- This topic has 12 replies, 7 voices, and was last updated 8 years, 8 months ago by
.
-
Posts
-
The vast majority of posts that I read are from men. Most of these talk about the help and support they get from wives.
My problem is that I am the wife, and I worry about what kind of home support I’ll have. My husband doesn’t want any part of any decision making… not whether to have chemo or not; not which diversion to choose. He doesn’t really want to know about it. He says, “It’s your body, your decision,” and “Just tell me what to do and I’ll do it.” Honestly, he’s a good person, but I think he’s just scared and this denial is the only mechanism he knows.
But his ‘denial’ strategy has me scared, especially if it’s a neobladder, which is what the surgeon thinks is best. My family (siblings) are all a 2 1/2-hour drive away, and they all work. Are there any other women (or men – sorry if this sounds sexist, but it probably is) who have faced a similar situation?
At the risk of sounding self-pitying, I’m the one who’s going to be going through hell, so why should I have to be the strong one? What’s the best way to solve this problem?
Hi there, I’m “the wife” also and I know what you mean! I believe this whole situation is part of the problem with the generation we were born in. I don’t know your age bracket and I’m not asking, but in my generation, men just don’t do this kind of thing well. Flip that though, and they want the support for themselves. I know from experience that men in the later generation, i.e. the boomer generation for example, are better at being supportive when the wife is needing that support. Its’ not that they’re mean and don’t want to; they just don’t know how because they have never had to do it. As the result, I have become pretty self-reliant or I ask my friends for support. My guy will certainly help when I detail exactly what I need, but otherwise, he’s at a loss. I’m not sure if this fits your situation. If it is, let me know.
Take care.
LorraineHi Saldcorn!
You have raised a valid point. When I was going through BCG treatments, I found that I had to decide what I needed in support and directly ask for it. As mentioned, it isn’t always that they don’t care but they are scared too and just don’t know what to do. I too, have had to be the “strong one” all our married life (36 years). It really sucks sometimes. And yes, he expects me to be there for him when he needs it. My man will help, but I had to give him a detailed account of exactly what I needed. In my case it was mostly help in getting to and from the hospital and help around the house. I also asked him to get me Vietnamese Pho soup on treatment days as I was too nauseated to eat much else. It gave him something concrete to do and I think he felt better because he was helping in the capacity that was comfortable for him. I also asked my hubby to take time off work on treatment days and help with the shopping. Again, the running around was something I was too tired to do and is something that he could do.
We enlisted the help of our youngest (bribed with a small allowance) to help with the house cleaning. This was a win-win for our youngest – he got money that he wanted and it honestly did help him feel better that he was doing something to help mom get better. My line to him was – If you help with the cleaning, I can rest and the more I rest, the sooner I will feel better and we can get back to a more normal life.
If hubby is saying something like “it’s your body, your decision”, he is saying that because he doesn’t think he has the right info or ability to help with that decision. If you need help with that, it would be in your best interest to call the toll free number and leave a message. Someone will get back to you – a patient volunteer and they can discuss that with you because they have walked that road, he hasn’t.
I think what I’m trying to suggest is think of ways that he can help and ask him for that help. Turn to outside resources for anything else. Take care. (((((HUGS)))))
To Lorraine and marysue,
My husband and I had what my sister-in-law would have called a “domestic”. The result was that we had a long discussion and he said that he would be OK with learning/helping with my self-catheterisation and anything else that might come up.
He has finally shown some real support and understanding, and I now know that he has realised what might be asked of him.
That being said, I, as always, am very grateful to know that I’m not alone with this particular scenario. We are both in our early to mid sixties. He was the eldest in his family with three younger sisters and not only his mother, but I also, spoiled him.
Thankfully, I know that he is willing to help as much as he can.
I also know that he will still look to me for instruction. Thank you so much for sharing. I understand that I can’t be married to me (can’t win ’em all), but the two of us have reached a new plateau in our relationship. Thank you.You’ve got love that term “domestic”. LOL! Yes, we’ve had more than our fair share of those in our house but they generally clear the air and in our case we land in a better place.
It sounds like that is what was called for in your situation. Kudos to you. I have a feeling he will do more than his fair share of stepping up to the plate once he knows what he can do. Men are generally problem solvers and when they can’t “fix it” as in this case with you having cancer, it just escapes them and they tend to flounder sometimes.
As a side story – One gent I spoke to who has an IC (the pouch) said he originally needed help with changing and cleaning the pouch, night bag etc. so they had a home care person coming in to help. His wife originally refused because he said that she felt that she couldn’t stomach it. Now after some additional instruction from the home care person he proudly told us she is doing all the changing and has actually gotten quite bossy about it. He loves and appreciates it because his hand coordination and finger mobility is limited due to severe arthritis. You never know. People do learn how to step up to the plate.
As I said before, involve him in what you can and get help from others for anything else. Best of luck going forward. (((((HUGS)))))
Interesting topic, and an important one too. I don’t think there is any really good response to this. It may be that this has less to do with your husband and men in general than it does with the variety of ways people of all sexes ( well the two I know about) perceive and deal with cancer. Cancer is a tough one, for anyone. As a guy and husband I would want to do what’re ever I could for my wife but in reality I really don’t know how well I would do I only know how well I would want to do. I try .minimize my illnesses and BC as a way of protecting my wife so that she is not burdened. I know w she would want me to be fully involved but again, I really don’t know how well I would do. I do the no you are right about your husband having some kind of defense mechanism at play as a way of protecting himself from the pain he. Experiences having to see you go throug this. It’s complicated stuff, we as humans are complicated (except for MarySue!). I would just keep on loving your husband the way he is and develop support from others. Neighbors, family, friends, support groups , etc. I hope there is someone there for you when you need support. We will be here. Thanks for bringing up a very important topic. I think we all need to think about how different we are and how important support is.
Kiowa
You’re right and I’ve been surprised by friends I expected support from, but didn’t get, and by people I didn’t expect support from, but who did show it.
This has all been a learning experience for me and perhaps one of my biggest lessons has been about the importance of showing support.
Yes, Kiowa. People are complex and you never know what kind of life experiences have shaped their responses to situations like this. My husband and I will both undoubtedly be learning a lot about patience in the months to come.
I DO know that I am profoundly grateful to BCC and the people who have shared both their personal experience and positivity.
Some very thoughtful people in BCC and whilst we all deal with Cancer differently as suffers our partners (male or female) will have their own way of dealing with it, My own situation is I am the primary carer of my wife who has disability’s but as a friend has said maybe the roles should be reversed, which will not be possible. My wife has my best interest’s at heart and fortunately does help in so many ways in my support but will not have the final say in whichever way this BC directs me, that will be my decision alone. Sexist maybe not more it’s my body and I will have to deal with it, Saldcorn as our fellow BCC members have said we are a complicated species and dealing with the unknown isn’t something we all handle to well and repeating whats been said some friends rally round while others fear to tread, are the true friends the ones that rally round?
I think some people can handle the situation better than others and an understanding of our own dealings with BC helps a lot, I hope all our partners can learn something from this discussion as there is plenty of food for thought here and thank you Saldcorn for raising it.
Love and best wishes to all,
PaulI too, remember when I was first diagnosed how surprised I was at where support came from. My youngest son’s reading tutor was an amazing support despite the fact that she had lost her husband to leukemia some years before. I thought that it would be too much for her but it was her that gave me some important insights on several fronts that helped me through it. She called regularly to see where my head was at and to make sure that I was functioning okay.
On the other hand, a neighbour that I was a close friend with for many years, whom I thought I could count on because we had helped each other through many emergencies big and small over the years, disappeared and wanted nothing to do with me and still doesn’t. That really hurt but there wasn’t anything I could do about it.
My family was somewhere in the middle. Hubby as mentioned was supportive and things got better once I was able to direct him as to how he could help. My oldest son was good in calling in or on the phone to see how I was doing. My second son couldn’t deal and used work as an excuse to stay away. My third son was living in Vancouver at the time but still called and emailed regularly to see how I was faring. He cheered me up regularly with funny stories and jokes. The youngest as mentioned was and still is living at home with us and was my house helper.
Co-workers were absolutely amazing in their support when I experienced my reoccurrence in 2010. Everyone banded together to cover the hours I would need off. I was worried having just started the job I would be let go but they didn’t want to lose me. I found out later that my supervisor’s sister was going through breast cancer treatment and there were several other people in other departments that were either dealing with some form of cancer or had close family members that were. I think because of that they understood what I was going through.
I also got and still do get really good support from the acupuncturists and health store people that I deal with.
Lastly, you can’t beat the support here at BCC. It was here, when I joined that people really helped me put things in perspective and I also was able to learn a lot more about bladder cancer here than anywhere else. That has been nothing short of priceless. All in the family folks. (((((HUGS)))))
This is a very interesting post.
I think the Big “C” may elicit a certain amount of fear. For the people unfamiliar, or more specifically, for those not living with the disease, It certainly is viewed rather fatalistically. When I was first told I probably had Bladder Cancer, I vividly recall the cold chill that ran through my body. When I shared the news with my wife – she did not want to believe it.
I find that people behave differently when they are dealing with something emotionally frightening: Some people “run away” and avoid facing it. Other people find strength, and face it “head on”. Like Marysue’s neighbour, some of my close friends avoided me – Others offered and gave help.
There are people on this forum who, I feel are going through greater challenges that I can imagine. I can only give my prayers and compassion. So, as I share my point of view on this matter I do this not to complain, but to share a different perspective.
My wife was at the hospital for all the TURBTs and was there for me at those times. However, I cannot share with her how I feel because she doesn’t want to hear it. She doesn’t understand what I am going through. I may or may not get help when I ask for it. (After the hospital, or after treatment, I still did the cleaning, clothes washing, dishes, vacuuming, house maintenance, garbage, household finances, repairs, … ) It was particularly challenging when I had the Foley Catheter. No “Let me get that for you” or no “how can I help?” or “Can I get you a cup of tea?”. When I ask for help and advice to deal with my cancer feelings she avoids the discussion and pushes it back on me. On the “bad” fatigue days, I have been criticized for sitting in a chair and not being as active (ie. excersizing) as before.
My son asked me, “Why do you spend so much time on the BCC forums?”
My answer was, “Because the people on the BCC forum and I have something in common. To various degrees, they understand how I feel and what I am going through. You and mother just do not understand AND because I love you both, I pray and hope that both of you NEVER go through what I am going through. In that way, it may be good that you do not understand”.In summary, I find the reaction and conduct of wives, husbands, men, women, friends, neighbors to be possibly associated with fear of dealing with “Cancer”. From where I sit, as a husband – it is not a woman or man thing.
So, without any expectations, I am grateful and deeply thankful to any and all the help and understanding I do receive. I try to take the time to express my gratitude. Ultimately though, I have to try and continue to find that inner strength … because life is worth living.
God Bless
DDep
Well said DDep and I await my kids response as I have just sent the two of them a booklet describing BC and all it entails, they have both rallied around so far but maybe don’t understand the long term implications. I have a friend who thinks after I finished my first 6 BCG treatments I am cured. Wouldn’t that be nice, my wife is limited due to her own disabilities but as I have said before she does her best. Cancer is associated with death and we all don’t deal with that so well, even though we BC sufferers are a long way off that particular scenario. This post has been a great thought promoter and there is lots to think about and maybe share with our loved ones?
Love and best wishes
PaulIt was needing and wanting to give support to others that got me involved with Bladder Cancer Canada and led myself and another to start a support group here in Calgary. Every time I have spoken to an individual either by phone, email or in person, all have expressed gratitude and appreciation for having had the opportunity to converse with someone else that was dealing with or had dealt with BC.
Helping others has been extremely rewarding. I remember when I was first diagnosed in 2008, Bladder Cancer Canada wasn’t a reality yet having come into being in 2009 and I literally had no one to talk to. I tried to get connected through the Canadian Cancer Society and Cancer Connection but neither resource was successful in finding another person with bladder cancer that I could connect with. Because of this I got the incorrect impression that bladder cancer was a rare disease and thought that I would have to be on my own dealing with it. The Tom Baker Cancer Centre here in Calgary was the spot to go to for BCG treatments at the time but they didn’t have any resources either. So little did I know at the time that the line up I was waiting in for BCG treatments which was all older men except for me were all bladder cancer patients. The Tom Baker has also come a long way in setting up psycho-social resources for patients and their families regardless of any type of cancer. I didn’t have that resource to go to at that time either. When I complained to TBCC staff I was just told to go to my family doctor for anti-anxiety meds so I could cope when all I needed was to be able to talk to another person with bladder cancer.
That changed when I joined Bladder Cancer Canada in 2010. I discovered BCC accidently. I had been diagnosed with my second bout of BC and mentally wasn’t coping very well. Knowing that there wasn’t any support in Calgary, I went on-line. I didn’t think to do that in 2008 for some strange reason. Anyhow, I discovered BCC and by joining met Val Macleod who is on the BCC Board of Directors and lives here in Calgary and is also the Calgary BCC walk chairperson. We connected and things grew from there. I now have many “BC” friends.
There is the saying “it takes one to know one” or “walk a mile in his/her shoes/moccasins” which means that you have to be in the situation to understand what another person is going through. When I get that call from someone who has just been diagnosed and is really upset, I totally get it because I was there before. In reverse, in the past, when I was scared going for BCG or a cysto check, others on this site were able to help me get through the anxiety with encouragement and giving me insight to my fears at the time. In other words, taught me how to put my big girl pants on. LOL!!
As mentioned there is a “death/fatalistic” mentality associated with cancer. There is also an underlying stigma attached to it. Many people have suffered discrimination in employment and insurance matters from being diagnosed with the disease. This again creates fear of being found out. I truly hope with time that this will change and people will realize that cancer is a disease like any other, some get it, some don’t and like anyone else we need all the support we can get. But until such time occurs, we owe it to ourselves and each other to do the best we can to offer whatever support we can. This site is just the start of that. So, let’s continue to hug, hold, pray and send positive thoughts…this is a brother/sisterhood like no other. ((((((HUGS)))))) and best wishes to all.
Hi,
interesting topic for sure. I’m 40 years old, was diagnosed two years ago, which happened to be 3 months after my husband left me. Had surgery to remove a tumor. Needless to say, It’s been a tough couple of years. I have my family and friends who are there to support me, however it is not the same as having a spouse. It would be nice to have someone be there to hold my hand thru all this.
I completely understand your statement “i have my big girl pants on!!!” I’ve had to be strong for me and for my two kids who are 5 and 9 years old.
I’ve just completed 6 weeks of bcg (my first round at it) and feel good. But I know that’s not the end of it.So lots of Hugs to you.
Annie
- You must be logged in to reply to this topic.
