Don’t let cancer define you. Fun’s on its way!

January 1st, 2021

The treatment for cancer affects your body and your mind, but sometimes it’s just great to think about you, to live your best life. And, if you’re someone like me, in their 60s, wouldn’t you like to know that the best is yet to come? Well it is!


If orgasms were available on the NHS, we’d be a far healthier and happier nation. Orgasms boost the secretion of endorphins, oxytocin and dopamine, a powerful cocktail of sex hormones and associated neurotransmitters, that not only make you feel ecstatic, they help to regulate appetite, sleep, attention span and memory, while reducing stress and giving you a bit of a work out. These are all highly attractive and beneficial side effects especially as you age, but to have an orgasm you’ve usually got to have sex and for some of us sex doesn’t hold the same appeal any more. Loss of libido is the main culprit, and it’s common enough, affecting up to one in five men, and even more women, at some point in their life. It’s often linked to relationship issues, stress or tiredness, as well as treatments like chemotherapy and radiotherapy, and hormonal changes brought about by pregnancy, childbirth and breast feeding. It’s usually temporary which is the good news.

The one to watch out for though, the BIG one, is the menopause. This usually happens when you’re approaching or are in your 50s, and the drop in oestrogen and testosterone production will affect your sex drive, but hormone replacement therapy (HRT) can be an effective ‘antidote’ for many. However, oestrogen is a far more important hormone than I ever realised and, had I known this a few years ago, I would have been far more proactive in negating its absence. Here’s the back story: I was 48 when I started the menopause thanks to the chemotherapy treatment I was undergoing, then I had both my ovaries removed as a risk-reducing procedure due to my faulty BRCA1 gene, which meant, from that moment on I had no oestrogen in my body, nada, nothing, yet it’s vital to many functions. In fact I’d go so far as to say it’s a wonder hormone; it improves the thickness and quality of the skin as well as its collagen content, and we all want that; it helps to preserve bone strength and prevent bone loss and we all need that, and it regulates cholesterol production in the liver to protect the heart and arteries, ditto. Who knew? Well I didn’t and no clinician thought to inform me, and I’ve seen so many. But let’s go back to tissue health, because that includes the vagina, where oestrogen increases the acidity that reduces bacterial infections. It also helps to keep it lubricated; without oestrogen the walls of the vagina will become thin, dry and inflamed (known as vaginal atrophy – paints a picture doesn’t it?) and sex can be very painful, you’re also more prone to urinary tract infections (UTIs) and you might start feeling an urgency when you pee or you even develop urinary incontinence. If any of this chimes with you, don’t worry, because you can do something about it.

First you need to get your vagina healthy again, and your doctor will be able to advise you on your options, and whether you should go the systemic route and take oestrogen orally, or use a local therapy like Vagifem, which just treats the area, advisable if you have a history of breast cancer. There are lubricants too, which will help, but the medication is necessary.

I’m not assuming that everyone reading this is interested in regular sex; you may be perfectly happy having sex on date nights only, infrequently or not at all, whichever it is, you should still take steps to avoid those painful UTIs and they’re such simple steps. But for those of us who are interested in the intimacy, arousal and fulfilment that comes with intercourse, there’s a lot to look forward to… especially if your single. According to the 2018 annual Singles in America report, a survey of 5,000 single people in the US, your sex life reaches its peak in your 60s, with single men having the best sex at 64 years old and women at 66. That was always a good year.

We’re all getting older and want to enjoy our lives as much as we can, so it helps to be both proactive and reactive and it’s never too late to start. Ever.

How to cheat at Christmas

December 2nd, 2020

This has absolutely nothing to do with cancer, but as Christmas is coming and we all want to look our best, despite the strange lockdown situation we all find ourselves in, I thought this would be fun (and a great trial run for Christmas 2021!).

Who doesn’t want to look fab-u-lous at all those Christmas parties? While we may not be blessed with Sophie Dahl’s eyes, Angelina Jolie’s lips or Cindy Crawford’s figure, we have not run out of time to get into stunning shape. Yes, it involves a little cheating not dieting, but as this hurts no one except you if your shapewear’s unbearably tight, does it matter? Of course not. And the best news is that looking fab-u-lous won’t even take a day to achieve.

Starting at the top and working all the way down to your toes, here are my failsafe tips on what you can do to look your very best, very quickly, without spending a fortune:

Hair: A good hairstyle matters, but now’s not the time for a dramatic makeover. Work with what you’ve got and, whether you prefer neat or messy, make sure your hair looks healthy. If those split ends which should have been cut off weeks ago are still there, then apply a tiny amount of argan oil to give your hair some sheen. If the roots are showing, cover them; there are plenty of DIY powder alternatives if can’t get an appointment with your hairdresser.

Eyes: We’re all a lot better at looking after our eyebrows, so I guess I don’t need to mention monobrows or Frida Kahlo here do I? Let’s assume all straggly hairs have been plucked away and your eyebrows frame your eyes well, so now the attention is on your eyes. They may be the windows to your soul, but nothing ruins a photograph or Instagram post more than if those windows look shut. You need eyelashes that make an impact and open up those eyes. If your own lashes are long, then it’s worth investing in a good quality eyelash primer and mascara. Need a little more help? Then false eyelashes are a safe option but, if you can’t put them on yourself ask a friend or, if you buy the lashes from the cosmetics counter (big stores only), the makeup artist will apply them for you. Some women are advocates of lash extensions, which can look amazing. The Russian style might be a little OTT and Classic too light, so you could go for a Hybrid, which is a mix of the two. Once they’ve been applied, they’re yours for four weeks or so, and you don’t need to apply any mascara to achieve that wide-awake look. Lack of sleep or inherited undereye shadows can make you look tired, even if you don’t feel it, so don’t forget the concealer.

Lips: If you haven’t used filler to make your lips fuller, don’t do it now, experiment when you’re not in the spotlight, just in case you have a reaction. There are some lip plumping products out there, but in my experience they have a limited effect; to give your lips the appearance of fullness start using lip balm – do it now – and keep your lips hydrated to make them look softer and less lined. Then you need lip liner, which you can apply slightly outside the edge of your lips, but make sure the colour is only a tad darker than the lipstick you’re wearing (don’t do a Jackie Collins). A matt lipstick may be too drying, I’d go for a satin effect and then apply a little clear lip gloss to the centre of your lips to create an optical effect of plumpness.

The outfit: Whether you’re wearing a dress or trouser ensemble, a more streamlined figure will make whatever you’re wearing look that much better, which means you’ll feel better too. You may have a tummy you’d like to see less of, a waist you’d like to find or boobs that appear to need scaffolding. If that’s the case, only good underpinnings will solve the problem. M&S was my mecca for bras until I discovered Rigby and Peller. Their lingerie stylists know how to select the size and style that will be perfect for enhancing your shape in a specific outfit, but their bras aren’t cheap and, as they only have nine boutiques in the UK, not that accessible. The important thing is to make sure your bra not only gives you good support, but a good shape too. You need both, not one or the other. If you need to reduce the size of your midriff, waist, stomach, hips, bottom or thighs, there’s an abundance of shapewear available to you, and they are far more comfortable than they used to be; you may feel a little restricted at first, but it’s so worth it. Spanx is a well-known brand but there are cheaper own label ranges too; the good thing is that you’re spoiled for choice. If you don’t need as much help in this area, there are some great control tights and petticoats around for a light smoothing effect. Now, there’s no shapewear for bingo wings, so you either decide to flaunt your arms, or cover up as Helen Mirren does (although I think her arms look great).

Legs: If they’re going to be on show, and you’re not wearing tights, you might want to consider flashing a tanned pair. There are home self-tanning products, tinted moisturisers or you could just get a spray tan to make your legs have a healthy glow. Don’t forget a mani-pedi, as that completes the look.

Now you’re ready for the party season, and the effort to get there has, let’s face it, been minimal. When the new year comes, you can make getting in shape one of your New Year’s resolutions. Or, enjoy life and carry on cheating. The choice is yours.

Osteoporosis and chemo

November 7th, 2020

After returning from a fantastic family skiing holiday seven years ago, my three kids were keen to keep the memories going by running the videos through the TV. I sat back and was enjoying the show until I saw this little old lady coming down the slopes; who was she? She was stooping and looked quite frail. Slowly it started dawning on me that her ski wear looked remarkably like mine. Milliseconds later came the cold realisation that this stranger was actually me. How could that be? I was in my mid-50s then but felt decades younger, and had a wholly different mental image of me to the one I was staring at. I always stood tall too, or so I thought, but the camera never lies does it? I watched the video again and it was even more upsetting. I know I’m getting older, but that stoop was really ageing.

After a spot of self-diagnosis, I believed I had postural problem. My shoulders and upper back always felt stiff and my neck ached, which I figured went with the sitting-at-a-desk-writing-on-a-laptop-five-days-a-week territory. I needed to sort myself out, so I saw a physiotherapist for advice. Massage eased the stiffness fairly quickly and I was given exercises to strengthen my neck muscles and help combat my stoop. From now on it was sternum to the ceiling and shoulders back and down, chin tucked in. Problem solved – or so I thought.

After three years of walking like one of the Queen’s Life Guards, as well as taking yoga classes to strengthen my core and improve my posture, I was confident I was managing the situation until I went to my sister’s birthday party and the video camera came out again. Well, m’lud the evidence was incontrovertible; there I was chatting to friends and family, chin jutting out, neck at a 20 degree angle to the floor, back rounded. Again? Still? Maybe my stoop was a little more serious than I’d realised. As it turned out, it was.

I went to see an osteopath who examined me and said I had kyphosis. I’d never heard of the word, but it means curvature of the spine, where the top of the back to appears more rounded than normal. The word comes from the Greek ‘kyphos’ which means ‘hump’ and that’s what I was developing. The causes vary and include malformation of the spinal column in the womb, osteoporosis, spinal injury, spinal arthritis, poor posture and the ageing process. In my case kyphosis was caused by years of sitting badly, the fact that I was getting older (my spinal bones were weaker and becoming compressed) and the almost total absence of oestrogen. Oestrogen? Yes, oestrogen. And it’s a far more important hormone than I ever realised; had I known this a few years ago, I would have been far more proactive in negating its absence. Here’s the back story: I was 48 when I started the menopause thanks to the chemotherapy treatment I was undergoing, then I had both my ovaries removed as a risk-reducing procedure due to my faulty BRCA1 gene, which meant, from that moment on I had no oestrogen in my body, nada, nothing, yet it’s vital to many functions including the preservation of bone density. Who knew? Well I didn’t and no clinician thought to inform me, and I’ve seen so many. But back to the kyphosis. It was not considered serious and the condition could be prevented from worsening through specific exercises and lifestyle changes. If I did nothing, my stoop would gradually become more pronounced. You may never have heard of kyphosis either, but it’s an increasingly common problem, largely due to our more sedentary lifestyles and the fact that many of us spend too much time sitting hunched over our laptops, phones and tablets.

If your neck is beginning to jut forward – even if it isn’t – now’s the time to take action. The important thing is not to slouch and not to put undue strain on your spine. NHS Choices has lots of great advice to help you, for example: make sure your chair is supportive and adjustable; keep both feet flat on the floor to distribute your weight evenly; when sitting your knees must be slightly lower than your hips to keep the spine neutral; buy a laptop stand and separate keyboard and mouse, so you do not look down at your screen but across at eye level and, finally, make a conscious effort to hold yourself properly when sitting. I try to keep a straight back and my chin tucked in, I pull my navel in to my spine to work my abdominals and strengthen my core, but as I get tired, I start to slouch. So now every 40 minutes or so, I get up and move around, make a cup of tea, go to the loo, do lots of shoulder rolls, but I also go to exercise classes to stay strong, to stand tall.

I definitely feel better now, and think I look more upright most of the time, but I feel like I’m fighting my skeleton every single day. In truth I’m really fighting decades of bad habits and a lack of oestrogen, but what’s the alternative?

Going going grey (strangely, having chemo helped!)

October 1st, 2020

Breast Cancer Awareness Month is one of the best ways of keeping all of us alert. We need to be vigilant, we want an early diagnosis, we want to be prepared. But, what if you’re already there? Had the cancer diagnosis and are now going through chemo and losing your hair? A few years ago, that was me and my biggest fear was facing the world with grey hair. If you’re facing a similar choice, please read this.

I’d been dyeing and highlighting my hair for decades. In fact for many of those years, I didn’t know what my true hair colour was but, in my forties, I could tell from my roots that I was going grey. Somehow that was far worse than having roots of any other colour; grey was synonymous with old; grey was about retirement and crossword puzzles; grey had nothing to do with the vibrant, energetic, forever-young and highlighted me. I knew that one day I’d have to face grey hair; I wanted to control how I did this, rather than be in a situation where it was forced on me and, even though I knew I had plenty of time before this would ever be an issue, I was dreading it. Getting breast cancer and having chemotherapy meant my ‘opportunity’ to embrace the grey came a lot earlier than I’d planned. I lost my hair and, when it started to grow again, steel grey in places, white in others, I dyed it immediately, I didn’t even stop to think about it. Five years after my first cancer diagnosis, I was diagnosed again. Same treatment, same outcome, same steel grey and white hair, but this time I decided to do nothing about it. As much as I thought I wanted the security of medium-golden-brown-with-caramel-highlights, I felt the time was right to stay grey. My hair was terrifyingly short and I felt incredibly exposed, but I really liked the grey and white. Loved it in fact. After decades of practising with various shades of browns, coppers and reds, I realised that grey really suited me. The paleness seemed to lift my complexion and give me a freshness that I thought made me look, if not younger, certainly softer. For me grey was the new blond and, as odd as it sounds, I felt a little glamorous, which does you the world of good when you’ve just finished chemo and radiotherapy. So when friends and colleagues saw me for the first time without my wig or turban, I accepted their double takes and kerb-falling reactions as a wholly natural response to my new look. I was flattered. And when they said that they loved my hairstyle, especially the colour, I believed them; why wouldn’t I?

Then my kids, who were teenagers at the time, admitted that they didn’t like me grey; they preferred the colour my hair used to be, and perhaps I’d think about growing it a little longer too. Were they concerned that their friends might think I looked like a granny? Yes. Did they think I looked a lot older? Yes to that too. Shortly after their revelation my sister took me to one side and, very tenderly, told me that someone at the school fete thought I was her mother and my children’s grandmother. Confirmation from grown-ups, finally, that grey is evil and it hurt. This knowledge could have made me fall off the wagon completely and reach for the bottle of hair dye, but I held my nerve until I could get a more objective view, or one I agreed with at any rate. I confided in a friend who, unexpectedly and rather sadly, agreed with my children and my sister. Being grey was just plain ageing – I was beginning to think I was committing social suicide. To top it all I saw a picture of Jane Fonda, who was in her 70s and looking fabulous, with the hairstyle and colour I used to have. To say I was depressed would be an understatement. My confidence knocked, I questioned whether I was doing the right thing after all. I started studying grey-haired women in their 70s and 80s and wondered if that’s how I looked; I would catch the reflection of older women in shop windows before realising with a start it was me. Without realising it, I stopped doing Sudoku in public as that might mark me out as being older than my years; ditto wearing my worst comfy gear. Then I got angry. Angry that the colour of my hair should become such an issue. Angry that it could affect how I felt about myself and how I behaved, especially when I’d been so positive just weeks earlier. Angry that I was doing older people such a great disservice. All because of the colour of my hair. I’ve always been used to people enjoying my company and taking my advice because of what was going on inside my head, not on it. But grey was more than just a colour, it was a sort of litmus test that indicated I was, in some way, ‘past it’.

I run my own PR consultancy and am a consultant with a branding company, so I know how important image is and, as much as I want to say ‘I don’t care what people think of me’, I do care. I also understand the pressures some women are under to look younger and hang on to their jobs, their men even. If dyeing your hair is what it takes to preserve the status quo, that’s fine by me. I believe you should only go grey when, and if, you want to, and it’s a big step for most of us, it certainly was for me. But I don’t want to be judged by others’ frames of reference and I don’t want to be an ambassador for grey hair either, I want to be me. I know I can still go back if the lure of medium-golden-brown proves too strong to resist, but why would I? I’m comfortable with who I am.

Mother knows best

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”.

In memory of a brilliant designer

March 13th, 2015

I had the great privilege of meeting Suzanne and Peter Abbott, the parents of Nicole Abbott who died from breast cancer in 2013 at the age of 34. A former student at Colchester Institute, where she got a first in Fashion and Textiles, and a former BBC Young Designer of the Year, she was a fabulous example to many young people. This year, in her honour, Colchester Institute and Paul Smith, where Nicole worked for 11 years, have created the Nicole Abbott Award. I’d like to share this story about a very special lady with you.

Last week Beth Caney, Ellie Proctor and Ellie Dolan-Roberts, all third year Fashion and Textiles degree students at Colchester Institute, presented their portfolios to Sir Paul Smith, iconic designer, renowned for his take on classic British fashion, in the final stage of a very special competition. All three were shortlisted for the newly created Nicole Abbott award in February from 23 entrants at the College. The judges comprised the design team from Paul Smith and Suzanne Abbott (Nicole’s mother). The ultimate winner, who will be selected by Sir Paul Smith himself, will enjoy a prestigious week’s placement during April at his London design studio.

This Award has been organised by Colchester Institute’s Colchester School of Art and Paul Smith in memory of former graduate, Nicole Abbott, who passed away in 2013 aged just 34, after a long battle with cancer. Speaking about this award, Sir Paul Smith said: “I was lucky enough to work with Nicole for many years. She was an incredibly creative person who always created a happy environment. It is an honour to have this Award in her memory and I hope it will continue to encourage creativity among the students of Colchester Institute.”

Blessed with talent
Suzanne and Peter, from Great Bromley in Essex, remember the joy their daughter found in creating things. “I can’t remember a time when Nicole wasn’t immersing herself in crafts like painting, pottery, knitting and cooking or baking,” said Suzanne. “At primary school she was always drawing and would take great pride in leaving little designs and messages around the house for me to find. They were usually telling me how much she loved me. As she grew older her favourite form of relaxation was physical activity; she’d go to the gym, swim and take long, long walks wherever she was in the world. She was also passionate about Italy and Italian cuisine and Slovakia, where I was born, drawing inspiration from folk traditions for her final year project at the college.”

It was clear that Nicole was an exceptional student, winning many national awards and competitions while on the degree programme. At 20 she was thrust into the limelight when she became the BBC Young Designer of the Year. Her prize, apart from earning recognition from the fashion industry, was to travel to San Diego, California to work with legendary fashion luminary Zandra Rhodes. This experience only fired Nicole’s passion for fashion design and her final womenswear collection was outstanding, resulting in a first class honours degree.

Nicole was blessed with a talent some of us can only dream about, so it only seemed natural that this success should be followed by 11 glorious years working for Sir Paul Smith as his assistant in London. But for Nicole family and friends always came first, and she was very close to her parents, Suzanne and Peter, and her older brother Jamie. Hers was a life filled with vibrancy, colour and laughter then, in December 2010, Nicole felt a lump in her breast. She was diagnosed with breast cancer, a grade three, the fastest growing form of breast cancer. Chemotherapy, surgery and radiotherapy led to an improvement but the cancer came back and she was told it was terminal and that she had four to six months to live. Rather than suffer the debilitating side effects of chemo for a second time, Nicole tried complementary therapies to combat the disease and have a better quality of life but the cancer had spread and, in March 2013, Nicole died.

Design legacy with a future
In May 2014 Val Jacobs, Nicole’s lecturer and course leader at Colchester Institute’s Colchester School of Art, asked Nicole’s parents if she could create a design award, in partnership with Paul Smith, to celebrate Nicole’s life and her love of design. Suzanne contacted Sir Paul Smith to ask for his company’s help and so the Nicole Abbott Award was born. This is the only collaboration of its kind to be supported by Paul Smith, which makes the award unique.
Speaking about the collaboration, Jacobs said, “I’m surrounded by amazingly creative people every day, but they’re in a college setting, which is protected, safe. An award like this will give one student the opportunity to be involved first hand in how the design process works, not just at the sharp end but at one of the most prestigious and influential design companies in the world.”

Jacobs also wants this award to pay tribute to Nicole’s work ethic, passion and genius. “Nicole was such an amazing designer; she had this incredible mix of creativity, focus and personality. I’m thrilled that we have been able to recognise her achievements with this award.” She believes this is a legacy that must be passed from one year to the next.

A life-changing event
There can be nothing worse than losing a child, but Suzanne and Peter want this award to commemorate Nicole’s life in more ways than one. Suzanne explains, “I am delighted that this award rewards creative brilliance, because that epitomises my daughter’s approach to design perfectly. But the lecturers played an important part in helping to stretch and channel her talents and their inspirational guidance must be recognised too. Most of all though, I want to make sure that as many young people as possible become more breast aware. It’s not just about checking yourself, it’s about making sure you look after your body properly; that you exercise and eat the right kind of food.” And Suzanne has taken this last role so seriously, that last year she organised a fund raiser for Cancer Active, a charity that helps people make informed choices, based on a holistic approach to cancer, using complementary as well as alternative therapies. Suzanne has also retrained to become a nutritionist and advises on health and wellbeing. She says that simple changes to your daily routine can help reduce your chances of developing cancer. “Just by eating organic food, filtering your water, drinking alcohol in moderation, taking some gentle exercise, but mainly avoiding refined and processed foods, will make a difference.”

For more advice on diet and nutrition, visit Suzanne’s website: www.love4health.co.uk.

What this would mean to me?
Beth, 21, from Tiptree, “It would be brilliant to be able to work for such a prestigious brand and an honour to have won such a personal award.”

Ellie Dolan-Roberts, 21, from Sudbury, “This is an amazing opportunity and a lovely way to remember Nicole.”

Ellie Proctor, 21, from Harwich, “This is a wonderful tribute to Nicole and I feel quite overwhelmed to have been selected.”

Want to know more?
If you’re interested in a career in fashion and textiles, call 01206 712000 or visit www.colchester.ac.uk .
The Nicole Abbott Award is open to final year students studying for the BA Hons Fashion and Textiles degree at Colchester Institute.

Ten things that breast cancer taught me

November 29th, 2013

Often, a life-threatening experience like breast cancer can leave you with a different outlook and change the way you view things – from life’s various trials to the most trivial day-to-day experiences. I’ve had breast cancer twice over the past nine years, and have learned from the experience. Here are ten great things that having breast cancer has taught me:

1. Let people in
Being open about my cancer was the cue my friends and family needed to get involved. No they weren’t coming to my home to do the housework (which is a shame really), but they kept in touch every month by phone, card, letter, email and the occasional visit; they even ran races for me and had prayers said at Mass. By deliberately externalising my feelings, they knew they could show theirs, and we were all the better for it.

2. …especially your kids
My children were eight, ten and 14 when I first had cancer, and I decided that keeping them in the loop from the beginning was the best way of avoiding a bigger problem later on. The best thing I did was to appoint my sister as the official sounding board so they always had someone else to turn to and, crucially, they could ask her everything they felt they couldn’t ask me. They were with me too when I had chemotherapy, so could see it wasn’t remotely scary.

3. Shock your taste buds…
I didn’t lose my sense of taste exactly, it’s just that chemo makes food taste odd, metallic, unpleasant. My way round this was to choose comforting food that reminded me of childhood, like fish fingers and mashed potato; or that went kapow! on my tongue, like lime juice and soda water, and gingernut biscuits dunked in tea.

4. … but don’t gain weight
You’d think you’d at least lose weight but, first time round, I gained a stone which took 12 months to shift. This year when I was having treatment, I decided to see if gentle exercise would stop the weight gain before it started. I began walking, then jogging very, very slowly around the block, eventually building up to three miles a day. I didn’t gain weight; I lost it, but all the time feeling healthier and more energetic. So I haven’t stopped.

5. Get your beauty sleep
After a few weeks of looking and feeling like a zombie, I nipped the chronic insomnia that seems to accompany chemotherapy, in the bud and took sleeping pills. I was prescribed Zopiclone, which is a hypnotic drug (which means it induces sleep without affecting your mood or your sensitivity to pain), and it’s non addictive. I’d wake up feeling and looking refreshed and more than able to tackle the day ahead. When the treatment was over I weaned myself off the pills.

6. Go hippy
I didn’t know very much about reflexology but had heard it had been helpful to others in handling the side effects of treatment. To be honest anything involving having your toes fiddled with for an hour has got to be good, so I gave it a try. In fact I had reflexology the day before every chemo session and regard it as a major contributory factor in helping me cope as well as I did both physically and mentally.

7. Embrace the grey!
When my hair started to grow again, steel grey in places, white in others, I decided NOT to reach for the hair dye. As much as I wanted to go back to the security of medium-golden-brown-with-caramel-highlights, I thought I should take advantage of my situation and turn a potentially ageing hairstyle into a short, funky look. Yes, there were a few double-takes initially, but I’m happy with my new style and there are no roots to retouch; bliss.

8. Even the eyebrows?
Sadly my eyebrows didn’t grow back and this made me look tired and washed out all the time. After months of pencilling them in, I decided to get my eyebrows tattooed on. It’s a semi-permanent procedure and will need to be refreshed once a year, but it’s made a big difference to me and I mentally thank my tattooist every morning when I look in the mirror.

9. Don’t let employers get you down
When you’ve got breast cancer, the last thing you should need to do is “watch your back” at work but, as I found out first hand, not all employers behave with integrity. Some will exploit every opportunity to undermine you at the most difficult time in your life and, although it will seem hard, you have to fight back. I found the very act of making a stand and confronting my employer, despite being petrified, made me feel stronger and more confident.

10. Nothing’s THAT important
An experience like this changes you on the inside. I’m definitely more at ease with myself now. I can cry in front of strangers and not feel ashamed; I can handle difficult situations with calm; I can lean on those who used to lean on me. But, most of all, I’m just glad that I’m still on this planet and can continue to embarrass my kids and, occasionally, make them feel proud of the journey we’ve been on together.

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

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.

Tattoos after chemo

January 10th, 2012

When I was a little girl I always associated Egypt with mummies. The back-from-the-dead-and-out-to-get-you bandaged variety that I saw in films. Based on the fact that only English actors could read the hieroglyphics and open the pharaohs’ tombs, I also felt a little superior, more sophisticated than this country of pyramid builders. Yet while we Britons were discovering that wood could be used for purposes other than burning, the ancient Egyptians invented the water clock to tell the time (because the sun dial was useless at night), a calendar that had precisely 365 days in a year and the blocks, tackles, tools and moving gear to help construct monuments that are still standing 6,000 years later. Of all their inventions the one I’m personally most grateful for is the tattoo.

Tattooing appeared to be an exclusively female practice, playing a therapeutic rather than cosmetic role. Found on the mummified remains of women, often on their stomachs and breasts, it’s been surmised that theses tattoos functioned as a permanent ‘good luck’ charm to help expectant mothers through pregnancy and childbirth.

Now, of course, tattoos are the preserve of men and women. Many of us have them and for a variety of reasons, but rarely therapeutic ones. However as ‘therapeutic’ is all about beneficial effect, then I’d argue that my recently acquired tattoos definitely are.

In 2004 I underwent chemotherapy for breast cancer and, like most women on my type of drugs, lost all my hair, eyebrows, eyelashes, the lot. Everything grew back of course, although the eyebrows were a bit of a let down. In 2009, at my five-year check up, I found out that I had breast cancer again, so it was chemotherapy once more and, when the treatment finished earlier this year, I knew it wouldn’t be too long before I started to look like me again. Well my hair and my eyelashes returned, but six months later my eyebrows still refused.

You don’t realise how important eyebrows are until they’re gone. They help to shape your face, give it warmth and allow you to show concern. Without them you can also look quite hard. I became quite expert at putting on my eyebrows everyday, and I’m guessing most people thought my eyebrows were actually mine, rather than carefully applied eye shadow. But, in hot weather, I’d often come home with one and a half eyebrows, and sometimes just half; it wasn’t a good look.

I already knew, from seeing music videos of Michael Jackson as well as some of the girls in the Big Brother house, that tattoos were used effectively as semi-permanent make up, and I decided this was now probably the only option open to me. But I didn’t want to look as though I’d been ‘done’, I wanted to look as natural as possible. Here’s what I did next:

1. Do the research
Like most people, I trust personal recommendation above everything, but what do you do if no one you know has had their eyebrows tattooed on? Yup, I had to resort to Google, but it was impossible to make an informed decision, so I called some beauty editors and asked their opinion. The result was unanimous and I was directed to a lady called Debra Robson-Lawrence.

2. Understand what’s involved
Once I’d contacted her office a technician phoned to have a pre-consultation consultation. This was a friendly, reassuring chat about the treatment and what could be achieved as well as to manage my expectations. Then a date was fixed to discuss my treatment plan with my chosen technician (Debra in my case) and have a ‘trial run’.

3. Decide on the ‘look’
I turned up at the Harley Street offices, wearing my usual make up as requested. Debra studied my eyebrows and suggested that a different shape might work better and could she show me. First she used a ruler to take measurements from both sides of each eye up to my brow line; then with an eyebrow pencil sharpened to within an inch of its life, she drew in each hair with light, deft strokes. After only a few minutes she asked me to look in the mirror and I was amazed. By creating a brow line slightly above my natural line she was able to achieve a more-awake, open look. We discussed where we might make changes, but in the end I couldn’t fault her design; we agreed a date for the tattoo.

4. Get tattooed
Two weeks later I was back in Harley Street having an anaesthetic cream applied to my eyebrow area. Debra double checked that I was still happy with the shape and colour, retook the measurements and began work. I’ve never had a tattoo and was expecting to feel some discomfort, but I hardly felt anything other than a little heat now and then. And it only took about 25 minutes max. I looked in the mirror and agreed where tweaks should be made. This was done and I was back on the tube heading home, but not before I’d taken out my mirror in the middle of Harley Street and had another long look. My eyebrows were darker than expected because the skin beneath the tattoo was red from the treatment, but I quite liked that, and the shape was perfect.

5. Perfect the effect
I always knew this was a two-stage process and the full effect of the tattoo wouldn’t be seen until after a second treatment. Some of the pigment used in the tattoo will flake away naturally with the top layer of skin and the overall look becomes softer and more natural. After a month a touch up session is needed to deepen the colour, if that’s what you want, and fill in any gaps.

How long the tattoo lasts depends on your skin type, but I have a colour boost to refresh mine every six months, but that’s all I need to do. Right now I don’t even need to touch them; they’re perfect.

Just like those Egyptian mummies my tattoos have been my good luck charm; they’ve given me more confidence and a feeling of well-being, which is a great pick-me-up after cancer. And, like their tattoos, no one knows I’ve got them – except you and me.

You shouldn’t have to queue for chemo.

November 5th, 2011

I had the privilege of speaking at the National Clinical Homecare Association’s first annual conference. I was there to represent the patient perspective, and recount my experiences of breast cancer treatment both privately and on the NHS.

Here’s my speech; I hope you find it helpful:

Lorsque vous apprenez que vous êtes atteint d’un cancer, il est très difficile de réaliser complètement ce qui vous arrive. Que vous soyez jeune ou vieux, marié ou célibataire, les réactions sont les mêmes partout dans le monde: incrédulité, peur, refus… Votre cerveau refuse de comprendre et ne veut pas assimiler la majeure partie des informations données. C’est comme si vous écoutiez une langue étrangère: vous comprenez quelques mots, mais le reste est incompréhensible.

I’m going to hazard a guess that around 99% of you understood some of what I’ve just said. The odd word, phrase, sentence perhaps, but not everything. Well, that’s what it’s like when someone breaks the news that you’ve got cancer. Your brain doesn’t quite engage, and you miss huge amounts of information. It really is like someone is talking to you in a foreign language; you understand a small amount, but the rest is indecipherable.

By the time you’ve gathered your thoughts you’re in the system… havingconsultations, blood tests, an operation, getting dates in the diary for treatment, receiving handouts GALORE about side effects of the different drugs, more blood tests, meeting your breast care nurse, having treatment. But it’s good to be in the in the system, it’s there to help save your life, but you can easily feel overwhelmed, that you’ve lost control and cancer’s in control of you.

Not many of us have the ‘opportunity’ to experience cancer care both privately and on the NHS, but I did. I’ve had breast cancer twice in the last six years, so comparing and contrasting has been interesting and informative.
Initially, it doesn’t really matter if you’re on the NHS or private, when you hear the words: “it’s cancer”, you think you’re going to die and that’s it, your world’s over. Not long after that, you realise you’re not going to die and then CONTROL becomes a very important commodity.

I’d like to tell you a little story about control. My recent holiday experience in Mallorca with Ryanair in fact.
The family had had a brilliant time, and the last day was spent sightseeing in Palma before going to the airport. As soon as our flight was called, we made our way to the departure lounge and queued behind the priority boarding sign. The queue got longer, then the staff decided to change the queue for priority boarding. We all raced to the new location – this is Ryanair after all – and renewed the queuing. Then one of the staff told, not asked, told the first man in the queue to put his hand luggage in the little measuring cage. It went in after a little pushing, but that wasn’t good enough, he had to remove his laptop from the case. We all knew what was coming next: “you have two pieces of luggage, 40 Euro!” and she marched him off. We actually thought she was going to fingerprint him, but she just wanted to humiliate him, which she did, because she could. The priority queue changed again, but now most of us were locked together like a Rubik’s cube, so we all shuffled over, and when two Ryanair ground staff shouted at us to get into single file, we couldn’t. Then some of the children started to cry because the shouting frightened them and they thought their mums were going to be arrested for having oversized hand luggage. The delay in boarding, caused entirely by the staff, meant we lost our slot and had to wait in the plane for another hour and a half.

What did this teach me? That Ryanair had complete CONTROL but also that this kind of travel is an amazing masterpiece of logistics. Millions of passengers are processed and sent all round the world, very safely, 24/7. But a masterpiece of logistics leaves very little room for customer care or a bespoke service, yet we’re the paying customers.

In many ways hospitals are a little like airlines. They have to meet targets; they have to come in on budget; they have to keep the beds filled; they can’t let you ask too many questions in a consultation or the queues will be even longer than they already are; it’s a fast moving business. The problem here is that cancer’s not a business, cancer’s personal.

In 2004, when I was first diagnosed with cancer, I received chemotherapy at home. I was delighted by this, even though I didn’t know what chemotherapy was, I was on my own turf. The routine was as painless as it was simple:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• The dates and times for treatment were agreed with my chemo nurse
• I had the same nurse for virtually every treatment
• She was always on time
• The whole treatment was over within 2-3 hours max

I handled the treatment really well. I worked throughout it, only taking two days off for chemo. I had a great relationship with my chemo nurse Elaine – I could ask her anything and I’m still in touch with her seven years on. Most importantly, I’d timed the chemo to coincide with when my children came home from school. Even though I was plumbed in, we all had afternoon tea together. They could see that chemo wasn’t scary at all, and it took a load off them and off me too. I felt in control of so many aspects of my treatment and very confident about my future.

In 2009, at my five-year check-up, I found out that I had breast cancer again, another new primary. I no longer had private medical cover, but I asked my oncologist, the same one, if I could have chemotherapy at home. I received a very swift and definite ‘no’. I put forward the argument for home treatment, but it didn’t wash. So this was my new NHS routine:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• There was no choice of date or time, I had to fit in with them
• Then I had to queue…
o The first queue was for the car park (I usually ended up in an NCP)
o The second queue was in the outpatients waiting room
o The third queue was in the oncology corridor, where everyone was also weighed in public view
o The fourth queue was in the chemotherapy waiting room
o Finally, I got to have chemotherapy, sitting alongside ten people, each accompanied by a friend
o The whole process usually took five hours, but one day because of staff shortages, I was there for seven hours

And, as I rarely had the same chemo nurse, I couldn’t build a relationship as I had previously.

I still continued to work during treatment, in fact I had set up my own company, but if anyone asked me how I felt on the third day after chemo, I’d start crying, but I had no idea why. Generally I just didn’t fare as well second time around; I didn’t feel as “good”. Was it because I knew what was coming? Was it because I was five years older? Was it because I had no input? While I cannot fault the medical treatment I received, I used to hate the days I had to go to hospital for chemo.

I believe it had more to do with the lack of CONTROL, the impersonality of it all and the utter frustration of hours just spent queuing. Whether you have private health cover or not, no one should have to queue for chemo.

I’ve been very explicit about my home care and hospital care experience, but perhaps you’d like to hear how we all might be ablehelp to improve the patient experience still further? When I first had cancer the sheer amount of stuff I received was formidable. But it was also very cold and often didn’t even scratch the surface of what was for me intensely important. For example, why didn’t anyone tell me how to prepare for the possibility that I might get diarrhoea at work? Because I did. Why didn’t anyone tell me I could lose my fingernails and toenails? Because I did. Why didn’t anyone tell me that I might get cording and how to deal with it? Because I did. Why didn’t anyone tell me running would alleviate my joint pain brought on by chemo? Because it did. Why didn’t anyone tell me that I could still enjoy a drink at the end of the day, as long as it was sweet? Because I did.

I want information that I can assimilate easily; it should be delivered in a way that enables and empowers, that inspires and builds confidence; it’s about being creative with what you’ve got – just changing little things can make a big difference.

A great example of doing something very small but creative, which has improved the customer experience (and saved money too) is at Schiphol Airport in Amsterdam. Has anyone here used the men’s urinals there? There’s a small black fly embossed in each urinal. It was put there to help improve the user’s aim and it worked. It reduced cleaning times, and therefore costs, and made visiting that loo a pleasure not a pain. It’s a practice that is being adopted all over the world.

I’m sure, with a little more creative thinking, plain old information about cancer can be delivered in a far more relevant manner, more interactive, more encouraging, tailored to people’s lifestyles today, NOT the lowest common denominator. I don’t want to be told what I can’t do; I want to feelinformed about what I can achieve.
I believe there are people here today who can help make that happen.