Phoenix Rising

I really didn’t want to have chemotherapy.  Not only did I not want to lose my hair, but I didn’t believe in it.  Surely something which was going to damage my immune system and kill healthy cells was going to poison me, and in the long run weaken me, making it more likely that I would have cancer again.  It was all so quick, and I didn’t know what the hell I was doing, so I had to put trust in my surgeon, who did seem to know what he was talking about, yet I still struggled with the idea as the day drew closer, especially as I had been told this treatment was just ‘preventative’.  On the lead up to my first treatment, I talked to friends and family, and would often use the word ‘poison’.  I clearly had an issue, and I knew this type of language was not going to help me get better.  So there I was, stuck between a rock and hard place – my gut said, ‘don’t do this’, and my head said, ‘you don’t have a choice’.

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I have a clear memory of those first few chemo sessions.  I was hysterical.  I entered into the ward, and saw lots of very sick people around me – grey, no light in their eyes, and weakened bodies.  What on earth was I doing?  I didn’t belong here and I was going to become one of ‘those people’ and my life would be over.  I cried hysterically, so much so, they sent the psychiatrist in to see me.  They wanted me to take anti depressants, but to my mind, it was perfectly understandable that I was upset, and anyway I didn’t want any more crap in my body.  I also hated the port that had been put under my skin and made me look like a robot.  It gave easy access for the chemo drugs directly into my veins, and is something which usually stays in the body for two years.  I couldn’t stand looking at it- not only did I look like some sort of futuristic robot, with a large implant under my skin, but the idea that I could just be plugged into the machine was a dystopian  nightmare.

So what to do?  I knew it was important to believe the treatment was going to make me well, but as it was ‘preventative’, it was very hard for me to get my head around the idea that this was helping me.  My friend Andrea, a medical doctor with experience of cancer care told me to imagine the chemo as if it was little particles of light cleaning my body.  When I was plugged into the machine, I should try to meditate on this, rather than the idea I was being poisoned!  My dialogue (inner and outer) focussed on the idea of re-birth, a renaissance, phoenix rising – I was going to come out of this stronger, fitter and with purpose.  This gave me the strength to get through it, and rather than be a victim of cancer, I was going to try and turn it into a positive.  So, over time I came to accept what was going on (or was so weak, I didn’t have the energy to fight back!), and I also became far more empathetic to the people around me in the hospital – rather than thinking of these people as ‘the other’, I felt we were all in this together, no matter what stage we were at.

One day I shared a room with a lady who was wheeled in on a trolley.  She was literally wasting away – she could have been 40 or 80, it was impossible to tell.  I remember the two ambulance men (built like rugby players) lifting her gently onto the bed, and then with immense kindness one of them placed her soft slipper back onto her foot.  Later in the day a nurse came in, and spoke to her in a calm reassuring voice, and on leaving kissed  her on the forehead.   With these gestures I was struck by the humanity of all the staff  – it outshone the treatment and it helped me to face this terrible challenge.

I still find it difficult when I read things about chemotherapy and the lasting damage it can do, but all the dreadful side effects are slowly melting away, and I’m hoping my positive frame of mind is helping my body to make a full recovery.

Regime Change

One of the first changes I made after discovering I had breast cancer was to my diet.  At first I was blown away with the amount of information, not just on the internet, but in well-intended emails which arrived in my inbox.  If I only ate more celery, carrots, flax seed, avocados, broccoli…..the list went on….I would be cured.  I probably would have done the same thing had it been a friend of mine, thinking I was helping, but I actually had to tell people to stop.  I was so stressed by the whole diagnosis, trying to get my head around what was about to happen, I couldn’t cope with the ‘quick fix’ solutions which were being offered.

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I wanted my liver to be in good shape, in preparation for all the toxins which were about to be put into my body – general anaesthetic, chemo and radiotherapy.  I thought I ate pretty well, but everything I read stressed the importance of cutting out dairy, sugar, meat and alcohol.  At the beginning I think I went a bit overboard.  I even tried only eating alkaline foods – the theory is, cancer cannot survive in an alkaline-only environment – but saying no to fresh in-season organic tomatoes seemed crazy.

I lost weight very quickly, but the nurses at the hospital stressed the importance of having some protein to keep me strong in terms of energy and in building muscle mass.  In the end, after a slightly extreme beginning, I made a no sugar, dairy, meat and alcohol rule in the house but I could eat anything (within reason) out of the house.  My daily diet usually included porridge (with lots of seeds, nuts and fruit) in the morning, and then vegetable soup for lunch, then something with beans or pulses for dinner. The other thing which happens of course with chemotherapy was my appetite was pretty low, but I would make an effort to eat regular small meals to keep my strength up.

According to my friend Andrea, an expert in Chinese medicine and healing foods, chemotherapy makes the body cold, so you should only hot foods.  Conversely, radiotherapy heats up the body, so it’s important to eat cold or cooling foods, to create balance in the body.  This is one rule I stuck to throughout the treatment.

There is tons of advice out there about miracle cures, as well as the properties of various foods, but I found it too difficult to make extreme changes to my diet – mainly I just didn’t have the head space for it.  For me, cutting out meat, sugar, dairy and alcohol made it much easier on my liver to process all the other toxins my body it was having to deal with.  I drank loads  of water too, of course, and following the hot/cold rule made a lot of sense.

On a final note, I find it interesting that French hospitals take nutrition very seriously, whereas friends of mine in the UK had no nutritional advice – quite the opposite – the rule was, ‘carry on as normal’.  More worryingly, a friend’s mother in the US was told that she should absolutely not make changes to her diet during her treatment.  It’s almost as if the Anglo-American conventional medical culture is positively hostile to any form of natural healing.

 

 

Making Up is Hard To Do

When you lose your eyelashes and eyebrows, you lose definition in your face.  Suddenly you look ‘sick’ to the outside world, and almost unrecognisable.    Your skin tone also changes, so doing your make-up is quite a challenge.  It’s also not advisable to have any tattooing or micro blading done, due to the risk of infection, so you need a few tips and tricks to try and make you feel more human.

 

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The basic rule, is ‘tone it down’.  If you go too heavy on the make-up, you’ll end up looking like a clown.  I was given advice by make-up artists who visited hospitals during my chemotherapy and radiotherapy.

  1. Eyeshadow is your friend.  It softens the face and adds definition.  Choose a lighter colour than normal, and always take it from the outer corner, moving inwards, and avoiding the inside of the lid.
  2. Use white eyeliner on the inside of the eye.  This will make your eyes appear brighter and less ‘sicky’.
  3. Use an eye pencil, lighter than your normal shade, definitely not black and draw a line just above where your eyelashes used to be, to give the impression of eyelashes.
  4. Use a brow pencil, go a couple of shades lighter than your normal hair colour, and gently draw on your brows, but go easy.
  5. Finally, dab a little colour on your cheeks or lips, to make yourself feel human again

Failing this, just wear a large pair of sunglasses when you go out!  It may sound vain but one of the things I dreaded with chemotherapy is taking my natural glow away.  It does disappear during the treatment, but it starts to come back gradually, and I hope I will be in full blossom soon….

Pickled Apricot

One of the weirdest things I did during my breast cancer treatment was to put a pickled apricot in my belly button before every chemo session.  It’s actually called Umeboshi, a Japanese pickled apricot, which can be bought in jars from health food shops.  My friend Andrea who is an expert in Chinese healthcare explained that this would be effective in combatting nausea during the chemotherapy treatment.  The navel is the centre of the body, and the properties of the Umeboshi balances its energies.

 

 

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So how do you fit an apricot in your navel?  Here’s how.  You take out the stone of the apricot, and then wrap the Umeboshi in gauze and carefully place it in your belly button.  Then tape it to secure it.  You leave it in for as long as you feel necessary, so it could be 24 hours, or it could be five days.  I generally took it out after five days, when the worst of the chemotherapy was over.  The dressing itched slightly, and I always knew when I’d had enough.

So does it work?  Well, I certainly didn’t suffer too badly from nausea.  I was never sick, but I never had much of an appetite.  The hospital wanted me to take anti-nausea medication, but I refused it.  I’d just had enough, so even if by putting a pickled apricot in my belly button acted as a placebo, then I think it helped.

For Whom the Bell Tolls

I remember as I was nearing the end of my treatment, an Irish friend Anne told me about a large bell in a cancer wing of an Irish hospital.  When patients had finished their treatment, they were encouraged to ring the bell to mark the end – a sort of celebration – it seemed like a lovely idea.

When I first heard about this, I couldn’t get the image out of my mind.  I couldn’t wait for my treatment to be over, but would it be a celebration?  Every time I imagined ringing the bell I wanted to rip it off the wall.  Rather than it being an ‘air punching’ moment, I imagined screaming out, relieved it was all over, but angry too that I had been subjected to this treatment.

pexels-photo-633497.jpegAs part of my ‘therapy’ I would listen to songs on Spotify whilst driving back and forth to the hospital.   The song Ballerina by Van Morrison would often crop up on a playlist from his album Astral Weeks.  One of the lines of the song is ‘All you gotta do is ring a bell’.  The song went round and round in my head, conjuring up the vision of me trying to ring the bell in the hospital.  While singing along there would be tears rolling down my face.

As the final day of radiotherapy neared, I was exhausted and literally burnt out.  I stared at the wall during the treatment and then pulled my gown back on, feeling numb.  The radiologist turned to me at the end with a smile on her face, and said ‘this is your final session.’  I just burst into tears, sobbing as an enormous weight lifted from my shoulders.  She comforted me by saying that I had been well dressed with make up on every day.  I replied ‘yes, I’ve tried to be strong for too long.’

It’s a Cover-Up

I’d always presumed I would wear a wig if I lost my hair after chemo.  My friend Chloe had given me her old ‘breast cancer’ wig which was a good fit and the same colour as my hair, so it was left in a drawer until Doomsday.  The fact was, when my hair did start to fall out, my scalp became very itchy and bumpy with some sort of rash.  My instinct was to wrap it in something very soft, but the inside of the wig was harsh and coarse.  What to do?pexels-photo-936559.jpegAt the point my hair began to fall out, my friend Philippa came round to see me.  I was distressed because it had started to appear whenever I sat down – the sofa, the dining room table, my pillow……she suggested wearing a turban, and set about looking on the internet for scarf tying tutorials.  Now the thing about Philippa is that she is an ex-Vogue stylist, so I knew I was in good hands.  Philippa also runs a cool online brocante shop Duck’s Nest Vintage www.etsy.com/shop/Ducksnestvintage?ref=ss_profile

Rather than look like I should be scrubbing steps, I tried to channel Sophia Loren or Liz Taylor on board a Mediterranean yacht in the sixties.  It was also winter, and our house is very drafty, so wearing a scarf round my head also kept out the excruciating cold which my newly shaved head experienced.  I found a large oblong scarf the easiest to wrap around my head, rather than the square scarves which create a different look.   Here’s the link for Liberty scarf tying tips: www.youtube.com/watch?v=0k4xMtHQMdg

Later on, as my hair started to grow back, and the weather became warmer, it became difficult to wear scarves around my head, as it was just too hot.  It was also the period when I’d lost my eyelashes and eyebrows, so I was feeling particularly gloomy about my looks.  I’d been given lots of beautiful square silk scarves – some from my stepdaughter who’d recently visited Beirut.  My hair was growing back, but it was more like a peach fuzz, so it couldn’t really be exposed, together with the fact that I had developed a sensitivity to the sun due to the chemo.  My friend Jeny Sugg came to the rescue.  She often wears funky scarves, and has a cool retro style, and persuaded me to create a more fun look with large glasses, hiding my lack of eyebrows and eyelashes, together with square scarves tied with more volume on top.  Here’s the link https://www.youtube.com/watch?v=HXWgVQweGVY&t=276s.  Jen makes beautiful handmade items such as knickers, cards and cushions – she also has an online shop https://www.etsy.com/shop/frenchkitschdesigns?ref=search_shop_redirect

I now have a Pixie cut hairstyle, so I am scarf-free.  It’s such a relief to have my head uncovered, but looking back the scarf provided little moments of joy during a pretty dark period.

Losing It

I didn’t expect to have chemo – I’d found the lump early so the doctor told me it would most likely be a course of radiotherapy after the operation.  When the news came that it was an aggressive cancer, and that I was to have chemo over the course of five months, I was gutted –  mostly because I would probably lose my hair.pexels-photo-973401.jpegAfter receiving my initial diagnosis I’d deliberately left my hair long.  In a strange sort of way I was almost willing it not to happen, trying to subliminally convince my doctor that chemo wouldn’t be necessary.

Why was it so painful?  For me it was a symbol of my strength, health and vitality.  The shock of possibly losing it was heartbreaking.

The doctor told me that a cold cap during chemo sometimes worked in preventing hair loss.  As I moved closer to my first chemo appointment, I knew I needed to prepare myself which meant a short haircut.  The cold cap needed to have contact with the head in order to work, and also if my hair was to fall out, then it would be easier to deal with.   Going to the local hairdresser just seemed too difficult as I imagined staring at myself in the mirror sobbing as long strands of my auburn hair fell to the floor.

Then one of those little miracles happened, which seem to happen all the time when you’re going through a traumatic experience – ‘out of the blue’ our neighbour mentioned to my husband that she was an ex-hairdresser.  I was relieved to be able to have my hair cut in the privacy of my bathroom.  When Fiona came round the following day, I deliberately chose a seat which wouldn’t allow me to see my reflection, I just trusted her to do her job. I closed my eyes so I couldn’t see my hair fall, and then after it was all over, I looked at myself in the mirror, and it wasn’t too bad.  That was the easy part though.

The first time I went to hospital for chemotherapy the nurses came in every fifteen minutes with a cold cap – a soft helmet which is kept in the freezer – to try and paralyse the hair follicles I presume.  Unfortunately the cap didn’t work, it just gave me a excruciating headache – after three sessions my hair began to fall out….

My hair already seemed thinner, and then I began to notice hair on my pillow, the kitchen table, the sofa….wherever I sat really  It was also extremely itchy, as if a rash had developed on my skull.  A couple of days later,when I put my hand on my head, the hair would come out in handfuls.  I found this so distressing, more than anything it was the feeling of hopelessness, and the lack of control.  One morning I woke up and decided it needed to be shaved off.

Luckily my good friend Andrea was staying with us during this time.  I asked her that morning if she would do me the honour, but knew it was a big ask.  Andrea was a doctor, so immensely practical, but also extremely kind and sensitive.  I had thought of asking my husband to do it, but I think we would have both been too upset.

Sitting in the bathroom, I put my head in her hands, literally and metaphorically.  She first cut it as short as possible with scissors and then started to shave it, gently and methodically.  Tears rolled down my cheeks, as I had flashes of negative images of Jewish people having their heads shaved in Nazi Germany or women shamed after the war being paraded through the streets.  I needed to take my power back, rather than be a victim so I tried to change my vision.  I started to think of Buddhist monks or strong female actresses such as Sigourney Weaver who had shaved their heads for a film role.  This somehow made me feel more powerful.

After it was shaved, I put a soft cotton/silk cap on my skull, but wouldn’t actually look at my head for at least a week.  I then needed to decide how to cover my head for the outside world, but that’s another story.