triggers I suppose.


We will keep on keeping on - keep calm and carry on.  DAY BY DAY - best thing right now 


It'll be so muich more easier and calm once I have moved in their - so yes one day at a time


Big hugs to all of you for sharing & I so do appreciate & honor you sharing your journey of life and how you have and do cope and we are all in it together - life as we know it.


HUGS 

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