Breast Cancer Awareness - A Partner's Perspective
Thursday, 11 October 2007
Breast Cancer now affects one in every 11 Irish women. But behind these women there is often a very caring and loving partner who is with them through thick and thin. The words "in sickness & in health" become very literal. Today we look at Breast Cancer from a partner's perspective.
Paula Heaphy- Married to Liam Boggan in 1996, diagnosed with breast cancer 7 years later.
Ursula M. Courtney, R.G.N; M.Med.Sc
Director of Services
ARC Cancer Support Centre
Ursula trained as a nurse at the Mater Hospital many years ago and has spent nearly 20 years in the area of cancer care. She got involved in ARC at the very first brainstorming meeting and gave as much time as she could on a voluntary basis to the project until she finished a Masters in Medical Science in 1997 and then moved to ARC Cancer Support Centre to take up the position as Director of Services.
As a result of her thesis for her masters, she realised just how little support there was available to men who were partners of women with breast cancer and resolved to try to do something about it.
She has spoken at national and international conferences over the years, most recently at the 9th World Conference in Psycho-Oncology - Also spoke at the 6th one in Banff (Canada) and had the honour of meeting Ted Kennedy Jnr and also was a speaker at the 7th and 8th World Conferences. Ireland is becoming a real advocate for the role of psychosocial cancer care.
She has a great interest in the need for support for both the patient and the family members particularly partners. Ursula feels that no-one is a body part only and it is very important to see the individual as a unique, physical, psychological, social and spiritual human being. There is a growing interest in the whole role of psychosocial oncology throughout Ireland and Ursula is part of the core group of people who has been pushing this need into the foreground of patient and family needs in cancer care.
Paula and Liam married in 1996. 7 years later, Paula was diagnosed
. After giving birth to third son in 2002, experienced very bad breast pain that was slow to clear.
. Over time noticed that one breast had become larger than the other, but put it down to childbirth.
. March 2003 was in GP's surgery with baby son getting vaccinations, picked up a leaflet about breast awareness.
. GP examined but couldn't feel anything but Paula had a feeling something wasn't quite right- was referred for further investigations.
. Friday March 14th 2003 went for a mammogram, followed by ultrasound-consultant was looking very concerned.
. Biopsy confirmed bad news; She had breast cancer at just 35.
. March 27th began a six-month course of chemotherapy to shrink tumour before surgery.
. Chemo was surprisingly OK, would feel sick afterwards but would come around fairly quickly and be fine until next time.
. Lost hair and had to get a wig but wasn't so bothered as knew it would eventually grow back.
. At the time Guy was 5, Hugo 4, and Marcus not yet 1-the happiness and well being of kids was total priority.
. September 2003 had a mastectomy followed by another six-month course of chemotherapy and radiotherapy.
. Attitude through all this was very matter-of-fact, kids really helped to keep on track.
. Finished chemotherapy in March 2004
. June 2004 had ovaries removed-tumour was very sensitive to oestrogen so this was a necessary step.
. Thrown into an early menopause as a result, but simply dealt with the side effects as best as possible.
. Husband Liam and Paula were a little saddened as we were not sure if had finished adding to family but we were luckier than most in that they had three fantastic little boys.
. September 2004 took decision to have reconstructive surgery, very happy with result.
. Would be lying if said didn't think about breast cancer a lot, every pain and ache brings fresh doubt and a certain anxiousness but determined not to agonise.
. Feels well now and wants to move on and get back to "normal", realises that this will be different normal.
. How did you feel when Paula was initially diagnosed?
Absolutely shocked and terrified, Diagnosis was made immediately on Mammogram but further tests only confirmed the mammogram, most stressful 10 days of my life.
. As more and more treatment was being administered how did you feel?
Paula is a medic and as such I had access to friends in the profession who briefed me on the reality of the diagnosis and left nothing to my imagination. Frankly this was a help as they helped focus my mind.
. Were you well informed by all the professionals about what was going to happen-did you know what to expect?
I think that the Medical professionals tend to tread very carefully in their use of language, you have to be strong and ask directly for explanations, and then they were readily forthcoming. I never knew what to expect, just dealt with every event as it came along. Paula being a medic was a double edged sword as she knew much more than I did and this was no great advantage to either of us.
. How involved were you in the household duties prior to Paula being diagnosed?
I was involved to the extent that I was actively involved with the Kids, our family was (and still is very young) Youngest was 18 months old and next was three and a half and the eldest was five. I was not really involved in doing more than loading the dishwasher and changing nappies.
. How did your role change as a husband and father after Paula's diagnosis?
I had to take responsibility for the running of the house and for marshalling all the resources I could bring to bear to help me and the family keep the show on the road. Treatment was very debilitating for Paula. We had to get a full time child minder to help Paula and to look after some of the light housework. I had to get proficient at using the washing machine and doing the shopping and making sure that there was cover for all eventualities both major and minor (like finding Paula being in Hospital and having no one to babysit so I could visit her as happened once.)
. Did you have to take time off work at all?
I had a very supportive work environment at ABN AMRO at the time and have huge regard for my colleagues who felt that it could have happened to one of them also so they were there to cover my back. I took little time off work but can say that for a time Work was a refuge from the harsh reality of home.
. How did you feel you were able to support Paula?
I am not sure that I was very good at supporting Paula. It was an emotional rollercoaster and from time to time still is. I saw it as my job to keep up a 100% belief that the treatment would be effective. I had 100% confidence in the medical team and treatment which was very, very aggressive but Paula wanted it and so did I. The side effects of the Chemo drugs were traumatic and so it was hard to do more than make sure that she was comfortable and that the family routine continued.
. Did the process of Paula's treatment put any strains on your relationship?
No, It probably brought us closer together as we had a unified goal to succeed as a family and to get a positive outcome from the treatment. Subsequent to the treatment has been probably more stressful as life settles down to a new and different norm than we started out with.
. Did you need support yourself and if so, where did you find this support?
I definitely needed support; It can be very lonely as the partner. Lonely is not quite the right word as the House was like a train station a lot of the time with Visitors for Paula and her family. As the partner you are not the one with the disease, you are the one who lives with the consequences of the disease, Paula actually said to me once that it was easier for her to concentrate on her treatment, I had to think through the day to day logistics of family life but also to plan for whatever the future might bring. I was never recommended to any counselling or help and while I had to rely on my male friends, males don't easily do emotional support and being male you don't want to reveal the fact that you are in any way weak or uncertain.
. How did you feel Paula's illness affected your boys?
I think that the boys were definitely impacted , they all knew that something was up , we were matter of fact with them and said to them that Mummy was sick , that she was taking medicine and that she had to have an operation but that when she got better that all would be well. Our youngest has remained very determined not to let Mummy out of his sight whenever he can. The middle child told Paula at one stage during her treatment that she was not his mummy and that his mummy was gone. This was traumatic as you can imagine and we were shocked but did not dwell on it. Many months later, when Paula had managed to re-grow her hair and got it styled for the first time like it had been prior to her illness, Hugo when he saw Paula come back into the house from the hairdresser declared that his Mummy was back. That was also an emotional high but showed that the kids were impacted much more than we appreciated.
. What were your personal highs and lows in this journey?
The Low point was the initial diagnosis, the rest was a battle through the tough times, there was the famous (on RTE handbag incident when Paula had her bag stolen, and it subsequent recovery with the Cash and drugs gone but the valuable jewellery and religious icons and good luck cards intact in a pouch that neither the thief nor the Gardai had spotted which was amazing. The low points during the chemo were trying as the effects were cumulative. The high points were the surprise times when someone would drop a lasagne at our hall door on the day of a chemo treatment , knock and then I would only see the tail lights of the car of the Friend who had delivered it disappearing up the road. This showed me that despite the struggle that people did care for us in a meaningful way.
. What are your hopes for the future?
I hope that the disease has gone away forever, and that our family deals with the repercussions of new norms.
I continue to be amazed by what I consider to be an increasing prevalence of the disease amongst young women and I would take some issue with the Breast Cancer awareness advertising which shows pictures of women aged 50 and upwards when they clearly are not the only ones to get the disease.
I would like for there to be some form of support put in place for partners but as a male I know that Males are uncomfortable with discussing issues with each other , but there are certainly issues , i.e. sexuality and fertility which were never discussed with Paula and I either together or separately and these issues are taboo. Of course , in a live or die initial scenario , dealing with these issues seems somehow trivial in the scheme of things but as time goes on , they become important yet get swept under the carpet.
Ursula M. Courtney, R.G.N; M.Med.Sc
Director of Services
ARC Cancer Support Centre
Tell us a little about the work ARC does?
Founded in 1994, ARC is a registered charity offering professional support to people affected by cancer and those who care for them. The support is holistic and complements primary medical treatment with education and psychological care.
Services in ARC House are free of charge but donations are greatly appreciated.
Who Comes To ARC?
People diagnosed with cancer no matter where they live or where they are being treated.
Adult family members and friends of those affected by cancer.
Members of the caring professions who work with people with cancer.
What implications does a woman's breast cancer have on her partner?
It is such a terrifying time for both parties and often the partners can get left behind and forgotten about. However the implications of one partner's health crisis can be devastating on a relationship mainly through lack of understanding.
Can it test a relationship to breaking point?
The stresses and strains vary for every couple but fear of death, treatment, disfigurement, and a huge sense of loss is evident for everyone. This loss can be from the loss of a body part to loss of fertility to loss of financial security - it is really like a minefield and must be dealt with on a case by case basis.
How important is it for partners to have a support system?
Partners really need a support system - they need somewhere safe to express their fears and learn how to cope with w very new situation. Many are supported in work but still everyone asks how their wife/partner is but very few actually ask and listen to how a man feels. He is supposed to be the strong one!
How can partners be empowered?
Information is a great way of empowering people and then having the support of other men in similar circumstances can be extremely helpful.
To be a great support to the patient, the partner must learn the language. This is the new language associated with cancer as well as the non-verbal language from their partner. Sometimes touch such a hug is so necessary and people need to feel close and this closeness may be the best form of intimacy at that time. But no-one is a mind reader and both need to know how to explain how they feel and what they want - it really is a two way street.
Many men have said that they would rather have cancer themselves than watch the woman they love going through the trauma of breast cancer. Similarly women say the same of male partners so to me this really describes the essence of real love. Just being there for someone is so important and that may be the extent of what can be described as maximum support
What are the types of help do partner's approach you with?
This can vary enormously but men tend to need a lot of information in order to understand what's going on. Many feel out of control or left out of the loop as if what is happening to their partners has nothing to do with them as men.
How can we reach out to sufferers, their partners and families?
The courses run in ARC are sometimes well attended by partners but we have had some difficulty in convening a group in recent times. This can be due to difficulties with times although we run them in the evening to try and facilitate people but then possibly homework, child minding, overtime etc can be barriers. We are now exploring the role of having both partners in together for an information evening and maybe giving some advice around coping, stress management, caring for and about each other.
Cancer can make or break a family - it really is a case of in sickness and in health. The age group of the partner may also be a factor as breast cancer can affect women in their twenties through to their nineties. Younger partners may not have anyone in their peer group with similar challenges and the same many apply to an older couple who have lost a lot of their friends through illness.
HOW TO GET TO ARC
65 Eccles Street,
Tel: +353 1 8307 333
Fax: +353 1 8307 595
Numbers numbers 3,11,13, 16 121 and 122 come along Dorset Street and Eccles Street intersects with Dorset Street.
Dart, Train or Luas
The nearest stations are Connolly and Tara Street. ARC House is approximately 20 minutes walk from these stations.
There is a public car park on Eccles Street. Disc parking is also in operation on Eccles Street and surrounding streets and wheel clamping in operation for illegal parking. Cars may be parked on either side of the street in the evenings.