Whatever Gets You Through the Night

Moon Over Sommers Bay - by Mum

Dear Anonymous,


I have been thinking for several hours about how to reply to your comment without sounding glib.

It seems to me that feelings of despair are an inalienable part of the cancer journey. With a diagnosis of cancer, each of us must consider the very real possibility of an early death. But although I find it scary to contemplate, death does not terrify me. What I have found devastating is the loss of hope.

At the time that I was diagnosed I was happier that I had ever been. I was in a wonderful new relationship with Nick but, more than that, I had reached a point in my life where I felt relaxed and confident. For the first time, I truly knew myself. Through the surgery and all the hideous treatments I always imagined myself returning to love and laughter with Nick, to recovering and getting back to my optimistic, beautiful life that was so rudely interrupted by cancer.

It wasn’t until Nick left me that I lost hope. I started to believe that God was out to punish me; that the cancer would slowly strip me of everything. It had taken my breast, my hair and my femininity. As a result, my lover had left me. My emotional resilience was destroyed. With that I felt that I would be unable to recover my physical health, I would relapse, my life would become an endless cycle of suffering, friends would find it too difficult to stay and so would slowly turn their backs on me, just as Nick had. Ultimately I would die alone.

It is so easy to catastrophise because, whichever way you look at it, cancer is something of a catastrophe. And it brings a particularly insidious fear: “I might return,” it whispers, “and you can never know why or when.”


In the face of all this, to long for oblivion sometimes seems the sane and sensible choice.

But my life up until now has been filled with what writers of self-help books euphemistically call ‘opportunities for growth.’ And so I have tried to put into action many of the survival skills that I have learned along the way. These are some of the things that help me. Maybe they will help you too.

When I was younger I was paralysed. At that time I learned the power of creative visualisation. I would picture myself lying in a meadow of wild flowers on a high cliff overlooking the sea. I would feel the breeze on my body. I would hear the tinkling water flowing in a nearby stream. I would watch the clouds drift white above me. I would create a sensuous, colour-drenched world in my head and then put myself in it. I experienced the very real power of prayer and meditation. I lay for months, completely immobile on a life-support machine, and marvelled as every day miracles happened all around me.

Now I do creative visualisation and positive affirmations as part of a practise called Yoga Nidra. There are many cds available that guide you through the process. I highly recommend buying one. I wrote more about Yoga Nidra in a post dated 17^th November 2009.

Through being in a twelve-step programme I have learned the value of talking to other people and sharing honestly what is occurring in my life and how I am feeling from day-to-day. I am very privileged to have this ongoing support available to me. I would encourage anyone to join a twelve-step programme if you can – and let’s face it there are twelve-step programmes for just about everything these days*. If that is not appropriate then there are many cancer support groups run by charities. And if those are too far away or too depressing or just too irritating then what’s to stop us from setting up our own support group? I think I will write a separate post about how to do that.

Spending time in rehabs and on psychotherapists’ couches has taught me how to identify and feel my feelings rather than suppress them. This can be tricky. It sometimes involves crying in public places. But that never killed me or anyone else. And it’s not just the feelings of sadness, anger and loneliness that I need to feel but also joy and love. I allow myself to really love my friends and my family, my neighbours and people on the bus. That sounds simple but it takes bottle. After all, if I love people they might reject me or let me down. Yeah! Laugh, cry, just get it off your chest. I see a psychotherapist every week and unburden myself of all my craziest, darkest, most shaming thoughts.

Writing each morning – whether it’s a diary, a blog post, a poem or simply a loony stream of consciousness – gets some of my obsessive thoughts out of my head and into my laptop. Let the hard drive carry it all around. My brain needs the space. I also write a gratitude list in the morning, just five things but they have to be five different things each day. This morning, as I was sobbing into a tissue, it occurred to me that there are some people in this world for whom a packet of tissues is an unattainable luxury. So I wrote it down, “I am grateful for this tissue.” Before bed I quickly jot down all the significant things that I did today under the headings of either ‘Love’ or ‘Fear’.

I swim. I go for walks. I do yoga. I put on make-up. I get dressed up. I lie on the floor and listen to self-hypnosis cds. I talk to my plants. I cook delicious food. Most of all I try to speak to at least one friend every day of my life.

Do I do all these things perfectly every day? Not even remotely. And it can all feel a bit false at times but this is the only way that I know how to keep going. I have to convince myself every day that my darkest fears are not inevitable. Yes, the treatments have been ghastly. Yes, Nick has been unspeakably cruel. Yes, I am lonely and afraid sometimes. But what have I gained from having cancer? I have been shown a great deal of love. The truth is that none of knows how long we have to live on our beautiful planet. Sometimes I love this world so much that I never want to leave it. The only certainty is that, one day, I will. But I now have the courage to live as I want to live.

The World Cup is on. This evening Sheldon and I have been sitting on the couch and laughing, rooting for our team-du-jour (Ghana), whooping and dancing around the living room when we scored. That got me through the last three hours.

When I think about it, it isn’t the fear of death that makes me feel so utterly bleak. It is the fear of not living.

Anonymous, I don’t know who you are but I hope that you will find a way to stay with us. I for one, need your comments on Chemo Chic.

Love

Lily

* Here is a small selection of the many twelve-step programmes that are available. Please feel free to add your own favourites in the comments section below.

AA – Alcoholics Anonymous

Al-Anon – Families and friends of alcoholics

Coda – Co-dependents Anonymous

DA – Debtors Anonymous

FA – Families Anonymous, families and friends of drug addicts

GA – Gamblers Anonymous
Gam-Anon - Families and friends of gambling addicts

NA – Narcotics Anonymous

SLAA – Sex and Love Addicts Anonymous

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.