Monday, 30 November 2009

Going Camping

Nick is jetlagged. He Skypes me at seven a.m. Sydney time, full of beans. After he has showed me the view from the window (sunny but windy), his new thongs (flip-flops to you) and a gorgeous, perfect mango that he plans to eat for breakfast, he gets out a bright blue Ukulele and plays Twist and Shout. I sing along in a freezing cold London winter’s night. Who invented Skype? It surely has made a great contribution to the quality of my life.

“Please bring that Ukulele in the camper van,” I exclaim. “Oh, ok,” he replies. Nick envisages our forthcoming camper van sojourn as being something like a small slice of Woodstock. I anticipate it being more like Father Ted.

Bad Bruce!

With Nick gone my days seem vaguely pointless. On Saturday I slept until six in the evening. I hauled my bum out of bed just in time to get over to Marylebone for a slap-up thanksgiving dinner courtesy of Ted, who is a native of San Francisco. Chilli greets me at the door with Iris hot on her heels. Unlike me, Iris is not Nick’s biggest fan so I haven’t seen much of her in the past few weeks. Well every cloud has a deep purple lining, I hope that Iris and Chilli will reappear in my social windscreen between now and Christmas.

Dinners at Mayhem Mansions are nothing if not eclectic. The food is ever a hotchpotch and the guests seem to be hand picked with the sole criterion being that they must have absolutely nothing in common. Saturday night ran true to form. A bunch of assorted strangers sat down to the traditional American Thanksgiving dinner of roast turkey, mashed sweet potato and gravy along with Muttiah’s Malaysian cabbage avec chilli and anchovies. Amongst the gang was a very old friend of mine, Esmond, an elderly actor. It turned out that he is the brother of Ted’s boss. Ain’t this world a small place? Esmond and I are now facebook friends. I couldn’t help feeling strangely lonely in the crowd. My heart lifted when I received a text from Nick letting me know that he had landed in Hong Kong.

On Sunday I had morning tea with Flossie. “How’re you doing?” she asked. I took this as an invitation to let rip with a mudslide of whingeing... from “I’m so tired,” to “I’m worried about not having any work, how am I going to afford to be away in Australia for so long?” to “I don’t know what to do about Tamoxifen.” As a professional psychotherapist Flossie is able to let all that kind of nonsense wash over her. But the decent thing to do would be to fork over £45 for the 30 minutes she endured. Instead, Flossie told me that I shouldn't be thinking about working whilst I'm recuperating from cancer treatment, then paid for my tea.

After that I retreated to the couch. I slept through Everton v Liverpool, Arsenal v Manchester United and some other football match, woke up, Skyped Nick and then went to bed. I awoke at ten this morning to the phone ringing. It was Ben.

“I feel so bad for sleeping all the time,” I moan, “how am I going to get my life back together?” Ben suggested that I stop worrying, sleep as much as I like but get some exercise. “Put on those crazy walking shoes and get out of the flat,” he said. I pull on my red beret, buckle up my MBTs and stride out into the rain lashed streets of NoGo, as Flossie long ago christened the area North of Golborne Road. I stride on as far as the Oporto café and then break for mint tea and a custard nata. “Got to build my strength up gradually,” I sensibly advise myself.

The walk definitely perks me up though. I decide to revert to my tried and proven Modus Operandi of time commitment. That is to say small actions taken on a daily basis. I have a daunting list of things to do before I leave for Australia. Just looking at the list is enough to propel me straight onto the couch. But if I commit myself to doing just two things a day, then I will easily have it all completed in time.

After my walk I feel mentally strong enough to broach the latest bit of lunacy from the Department of Work and Pensions: a fifty page form that they have sent me to fill in. I’m getting smart about this now. I know better than to tackle the DWP myself. That usually ends with me sobbing hysterically in a heap after being given the run-around for half a day or so by at least three different people who each present a different version of reality.

I call the MacMillan Benefits Helpline and speak to Kerry. She is mystified as to why the DWP would send me such a form. She agrees to call them on my behalf. Half and hour later she calls me back to say that she has spoken to a chap at the DWP who did not know why they sent me the form. She is now awaiting a call from someone else and will let me know just as soon as they contact her. Needless to say I do not hear from her again for the rest of the day.

It’s Monday so it’s back to Harley Street for me. Now, here’s a clothing tip for those currently going under the zap. I have found that I really only want to wear clothes that are soft, loose and easy to take off and put on again. I made the mistake of wearing a bra last week. “It’s soft lace with no underwires’” I thought, “so it will be fine.” Two hours later it felt as though a hedgehog was snuggling up to the underneath of my left breast. I had to pop into a public loo, remove the bra and stash it in my handbag. I spent the rest of the day trying to be sure not to pull my bra out of my bag and blow my nose on it. Right now I’m in love with a soft grey jersey dress I got from Me & Em. It’s lined, so it’s warm and soft on my irradiated skin. I wear it with leggings so I can just peel off the dress and still be half decent when lying on the bench. If I had two, I would never be seen in anything else. For days when the grey dress is in the wash I have an orange jersey trapeze dress from H&M. It looks fab with purple or teal blue thick tights.

Today I am ushered into the presence of Bruce II. I strip to the waist and in a trice I am on the bench with my arms aloft. It is the thirteenth session so I’m more than half-way through the treatment. To celebrate, radiographers Laura and Susie are going to take an x-ray of my chest.

The green laser beams flash, the readings are cross-checked and the radiographers leave the room. I listen as the lead lined door whooshes and clunks shut. Bruce II extends an arm with an x-ray film plate attached to it. There is a click, followed by a long silence. Nothing...

Then I hear the chunking of the heavy door mechanism disengaging. Susie rushes in. “Don’t move” she says. The x-ray arm won’t retract so I’m going to have to do it manually.” I do not move my head but out of the corner of my eye I can see that Susie is fiddling and pushing but getting nowhere. I feel an itch on my right temple. Laura comes in to assist Susie with the fiddling. The itching strikes up all along the underside of my shoulder. “Why don’t you get a big stick and give it a whack?” I suggest in a helpful fashion. “That’s exactly what I was thinking,” replies Susie.

As if to pay me out for my unkind thoughts, stabbing pains begin shooting up my left arm followed by pins and needles in my hands. I close my eyes and visualise myself walking on the beach. I hear the rhythmic swooshing of waves gently breaking. I feel the dry sand scrunching beneath my toes. Warm sunshine caresses on my shoulders. Unaccountably, I see myself dressed in a long turquoise print silk robe by the Barcelona designer Custo.I’m told that I will have to protect my breast from exposure to the sun for the rest of my life. When I get to Sydney Nick is planning to take me out shopping for a rashie. That is a ‘rash vest’ or nylon t-shirt with added something that apparently has the quality of protecting one from UV rays. I’ve looked at some rashies on the internet. The one thing that they all seem to have in common is being hideously garish and covered in logos. I silently recite my sankalpa: “I am healthy, I am happy, I am whole, I am sexy, I am prosperous, I am loving, I am loved, I am free!” It’s no good. My arm is definitely about to drop off. “Please may I put my arms down?” I squeak. “Oh, go ahead,” sighs Susie and as I do so, Bruce glides the x-ray plate back into its cavity. We start the procedure again from the beginning.

Sunday, 29 November 2009

Gorgeous Organics

I just heard about something fabulous. It’s an organic pampering day for women who have been diagnosed with cancer.

The event, called Made For Life Day is being organised by Spiezia Organics, a Cornish company that makes lovely organic beauty products. The founders of Spiezia Organics have an ethos of giving back, so have established Made For Life to offer support and advice to women suffering from cancer.

At the Made For Life Day there will be mini treatments: massage; Reiki; hair and wig advice and organic beauty makeovers as well as cups of organic tea and, no doubt, much organic bonhomie.

Here are the details:

Made For Life

Supporting Women With Cancer

Friday 11th December 2009

1pm – 6pm

Paul d’Auria Cancer Support Centre

20 – 22 York Road

London SW11 3QA

To book, contact Verité Reily Collins, tel: 020 7351 4434 or email:

I hear that they have space for thirty women, so get in there quick.

Oh, I forgot to mention, it’s completely free!

Singing My Cares Away

Way back in June when I started having treatment for cancer my friend Daisy said she wanted to help by giving me singing lessons. “How will singing lessons help with breast cancer?” I wondered.

I’ve come to relish my weekly singing sessions. The breathing part of the lesson is most relaxing. Then letting rip and belting out a song is simply exhilarating. Singing in the car is a marvellous stress-buster. That pushy f***er in the 4x4 that cuts you up at the lights? Just sing ‘im, as the Australian Aboriginies might do.

If you want singing lessons in West London you couldn’t do better than to approach Daisy:

Saturday, 28 November 2009

Quick Catch-Up

As I write this Nick is landing in Sydney.

Last night I said goodbye to Nick at Paddington then stood on the platform watching the Heathrow Express slip away westward. I thought that I might cry but I didn’t. I have learned that crying often happens when I somehow feel that I’m being deprived of something. But I know that I will see Nick again. And quite soon really.

Being with Nick has taken up a lot of my time and attention. I’m alone again. It seems like a good moment to catch up on where I am with treatment and future plans.

Money continues to be a worry. But so far, everything has worked out somehow or another. So perhaps I should desist from worrying. It doesn’t contribute anything to the situation. I feel compelled to tell you that the Department of Work and Pensions (DWP) have been unfailingly unhelpful. Since the beginning they have bombarded me with paperwork. Last month I received seven separate letters from them in a two-day period. Last week they sent me a fifty-page form asking me for all the information that I have already given them. They assessed me as fit for work when I was recovering from surgery and having intravenous chemotherapy. I have had to fight them every step of the way for my benefits and it has been exhausting. Six months of illness has generated a file of paper three inches thick. Each of their mad missives necessitates a telephone call, a long period on hold, an inane conversation with yet another person who doesn’t know what they are talking about and cannot help and finally a wait of indeterminate length until someone more qualified calls one back. Or, sometimes, does not. During that time one cannot leave the house nor even use the phone for fear of missing the call and having to start the whole hellish process over from the beginning again. It is not the kind of help one needs when one is ill.

The Inland Revenue, by contrast, have been marvellous. In July I contacted the Inspector of Taxes to explain my situation. After waiting three months I received a letter in reply. The inspector informed me that, as a writer, I am able to spread my earnings over two years. Thus, at a stroke, I halved my tax bill.

When the chemotherapy ended I thought I was fine and fit as a flea. With hindsight I can see that I was actually quite sick and very weak. In the past week or so I’ve begun to feel stronger, although immensely tired. Yesterday was my twelfth radiotherapy session, out of twenty-five. So I’m nearly halfway through. Since I injured my back a couple of weeks ago there has been quite a lot of fluid collecting there. I’m quite distressed about that. It feels like I’ve taken a step backward. Parts of my arm, back and breast are still numb following the surgery.

On the whole I’m really pleased with my progress. I tolerated the chemo very well. Although I felt sick and all my hair fell out, I did not have to be hospitalised at any stage. As previously noted, my hair is growing back rapidly.

The radiotherapy is really causing me very little bother.

My concern now is whether or not to take Tamoxifen. This is such a big and complex issue that I’ve been avoiding writing about it. Every day I change my mind five times before breakfast. I am swayed in one direction then the other each time I read something new or get another opinion. However, I am gradually marshalling all the information I need to make a decision. I will soon write a long piece dedicated solely to Tamoxifen and tell you everything that I have found out.

In the meantime I think about what else the future might hold. It's only twenty-six more days until I leave for Australia.

Wednesday, 25 November 2009

Green Shoots

My hair is sprouting like a rocket, so to speak. On top it's still fluff but on the side I discover a small lock growing over the top of my ear! It is almost an inch long now and looks like it's going to be grey all over. For all I know my hair might have gone grey when I was seventeen years old. I surely haven't seen its natural colour since then.

So far there's nothing to report on the eyelash front but in a certain light I think I can detect the wispy shadow of an eyebrow.

Whilst having radiotherapy I am under strict instructions not to shave my armpits. There is nothing there to shave anyway. As for my legs and 'bikini line', I'm watching like a hawk. As soon as any little hairs raise their infant heads toward the sun I'll be ready to pounce and rip them out.

Monday, 23 November 2009

Groundhog Day

Having radiotherapy treatment is very different to having chemotherapy. On the plus side it doesn’t make me feel like I want to lie down on the floor and vomit. It doesn’t make my hair fall out, nor attack the linings of my mouth and throat. It doesn’t threaten to necessitate a blood transfusion.

A person of sound mind would favour radiotherapy over chemo any day of the week, given the choice.

But there are down sides too. The chemo treatment was only once a week, or once a fortnight. And, strangely, I felt more cared for. The whole chemo unit was set up to make one feel as comfortable as possible. There were the big easy chairs to snuggle into, blankets and pillows and, above all, nurses. The nurses were always there to hold my hand if I got frightened or to make me a cup of tea or just to have a friendly chat.

Radiotherapy is more impersonal. I arrive each afternoon. “Take a seat” says the receptionist. Then five or twenty-five minutes later she calls my name and says, “Please go on down.” I take the stairs to the basement and sit in another small waiting area. It is always hot and stuffy with a distinctly medical smell. My name is called again. Every day I see a different pair of radiographers. They are pleasant and professional but they’re not interested in chatting. They see patients every fifteen minutes all day long. The job requires a high level of concentration. There is no room for mistakes yet they must try to stay on schedule. They don't know me at all. My main interaction is with Bruce or, on one occasion so far, Bruce II. The whole procedure makes one very aware that one is on a cancer conveyor belt.

My radiographers-du-jour are Patti and Laura. I strip to the waist and assume the position on the bench with my arms above my head. They reel off their readings, adjusting the bench until my body is perfectly aligned in the crosshairs of their green laser beams. Then they leave the room. Once again I’m alone with Bruce and the ever-playing Elton John cd. It seems just like groundhog day. “Hello Bruce,” I say. Bruce says nothing, just stares at me with its big eye. Elton, however pipes up. In a concrete and lead lined basement he sings to a woman on a bench and a giant machine. At the top of his lungs he voices what, I am almost certain, Bruce is thinking:

“I want love, just a different kind

I want love, won't break me down

Won't brick me up, won't fence me in

I want a love, that don't mean a thing

That's the love I want, I want love”

Saturday, 21 November 2009

Chemo Chic Videos

I’ve had a go at making some videos. The first ones are about make-up. Let me know if you like them and I’ll do some more.

Thursday, 19 November 2009

A Walk in the Park

Recently I’ve been feeling more tired. I was warned that fatigue is a common side effect of radiotherapy but I didn’t think it would come on so quickly. I’m finding that I’m too bushed at night to stay up late writing Chemo Chic. So I resolve to write in the mornings. Only today I didn’t get up until midday, so there’s that plan out the window.

“Remember what Dr Coulter said,” Nick reminds me, “rest, good food and get some exercise. We must get out for a walk today.” “Mmm-hmm,” is my non-committal reply.

By the time we’ve bathed and dressed and eaten some muesli Daisy is ringing on the doorbell. She’s come to give me a singing lesson. Daisy says that singing is “an invisible anchor for the spirit.” I have to say that I agree with her. I find singing uplifting yet at the same time grounding, if that makes sense. It’s a wonderful therapy. We start with rhythmic breathing for five minutes then kick into scales and arpeggios. Daisy encourages me to do the vocal exercises with accompanying actions, for example stomping around the room, throwing my arms up in the air and pulling faces. It takes my attention away from my fear that I won’t be able to hit the high notes. Like most things, singing is largely in the head. Henry Ford coined a much-used aphorism: “If you think you can do a thing or think you can't do a thing, you're right.”

Finally, we have a bash at a song. This week I choose Trouble by Cat Stevens. It always brings to my mind the exhilarating scene at the end of my all-time favourite film, Harold and Maude. Maude has died and Harold just speeds fatalistically through the rain lashed countryside in his E-Type hearse. I can feel the emotion in Cat’s words. It sends tingles through my entire body.

Buzzing now, it’s time to head off to Harley Street for my daily zapping. Today I have a proper look at Bruce. It really is a gargantuan machine. If Bruce were in my flat it would fill the entire living room and kitchen as well as busting through the ceiling for good measure. Dan, one of today’s radiographers, tells me that to install Bruce they removed a part of the roof then lifted it over the top of the building and dropped it down in four pieces. Bruce was then assembled in-situ, inside its concrete and lead lined basement room. In the room next-door lives and identical machine, Bruce II. One has to wonder at the logic of situating modern, high-tech hospitals in grade-one listed buildings.

It’s dark outside by now and still we haven’t had our recommended daily exercise. “Let’s go to Hyde Park” I suggest. The Serpentine car park is deserted. We walk down to the quiet water. In the lee of an island a small flotilla of ducks are sleeping. Tethered rowboats bob gently. Geese paddle silently behind us hoping, no doubt, for a stale bread crust.

At the end of the lake looms a gigantic Ferris wheel sparkling with white fairy lights. “What’s that?” asks Nick. “It must be the Christmas Fair,” I gasp with excitement, “Oh Nick, let’s go there!” We stride on, aware that we have come out with no money whatsoever, yet drawn onward, mesmerised by the lights and distant music. Before we know it we are walking in the midst of Winter Wonderland.

It turns out to be a fantastic fair. We stroll past big swings that spin around, an inflatable monster that one can walk inside of, Waltzers, Bavarian sausage stands, a Ghost Train, a Hall of Mirrors, a wooden Helter Skelter, an Edwardian penny arcade and finally and ice-skating rink. We reach the front entrance by the Queen Mother’s Gates at Hyde Park Corner. A young PR type woman with a clipboard approaches us. “Are you on the guest list?” she asks. “No,” replies Nick, “where can we get tickets?” “You can’t,” she informs us, “today is for the media only.” Not to be defeated we cry out in unison “But I’m in the media!” and then look around sheepishly to see if anyone noticed us being so rapacious. Nick flashes the girl one of his charming smiles. Under such an onslaught of foolishness she crumbles. “Well, because I like you I’m going to give you two passes,” she pronounces. We grab them with glee and run away before our good fairy can change her mind.

“Oh Honey,” I squeal, “can we go on the Waltzer?” “No, no,” counters Nick, “the giant swings first.” We go on the Waltzer and the swings. We ride the huge wheel and have our photo taken. We play games of chance and skill in the Penny Arcade. Nick is fascinated by a What the Butler Saw machine featuring saucy photos of Edwardian babes. We get utterly lost in the Hall of Mirrors and fly on mats down the big slide. Nick finds a cash machine and buys us roast beef rolls and hot sausages with mustard. At last we find our way to Zippo’s Circus tent and settle into plastic seats to watch a show of ladies being sawn in half, magnificent strong men and lithe ‘African’ tumblers. It’s pure classic entertainment.

As we finally depart, all the stalls are closed up. The German fairground workers cluster around in little groups, smoking and quietly chatting. The big monster lies deflated on the ground. We walk back along the shimmering Serpentine arm in arm and I lean my head on Nick’s shoulder. “That was the most fun,” I sigh. And it was. After cancer, every gift seems like a treasure. Every day is special. Some are simply magical.

Things I got for free today: tons of fun and a singing lesson.

Wednesday, 18 November 2009

Running Late

Yesterday I posted a lot of advice about how to relax in a stressful situation.

Today I have a series of back-to-back appointments at the hospital.

First, I’m to see Mr Hadjiminas. Since helping to move Flossie’s bed, fluid has again started to collect in my back at the site of the surgery. Next I have a massage. Oh heaven. I’ve been looking forward to that since I booked in three weeks ago. Then I have an appointment to see Dr Coulter. I’m nervous about that because I intend to ask her lots of questions about side effects of radiotherapy and Tamoxifen. My final stop is for radiotherapy.

With such a schedule, I guess it’s unrealistic to expect zero hitches. Mr H’s clinic is running late. By the time Honoria calls my name it’s already time for my massage. Nick asks the receptionist to let them know that I may be 10 minutes late.

Mr Hadjiminas is full of smiles for me and handshakes for Nick. Once the niceties are complete, I disrobe behind the screen. Mr H prods a finger into the wobbly cushion of fluid on my back. “Ouch,” I say “Hmm,” he replies, “I think we will send you down to see Dr Butler, she can get a better look at it on ultrasound.” “What, now?” I gaze helplessly from him to Honoria. “Yes, now,” replies Mr H in a firm tone. “But I’ve got a massage booked,” I wail. Honoria promises to call the therapist to see what can be done. Mr H fills out an ultrasound form. Then it’s “goodbye” and “see you next year” to Mr H. Nick and I jump aboard the lift to the basement.

As we arrive the receptionist is on the phone. I hand her the form as she replaces the receiver. “Ah, Miss Lily,” she says. “They’ve just phoned to say that you should reschedule your massage for another day.” “Oh,” I squeak. I feel as though they cancelled Christmas. I keep my chin up and try not to pout as we take a seat in the tiny waiting room. But Nick can tell. “Breathe darling,” he says, “in... two... three... four... hold... two... out... two... three... four...”

A woman sitting opposite pipes up, “Hello again. How are you?” I look at her blankly. “I sat with you the last time I was here,” she says, in an encouraging tone. “I don’t think so,” I reply, without caring how churlish that sounds. I’m not doing very well here. Nick squeezes my hand. “Anyway, how are you going?” Nick asks the woman. She looks at him blankly. “Are you well? Are you having treatment for cancer?” he persists. “Oh,” she replies, “no, it’s my husband. He’s having the Cyberknife.” “The Cyberknife?!” Nick’s eyes light up. “What is it?”

The woman launches into an enthusiastic eulogy about the miracle of Cyberknife. How it can zap tumours in hard to get places that surgery cannot reach. How her husband can get up and go straight home after the procedure. She tells us that they have travelled from Newcastle to come here and that this is one of only a few Cyberknifes in the world. It seems that this lady’s husband has been suffering from liver cancer. Following surgery the cancer returned last year and they were told that nothing could be done. They decided to do their own research and learned about this new technology. At that time the nearest Cyberknife was in Turkey. Yes, that’s right. There is also one in India and one in Malaysia. As usual, the UK follows on the heels of the developing world when it comes to cutting-edge medicine.

So, they travelled to Istanbul only to be told that the treatment could not go ahead. They were not given a reason.

Then they heard that there was a Cyberknife in London, at the Harley Street Clinic. They argued the case with their health insurance company, who agreed to pay up. That was fortunate because it seems that a course of Cyberknife treatment costs in the region of £22,000. It’s sad to say, yet predictable, that Cyberknife is not available on the NHS.

Half an hour passes by with us deep in jolly chat about fantastic linear accelerators and the sorry state of the health system. I glance at Nick. “I’m due to see Dr Coulter in five minutes.” I gasp in a tone of rising anxiety.

Nick strides out to have a word and in the next moment a nurse calls my name. I’m ushered in to see Dr Butler, the ultrasound doctor. She runs her magic seeing eye over my back and pronounces that I have fluid build-up from under my arm right down to the small of my back. “But what is it?’ I ask. “Oh it’s just kind of... juice,” she pronounces. She inserts a needle to siphon it out. Breathe... two... three... four. It’s no good. My back goes into spasm. She withdraws the needle and we start all over again. As Dr Butler begins to draw off the fluid she looks over to the nurse. “Can you get me a bigger container?” she asks. Breathe... two... three... four... “This isn’t juice,” says Dr Butler, “it’s blood. You must have haemorrhaged into your back.” Breathe... two... three... four...

Eventually I dress and rejoin Nick in the waiting room. The nurse pops her head in. “Can you wait? Dr Butler wants you to take a sample of the blood to Dr Coulter in case she wants to have it tested.” “Oh Nick, I’m so late,” I wail. “Don’t worry, I will go up and tell them.” Once I’ve got the pot of blood tucked safely in my handbag I walk up to the main reception desk on the ground floor. Nick isn’t there. “He’s gone up to the second floor waiting room,” the receptionist informs me.

I insist on wearing my new down coat from Uniqlo at all times, even though the temperature in the Harley Street Clinic is usually about the same as it is in Dubai. By the time I’ve climbed upstairs from the basement to the second floor my spindly legs are buckling beneath me. I collapse into Nick’s arms and he brings me a plastic beaker of iced water. We wait. And wait. “Oh no, now I’m going to be late for radiotherapy,” I gasp. I’ve completely given up on the breathing by now. Nick leaps to his feet and heads to the desk. “There we go,” he says, “they’ve rescheduled your radiotherapy.” How I’m going to manage to make it to all these appointments alone I have no idea. At last my name is called.

Dr Coulter is no fool. Yet she has a very caring, almost maternal side to her nature. She can tell that I’m stressed and incoherent. She talks to me in a calm, soothing tone. First, I hand her the jar of blood. “I have no idea why they’ve sent me this. Your blood is perfectly healthy,” she pronounces. Smiling, she pops it in the bin. “Yes, well,” I reply, “I’m concerned about side effects. I’ve heard that Tamoxifen can cause other cancers.” “It is true,” Dr Coulter replies, still smiling, “that Tamoxifen doubles the risk of cancer of the uterus.” My face falls. “But the risk is very small to start off with. So, the general occurrence of cancer of the uterus is about a half in a thousand. With Tamoxifen that risk becomes one in a thousand.” “I went to a talk by this woman called T.S. Wiley who wrote a book about bio-identical hormones. Have you heard of those?” I ask. “I’m afraid I haven’t,” replies Dr Coulter. “Anyway, she said she wouldn’t take Tamoxifen.” “Oh? And why not?” asks the kindly doctor. “Well, I can’t remember. At least, she didn’t really say. But she said that you should get in touch with an oncologist called Dr Julie Taguchi who wrote the book with her.” I am surprised that Dr Coulter immediately acquiesces to that suggestion. “Of course. We can email her. This has to be your decision,” she says.

Tuesday, 17 November 2009

Anxiety Busters

I had hoped that the end of chemo would coincide with the end of my worries and cares. What with everyone going on about how radiotherapy is such “a walk in the park” and so on I had imagined myself and my slightly pink breast, bathed in rainbows, tiptoeing through the tulips hand-in-hand with Nick, pausing here and there only to pluck a fresh chocolate éclair from the trees.

So I’m a bit surprised to find myself regularly breaking down in tears with Nick having to calm my frenzied bouts of anxiety. Of course money is always a worry for anyone dealing with a serious illness. Those of us who are self-employed don’t even get sick pay. Social Security payments won’t cover the cost of organic groceries, let alone health insurance, home insurance, petrol, parking, new roofs, clothes, phones, broadband, Hermès scarves and a thousand other daily expenses. So, like many people, I’ve borrowed and gone into debt to get through. I am very lucky that my sister Miranda has been able and willing to bail me out.

Another source of anxiety is the prospect of long-term side effects of the various cancer treatments. A quick google will throw up endless opinions that both chemo and radiotherapy cause other illnesses. Many of these are simply scare stories. God only knows who originates them and for what possible reason. But then there are solid concerns too. Last week I read about long-term side effects of radiotherapy on the website of Cancer Research UK. Apparently it can cause fibrosis that leads to hardening and shrinking of the breast. It can also trigger Lymphoedema.

I was quite taken aback. I feel as though I had not been fully aware of these possibilities. I don’t know how commonly it happens. Tomorrow I will be seeing Dr Coulter, my temporary oncologist so I will be able to find out more and report back to you.

But it was enough to start the little hamster of anxiety running on its wheel. Pretty soon my mind has worked its way around to the big looming unknown: Tamoxifen. When it comes to this drug, opinions are polarised. According to Suzy Cleator, Tamoxifen is the most important treatment for Oestrogen Receptor positive breast tumours (the type that I had) after surgery. Many in the medical profession swear that it’s a wonder drug that has changed the outlook for breast cancer sufferers. According to many in the alternative camp it is a destructive and misogynistic treatment that wicked drug companies have sold to credible doctors for their own greedy ends.

The inescapable fact is that Tamoxifen is known to cause blood clots, strokes, cataracts, hot flashes, headaches, fatigue, nausea, vomiting, dryness of the vagina, itching skin, rashes and cancers of the uterus. I still have a lot to find out and a lot of questions to ask. But I sometimes feel that I will inevitably have to make a decision between a disease that may kill me and a drug that may kill me.

The thing that really gets to me sometimes is that a few months ago I was told that Mr Hadjiminas had completely removed the tumour from my breast. The more I learn the greater seem the risks associated with what I had understood to be a ‘belt and braces’ approach.

I’m telling you all of this because you too may be feeling anxious about chemotherapy, radiotherapy or Tamoxifen. You are not alone. I will write more on the matter in the future. But even those who have studied and researched for many years disagree. We simply must do our best to inform ourselves to a point where we feel comfortable with whatever decision we take and then embrace the unknown. In the end, there are no wrong decisions.

Although the situation is disquieting, indulging worry and fret makes no positive contribution. On the contrary, it increases our stress levels. Here is a roundup of all the different techniques I have used for alleviating anxiety.

Breathing. This is obviously a good idea, yet I forget to do it. When anxiety strikes I find myself all tangled up, holding my breath or breathing out when I should be breathing in and then gasping for air. Then I remember to take a minute or two just to calm myself with controlled breathing. Count slowly to four then breathe in for a count of four. Hold your breath for a count of two. Breathe out for a count of four. Hold your breath for a count for two. Breathe in for a count of four...

Singing. No need for talent, just grab a hairbrush and put on an Abba cd. Dance around the living room warbling, wailing and screeching your head off. It creates harmonious resonance in the body and floods the lungs with oxygen. Singing in the car is a fantastic stress buster.

Crying. Don’t hold it in. Go to see a weepy movie and have a good old cry. I always keep a pocket packet of tissues in my handbag these days.

Walking. Don your trainers, or socks-n-crocs if your toes are sore, then hit the streets. Walk slowly and with a rhythmic pace. As you walk try to simply release any thoughts that come into your head. Use this simple mantra: "let go". Think l-e-t as you breathe in. Think g-o as you breathe out.

Yoga Nidra. Put some dolphin music on if that’s what floats your boat. Or Mozart. I listen to a wild soundtrack called ‘Wind and Rain’. Lie on the floor in Savasana. That is on your back with your legs apart, your arms resting palms up at about 45 degrees from your body, your neck extended and your chin tucked in slightly. Savasana literally means ‘corpse pose’. Begin to breathe regularly from your diaphragm. Close your eyes and as you breathe bring your attention to your third eye, the place between your eyebrows. Now say your Sankalpa out loud, three times. Sankalpa is something like a positive affirmation. This is my Sankalpa: “I am happy. I am healthy. I am whole. I am sexy. I am prosperous. I am loving. I am loved. I am FREE.” Next scan your body, checking for any tension or contracted muscles. Start with each finger on your right hand, the palm, the back of your hand, the forearm, the elbow, the upper arm, the shoulder, the chest, the side, the waist, the hip. Repeat on the left side. Next scan each leg from the toes upward, in turn. Scan your spine, neck scalp, ears, face and throat. Relax any areas of tenseness that you feel. Next, imagine your body to be very cold, as if standing in the snow in bare feet, then feel your body to be warm, as if sitting on a sunny terrace. Then feel your body to be very heavy, sinking into the floor. Then light as a feather, hovering above the carpet. Next, imagine yourself walking in a lovely place – somewhere that is special to you. Feel the earth beneath your feet, the breeze on your face. See the sunshine, smell the flowers. Find a comfortable rock beneath a tree with a wonderful view of your world. Now repeat your Sankalpa three times again. Bring yourself back to now by wriggling your fingers and toes and then having a lovely stretch.

Oh, there are lots of strategies but I’m tired now. That should be enough calming measures to keep you and I both sane for today. More later.