Hi to everyone,
Just wondering how all the wives/husband partners out there who is currently or has cared for someone going through this cancer coped with the many changes in their life. I know their is a huge change in my husbands personality, our life and lifestyle has changed dramatically, moods, and there are times I feel very alone, my husband for many months pushed me away and then also because people would say he was lucky to have a caring wife this wasn't true because he also found that side of me annoying. Again I have always been a very caring person and very maternal, but this really at times irritated him. I know he loves me but I feel so sad for the things that have happened and what I now see our future. Since the treatment and everything has finished he is a little better but, we have conversations which he becomes annoyed because I don't understand what he is asking or I hear him wrong
all then he will say I have to start doing my own things again and when I do he is quite critical at times. I know this probably sounds like I'm wingeing but really I just feels this sadness and don't know who to talk to about it. Any advice would be greatly appreciated. Thanks Tracey

Tracy
Hi i would not have been were i am now without my wife who was my carer and buddy

at times and ive said sorry to her on this site

i never meant to make her sad or hurt
her

at the beging i to would get annoyed that she could not understand what i was saying

but believe me i never meant to and im sure you husband does not mean it to.You also get upset at yourself for doing it

you get quite dependant on your wife ,Sue was had to go to work for 4 hours to sort something out ,this was the 1st time in 2 months and i missed her terrible

you both slowly have to try and its not easiy to slowley gain a little independence from each other

my wife as a job interview this week and it willbe hard for both of us to be apart

Sue is busy writing a report for her interview tommorrow but will ask her to post later on this topic

Hope your husband keeps inproving
Dave and Sue

Dear Tracey

This subject is one close to my heart and i empathise with you fully.Robins friends and family have made a big deal about how he wouldn't be here if it wasn't for me and how grateful they are and how they couldn't have done it (because his pre diagnosis personality was cantankerous and difficult)and he hates that.He seems to resent me totally for being here and caring for him.We moved into separate bedrooms three months ago because he feels the cold badly and has to have the heating on all night and this has only served to widen the chasm between us,he is totally absorbed in his illness and never asks if i am ok,how the family are or the children he even resents time i spend on the phone!!In short what you are going through is not unusual and i am reliably informed that in a few months when this is further behind us, that he will step back and see that his cancer actually belonged to both of us in different ways.I spend perhaps 8 hours a day on my own doing a jigsaw or on the PC because Robin doesnt want to talk ,he sits in the lounge all day with the central heating at full blast listening to the radio and sleeping he wont answer the phone and until just recently wouldnt speak to any one rung up.The only time we really spend together is in the evening when we watch a couple of hours television (not speaking) and then he goes to bed and i sit on my own till late.I dont know how or if we will ever come back from this last six months ,but i can only hope that all the survivors who have gone before us are right ,and out of this shell that used to be my husband the man i once knew will emerge again.
David you are a sweetie and i know that you appreciate everything Sue shares with you unfortunately i think you may be the exception to the rule and anger and resentment seem par for the course.

Regards LIZ

Hi Liz
Thanks fo saying im a sweetie

But at times are exactly like Rob i feel anger
despair all things at times

I even suggested seperate bedrooms but only because i was keeping her up all night not because i did not want her beside me

That did not happen

We have both said this is not just my cancer its ours

what i go through being sick emotional etc also effects wifes and carers
believe me that rob will slowley come round and appriciate everything you have done for him then things will improve

i do know when i have said or done something to hurt Sue

But every night or evry other night if i cant talk because of my throat i write a small letter to her (thanking and soppy)

This will be a phase but Rob might need a little bit of help im now not ashamed to say i have asked for it

Thanks liz you have been a ggod friend on here and have helped me and Sue with your advice and tips(just got a spray bottle)

Hope we can de of assistance to you

take care
Dave and Sue

Hi Tracey,

Cancer makes a victim of the family and friends of the patient every bit as much as the patient. It is a life changing and lifestyle changing event. Time does help it is like grief one does not get over it but one just learns to live with it. If you can then continue to make allowances for your husband, his fear and anger, I doubt if he is angry with you, and he will appreciate in his reflective moments everything you do for him: it may be difficult, embarassing or impossible for him to apologise for hurting you. When you see in his face that reflective moment of remorse for his actions say nothing just embrace him ignore any initial reaction to push you away.
We patients can never return to what we were before diagnosis, even if treatment appears successful in giving us back our life, it is frequently at a very extreme cost and the fear is always present that this dammned disease will come back and take a little more.
You need to keep your balance however, and difficult as it may be you must maintain your own life and not become a martyr to the disease that your husband is afflicated with. He needs your support but he must (as I did) learn to live with the consequences and be grateful still to be here, no one can do that for him. My own wife has often said that she would rather die than to go what I have went through, I do not believe her for the will to survive is a strong and a natural instinct. To be dependant on anyone is degrading and erodes one's self esteem, but I think if my spouse had been afflicted and not me I would want to help in any way I could.
Keep your balance by sharing time with other friends even making new friends for there is nothing to gain from you becoming as despondent as your husband may get from time to time. Encourage him to lead as full a life as his problems will permit and do not take no for an answer.
Above all do not blame yourself if you cannot succeed, it will not be your fault all you can do is to show the love you have for your husband, if in the worst scenario he rejects your love, then he must face the consequences of HIS action and you must elect to move on, but I am sure that this shall not come to pass, because you will not allow it to! You are not alone as you will see from the thousands of posts on this site, be strong for him but also be strong for yourself, don't try to do it all alone, seek and take succour from your own friends and family. Caring is by definition giving in nature so give what you can but not to the detriment of your own health and mental welfare Tracey. I pray God's blessing on you both and that you will know and understand His Grace and infinite love for you and your husband. Alan

Liz, can i say your post has bought me to tears! Because i can see my relationship with my partner & you must be feeling just the way he did. & i never meant to make him feel that way. I was selfish too. I felt useless as a partner. I resented him for sticking by me cuz i felt what kind of life must i be bringing onto us. I wouldn't let him touch me or be near me. I couldn't bare it! I felt so unconfident with my tubes hanging out of me & my hair falling out, how could anyone possibly love me & find me attractive? I wouldn't sleep in the same room as him, i even went to may dads for a month because i didn't want him to be taking care of me all the time. & i feel ashamed to admit that i was jealous of the fact he could go out and do whatever while i didn't have the stregnth to even bathe myself!
BUT, we're still together. We sleep in the same bed again. We talk. We laugh again. We're (ahem) intimate again. I felt that i just didn't want to be looked after - even though i couldn't do things for myself! But my true frustrations were with me, not him. I just took it out on him because i felt inferior
I'm sorry for the way i behaved. & he's sorry he couldn't always deal with the emotional side of it all.
But we're proof that there is a life together after all this mess!

Michelle
What a moving letter
I know the same frustrations especially eveyone being able to do normal things in fact at times small things.you have a good guy there

Im pleased to see things are good now true love will prevail

Being naughty now wish me and sue could be intimate thats something to look forward to and an achiement

we do cuddle and hold hands still

Hello all

By coincidence, I have just been reading an article titled "Life after cancer: couples' and partners' psychological adjustment and supportive care needs" in Supportive Care in Cancer, Volume 15, Number 4 / April, 2007.

quote:

The highest domain of need and unmet need in partners was relationships and in survivors was existential survivorship, indicating that while relationship needs take precedence for partners, needs regarding living life as a cancer survivor dominate for survivors.

I think it helps if we understand (but still not easy to live through!) the differing psychology. Each needs supportive care, but who will care about the carer?

I am hoping to put into place this needed support, staffed by trained psychotherapists.

Best wishes
Vinod

Dear Liz,
Your words made me cry, it was like reading my own story on how it has been, word for word. I really thought it was only my husband who had changed in personality, but I can see now everyone shares this problem. Alan your words were lovely as well, thank you so much for your kindness and understanding. Dave and Sue you are both such a inspiration for all of us, I can only hope my husband and I get back on track as well as you both have. Chelle how must your partner love you, to be so patient and kind knowing you wanted to move back home that is true Love for you. Vinod I have asked myself on many occassions when I have been very alone "Who Cares for the Carer"? I have felt this loneliness so bad since all this started. Darrel has always been my best friend and that lately has been taken away from me and you feel so lost when that happens! Not having family members close by and friends scattered it was hard when sometimes all I wanted was a cuddle as well. When our children came to visit I did steal some hugs!!
You will all be pleased though tonight I started art classes, don't know if I will be any good, but being their with beautiful soft music playing, lost in the painting techniques meeting some new ladies, it will do me the world of good to try something so new. Thank you all for your words of wisdom and Liz I really understand your pain as well, thank you so much for sharing with me all of you. God Bless, Trace xx

Well done Tracey, you are helping yourself but because you will be stronger the byproduct will also help Darrel eventually. You are so far away space but so near in spirit, this evil disease levels everyone to the same plain, rich or poor, strong or weak, spiritual or secular, black, white and every colour in the spectrum!!

You were never wingeing and now you feel better for sharing your pain and we in turn feel better to because we all have our bogeyman on our shoulder and wonder if we are unreasonable. Knowing we are not "different" and others share our experiences is a huge comfort. Alan

Just wondering how you got on at your art class Tracey?
Before chemo destroyed the nerves in my hands i used to paint and draw. It was so theraputic. I miss it so much but i can't hold a paintbrush now

Yesterday was my birthday and my family all pulled out the stops for me.Robins brother Paul turned up at 7.15 am with flowers and a card.I got 3 bouquets delivered in the morning from my Mum,my Son,Robins Sister in Portugal and my Daughter sent me a 2000 piece jig saw that she had made up by an internet company from a picture of my eldest Grandaughter sitting in a field of daffodils.I got many cards including one from my ex husband ,my ex mother in law friends of Robins and even a friend of my Mums.And from Robin....nothing.He watched all the flowers coming,listened to all the phone calls i received,came out with me for an hour and watched HIS friends make a fuss of me and sat uncomunicative in a corner.My family made much more fuss over me this year than they would normally because firstly i couldnt be with them and secondly they guessed it would be a miserable day if they didnt.I have not posted this because i am looking for sympathy i am posting this to try and illustrate just how far removed from me my husband has become,day by day i feel more and more that the journey back is going to be impossible as i no longer have sight of how i can forget what his Cancer has done to me and mine.That sounds very selfish but i bet there is more than one person out there who knows what i mean.
I started out this journey because i wanted Robin to live,i love him and i knew he would never take the journey without me being with him every step of the way.At the end i hoped we would both come out of it better people thankful for a second bite of the cherry.Now i doubt that will ever happen because only one of us looks to the future,the other one is too tied up in the present and himself.

Liz

Liz, this is inexcusable!
I wish i could defend Robin but that really is incredibly selfish! My partners birthday was in November. The week i started R/T & had my last chemo cycle. I did EVERYTHING to make sure they sent me home on the saturday, his birthday, even though i wasn't well. I told them they could let me go or i'd discharge myself! I wrapped him prezzies & did a home made card & although i was in bed by about 7 i made sure he knew he was apreciated.
I'm so sorry he's behaving this way. & i think you're an amazing lady for putting up with it all!

Liz
First of all happy birthday

i dont know what to say only im sure as rob recovers he will realise and you will become close again

It may seem a long way away but as each week passes and he grows strongerhe may realise this

I hope i am right as you deserve it

Happy birthday

Dave and Sue

Hi Liz

Sorry couldnt respond sooner but have been off line. I have been worried about you. You need to have some time off girl or there won't be anybody there to look after him. Can you not get one of his family to give you a bit of respite. You desperately need to go and spend some time away - go and see your grandkids. I know it would be difficult but he must have some one who could take over for a few days. As a last resport, try social services. Perhaps if you have a break he might appreciate you a bit more. And you need to tell him why you need a break.

We know they didnt ask for cancer but neither did we. Although we love them, you are allowed sometimes not to like them.

Thinking of you

Angie