Monday, 28 March 2011

A Man's Perspective

When I was going through chemotherapy my boyfriend Nick was on the other side of the world. He  watched helplessly from a distance as my hair fell out and I became physically ill. On Skype, he shared my night terrors. He talked to me constantly as I slipped in and out of anxiety and depression.

I knew how difficult it must have been to cope with the fact that the woman he had found so attractive was no longer vibrant and sexy. That in fact she might die. I constantly stuffed down my fear that he might leave me. Later I learned that Nick had indeed started having an affair.

I have tried to understand what it is like for men whose partners are diagnosed with breast cancer.

Dominic's wife Lucinda was diagnosed with breast cancer four years ago. She had a lumpectomy and refused further treatment. Recently the cancer returned. This time she has had a mastectomy. This is Dominic's story. I am immensely grateful to him for his honesty and courage.

Dominic’s Story

I’d just got back from Australia. Lucinda went for a routine check up and a lump was found. Very small, in exactly the same place as she’d had a tumour four years ago. Lucinda had a lumpectomy the first time around. She refused further treatment then. She was adamant that she didn’t want radiation and so on.

Meanwhile she was doing a lot of healing work and meditation. Everything she could do she did. She wanted to be one of the ones who magicked the lump away. But that wasn’t to be.

Now she has to hear all the doctors saying “You didn’t listen. Now you have to completely surrender to us.” And she holds her own. She just refuses to be bullied. But she does try to listen to them as well.

My wife is a strong character. She tends to put on a tough front but she is really vulnerable emotionally. She’s painfully aware that her mother had died of cancer, quite young. One of her aunts died of breast cancer too. One way to look at this was that it was an appointment with her own fear.

I knew what went on in her family. I knew how distressing it was for her when her mother died. To some extent it wasn’t that surprising that Lucinda got breast cancer. At some level we were all expecting it. Four years ago, I wasn’t completely stunned the surgeon said, “yes it’s cancer.” Lucy was thunderstruck. But I was pretty certain that that was what he would say.

Lucy and I are very close. We’ve been through a lot and we’ve survived it all. Her diagnosis sort of put us into a bubble. There was a strange feeling of the rest of the world going away: an instant isolation - but we were isolated together. It’s a scary feeling, almost like Hansel and Gretel being alone in the forest, abandoned and night is falling. You find yourself accosted from all sides by fears and darkness. It’s as if the whole world is reconfigured around these new circumstances.

Emotionally I will always find cancer a very hard thing to process. My own mother was dead within six months of being diagnosed. So it plugs me right into some fairly primal fears of losing someone that I love very much. On the other hand it awakens my determination to be supportive of Lucinda, whatever the outcome. I need to let her know that I’m not going to run away. I put on a brave face, without necessarily feeling that I have real courage or that I know what I’m doing. I act the role. Sometimes you have to fake it to make it.

I was with her when she went for her first mammogram. The first time round I was with her for everything. Second time round I was working out of town and I couldn’t do any of it. So we’ve had two very different experiences.

Our daughters were 10 and 15 back then. We talk to our children. There aren’t any secrets. But they do that teenage thing of saying “I don’t want to know. Too much information.” In their own way they’ve been very supportive and stayed calm. But they then start acting out. Just now our 14 year old has been having stomach pains. She had to be fetched from an induction day at her new school because she was too ill to continue. So the fear does show up somehow. And I think it’s a good thing that it does. I’d be more worried if it didn’t.

With me it shows up differently...

The worst day was the day Lucinda had surgery, four years ago. It was so unreal. She had to go in for a morning. A lumpectomy. It felt like nothing: in and out within a few hours. I drove her. We were driving to the hospital and we had the issues of parking and meters and money all that stuff. Under the circumstances Lucinda found it quite hard to know what she wanted from me. She wasn’t terribly clear. But she was about to go and have a fucking lumpectomy. So I’m driving along and we had a stupid kind of row, on our way into the hospital and, you know, I wasn’t there when she came round.

That was the low point of the first time around. She went in to the hospital to face what she had to go through feeling raw and alone because we had a fight about stupid, trivial things. The way you do when you’re frightened and anxious.

Personally I find it difficult enough at any time to be really articulate emotionally. I’m very articulate intellectually but even at the best of times I find it hard to know when I’m experiencing emotion and under those circumstances fear will take me quite quickly into aggression. I’ll get angry because I’m powerless and frightened and I’m not getting the information I want so that I can feel like I can be some help. So it triggers all the kind of classic male responses under pressure around the person that you love the most. And so you end up, well I ended up, on that day behaving not terribly well. I was not helpful.

So what I’m admitting to, is that on the day when it really mattered, I let Lucy down because I couldn’t contain my own negative emotions: fear and powerlessness. I regret that. I learned a lot from it. And then, weirdly, I got the chance to do it right.

So at least this time around I have something to really work from, a sort of template of how it can go awry. I pay close attention to that. I take care of myself, in terms of sharing with trusted people how it is for me, what my fears are and so on and trying to be more present in the moment myself so that when the difficult times come I’m not already adrift from my own centre and easily triggered into being reactive.

And you know something? It works. This time around I am much calmer and more genuinely supportive. In other words I’m not making it all about me. Not turning a crisis into a drama. Not stealing Lucinda’s moment of pain or overwhelming her neediness with my own. Not living in co-dependence.

We are quite a modern marriage. I cook. I clean. I’m very present. We were looking at the wonderful Jack Nicolson film last night ‘About Schmidt’ where his wife dies and he’s never so much as toasted a piece of bread. Well that’s not the case with me and Lucy. But as you know in any long-term relationship between a man and a woman the challenge is to become as conscious as one can about the projection of the same-sex parent onto your lover. In other words: me putting my mum onto her and her putting her dad onto me. That, I think, is the greatest dance of marriage. How conscious can you become of how much you run the movie of that earlier relationship? As far as I understand it, for most people this is work in progress. One doesn’t master this, certainly not quickly. It takes a long-term relationship. So what I mean by that is that there is a childish part of me that expects Lucinda to be my mother. Just as there is a childish part of her that expects me to be her father. I just think that’s given. It’s archetypal. But it operates at various levels of awareness.

Now Lucy was unwell, she was weak, recuperating and having a tremendous struggle with the hospital about treatment. She was resisting really fierce pressure they put on her to have treatment that she didn’t want: “You’ll get it again.” They said “You’ll get it again” It turns out they were right. It’s very tough stuff.

We went through all of that together. Out there in the world I was showing up for Lucinda. Behind the closed doors of the house, I was probably quite needy. For me neediness comes out in being demanding, being critical, picking her up on stuff and making her feel unsure of herself. That is my negative default position. It’s fight or flight but I can do it in quite a passive-aggressive way.

I didn’t agree or disagree with Lucinda’s decision not to have treatment. What I wanted to do was create as much space as she needed so that she could make sovereign decisions about her own body and about her own well-being. I could see how much pressure she was under from the doctors at the hospital and I knew instinctively that part of my role was not to add to that pressure but to be… not to be neutral, but to support her and not to try to influence her decision: just to let her take as long as she needed and to be there for her. She is incredibly thorough about researching: anything to do with bringing up the kids, nutrition or health. She’s unbelievably well read and thorough. So I trusted that she knew what she was talking about. I didn’t ever feel I had to balance her arguments with other arguments because she knew them all. She covered the ground.

I didn’t want to pressure her by saying “I need you. The girls need you. Take the medicine.” That shadow of fear, if it reaches a certain level, makes me an unhelpful person. If I’m going to let go, I have to let go absolutely. I doesn’t work or help if I let go but then keep hold of a leg and scream “But what about me?” After having seen her mother die young - ravaged by the cancer and the treatments, it was important that Lucy was able to make her own decisions about her own life. My role was therefore to get out of the way and be a support. I never felt that she was doing the wrong thing. If one weighs up all the alternatives and one is willing to take responsibility for whatever the outcome might be, then I think you haven’t done it wrong.

But I probably didn’t really consider the possibility that she might actually die. I probably didn’t go there. I think I’ve gone there more this time. I have very different feelings.

Because I wasn’t with her during all the consultations so I was much more detached from the process. The emotional dynamics are configured very differently. And again I have to trust that she is doing the right thing. It’s important that she be free of any worries like, “How is Dominic going to handle this? What if he kicks off again like he did last time?”

Of course I was there for the surgery. Lucinda had a mastectomy this time. I took her in and I was there when she came out. The thing you have to know about Lucy is, when she was coming out of the recovery room and they were wheeling the bed back into the room, she had to be stopped from getting out of the bed and helping them push. And from the very minute she came round she was saying she felt completely normal, she didn’t have any ill-effects whatsoever, she has a remarkable ability to process anaesthetic, it just hasn’t happened. It’s like: “I’m the exception. I don’t need to rest. Don’t tell me what to do. Don’t interfere. I’ll do what I want. Blah, blah” This rebellious, quite angry fourteen year old Lucy appears and everybody has to deal with her.

So we went through that very difficult day together. Funnily enough I left the hospital only a minute before the surgeon arrived in her room. She was alone when she got the good news “Your lymph is negative”. And that also felt appropriate. I’d been there all day, we agreed I would leave at seven. At one minute past he turned up. When she rang me I was still in the car park. We wept down the phone to each other. It was such a wonderful end to such a horrible day. And strangely it felt totally right that I was in a car park and she was alone in the room, alone with the truth. The timing of these things - who is where with who at what moment in the process - I think is somewhat significant.

It’s early days again and she’s been very protective of me seeing the wound. That’s fine. She has a lot of swelling so our normal configurations of how we share a bed... if she sleeps in my arms... all that’s different because she’s not herself. It still hasn’t all settled and I don’t know when she will open up to me again. But is what has happened affecting my perception of her femininity? No.

It’s been very up and down since she came out of hospital. When my daughter got ill and had to be rescued from school, that was a bad day. Our relationship moves between toxic codependency and healthy interdependency. I just think that’s marriage.

Lucy has also been doing a lot of work on herself. She doesn’t have any older women in her life really that she can confide in and talk to. So she doesn’t have a reliable way to deal with her own fear and she handles most of this stuff alone, in her head. It’s not a reliable neighbourhood - certainly not under these kinds of pressures.

The other day we were talking. Lucy was baring her soul to me, saying: “I don’t understand about surrender. What is it?” and I was thinking “Wow. She’s finally asking.” And then on the other hand I was thinking, “I can’t be her therapist. That’s not going to work.” The intricacies of illness can lead to some very frustrating tension. There are really difficult times where we lock horns and she’s saying “Back off,” and I’m saying, “But you wanted my help about surrender and you’re not fucking surrendering.” And she’s saying, “you’re so angry. You’re so aggressive. Fuck off. I can’t live like this.” We can go from naught to a hundred and twenty miles an hour in seconds because suddenly everyone’s fear spikes up.

I think what I’m observing is somebody who has run from looking at death, now trying to look at it and therefore being very angry and frustrated because she can’t wrap her head around it intellectually. But she seems to have got hold of a new kind of philosophy of love, of self-love, of rejecting anything that is not loving, whatever the outcome. Life, death, disease, healing: all is to be experienced through the eyes and ears and heart of love.

Lucinda has been hyper faddy about food ever since I’ve known her. I have to smile and shrug my shoulders because she’s ended up eating meat! It’s hysterical. Everyone who knows Lucy knows that she’s been militantly vegetarian her whole life. And now, suddenly, we have chicken one night, buffalo burgers the next and mackerel the next. Nobody knows what’s going to happen tomorrow. One can get irritable about it if one chooses to but y’know, I’ve rubbed up against foodie fascism for about fifteen years, and I’m ok with it all. We both say: “I shall eat what I want”.

She’s got so many things to do before she can even get out of bed. She’s got to pray, meditate, write her pages, listen to the tape, do yoga, make a juice. It’s exhausting.

I’m very cautious about speaking for anybody but myself. I want to be very clear that I have been imperfect as a husband through Lucinda’s cancer. I have not managed myself emotionally as well as I would have liked. But I know I wouldn’t have handled it at all if it hadn’t been A: that I don’t drink or take drugs and B: that I go to a self-help group.

So much of our behaviour is unconscious - particularly our reactions to fear and love. A large part of who I am is hidden, from me. That sounds absurd. I’m 48 years old but that is my reality. Much of what I experience emotionally, I’m the last person to hear about it.

Being among people, sharing what is going on in my life and voicing my gratitude for what I’ve got means that I can access emotional resources that might help Lucy: support, love, kindness, compassion and presence. This is a huge thing for me: to be able to maintain my integrity around things that I’m committed to like sobriety and being faithful and honest. I’m not saying I’m a saint but I am saying that I know that Lucy would not have benefited from me acting out my fears by getting smashed or having a love affair or going to prostitutes or whatever.

I would much rather be able to sit here and tell you that I didn’t handle it so well but that Lucinda and I shared that, rather than that I took it all outside the relationship, or outside my own integrity, got wasted or adulterous and now I’m having to live with the consequences. So, that’s just a very personal thing about admitting my weaknesses and using the support network that I have, rather than trying to do it all on my own. If I can take care of me, then I can show up for my wife.

The other thing I do is go to a men’s group. Once a fortnight I go and just spend a few hours with a bunch of men whom I really trust. In those few hours if any man needs to talk about something or explore his emotions, he can. Men. Don’t. Do. Emotions. We find emotional fluency very challenging because the minute it goes negative or… difficult, men feel vulnerable. In our culture fear, crying and neediness are judged very harshly. Men are looked upon as weak if they show emotion, unless it’s in a semi-ritualised context like a football match where men jump all over each other and cry and hug. But that’s about football. If it’s about my wife having cancer and me feeling incredibly scared and uncertain about the future and I can’t make enough money to support us and we’re going to have to sell the house and so on... if all my fears and projections come up at once and I can’t show that to somebody, how will it come out? In anger and rage, that’s how. I would want all men to have some equivalent support system from other men. Don’t get isolated.

Arrange a regular meeting with whoever is going to give you that support, whether it’s a weekly dinner or a group - whatever. It’s quite rare, among men, to be able to do that outside of the context of the sports game or the pub. I think that’s why therapy has been such a huge boom industry in the last 50 years. At least you can talk to someone who is not going to say, “Oh tell us a joke, how come you’re not funny anymore?” The therapist isn’t going to say that because you’re paying them. But we need someone who has been where we are too.

Anyway, I would want any man who is going through this to at least consider finding other men who they can trust, who they can go to and just talk, beat cushions with a baseball bat and all those therapeutic ideas of releasing pent up emotions. Because the one thing I’m sure of is it’s not going to help Lucinda if I bring it into the consulting room and then suddenly leap over the desk and try to attack the consultant. The fact that I can’t save Lucy from having a piece of herself cut off, that I’m not powerful enough, that I can’t do anything - is very distressing. As a husband I want to be able to protect my wife from somebody with a knife saying, “This is for your own good.” No it’s not. Fuck off. Get the fuck away from the woman. But I can’t do that. And that’s the most distressing thing. Which is making it about me. It may be irrational but it’s also a manifestation of love. Whether it’s my wife, my child or my pet, I don’t want someone who I love to suffer.

Oddly enough, if I take care of me then Lucinda is going to get what she needs. It seems like that’s the wrong way round. When life throws us a curved ball and we’re triggered into your horrific fears and projections over which we are powerless, everyone reacts. But for men there is an additional burden: “I mustn’t let people see how I feel because they’ll judge me as weak. And now there’s no-one I can talk to because I’m ten times more volatile and vulnerable and uncertain.” So, don’t let yourself get isolated whatever you do. Find someone who knows what you’re going through, so you’re not going to have to listen to a load of advice. I think advice is the last thing that anyone needs.

I can’t speak for anybody else but those things have got me through. I know how much men need this support and how hard they find it to ask for it. But if a man chooses not to find support then he is giving himself a huge extra mountain to climb.

And if you have a male friend whose wife has cancer, call him. Don’t wait for him to call you. We have to judge what is enough and what is too much in terms of getting involved in other people’s lives. But just the offer of being there to listen, without a load of pressure attached to it, is incredibly helpful. One thing that interests me is quite a number of men that I know have had a similar experience. So at any given moment there are lots of people around you who have been through it one way or another, but they don’t talk about it. It seems to feel shameful in some way.

Some people go into couples counselling when all this happens. Lucinda and I have done that in the past. That’s good too. For a man, the hardest thing is to find a space where he can bring his side of the emotional stuff and feel that he can do it safely.

Gratitude is another a practice that is worth trying to keep a hold of. I count my blessings every day. Often it’s the only bit of plywood separating me from disintegration.

Try to get a bit more sleep. Try to maintain an exercise programme. Do all the things that help you feel good about yourself because the stress of this is the bitch. That’s the bit that starts to chip away at my desire to really be there for my wife. If I start to get very stressed and I’m too tired to check it in it’s going to try to find a way out. And where does it want to go? It wants to go onto my partner. It naturally wants to manifest as projection, “well you are too difficult… your cancer…” and so on. I make you the problem. And I think with illnesses like cancer the chances of that happening rocket up. It’s exhausting and you have to have some way of getting through it a day at a time, or an hour at a time. Do basic things like eating nourishing meals two or three times a day. Use the extended family. Let the kids go and spend a weekend at the grandparents. Whatever. Create space where there’s nothing to do. For me these all come under the heading of realising that I need to take care of me because that makes me available to take care of Lucy. I do it with varying degrees of success but at least I’m aware. If I’ve got awareness then I’ve got a chance.

I still believe that Lucinda is not the same as her mother. She’s not one of those people who will just be rolled over. “There she was one minute and the next she died of cancer.” She’s too stubborn, too tenacious. So in many ways I do see this, as difficult as it is, as a really interesting period that will make us stronger. I don’t think either of us is going to freak out one day and just walk out the door, unconscious of why we’re destroying everything.

Where will we be in ten years time? I don’t know what the future holds but I think we will be together.


Anonymous said...

Thank you so much Dominic

Anonymous said...

I'm blessed to know and love the people in this article. Its a privilege to be friends with Dominic. His generosity, insight and courage continue to inspire.

Anne Russell said...

wonderful details of something not often articulated by unreconstructed males ...
It is a story of reconstruction in many ways .. Good Job Dominic!

every man should read this regardless of thier situation .

Muriel said...

Thank you for sharing your story Dominic. I wish you and your wife the best things possible.

mataharifilms said...

Thanks to those who have commented. And I'm grateful to be able to share the story. Thought you'd be interested to hear that after her mastectomy last summer my wife continues to decline treatment by radiation, chemo, Tamoxafen etc. She remains clear, and is continuing to heal herself through nutrition, fellowship, exercise, and everything in between. In the process she's becoming extremely well-informed, & is trying everything that's out there. She is beginning to dream of helping other women with breast cancer by starting a charity that would support via active advocacy any woman who wants to pursue alternative methods of healing BEFORE invasive medical procedures. Not for everyone. But her path is opening up before her. Love and everything else,
'Dominic' x

Anonymous said...

Thanks very much for sharing such a generous, wise and honest account. A huge amount to take in there and ponder, some of it difficult, all of it helpful and enriching. This suburbman wishes you both – and your family - all the best.

canalily said...

Hear, hear!

And Dominic, has Lucinda heard about the charity 'Yes to Life?' They support integrative approaches to cancer care and research in complementary therapies.

canalily said...

And to everyone else... please Tweet this. It deserves to be shared.


Anonymous said...

thank you Dominic and Jessica for sharing this. Dominic you write lucidly and eloquently about your feelings surrounding your, your family's, and Lucinda's journey. I feel that some women can also find it difficult to articulate how they feel, me included, when faced with deathening news. Your article has helped me to reconsider my modus operandi regarding cancer; perhaps i should try to open up with friends, or join a group - it seems i'm better at bottling things up than allowing others to share the nebulous uncertainties. Thank you Dominic. I wish you, your family and Lucinda much happiness in your time together. x

Unknown said...

you write wonderfully - it's so rare for a man to be so emotionally articulate! I think this should be shared with all those blokes out there struggling with loss, illness and rage. i wish you all the very, very best. it sounds as if your combined strength will mean your futures are in the safest of hands.

mataharifilms said...

Just to be very clear, this was an interview conversation, rather than a written piece. It's worth saying, therefore, that the editor and author of this blog is due a lot of credit for the direction and depth of this conversation. Glad it is finding a receptive readership.
'Dominic' x

Alison Cole said...

You are such s gentle and emotionally articulate man. I'm amazed and moved by how authentic your relationship is with your wife.It's wonderful.
What a wonderful conversation this piece came out of. The depth and scope is beautiful. Thank you for sharing your experience. I really hope all goes well for you, and your family.

Anonymous said...

Thankyou for giving me some insight for the first time into an eloquent, honest and sensitive man's mind dealing with his partner's breast cancer. My partner became very angry and distant and eventually left me during the radiotherapy part of my breast cancer treatment, and shagged another woman on the second night of leaving me. He came back after a week but did not confess to his infidelity until 3 years later. He says he wants another chance; that 'we' would handle it better if there was a next time. I don't know what to do. Your interview has got my mind racing. I didn't know there were such honest and emotionally expressive and reflective men like you out there. Thankyou.