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.

Posted in Breast Cancer, Cancer, Chemotherapy, Choice, keeping you hair, NHS, Private medical insurance, wigs | No Comments »

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.

Posted in Breast Cancer, Cancer, Chemotherapy, children and cancer, Choice, Healthcare at home, Macmillan, Medical treatment at home, NHS | Comments Off

The hard man haircut’s not me

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.

Posted in Breast Cancer, Cancer, Chemotherapy, cold cap, wigs | Comments Off

Can you REALLY hang on to your hair during chemotherapy?

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.

Posted in Breast Cancer, Cancer, Chemotherapy, cold cap, keeping you hair, wigs | 4 Comments »

How to keep your hair on despite the chemotherapy

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.

Posted in Breast Cancer, Cancer, Chemotherapy, cold cap, keeping you hair, wigs | 7 Comments »

If you’ve got to have chemotherapy, did you know you could have it at home?

July 29th, 2009

One of the perks of my job was private medical insurance; in fact I’ve always had it, but never needed to use it until I was diagnosed with breast cancer.  As you may know, medical insurance cover has many benefits; for me it meant choice as to when and where I had my treatment.  What I have been amazed to learn since then is that many patients can now get the same choices on the NHS!

This choice meant I could have chemotherapy in the comfort of my own home or I could have it in hospital with several other patients, at the same time, in the same room.  Being with others in the same situation can be a real help for some people. You can chat about the changes to your body, exchange views and even have a laugh, though you may still get chance to do this at patient group meetings or when you go for your check-up.  For those who’d prefer more privacy during their treatment, just don’t want to talk, or don’t feel well enough for company, this is torture.  I opted for home treatment.  I’d feel at ease and, more importantly, my children could see chemotherapy in action.  It’s common sense I know, but understanding diminishes fear and I believe that being able to watch me having cups of tea, chatting to my wonderful cancer nurse Elaine, and generally being relaxed during each session was an enormous relief to everyone. Me too.

When the day arrived for my first chemotherapy session, I had no time to be apprehensive, as I had to attend a client meeting that morning. (I had been told to have a very peaceful day before the treatment to prepare my body for the drugs, but circumstances at work made this impossible.) The meeting ran on and I had to race home to be there before Elaine.  We arrived virtually at the same time, and then a procedure began that would be replicated over the next six months.  I would sit in a comfortable chair with a drip next to me, a hot wheat bag, straight from my microwave, placed on my arm to warm it up before the drugs (which had been refrigerated) were administered.  While I was being warmed up, Elaine would ask me all sorts of questions before showing me the drugs and confirming the dosages with me.  She would then insert a cannula into my hand, through which all the chemotherapy drugs would be infused (which means the drugs were very gradually introduced into my body).  First though, a saline drip was set up. This would dilute the drugs as they were injected into my veins; a necessary precaution as chemotherapy drugs are, literally, poisonous and would seriously damage my veins without dilution.  Your veins may be damaged – you’ll know if this has happened because your arm will become too painful for intravenous medication – so you’ll have to change arms.  It did to me and I had to keep changing arms after my fourth treatment.

In addition to the chemotherapy drugs, anti-sickness medication and steroids were also injected, so the whole process would take between two and three hours.  The first session passed off without incident, and the children were home from school in time to see me “plumbed in.”  Once Elaine had left, the children and my sister kept checking that I was still OK.  I actually felt no different, but nevertheless we all waited for me to spontaneously combust.

After my first session, I felt no apprehension or fear.  Of course, I didn’t always feel on top of the world, but I could at least face the world.  And, as this was going to be my regime every three weeks, for the next six months, and it was helping me get better, how could I resent it?

If you’d like to know more about having your chemotherapy at home, you should contact a wonderful organisation called Healthcare at Home (www.hah.co.uk) who looked after me.  Their expert nurses give chemotherapy to thousands of patients each year in the comfort of their own homes, and most of this treatment is actually paid for by the NHS rather than private insurance. Strange but true, drugs administered in the community, in other words ‘at home’, are exempt from VAT, so that alone begins to make home treatment financially attractive for the NHS.  Add to that the resulting reduction in waiting times in outpatients and the pharmacy, the freeing up of valuable nursing staff and fewer patients needing hospital transport, there is no wonder that more and more NHS Trusts are taking home treatment more seriously.

If a home service is not offered to you by your doctor, whether you are an insurance patient or an NHS patient, just ask; there’s every chance that he or she is unaware that home treatment is available.  Your doctor should contact Healthcare at Home, and they will be able to give advice as to what is possible, so that you and your doctor can then decide whether home treatment is the best option for you. 

Posted in Anti-sickness drugs, Breast Cancer, Cancer, Cancer nursing, Chemotherapy, Choice, Drugs exempt from VAT, Healthcare at home, Medical treatment at home, NHS, Private medical insurance, Steroids | Comments Off