Archive for the ‘cold cap’ Category

Ten things that breast cancer taught me

Friday, 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.

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.

The hard man haircut’s not me

Thursday, September 30th, 2010

It was official; the malignant tumour in my right breast, together with 19 lymph nodes had been removed, so chemotherapy was next. As a sensible mother of three, working full time as managing director of a PR consultancy in Essex, there were some very practical questions that had to be answered: How many sessions will I have? How long does each one last? Can I carry on working? How will I feel? What are the side effects? What about my weight? Can I still drink wine? But the only question I truly wanted an answer to was: Will I lose my hair?

If the script had called for it, like Sigourney, I’d have shaved my head; if I’d been an ancient Egyptian, ditto; if I’d been Britney… well, maybe not Britney… for most of us keeping our hair on is a number one priority. When I realised there was a chance I might lose my crowning glory, I felt a tiny pin prick of panic. I love my hair, it frames my face, softens my features; I really couldn’t imagine being without it; I even began to sympathise with all those men I’d ever berated for their comb-overs, my dad included.

I’d been told that, with the chemotherapy drugs prescribed, there was a 99.9% certainty I’d lose the lot. I was also told it was likely to happen around two and half weeks after my first chemo session. Well I knew in my bones I’d hang on to every last strand, but on the off chance that my surgeon, my oncologist, my oncologist’s PA, my chemotherapy nurses and a good friend (whose hair had just grown back after treatment with identical drugs) were right, I should be prepared.

If I wanted to carry on as normally as possible, I’d need to look as normal as possible. I wasn’t prepared to try the bald look (blessed with Natalie Portman’s features, I might have thought otherwise), and I’m not into scarves, so I’d need a wig. My hairdresser, Antoinette Beenders, recommended I make an appointment at wig and hairpiece specialist, TrendCo, in Notting Hill and even picked out some styles she thought would suit me. One of my sisters came with me, not just for moral support, but also to prevent me coming out looking like Hayley Cropper from Coronation Street, or even Dolly Parton. Don’t get me wrong, their wigs suit their personalities but they do look like wigs.

Once inside this emporium, I took my time and listened to the invaluable advice of the assistant. I kept narrowing the choices down and eventually went for a shortish, chunky cut with plenty of highlights and height. She was called Roni. The assistant trimmed the wig while I was wearing it and, I have to admit, even without makeup and wearing my worst comfy gear, I looked pretty good.

So I was organised when, exactly 19 days after my first chemotherapy session, the “will it/won’t it?” suspense was over. I was at a meeting with a client, a rather long one as it turned out, and every time I moved my head, I became aware that some of my hair was slowly floating down onto my shoulders. When I say “some” that really doesn’t describe the disconcertingly large amounts that were beginning to fall out. But I didn’t panic, and I didn’t want to put my client in an awkward position (we had only just won the business). By keeping my head very, very still I managed to arrest the fallout temporarily and, at the end of the meeting, walked very carefully back to the car. The area behind the driver’s seat resembled the floor of a hairdressing salon; my shoulders now had fur epaulettes. It had started. I was surprised that I didn’t feel more anxious than I did, but I had so much to do; I was taking the children to London for my sister’s 40th birthday party that evening.

When I got home I tied a very large scarf around my head, turban style. That scarf remained in place during the journey to London and throughout the night until I presented myself to a hairdresser the next morning and asked her to shave my head. Well, I was trying to ask her to shave my head, but I couldn’t get the words out, so I broke down instead. Up until this moment I had felt in complete control, now I knew I was definitely losing my hair I could feel the fear. The hairdresser was a wonderful, gentle Geordie, who had obviously dealt with many women like me. She told me that shaving my head would be too much of a shock for my children and me, and gave me an Annie Lennox instead. I’d had short hair in the past, but as short as this style was going to be, there would be no style at all within the next few weeks. I felt ugly, unfeminine but, most of all, very exposed.

At my sister’s I showered, put my face on, put my dress on then put Roni on. I preened a little and was very pleasantly surprised. I actually looked better wearing a wig than I did with my own hair, not just my face, the whole outfit. I took a deep breath before joining the party; I knew I would be the focus of a lot of attention as my family and friends were all aware of my cancer and treatment, but they didn’t know I would be wearing a wig. The compliments on how well I looked came thick and fast, and I graciously accepted them all. I experienced a real high later when I learned that not one guest realised my hair wasn’t my own. It was that good.

My new look received a similarly positive reception at work the following Monday, but when I got home that night, despite my short back and sides, the hair loss seemed never ending and I couldn’t stand it. With the help of my sister and my children, we all took turns to shave my head. If I felt unfeminine before, it just got a little worse, and I still had to face clients.

I would normally be in London for meetings a couple of times a week, but today was a little different; I was wearing Roni. I waited on the platform, every now and then catching the reflection of my perfect hair on the glass covered posters, and felt a little more confident. The PA system suddenly sprang to life and announced that a fast train was coming through and we should all stand back from the edge of the platform. The roar of the Norwich to London express was getting louder and louder, and before I could scream “toupée glue!” a violent and cruel wind began snatching at my head, doing everything it could to dislodge and then fling my pride and joy into the path of the train. I had to act fast. I snatched my mobile phone from my bag, clamped it to my ear, and held on to the hair closest to the phone with my thumb and forefinger, with my other hand, I pressed my fingers over the ear, ostensibly to hear better, but securing the other side of the wig at the same time. As the intercity train rocketed past in a noisy buffeting blur, I held on for dear life. It worked, but I knew my mobile phone was now a vital part of my outdoor uniform.

After 12 weeks my hair started growing again; but before I could feel any elation, my eyelashes and eyebrows did a disappearing act. When you’re 48 years old this is not a good look, believe me. But getting ready for work was a breeze: I no longer had to mess around with my hair because it was always perfect; as there was nothing to put mascara on, I framed my eyes with kohl pencil so you really didn’t notice the absence of eyelashes; I also became expert at using eyeshadow to produce perfect eyebrows.

You know what they say: if you fail to plan, you plan to fail, and I think I coped very well with hair loss, because I made sure I had the wig. But how do you plan for the more embarrassing side effects of chemotherapy? What about the diarrhoea? Yes, the fact that you could get diarrhoea is well known too, but no one helps you prepare for it. For example, do you sit on the loo for days on end just to be safe, or can you go to work and carry on as normal, secure in the knowledge that your body will give you ample time to find a toilet?

I can now tell you from my own bitter and personal experience that you don’t need to sit on a loo for days on end, you’ll just wish you had. One day, on the way back to Liverpool Street Station after a meeting, the unthinkable happened. I could be polite and say, “I had an accident”, but that would only dull the sheer heart-stopping horror of my knicker-filling moment. There was no warning, no premonition, no chance to take any evasive action whatsoever. I really wanted to curl up and die, but I saw the sign for a public loo and headed there instead.

When I got home, a gut-wrenching, buttock-clenching 60-minutes of misery later, I confided in my sister who, practical as ever, put together my emergency shit kit: scented nappy sacks, night-time sanitary towels, wet wipes, tissues, spare pair of knickers, body spray and Imodium Instants. And from that moment on, I never, ever left home without it. Although I had many close shaves throughout my treatment, at least I was prepared, but I shouldn’t have been in that position in the first place, should I?

Another side effect came completely from left field. It wasn’t covered by any of the notes that accompanied the chemotherapy drugs, which at least hair loss and diarrhoea were. So you could have knocked me down with a feather when, after 15 weeks, my fingernails and toenails started flaking off. It was a nuisance, as I couldn’t even put a jumper on without one of the nails catching and causing me some toe-curling moments. Worse than that was the ugliness of it all. My fingers looked quite unsightly, so much so when we had presentations to make at work to clients, I would get one of my colleagues to press the buttons, show the boards and generally do everything to ensure I didn’t have my hands on display. As my feet weren’t on show, I only had the pressure of shoe leather on nail-less toes to contend with. Painful, but not unsightly.

It’s sometimes hard to put my finger on what exactly was the worst side effect of the treatment. Certainly the diarrhoea attacks came top of my list, whereas I always thought it would be hair loss, which actually came second. Add to that insomnia – a common affliction for cancer patients – the temporary loss of my taste buds and throat and mouth ulcers galore, I sometimes felt truly grotty. I would have looked it too if it weren’t for the miracle of makeup and that darned fine hair.

Even the eyebrows?

It was official; the malignant tumour in my right breast, together with 19 lymph nodes had been removed, so chemotherapy was next. As a sensible mother of three, working full time as managing director of a PR consultancy in Essex, there were some very practical questions that had to be answered: How many sessions will I have? How long does each one last? Can I carry on working? How will I feel? What are the side effects? What about my weight? Can I still drink wine? But the only question I truly wanted an answer to was: Will I lose my hair?

If the script had called for it, like Sigourney, I’d have shaved my head; if I’d been an ancient Egyptian, ditto; if I’d been Britney… well, maybe not Britney… for most of us keeping our hair on is a number one priority. When I realised there was a chance I might lose my crowning glory, I felt a tiny pin prick of panic. I love my hair, it frames my face, softens my features; I really couldn’t imagine being without it; I even began to sympathise with all those men I’d ever berated for their comb-overs, my dad included.

I’d been told that, with the chemotherapy drugs prescribed, there was a 99.9% certainty I’d lose the lot. I was also told it was likely to happen around two and half weeks after my first chemo session. Well I knew in my bones I’d hang on to every last strand, but on the off chance that my surgeon, my oncologist, my oncologist’s PA, my chemotherapy nurses and a good friend (whose hair had just grown back after treatment with identical drugs) were right, I should be prepared.

If I wanted to carry on as normally as possible, I’d need to look as normal as possible. I wasn’t prepared to try the bald look (blessed with Natalie Portman’s features, I might have thought otherwise), and I’m not into scarves, so I’d need a wig. My hairdresser, Antoinette Beenders, recommended I make an appointment at wig and hairpiece specialist, TrendCo, in Notting Hill and even picked out some styles she thought would suit me. One of my sisters came with me, not just for moral support, but also to prevent me coming out looking like Hayley Cropper from
Coronation Street, or even Dolly Parton. Don’t get me wrong, their wigs suit their personalities but they do look like wigs.

Once inside this emporium, I took my time and listened to the invaluable advice of the assistant. I kept narrowing the choices down and eventually went for a shortish, chunky cut with plenty of highlights and height. She was called Roni. The assistant trimmed the wig while I was wearing it and, I have to admit, even without makeup and wearing my worst comfy gear, I looked pretty good.

So I was organised when, exactly 19 days after my first chemotherapy session, the “will/won’t it?” suspense was over. I was at a meeting with a client, a rather long one as it turned out, and every time I moved my head, I became aware that some of my hair was slowly floating down onto my shoulders. When I say “some” that really doesn’t describe the disconcertingly large amounts that were beginning to fall out. But I didn’t panic, and I didn’t want to put my client in an awkward position (we had only just won the business). By keeping my head very, very still I managed to arrest the fallout temporarily and, at the end of the meeting, walked very carefully back to the car. The area behind the driver’s seat resembled the floor of a hairdressing salon; my shoulders now had fur epaulettes. It had started. I was surprised that I didn’t feel more anxious than I did, but I had so much to do; I was taking the children to London for my sister’s 40th birthday party that evening.

When I got home I tied a very large scarf around my head, turban style. That scarf remained in place during the journey to London and throughout the night until I presented myself to a hairdresser the next morning and asked her to shave my head. Well, I was trying to ask her to shave my head, but I couldn’t get the words out, so I broke down instead. Up until this moment I had felt in complete control, now I knew I was definitely losing my hair I could feel the fear. The hairdresser was a wonderful, gentle Geordie, who had obviously dealt with many women like me. She told me that shaving my head would be too much of a shock for my children and me, and gave me an Annie Lennox instead. I’d had short hair in the past, but as short as this style was going to be, there would be no style at all within the next few weeks. I felt ugly, unfeminine but, most of all, very exposed.

At my sister’s I showered, put my face on, put my dress on then put Roni on. I preened a little and was very pleasantly surprised. I actually looked better wearing a wig than I did with my own hair, not just my face, the whole outfit. I took a deep breath before joining the party; I knew I would be the focus of a lot of attention as my family and friends were all aware of my cancer and treatment, but they didn’t know I would be wearing a wig. The compliments on how well I looked came thick and fast, and I graciously accepted them all. I experienced a real high later when I learned that not one guest realised my hair wasn’t my own. It was that good.

My new look received a similarly positive reception at work the following Monday, but when I got home that night, despite my short back and sides, the hair loss seemed never ending and I couldn’t stand it. With the help of my sister and my children, we all took turns to shave my head. If I felt unfeminine before, it just got a little worse, and I still had to face clients.

I would normally be in London for meetings a couple of times a week, but today was a little different; I was wearing Roni. I waited on the platform, every now and then catching the reflection of my perfect hair on the glass covered posters, and felt a little more confident. The PA system suddenly sprang to life and announced that a fast train was coming through and we should all stand back from the edge of the platform. The roar of the Norwich to London express was getting louder and louder, and before I could scream “toupée glue!” a violent and cruel wind began snatching at my head, doing everything it could to dislodge and then fling my pride and joy into the path of the train. I had to act fast. I snatched my mobile phone from my bag, clamped it to my ear, and held on to the hair closest to the phone with my thumb and forefinger, with my other hand, I pressed my fingers over the ear, ostensibly to hear better, but securing the other side of the wig at the same time. As the intercity train rocketed past in a noisy buffeting blur, I held on for dear life. It worked, but I knew my mobile phone was now a vital part of my outdoor uniform.

After 12 weeks my hair started growing again; but before I could feel any elation, my eyelashes and eyebrows did a disappearing act. When you’re 48 years old this is not a good look, believe me. But getting ready for work was a breeze: I no longer had to mess around with my hair because it was always perfect; as there was nothing to put mascara on, I framed my eyes with kohl pencil so you really didn’t notice the absence of eyelashes; I also became expert at using eyeshadow to produce perfect eyebrows.

You know what they say: if you fail to plan, you plan to fail, and I think I coped very well with hair loss, because I made sure I had the wig. But how do you plan for the more embarrassing side effects of chemotherapy? What about the diarrhoea? Yes, the fact that you could get diarrhoea is well known too, but no one helps you prepare for it. For example, do you sit on the loo for days on end just to be safe, or can you go to work and carry on as normal, secure in the knowledge that your body will give you ample time to find a toilet?

I can now tell you from my own bitter and personal experience that you don’t need to sit on a loo for days on end, you’ll just wish you had. One day, on the way back to Liverpool Street Station after a meeting, the unthinkable happened. I could be polite and say, “I had an accident”, but that would only dull the sheer heart-stopping horror of my knicker-filling moment. There was no warning, no premonition, no chance to take any evasive action whatsoever. I really wanted to curl up and die, but I saw the sign for a public loo and headed there instead.

When I got home, a gut-wrenching, buttock-clenching 60-minutes of misery later, I confided in my sister who, practical as ever, put together my emergency shit kit: scented nappy sacks, night-time sanitary towels, wet wipes, tissues, spare pair of knickers, body spray and Imodium Instants. And from that moment on, I never, ever left home without it. Although I had many close shaves throughout my treatment, at least I was prepared, but I shouldn’t have been in that position in the first place, should I?

Another side effect came completely from left field. It wasn’t covered by any of the notes that accompanied the chemotherapy drugs, which at least hair loss and diarrhoea were. So you could have knocked me down with a feather when, after 15 weeks, my fingernails and toenails started flaking off. It was a nuisance, as I couldn’t even put a jumper on without one of the nails catching and causing me some toe-curling moments. Worse than that was the ugliness of it all. My fingers looked quite unsightly, so much so when we had presentations to make at work to clients, I would get one of my colleagues to press the buttons, show the boards and generally do everything to ensure I didn’t have my hands on display. As my feet weren’t on show, I only had the pressure of shoe leather on nail-less toes to contend with. Painful, but not unsightly.

It’s sometimes hard to put my finger on what exactly was the worst side effect of the treatment. Certainly the diarrhoea attacks came top of my list, whereas I always thought it would be hair loss, which actually came second. Add to that insomnia – a common affliction for cancer patients – the temporary loss of my taste buds and throat and mouth ulcers galore, I sometimes felt truly grotty. I would have looked it too if it weren’t for the miracle of makeup and that darned fine hair.

Can you REALLY hang on to your hair during chemotherapy?

Sunday, February 7th, 2010

Well I’ve just had my sixth chemo session, which means, with the exception of 20 days of radiotherapy, it’s over.  I’ll have the usual few days of feeling rubbish, but I’m used to that, and I know the best way of dealing with it is by keeping busy.  What’s really bugging me at the moment is my hair.  I decided to use scalp cooling (more commonly known as the Cold Cap) to try and hang on to my locks.  It didn’t work, as I’ve lost about 70% of my hair, but I don’t believe it was a failure either.

If you’re about to have chemotherapy and you want to try the cold cap, here’s what you need to know:

  • However long your treatment takes, add another two and a half hours.  Why? Because the cold cap works by constricting the hair follicles while the treatment is taking place.  So for half an hour before the chemotherapy drugs are administered and for two hours afterwards, you have to wear that cap.
  • The ‘cap’ that you wear looks a little like a jockey’s hat and is plugged into a refrigeration system that maintains a constant temperature of minus 5.5 degrees.  When the cap is fitted snugly to your head, the freezing cold sensation that you experience is fairly intense, bordering on excruciating, but the good news is that after ten minutes you forget all about it.
  • After two and a half hours, don’t attempt to take the cold cap off because if you do you’ll pull out lots of your precious hair.  Ice has formed inside the cap and is frozen to your hair, so it’s vital the refrigeration machine is turned off, and you defrost for ten minutes.
  • How much hair you lose will also depend on what drugs you’ve been prescribed.  As my cancer was a grade three, I knew that hanging on to my hair would be difficult.  Initially, though, the fall out was fairly mild, but after the second and third chemo sessions, the hair was falling out rapidly, so I had to wear a turban to avoid shedding hair everywhere.
  • To try and keep what hair was there I was told not to touch my hair very often and to shampoo in cold water.  Well I could understand the cold water bit, it made sense to keep those follicles constricted, but if the hair was going to fall out, Id rather it fell out.  So, every morning and every evening I’d gently brush my hair over the loo bowl.  It was also a good way of gauging just how much hair was coming out.
  • What was very soon obvious was that my hairstyle was resembling Friar Tuck’s.  All the hair was disappearing from the top of my head, but staying around the edges.  Now while that was disappointing to have such an obvious and growing bald patch, it did mean when I wore a turban, my hair was visible at the front.  It looked like I had hair so that gave me the confidence to NOT wear my wig that often.  In fact I still wear my turban to work, the shops, meetings, networking events and I feel more comfortable, more ‘me’ and that’s a bonus.
  • Now my hair is growing back (steel grey fuzz is a better description), I am trying to see how the long wisps of hair surrounding it will work to my advantage.  I know from experience that when you’re bald after chemo, you need at least another seven or eight months before you have any real hair to style – and even then it’s really, really short.  This is still work in progress, so I’ll keep you posted.

How to keep your hair on despite the chemotherapy

Thursday, October 15th, 2009

I was on my way to see my oncologist for my five-year check up this July.  This was a good trip:  chemo over, radiotherapy over, all mammograms clear… brilliant.  I was going to be signed off and get on with the rest of my life (not that I wasn’t already, but somehow that five-year timescale was important to me).

All I could think of was what a wonderful occasion it was, I didn’t even take anyone with me, why would I?

My oncologist, Dr Philip Murray, is quite simply brilliant.  He’s looked after me throughout it all, been straight with me, answered every difficult and daft question I’ve ever put to him but, most importantly, he feels about 50 pairs of boobs a week, and for that I am very grateful!  He felt something in my left breast, it was small, so small that I couldn’t feel it even when he showed me.  Dr Murray thought it was probably nothing, but it must be checked out.  The mammogram was clear, so I was starting to feel better, but when I had the ultra sound scan, even I could see this small  dark  pebble-like shape.  It looked remarkably similar to the previous pebble in my right breast five years ago, but at least I could feel that one.  “Could this be a cyst?”  I asked hopefully.  After the biopsy where a few samples of the tumour were removed for analysis, I was told that it didn’t look like a typical cyst.  I reckon everyone already knew that we were talking cancer here, but needed verification.

The hardest thing I then had to do was to tell my children, who had already been through this before, but were now more cancer aware: they knew that getting cancer again could be terminal.  We all had a good cry, and I remained as upbeat as I could when I explained that getting cancer in the other boob was most likely to be a new primary NOT a secondary, so very curable.  At the time, it was of small comfort.  A week later I was told that the cancer was definitely primary, a grade 3 just like the last one, but three times smaller.  Good, I thought, at least we’ve caught it early.  So, as the summer holiday was already booked, we all went, knowing what I was facing, and all feeling undaunted by it.

On return from holiday I had the operation to remove the tumour and lymph nodes.  What surprised me was that even though the tumour was only one centimetre wide, it had spread to two of my lymph nodes, and evidence of cancer in those nodes was macroscopic.  I’d never heard that word used in this way, but basically it meant a lot of cancer was in those nodes and it was visible to the human eye.  For me the shocking question that kept coming back was:  what if I’d only had a mammogram?  That was clear, so I could have waited another year for my next  routine mammogram, and hopefully the tumour would have shown up, but it would definitely have had another year to spread.  I’d already gone macrosc0pic!  For me the mammogram only goes so far, the combination of this, the ultra sound and an oncologist who absolutely knows what to feel for, would be more accurate, not to mention reassuring.

I’ve started chemotherapy, and I know what to expect, so am not concerned and nor are my children. I’ll have one week of feeling pants, followed by two weeks of feeling fine.  Believe it or not, I’m even running three times a week during those two ‘good’ weeks.  I am doing one thing differently though, I’m trying to see if I can hang on to my hair by using the cold cap.

Five years ago I was offered the cold cap (essentially it’s a method of scalp cooling, which makes the follicles constrict around the hair during chemotherapy), but no one I had spoken to said it worked, so I declined, and I was bald before I had my second chemotherapy session.  I’m having my second chemotherapy session tomorrow, on exactly the same drugs, administered at the same time of year, and I’ve got a full head of hair!  Yes, I am losing a few strands, but certainly not as much as my girls who use hair straighteners virtually daily.  I wear a shower cap or hairnet in the kitchen and we all take it in turns to vacuum the house daily.  (My kids have all eaten my hair in the cooking over the years, and know it won’t kill them, but I can’t stand seeing my hairs anywhere but on my head at the moment.)

In truth, being bald wasn’t all that awful; I had a great wig, your family and friends get used to the new you quite quickly, but it’s the six months or so after treatment, when you’re waiting for the hair to grow back, that’s a pain.  It’s a bit like ‘a watched pot never boils’ your hair just seems so very short, for a very long time.  So I wanted to see if I could avoid that ‘wait’, and emerge from treatment looking like the old me.

I’ll keep you posted on my progress after session two.