There are big moments and small moments with cancer. Life-changing conversations and painful everyday realities.
Finding a pea-sized lump. Learning it could be life-threatening. Vivid nightmares about cutting cancerous cells out of your own body. Contracting a potentially fatal infection thanks to your severely reduced immune system. Your five-year-old son refusing to take Calpol in case his hair falls out too.
Having three years respite only to face it all a second time.
It’s a rare person who has not been affected by cancer in some way, whether through being diagnosed with it themselves or knowing someone who has (Cancer Research UK says half of all those born after 1960 in the UK will be diagnosed with some form during their lifetime). Yet while it may be practically commonplace, there are areas of its devastating impact that are still rarely discussed openly.
Having faced all the above and more, Jeanne Paul knows the emotional and physical toll only too well – and also knows how difficult it can be to talk about it freely, both for others to hear and for herself to relive in the telling.
But she wants to tell her story to encourage others going through the same – and particularly, to reassure anyone facing mastectomy and reconstruction that identity does not lie in societal expectations of what a woman looks like.
Jeanne, who spent 19 years of her professional life as an aerosystems engineer in the RAF, was first diagnosed with an “extremely aggressive” breast cancer in September 2010, and underwent a lumpectomy before commencing gruelling chemotherapy and radiotherapy.
But an annual check-up just three years later revealed the cancer had returned and Jeanne opted for a double mastectomy, deciding not to have reconstructive surgery.
I didn’t think about my body; all I could think was ‘Am I going to see my children grow up?’
“Initially, I obsessed with just getting rid of the cancer as every day it felt like it was spreading. Also, the second time round even the doctors weren’t expecting it to come back so soon so there was a very ominous vibe. At that point I didn’t think about my body at all,” she explains.
“All I could think about was ‘Am I going to survive this and be around to see my children grow up?’ I just wanted any breast tissue capable of harbouring cancer cells to be removed as soon as possible – I really didn’t stop to think about what a significant operation that would be or how I might feel in the long run.
“Being an engineer by trade, I guess my approach was almost clinical; I’d had my two children and finished breastfeeding, so I didn’t have to consider that side of things. As far as I was concerned, the system could be decommissioned.”
Consultants agreed that a double mastectomy was wise, and Jeanne, now 43, didn’t want further surgery after having gone through so much already.
“The double mastectomy left me with two long scars across the centre of my chest, and because the medical team removed as much breast tissue as was physically possible, the scars were tight across my ribcage,” Jeanne explains. “The area was already sensitive and it took time to heal. For me, reconstruction would have meant inserting implants beneath the scars and gradually inflating them to stretch the skin – I just hated the idea and it all sounded unnecessarily stressful and painful.
“As far as I was concerned, reconstruction still wouldn’t have looked or felt like me as I was before and it seemed a lot of trouble to go to just to create an outline shape of ‘normal’ breasts.”
While she says she hasn’t “looked back” and is at pains to point out that her decision is in no way a judgement of those who do want reconstruction, she wants to reassure others who may feel there’s an expectation to look ‘normal’ again, to fit in with what we’re taught a woman looks like.
“Reconstruction is the right thing, and a saviour, for many women, but for those of us who don’t feel it necessary then that’s perfectly OK,” she tells stylist.co.uk.
“Sometimes as a cancer patient you feel the need to be strong for everyone around you. You make sacrifices and you put your body through chemo and mastectomies to ensure you are there for everyone else.
“I want to be an advocate for women who make those sacrifices to survive – they should not then feel under pressure to go through further surgery simply to conform to a societal perception.”
Articulate about her experiences and now free from cancer, running Race for Life every year and building up her fitness with her two energetic dogs, it would perhaps be easy to forget how much Jeanne, her husband Richard and children Laura, 13, and Andrew, 12, have been through to get to this point.
The first diagnosis came shortly after finding out her dad had motor neurone disease – news that, for Jeanne, overtook her own health concerns. She initially resisted her husband Richard going to the doctors with her because she genuinely thought “it would be nothing”.
Though it didn’t show up on a mammogram, an ultrasound revealed a growth the consultant was 90% sure was cancerous. Jeanne remembers thinking that despite the huge shock, it was manageable because they’d caught it early. Whatever treatment awaited wasn’t a concern, and she says she “didn’t think twice” about the lumpectomy and course of radiotherapy she was told she would need.
I was far more upset about losing Dad than my own situation
“All I can remember thinking was that my father’s motor neurone disease was terminal but I still had hope and a good chance of recovering.
“I felt that I was lucky in comparison to Dad. Looking back, I was far more upset about losing him. My main concern was that if I was ill, I wouldn’t be able to support my parents when they needed me most.”
However, a biopsy revealed that radiotherapy alone wouldn’t work and Jeanne would need chemotherapy first. There came a difficult time, not least a throat infection after the second session (chemo severely inhibits the immune system) proving extremely serious; kept in isolation in hospital, with her husband wearing a mask to visit, she was in “indescribable pain”. She was later told the infection could have been fatal, and has been left with long-term hearing loss and tinnitus.
A harrowing experience, but one she thought she’d seen the back of for a while. For longer than three years at least. Jeanne says the second time – only detected after she insisted on an ultrasound as well as a mammogram – the news hit much harder.
“I wasn’t naive enough to think that the cancer wouldn’t come back but nobody predicted it after only three years,” she says. “I was completely unprepared. My husband was also in shock. It was much harder explaining it to Laura and Andrew, as we had been able to be very positive first time round and now everything seemed much more doubtful.
“The emotional distress manifested itself in vivid nightmares about cancer cells multiplying inside me as the clock ticked. I remember one horrifying dream in particular where I dreamt that I went downstairs and got a kitchen knife to cut it out myself if no one else would. Outwardly, I appeared to be calm and coping, especially in front of the children, but inside I was a wreck.”
The hard-to-read details are what make Jeanne’s decision to first have a double mastectomy, and then opt out of reconstruction, so understandable.
However, she says she has faced confusion from medical professionals in the years since, who repeatedly offer her reconstructive surgery. Though she’s always seen it as a genuine attempt to make her aware of the options – and she’s the first to point out that women should do whatever makes them feel better following such trauma – she did feel that many didn’t understand her choice.
“Reconstruction and how an individual feels about it are very personal. I think the medical staff are genuinely trying to give people the best solution for them – it simply made me think about how I can help to ensure other women don’t feel pressured into reconstruction if they do not want to take that route.
“My family and career have given me the confidence to know that I am not defined by what I look like. Perhaps if I had been a supermodel or an actress or had not had children then I may have seen things differently. Clearly there is no right or wrong answer but I do believe that the choice belongs to the person whose body has been affected – whatever makes them feel happy should be respected.”
She adds: “I think times are changing and there is far more acceptance nowadays of not conforming to set ideals. I love the idea that our scars and ‘imperfections’ simply tell a story of our personal experiences – without mine, I’d be a photograph and memories to my family. I’d much rather be there to haunt them in person!”
Of course, for many women their breasts are tied in with their sense of identity and it’s not to say Jeanne hasn’t struggled with how her appearance changed, both with the double mastectomy and the hair loss that came with her treatment.
“For me, chemotherapy was the real challenge,” she explains. “I had always had long dark shiny hair. I didn’t care about breast surgery but I had a real fear that losing my hair would make Laura and Andrew feel that they didn’t recognise their mum. There was a very real chance that my hair would grow back differently and I felt anxious about losing my identity.
“I had the first dose and a few days later, I remember Andrew holding on to my neck and hair whilst I helped him put on his wellies to go sledging. When he tugged slightly to keep his balance a clump of hair came away in his hand. It’s one of those moments that will stay with me, though Andrew, who was five, doesn’t remember it at all.
“Later that evening, he didn’t want to take Calpol because he didn’t want his hair to fall out – we had to explain that it was only Mummy’s medicine that does that.”
Jeanne, who wore a headscarf throughout treatment, says she’s learnt to accept her changed body and doesn’t worry about others’ reactions to it.
“Accepting the mastectomy scars was hard initially; I’m 5ft 6 and a size 8-10 so I look flat-chested and my ribcage is quite prominent because they removed as much tissue as physically possible,” she explains.
“I worried about how my husband would feel but he is such an incredible person – he doesn’t care how I look as long as I’m around to grow old with him. It has taken me time to get used to the scars and I still suffer from post-mastectomy pain syndrome from time to time. But I like to think of them as war wounds – a permanent reminder of the lengths I was prepared to go to be around for my family.
“Initially I felt self-conscious when I went swimming or was on a beach holiday but I don’t think anyone really notices, or cares. If anyone is looking at me, they’re probably just wondering how my legs can be so white – after all I am from Scotland!”
While nothing is guaranteed, the double mastectomy means Jeanne is now statistically less likely to have cancer than the average woman and doesn’t even need annual check-ups (though there’s an open door at the breast clinic should she want it). She’s adamant that despite the stress and trauma, she’s “very lucky”.
“I feel very fortunate – I’ve learnt a lot about myself and my husband which has brought us closer together.
“And I feel much fitter and healthier than I have in previous years. My daughter Laura and I run the High Wycombe 5K Race for Life together every year and have raised several thousand pounds for Cancer Research UK. Laura makes sure I train before the race – I’m definitely not allowed to stop and walk! It’s given us a real bond and each year I get quite emotional running round and reading everyone’s back signs. We got our gorgeous Cockapoo, Cassie, when I was recovering and recently got a second, Kono, so there’s double the reason for going out each day.”
Jeanne also now runs her own aviation safety consultancy company, something she says she would “never have had the courage to do before. I had to look at what I really wanted to do with my life and accept that you do not always know what is round the corner.”
As for what she wants others to take from her story, Jeanne is clear: “I want women who are faced with similar experiences to feel that just surviving cancer is a feat in itself and that the treatment you chose to take should be the one that is best for you – do not feel pressured into conforming. My personal experience has been that people respect you for fighting the battle and do not actually judge your physical appearance.
“I also wanted to speak openly because I was relatively young when I was first diagnosed, at 38, and I didn’t have many people to talk to who were my age and then went through the whole thing a second time.
“I would like people reading this to feel that there is hope and that cancer, in fortunate cases like mine – and hopefully theirs – can be overcome. Some doors shut, others open and surprise you.”
Jeanne Paul supports Cancer Research UK’s Race for Life in sponsored_longform with Tesco. Every pound raised, from £10 to £100, will help beat cancer. Sign up for one of the 300 nationwide events at raceforlife.org
Jean Slocombe, senior cancer information nurse at Cancer Research UK, says: “When appropriate, women who need a mastectomy should be offered surgery to reconstruct their breast or breasts. This may be at the same operation to remove the breast or at a later date.
“Regardless of when or how the surgery is done, this additional operation will usually require a longer recovery time.
“While it is vital that women are offered a choice, it is equally important for health professionals to have conversations about the potential benefits of not having reconstruction.
“Body image is a personal thing and some women will not feel comfortable without having reconstructive surgery.
“But it is encouraging when someone who does not feel the need for reconstruction speaks out and offers her support to other women who are having to make this decision.”
Images: Jeanne Paul / Rex Features