Help I'm desperate
My wife was diagnosed in 2006 after being told (following a biopsy) that she didn't have cancer!
She had a papaloma removed from behind her nipple and they found cancer in what they cut out despite having done the biopsy
That merely amplified her mistrust of the medical profession because prior to that, having gone to a different specalist with a leaking nipple he insisted there was nothing wrong and wanted to operate on the other breast so she walked away from him and didn't approach another until the nipple started leaking blood.
She spent 7 weeks getting radiation therapy getting passed from pillar to post as regards doctors because her allocated specialist decided (after our first meeting with her) to go on holiday for 5 weeks without telling us.
She was devastated by her treatment by the individuals involved and was recommended to see the resident psychologist who promptly dumped her as soon as the treatment was finished. Again, devastated, so I found her another psychologist who, after seeing her for a couple of years but achieving absolutely nothing then said he couldn't help her and again walked away.
Her experience is so radically different from that presented in the literature and by various celebs that she doesn't even trust forums like this one and won't join. She has become a hermit, won't go out, stopped working, lost contact with all her friends.
I don't know what to do, she is just angry all the time and that lands on me because there is no-one else in range.
Since the initial treatment she has had operations on the other breast to remove adanomas because the specialst thought she would feel better without them. Of course they neglected to mention in doing so they remove 80% of the breast volume so her body image is now completly scewed as well which adds to her trauma.
I'm at my wits end, I struggle especially because I can't even see how I can help beyond listening sympathetically.
Comments
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Hi Andrew, well first of all i am so sorry to read you and your wifes story, and the treatment you and your wife have recieved. BUT there is support out there - this is where this great bunch of men and women on here come in, we have ladies on here with all sorts of experience of the journey of bc, and also carers. Have you received the My Journey Kit from BCNA, if not please register for it on this site, it is a great package for BC and carers, family and friends, it is all done with people who have made the journey, including a cd from partners/carers, it is all put together in a way we can all understand, also BCNA have forums in different areas, having just attended one, i would say to anyone, go along and join them, once again the professional speakers as well as the bcna abasadors, speak and answer questions in a language we can understand, is there a support group near you? i can understand why your wife feels there is nobody out there to help her, but if she could just talk to others who have been down the road, i am sure she and you would benefit. Please let your wife know, by even joining us on here, she just may get something from it. Meanwhile please keep comming back to us, and like we all say, by helping yourself, you can help others, please feel free to add me to your contact list. Speak soon Take Care Moira X
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Hi Andrew
This is Kathy - I am a Senior Policy Officer at BCNA.
Like Moira, I was saddened to read about the challenges you and your wife have faced since her breast cancer diagnosis in 2006. We know that a diagnosis can have a huge impact on partners, and that often men feel at a loss as to how to best help their wife, and where to go to get help.
Have you thought about talking to your GP or a counsellor? I see from your blog that your wife has had counselling. If you were to see someone they might be able to provide you with some strategies for dealing with her anger and helping her to come to better terms with her diagnosis and treatments.
There are some resources for partners on the Family and friends page of our website, although I am not sure how useful they will be for your particular situation.The National Breast and Ovarian Cancer Centre also has information for partners on its website.
Finally, the Cancer Council Helpline may be able to offer you some support and practical advice - you can call them on 13 11 20. They are not just there for people with cancer, but also provide support to family members and friends of people who have been diagnosed. They have Oncology Nurses and other health professionals taking the calls and I know they would be happy to speak with you.
Andrew, I wish you well through what is obviously a very difficult and challenging time for you. Please let me know if there is anything further I can help you with. You can email me direct at kwells@bcna.org.au if you wish.
Kathy
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Hi Andrew,
Sorry to hear you guys have had such a rough time of it. I know how your wife is feeling.You put your trust in a specialist and sometimes you get let down. But you can't then mistrust every medical person.I broke my ankle 3yrs ago and I trusted this so called leading orthopedic dr.He talked me into surgery- plate and 5 screws.Well he put the wrong scew in and I was in agony and on crutches for 5months with him telling me I wasn't trying.An xray revealed his mistake and he promptly did more surgery to remove plate and pins.Even then he couldn't get it right and left a srew sticking in a muscle.Another 8mths on crutches,physio,pain++ and then a cat scan showed the offending screw.Needless to say,I found another surgeon to clean up his mess and he was great.I'm still not right and the 2yrs of needless pain and disability took it's toll on me and my husband.So last year I got breast cancer again(first time in 2003)and had to have a mastectomy and chemo.I had great doctors and a terrific breast care nurse. It makes a big difference- it makes the awful experience tolerable.
I think your wife could have depression and you need to find a sympathetic gp.Certainly getting her to come on this site would be really helpful.The women that I chat with are amazing support.We all help each other through this diffcult journey.I know my self esteem has taken a terrible blow but I am improving with the help of a loving ,patient husband.You may not think it but you are helping your wife alot by caring and being there for her.
Tonya
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Hi Andrew,
Sorry to hear you guys have had such a rough time of it. I know how your wife is feeling.You put your trust in a specialist and sometimes you get let down. But you can't then mistrust every medical person.I broke my ankle 3yrs ago and I trusted this so called leading orthopedic dr.He talked me into surgery- plate and 5 screws.Well he put the wrong scew in and I was in agony and on crutches for 5months with him telling me I wasn't trying.An xray revealed his mistake and he promptly did more surgery to remove plate and pins.Even then he couldn't get it right and left a srew sticking in a muscle.Another 8mths on crutches,physio,pain++ and then a cat scan showed the offending screw.Needless to say,I found another surgeon to clean up his mess and he was great.I'm still not right and the 2yrs of needless pain and disability took it's toll on me and my husband.So last year I got breast cancer again(first time in 2003)and had to have a mastectomy and chemo.I had great doctors and a terrific breast care nurse. It makes a big difference- it makes the awful experience tolerable.
I think your wife could have depression and you need to find a sympathetic gp.Certainly getting her to come on this site would be really helpful.The women that I chat with are amazing support.We all help each other through this diffcult journey.I know my self esteem has taken a terrible blow but I am improving with the help of a loving ,patient husband.You may not think it but you are helping your wife alot by caring and being there for her.
Tonya
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Thanks for taking the time to comment, do you have any solid thoughts about how to re-establish enough trust in anyone to even consider joining forums never mind approaching the medical "profession" again. She has all the literature going, all that seems to do is confirm how far from the planet right her treatment has been and reinforce her mistrust in everyone (including me).
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The helpline has been invaluable in keeping really bad thoughts at bay (can't say more) but doesn't really help in re-establishing the trust that has been lost.
I think underneath it all is fear of further dissapointment and rejection and a contributor to that is all the "positive reinforcement" that goes on. To quote "I feel like a peice of crap so why shouldn't I say so but no-one wants to hear that they only want to hear how it is making me stronger".
I have committed the cardinal sin of a)trying to fix things and b) make her feel better in the past for which I have paid dearly.
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Actually I'm amazed to put it mildly, after all that how do you stay positive, I'm sure talking to people like youself would provide a better, more balanced, view of the world but I'm struggling to get that first step to happen.
I'm thinking that part of the answer to the first question is that your doctors and breast care nurse helped you with that balance, we've yet to find that balance so perhaps that's why we're finding the trust so difficult to deliver.
I feel that if I could get her on to this forum we could start to address that but it is a wall I can't find a way past right now.
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Hi Andrew,
I guess you have to "shop around"and find the right medical people that will instill that trust again.But then your wife has to be willing to try again.You can be miserable and wallow in it for so long but then you have to start climbing out of that low place.Sometimes medication(antidepressants)helps to kick start that climb.When I started Tamoxifen(an anti estrogen drug for b cancer) it caused me to feel quite low which is a side effect.So I went on a small dose of Endep and within weeks my mood lifted.I still have the occasional cry but my husband just gives me a reassuring hug.We are both accepting of my limitations and that helps.But I don't want my limitations to stop my husband from enjoying life.I want him to be happy because he has been such a great support to me.
Andrew ,as much as you care for your wife,take time out for yourself.
Tonya
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i am sooo sorry about the predicament you are in, but having been through the bc journey (albeit with lots of support from my medical team), when i finished treatment all was great, then a couple of months down the line i fell in a heap, i realised things were not okay when i was snapping and snarling at my wonderful husband, who has been there for me all the way through, i went to the surgeon,(we live in a rural area), and he informed me that a large percentage of people who have gone through bc suffer from depression, and i was prescribed anti depressants, so probably not only is you wife feeling let down, she is obviously suffering from depression as well, is there any women that you know of in your area who have gone through the journey, who could maybe visit her? or i am sure if you got in touch with a support group (if there is any in your area), they would be more than happy to arrange someone (not from the medical environment), just someone who has been there. As tonya says, you also have to take care of yourself, and your wife is sooooo lucky to have you, (it's just such a pity at this point that she maybe knows that she is lucky, but is just so down she cant get over the bad treatment from others that has happened to her and concentrate on the good things in her life.) Keep comming back, i am sure someone will come up with an idea that may be of help, and meanwhile you get to vent, cry or laugh. We are here to listen. Take Care regards Moira
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Hi Andrew,
My wife was diagnosed with BC 3 1/2 years ago at the age of 36. At the time our kids were 4 and 2. After 2 mastectomy's, lymph node removal, chemo and less than satisfactory reconstruction (twice), she has been to hell and back both physically and emotionally repeatedly. We too have tried professional help when things became too difficult, with some limited sucess.
As you know, the role of being the "Rock" can be extremely draining, especially when all your efforts appear to be for nothing (we males need to see results). I mostly do the reassurance trick. On a couple of occasions when several days of reassurance have not worked and I'm at the end of my tether, I have abruptly highlighted to her that we are both in this together and at least we have the luxury of being able to complain about the negatives of BC and its treatment. Some of my comments are less than orthodox, but I make no apologies as it has helped her.
I am by no means saying this is the way to go for anyone else, but she has recently told me that in those dark times, this has worked for her and helped put things back into perspective. This has always been unplanned and there has always been the threat of it back firing. Thankfully to date this has not happened.
My wife is the toughest woman I know for what she has been through and how she has fought. I have nothing but love and admiration for her. But I also know that if I pander to her too much, it can have a negative effect and contribute to her self pity, which helps nobody.
I don't pretend to understand you and your wifes situation, as everyone deals with it differently and I don't believe we have experienced it to the same degree as yourselves. I don't know if anything I have said is of any benifit either. I know I would have liked to have had someone to just sound off to during the tough times. If I can be of any help, just drop me a line.
Regards
Shane
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Well! wish we could meet in other circumstances but looks like we have much in common. I have met few Dr House in the practice of oncoloy tell it like it is. Unfortunately, these comments and much more are often common in hospitals once you or your wives have been more than once like me then you understand you not on the the glamourous side of cancer not anymore. What the media makes it up to be. You are right my wife oncologyst also took holidays at the time had excrutiating pain.
Then again soon after treatment everthing stops the patient and the carer feel dumped with nowhere to go not even friends. my wife like yours does not want to frequent boards or call organisations for moral support . No wonder quite a few treated patients do not even want to hear the word c anymore the get frightened and have nightmares. Drepression? local GP do not know how to get around or provide for services beyond hospital care because they are not briefed or are just plain ignorant of either hospital social services or psycologist . I have seen patients dumped before and even refused services due to internal hospital paperwork transfers case in point my wife was diagnosed with twice with terminal cancer but the last time when she recovered she was refused a grant because she dis not belonged to a specific treatment centre but to palliative services they saw her on a way to recovery so they quickly dismissed our claims and that was a month after she left hospital with (secondary) pelvic bone cancer operation. All in the name of beaurocracy.
Tonya is right you always have to shop around even in the most pressing of the circumstances if my wife would have stayed in hospital after her first operation she would have died long ago and if I did not press her to go and see other seven posible surgeons she too would have died about two years ago Nov. 2009 so Yes! Definitely Tonya is right on the money. Then again who makes it twice in a row or even four times back to hospital to know all this?
But if any consolation Andrew let me extend my hand to you. Your wife much like mine has a great deal of frustration and resentment which is not good for her health and emotinal stability .You are not alone and I feel for you and share your frustration and anger. I often feel hurt and like a lion licking its woulds if anyone get my meaning.
Feel free to message me privately if you wish.
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Sorry for being off line but I was busy re-applying for admission to the human race , apparently I had no right to attend the Sydney forum because I didn't have cancer. This just feels like a downward spiral to oblivion and I almost wish it would hurry up!
You know I heard the comment at the Sydney forum that Carers and in particularly male carers felt we didn't need our own space to talk but with Shane, me and now you I do wonder. It isn't great to hear of your experience but only because I see fellow victims of an uncaring system. It is great to know I'm not alone but I'm not really sure how to translate that into something that can help us help those we love.
Talking about the forum, it seems the medicos understand the issues they create because of the way they treat our loved ones I'll give that to them but strartegies for dealing with them seem very thin on the ground as do the number of people able to deliver on them. In any case if there isn't a willingness to accept help how do you even bring to bear what little help there is?
I did try to take the learnings from all the great responses in blog and email and marshall them into focus, it includes the one about changing your team but also includes talking to others in the same pain space and taking ownership of yourself etc. I thought it was quite a powerful message but it just bounced off so not sure where to go from here.
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I hope you have been successful reapplying for the human race but at this stage I am not sure if my answers are right for you Andrew so just making a comment I'll suggest something we as carers are also indirectly affected. I mean what was you ntention going to a cancer conference? Was it medical or a free information seminar organised by an org? If was medcally organised surely is restricted to professionals if it was organised by an assoc then it was plain stupid and ignorant from the organisers to stopping you from going because a cancer is a cancer no matter where it first originates.
The label bc is normally used to assign the origin of the cancer and designate a treating doctor or group as primary care doctor but that is not written in stone it is the way a specfic patient is filed in the system so statistics can be gathered and clinical studies developed but then again bc is not exclusive to women only a few man have developed bc as well very rare but it has happened. Much like secondaries too they may be totally unrelated to the orignal cancer just theymoved affecting other parts of the body yet the person is referred to the same oncologyst who then refers the patient to a different cliniic. Case in point my wife first develop ovarian cancer then she had a secondary in her breast a few years later yet she is still an ovarian cancer patient inspite of having been operated for bone cancer by an orthopeadic surgeon she still remains ovarian cancer patient.
IN relation to carers services, respite and so on you may refer to http://www.carersaustralia.com.au/?/article/view/via:17:308
The Salvos also offer support
http://salvos.org.au/need-help/family-and-personal-issues/telephone-counselling.php
Unfortunately I do not agree that the medicos have the crystal ball or fully understand the disease the medical profession just touches the tip of the iceberg and moder medicine insipte of its advancements there is a long way to go yet. Many are doing their best others just pay attention but they do not go out of their way to solve a case. May be is because they have so many patients a day to see so they may overlook some patients investigations (I can prove this to anyone any time and that is the real value of carers) it also much depends of the technology available at treatment time. If you ever heard the words "All care but no resposibility" that applies to hospitals and auxiliary services are just not there in many cases there is a big void between discharge and after care follow ups if any and that where hospitals fail.
I do not know you and your wife entitlements in regard to after care if you receive any benefits like my wife does she is on permanent disability pension or DSP and myself I'm also a carer with a condition I have lymphoedema. Bugger if I know where it came from in the first place because it affects women who have been treated with bc. My Oedema was quite extreme as it included the whole body I was unable to breath properly move or walk even went to my eyes. Suddenly one day it began to recede so now I am much better I still have many issues with my wife to deal with as she may refuse further treatment if ever comes to that.
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The more I think about this the more I feel our focus as carers must be on the non-medical side of things. Yes the medical side has a direct influence on things and we can certainly offer our opinions if asked but I realised that I ran the risk of getting in the way of the way things should work which is total trust between patient and doctor.
I'm going to limit myself to trying to deliver support in the basics such as the classic shoulder to cry on, sounding board to bounce off, researcher and facilitator if a disconnect seems to have happened.
I'd hate to see this turn into a medico bashing blog even though as I read through my initial spleen dump there were elements of that in there because as I said this is clearly counter productive in our efforts to ensure our loved ones get the best care possible.
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I can be quite radical and play devils advocate which earned me a ban in other forum for not beign politically correct. I still look after my wife like if it was her first days struggling with an extremely painful form of cancer and I am proud to have gone through it all with my wife. I looked after her and still looking after becasue she is weak . Never mind mate the world wasn't bult in one day let alone by a single sex. It takes two to tango a cancer is cancer there is not a generic defintion of a cancer but just a name reference point of origin for statistics purposes but it does not change anything in essence for sufferers. Does it?
Much like my wife she would have ended a statistical figure regardless of the clasiifcations she was schedule to die in 2009
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