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Mother knows best

Thursday, September 26th, 2019

In 2004, when I was 48, I was told I had breast cancer. The tumour was removed, chemotherapy and radiotherapy followed, and I got on with life as so many of us do. There was no history of breast cancer in my family, so I knew I was just unlucky; one of those statistics. At my five-year check-up in the summer of 2009 my oncologist felt a lump, this time in my other breast. It was very small (one centimetre long I later discovered) and I couldn’t feel it at all, even as I was being wheeled into the operating theatre; it hadn’t shown up on the mammogram either. It was a grade three, indicating that these cancer cells were of the fastest growing variety, just like the first, but this time it had spread to two lymph nodes. I was grateful that my oncologist, who feels around 50 pairs of boobs a week, had such super-sensitive fingers, and I dread to think what the prognosis would have been if another year had passed before my next check-up.

I have three children, Merlyn then 19, Jenny 15 and Richard 13 and three sisters, so as frightened as I was by those words “you’ve got cancer” I wanted to make sure they never had to hear them. I asked my oncologist for help; perhaps I could be tested? He told me that as there was no history of breast cancer in the family, there really was nothing to worry about; the vast majority of breast cancers are random. My cancer was random? I wasn’t convinced. About that time my first cousin, who had had ovarian cancer three years earlier, was told that she had breast cancer. It was particularly aggressive, and she died in November 2009. She was 46. So now, I guess, I had ‘history’ and I would receive more intensive screening, perhaps a blood test, yes? No. It was a ‘no’ because my two breast cancers and my cousin’s death still didn’t constitute ‘history’. ‘History’ meant that someone in your immediate family had had breast cancer; a first cousin didn’t count. It’s not often I feel desperate about things, but I felt desperate then. All my instincts told me the so-called experts had got it wrong and that I shouldn’t follow their advice and put my cancers down to bad luck. I needed to know more. I turned to my GP and asked him to help me get some form of screening and, within two weeks, he told me that Dr Ajith Kumar, who specialises in cancer genetics at Great Ormond Street Hospital, might consider me for participation in a national cancer study. Would I like him to refer me? As if he had to ask. Soon I was sitting with Emma Williams, a genetic counsellor, building a picture of my family to see whether there might be some links to cancer, however remote. Building this picture took quite some time as my dad was one of 14 children and my mum one of seven, but no one, except my cousin and me, had had breast cancer. Most of my aunts and uncles are alive and well and in their 70s and 80s. (My mum and dad died in their 50s, both of heart disease, but perhaps mum, had she lived longer, might have developed breast cancer.) She also introduced me to the BRCA1 and BRCA2 genes. These genes are associated with familial susceptibility to breast, ovarian and prostate cancer. If they function normally, they protect the body from cancer developing; if they are faulty, then that protection is lost. 80-90% of women with the BRCA1 gene mutation develop breast cancer and between 40-60% develop ovarian cancer. As one copy of each pair of genes is inherited from our mothers and one from our fathers, if one parent has a faulty copy of the BRCA1 or BRCA2 gene, then there’s a 50% chance that they will pass on their faulty copy and a 50% chance they will pass on their normal copy. If a child inherits the faulty copy, then they will not only be at increased risk of developing cancer as an adult, they will have the same 50% chance of passing it on to each of their children.

Once Emma had collated and considered all this information she said the family history wasn’t strong enough to put me forward for a breast cancer gene test, but I could participate in a national study called The Genetics of Familial Breast Cancer Study. This Study was looking for data that might show why people have a predisposition to breast cancer. It also involved a blood test to test for anything and everything. It was January 2010.

I knew it would be some time before I had any results but as the months passed, I’d finished my cancer treatment and I’d still heard nothing from Emma, I assumed no news was good news. I felt pleased with myself though; I had done everything in my power to try and identify if there was something, anything that make my family and me more susceptible to cancer, now I must be in the clear, which meant my kids would be too. Then, 12 months later, in January 2011, on my eldest daughter’s 21st birthday, I received the phone call from Emma: I had a faulty BRCA1 gene.

Well, I had wanted to find out if there was a reason for my breast cancer and, against all the odds, and contrary to all the received wisdom, there was. My immediate and natural reaction was to cry my eyes out because I knew that one, two or all of my kids could be carrying this gene defect. Telling them would be difficult, especially as the most effective method of reducing the risk of cancer is to have a bilateral mastectomy and your ovaries removed in your 30s. My eldest daughter Merlyn was in her final year at university and Jenny and Richard were at school, so I decided that, for a little while, I would play God and withhold this information until their exams were over. I did tell my sisters straight away and then started talking to our cousins as they would now need to be checked for the BRCA1 gene as we finally had ‘history’.

I began to fret about my non-disclosure. What if one of my children should develop cancer and it spreads? I talked to my doctor, my surgeon, my sisters and my closest friends about whether I should say something or keep schtum. Some agreed I was doing the right thing: why worry my kids unnecessarily when they have years before they can do anything about it? Others thought I was the personification of evil: how could I put my children at risk by keeping this information from them? I knew that the girls would have breast screening from 30, so there was time, but they needed to know. Despite my best intentions, I bottled it on at least a half a dozen occasions. I’d wait for us all to be together at Easter, on summer holiday, at Christmas, but the moment was never right. Then in June 2013, just over three years after I learned I was BRCA1, we were in the living room about to watch a film and I knew this was the time. I was so nervous it was untrue, but I told them as calmly as I could about my diagnosis and what this might mean for them. I didn’t go into too much detail, but suggested they meet Emma for a more in-depth discussion about BRCA1 and their options. Although I truly didn’t know what to expect once I’d told them, I didn’t expect the reaction I got. Merlyn was 23, Jenny 19 and Richard 17 behaved with the maturity, dignity and understanding that would put a Shaolin monk to shame. They took the news on board, seemed fine with it, but I guess I’ll never really, truly know how hard it actually hit them.

A couple of years earlier Merlyn had confided in me that she felt she’d get cancer too and just wanted to have a double mastectomy and avoid going through chemo and everything that goes with it. Although I’d worked through my treatment both times, trying to behave as normally as possible, being a bald, nail-less insomniac with chronic diarrhoea wasn’t much fun. Now she was certain she had the gene. Jenny also thought she’d have the gene as she’s so like me: we were both timid as children, not very sporty, loved reading and being indoors. She felt like she was a newer version of me, and this was history (there’s that word again) repeating itself. She wished I’d waited longer because ignorance is bliss, and felt she had a cloud hanging over her. But she understood why I had to tell her now. Richard, on the other hand, felt a little distanced; even if he had the gene he wouldn’t be screened for prostate cancer until he was 40 and 40 to a 17-year-old is a very long way off. We chatted for an hour or so about the ramifications of a positive diagnosis, then we agreed they needed to talk to their friends, if they wanted to, and my kid sister who’s like their second mum. I thought it was important they should feel entirely free to touch on any and every subject, so it would be better if I wasn’t there.

After a week or so, they said they’d like to meet Emma and find out more. I set the meetings up and, unlike me, they all went in there fully informed and probably already knowing the answers to the questions they asked. Merlyn wanted the blood test as soon as possible, but Jenny wanted to wait a while as she didn’t want the diagnosis to interfere with her studies. Richard was too young to take the test but would take it when he was 18 (he’s 23 now and still hasn’t).

Merlyn had her test and Jenny changed her mind and decided she should do the same. We’re a very close-knit family, so it didn’t surprise me at all that they then made a pact to tell each other their results at the same time. When Merlyn went to get hers from St Barts in London, I went too. It was good news; Merlyn didn’t have the faulty gene, so her risk of breast cancer was now similar to the population risk. We looked at each other and just hugged. No tears, just happiness. We were both so relieved we decided to celebrate by having lunch in Covent Garden at our favourite restaurant. Merlyn posted a picture on Instagram and innocently broke the girls’ pact. Jenny realised what this meant but said nothing.

When Jenny was home from university I asked her when she was going to take the test; she told me she already had, at the beginning of April and got the result at the end of May. She had tested positive for BRCA1. I don’t know whether I was more shocked that I was so out of the loop, saddened by the result or concerned that she did this on her own. As Merlyn didn’t have the gene, there was a strong chance Jenny would, but your mind doesn’t work that way does it? You always hope for the best, think you’ll buck the trend. She explained that as she already knew Merlyn was in the clear, she probably wouldn’t be and my presence would only make the next stage more emotional, so she took a girlfriend instead. That evening her friends, who all knew about me, the test, the result, took her to the pub, where they spent hours discussing her options; what a brilliant response, what brilliant friends.

The focus of our discussions has moved on to more ethical matters. Jenny wants children, but she doesn’t want to burden hers with this gene. The science exists to test an embryo and destroy it if it has the gene, but what if I’d done that to my wonderful daughter? She wouldn’t be here and wouldn’t have touched our lives in the wonderful way she has. But she is here, she may never develop breast cancer, she may not pass the gene on, so perhaps playing God in this case is wrong. Jenny will have the option of preimplantation genetic diagnosis (PGD). The initial steps of PGD are similar to IVF. When the embryo has grown it can be removed without causing any harm and tested for the altered BRCA1 gene. Only healthy embryos are put back into the womb, usually not more than one at a time. If more than one embryo is available for implantation, these can be frozen for use at a later date. You never really know how you’ll react until the time comes and that time hasn’t arrived yet, but at least now Jenny is equipped with the facts that will help her lead a long and healthy life. She will have a risk reducing mastectomy and, eventually, have her ovaries removed, which will also reduce her risk of developing breast and ovarian cancer. She will be screened every year from 30 until she’s 70. She now has control of a potentially life-threatening situation. If I’d listened to the ‘experts’ both my daughter, as well as other members of my family who have since tested positive, wouldn’t have the benefit of knowledge and the control that comes with it.

When I set out to protect my children, I wasn’t even thinking about gene mutations, I just knew that there’s usually a reason for everything and you’ll find it if you look for it. I found BRCA1 and as much as I wish I hadn’t, my extended family and I are the safer for it. The moral of this story? Never take “no” for an answer or as I prefer to say, ”mother knows best”.

When you’ve been diagnosed with cancer, you don’t need to learn on the job, you need short-cuts.

Monday, October 7th, 2013

As a single parent, running a busy household as well as a business, I really didn’t have time for illness. So, in July 2004, when I was diagnosed with breast cancer, my first thought was the terrifying-but-normal ‘I’m going to die’. My second was ‘how long will I have to take off work?’

Becoming a cancer statistic was the easy bit, being well prepared was almost impossible. There was no shortage of books and leaflets on the subject and, with ‘cancer’ being the second most searched topic after ‘pornography’, plenty to read online too. I should have been pretty well informed before my treatment began but I wasn’t; what was missing was frightening, and I had to learn on the job. In 2009 I turned that knowledge into a guide called Even the eyebrows? to give cancer patients the information to stop them putting their lives on hold, and to help them carry on carrying on.

Within months of writing it, at my five-year check up, I was diagnosed with breast cancer again. As devastating as the news was, I knew what to expect and decided to try a few things differently and put my past experiences to the test. I’ve condensed my findings into easy to follow short-cuts that give everyone – patients, family, friends and employers – access to practical advice and solutions that help turn a difficult journey into a manageable one.

1. Keep your children in the loop
Telling your children you have cancer is right up there with subjects you’d rather tackle at a later date. Unlike sex education and synchronising your computer with your BlackBerry, cancer can’t wait. I decided very early on, given the ages and maturity of my children (eight, ten and 14), that honesty was the best policy, and even the hardest-to-take information can be delivered with gentleness and tact. When I told them they were naturally frightened and upset and, as open and reassuring as I was about my situation, I knew they would have lots of niggling doubts. To prevent them from bottling things up and suffering in silence, I gave them an alternative sounding board in the shape of my sister. Her role was to be their confidante, informant and second mum; she was there to answer any questions they didn’t want to ask me – and they had plenty – and that helped in more ways than one. They knew that their opinions, thoughts and feelings mattered and that they wouldn’t be deserted or overlooked. The downside for my sister was that, as a source of information, she had to do some serious swotting because “I don’t knows” and “I’m not sures” don’t cut it with kids do they? (Tragically their father died when I was four months into the treatment, so that alternative sounding board became a crucial component in helping my children cope with a cruel double whammy.)

2. Jesus is coming, look busy
Everyone’s cancer is unique, as is your attitude towards it; ‘feeling rubbish’ after chemotherapy is, on the other hand, fairly universal, but you can do something about it. I was told to take things easy, rest, conserve my energy. This all made sense, but I was under a lot of pressure to carry on working to pay the bills, so there was no way I could contemplate taking a lot of time off. And, strangely, work was my salvation. By having so much to occupy my mind every day, ‘feeling rubbish’ was constantly being relegated to a minor position. Five years on I decided to be kinder on myself, take everything a little easier; I was therefore more in tune with my body and I actually felt far worse. This isn’t about having a positive mental attitude, or a job; it’s all about keeping busy. By focusing your mind on getting things done, whether it’s the crossword, filling in your tax return, painting by numbers or rearranging your knicker drawer, there’s less time to dwell on how you’re really feeling which, at this particular time, is a bonus.

3. You shouldn’t have to queue for chemo
The majority of people don’t get the ‘opportunity’ to experience chemotherapy on the NHS and privately, but I did. And the comparison is worth talking about. In terms of patient care, knowledge and experience you couldn’t slide a fag paper between them; I felt in excellent hands always. With private medical cover however I was able to choose where I had chemotherapy: hospital or home. I chose home and that was bliss. My children would see me plumbed in and could see it wasn’t remotely scary, I was surrounded by my own things which made me feel relaxed and I had the freedom to arrange a time of day to suit me. The treatment took around two and a half hours, but on the NHS you could easily double the time. Driving to and from the hospital took an hour, but then I’d have to queue to get in the car park, queue to see my oncologist and then queue to have the chemotherapy itself. In time all patients should be given the choice between home and hospital, whether they have private medical cover or not. Trials have already been conducted in Bristol and Birmingham by Healthcare At Home which shows that it makes economic sense to treat cancer patients at home. And, let’s face it, if you’ve got cancer, should you really have to queue for chemo?

4. Ping off!
A lumpectomy (an operation to remove the tumour from the breast) is what I had both times. It’s a simple procedure, in comparison to a mastectomy, and recuperation is fast, but you must exercise to keep your arm and shoulder mobile. After my first lumpectomy I was very diligent about following the physiotherapist’s gentle exercise programme, but a week or so later I started feeling extreme pain in my arm and underarm when trying to reach for or move things. I also noticed a strange bony line forming under the skin in my arm which ran down to my hand. Had I been overdoing the workout and done some damage? No, the physiotherapist at the hospital knew exactly what it was: cording or hardened lymphatic vessel which can form after this kind of operation. The only way to get instant relief was to ‘ping it off’. What’s pinging off? A method of stretching the vessel until you feel, and sometimes hear, a small popping sound. That’s the vessel snapping! If this sounds too brutal, a gentler approach involves massaging and stretching the cording until it breaks or you could just put up with it. I preferred a faster result.

5. Shit happens
It’s a well-known fact that diarrhoea could be a side effect of chemotherapy but what should you do about it? Sit on a loo for days on end just to be safe, or carry on as normal in the belief you’ll get ample warning? I can tell you from my own personal and bitter experience that you don’t need to sit on that loo, but you’ll wish you had. One week after my third chemotherapy session I was leaving a meeting in London when my bowels decided on a mass evacuation. Luckily, I was near a loo so I could sort myself out, before enduring a gut-wrenching, buttock-clenching 60-minutes of misery on the train journey home, as I anxiously pictured the scene should my bowels let me down on the London to Colchester fast train. It was upsetting, humiliating and unnecessary. After that I never left home without my bespoke, top-of-the-range emergency shit kit: Imodium Instants, spare knickers, night-time sanitary towels, wet wipes and perfumed nappy sacks. This wasn’t just a physical help – it had a very positive psychological effect; I felt far more secure knowing I had back up, and it meant I could carry on as normal. Almost.

6. Camouflage or go commando?
The thought of losing my hair came a close second to learning I’d got cancer. Everyone’s different, but I was told that on my drugs, my hair would start falling out around two-and-a-half weeks after my first chemotherapy session, and it did; I literally started to moult ferociously. I knew the only way to avoid a shocking hairstyle and my children eating hair, was to shave the lot off. This all sounds very matter of fact, but it was heart breaking and I cried buckets. Weeks before reaching this stage I’d already discussed my options with my family: wig, scarf or go commando? I chose wig. With make-up and my brilliant wig I worked, shopped, went on holiday and felt completely confident (except in a high wind) but I missed my hair and it seemed to take an age to grow back. So, second time round, I decided to see whether I could hold on to my hair by using ‘scalp cooling’ (or the cold cap).

The cold cap looks like a helmet (and is kept at a constant minus 5.5º Celsius) that you wear during chemotherapy to reduce the blood flow to the scalp, and therefore the amount of drugs reaching the hair follicles on the head. It was successful in that I got to my second chemotherapy session without any hair loss but in the end I lost 80% of it. As I kept the hair around my hairline, I had the option of wearing glamorous turbans as well as a wig and I had a head start on growing my hair back. For me the end result outweighed the discomfort. And I have a deep and new-found respect for all those men I ever berated for comb-overs.

7. Even the eyebrows?
Sadly I lost my eyebrows and eyelashes too, but they grew back, although my eyebrows were a bit of a let-down after the first lot of chemotherapy. Second time round they refused to come back at all so I became quite expert at putting on my eyebrows every day, and most people thought they were actually mine, rather than carefully applied eye shadow. But during the hot weather that summer I’d often come home with one-and-a-half eyebrows, and sometimes just half; it wasn’t a good look so I decided to get my first-ever tattoo and regain my eyebrows.

Getting your eyebrows tattooed on is quick and easy, finding the right person to do it is where you need to spend the time. Through talking to people, then checking with experts I trust, Debra Robson-Lawrence, was recommended to me. After an initial consultation at her Harley Street offices where we experimented colour and shape, my eyebrows were tattooed on. It only took around 30 minutes and the end result is very natural and far better than the originals. How long the tattoo lasts depends on your skin type but in another six to 12 months I should have a colour boost to refresh them. Right now I don’t even need to touch them. At around £300 an eyebrow, dropping down to £115 each for regular half-yearly visits, it’s not cheap, but for me it’s an investment I happily make.

8. Employers: angels or demons?
We’re all aware that employers can behave like an alien breed when it comes to protecting their business, and nothing gets them going quite like: “I’m pregnant” and “maternity leave”. “I’ve got cancer” often has a similar effect. There are very specific guidelines concerning maternity leave and everyone knows where they stand. Cancer’s different because until you have it there’s no way of telling how you’re going to respond, both physically and mentally; how much time you’ll need off work; and whether you can do your job if it’s physically demanding. But work is important, not just as a source of income, but as a coping mechanism, keeping things ‘normal’. The last thing an employee needs is to feel is that he or she has to ‘watch their back’. Of course the Disability Discrimination Act is there to help but there are some employers who will exploit every opportunity to undermine an employee, causing him or her to take on a new (lesser) position or resign altogether. With almost 46,000 women and 300 men being diagnosed with breast cancer each year, employers will be dealing with this very serious illness more regularly. It’s not rocket science, but people who are treated with respect during what is for them an intensely traumatic period, will return to full time work more committed, loyal and positive. Everyone’s a winner.