Dealing with Fear

DoYouFearCancer7 People talk a lot about fearing cancer. They seem to be intimately connected.

False-evidence-appearing-realWhen I was first diagnosed with breast cancer, I didn’t feel much fear. I just knew I needed to take action. From the first diagnosis until now, I have generally found my fear comes from those around me. When it visits, I have to take strong steps to keep myself “on the wagon” and fearless so to speak.

The first time I felt momentary fear was when I was having dye injected into me to locate my sentinel lymph node prior to having a lumpectomy and sentinel node removal. The radiologist was talking to me about breast cancer and likely progressions. She said you may find you need to have your ovaries removed. Momentarily I freaked out. I’d gone from being in for a lumpectomy to possibly having my ovaries out. I noticed what was happening and stopped my brain going in all directions and let go her comment, trusting my doctor had me in for a lumpectomy only.

The next occasion was the middle of the night, after my lumpectomy and the woman in the bed beside me was a few hours ahead of me in coming out of her anaesthesia cloud. She was on for a chat about all the details of her cancer, surgery and prior chemotherapy. I had to ask her to stop talking to me. I was starting to get very anxious taking on her fear. I hoped I wasn’t going to go on her journey.

fear-is-in-your-head1I came out of my first surgery feeling confident, until I went to see my surgeon. He told me I had a grade 2 cancer and would require all my left axillary lymph nodes removed, six weeks of chemotherapy, 6 weeks of radiotherapy and 5 years of hormone therapy. That’s when my fear did kick in. I thought I was losing myself, my power and my say over my life. I had become a number, a statistic. That generated a great deal of fear until I started reading, seeking more information and advice.

As I’ve said in a previous blog, the chemotherapy generated the most fear in me. As I started to lose myself, I got very scared. I thought I was dying. I sought help on a number of fronts – acupuncture, meditation, yoga, counselling, shiatsu – to assist me to deal with my fear. Meditation empowered me most and still does.

Once I had finished chemotherapy, I occasionally had friends ask if a friend, who had recently been diagnosed, could call me. Initially I said yes. These calls took me back through my whole experience, bringing up my fear. I had to decline such requests. Any mention of someone with breast cancer tends to kick start fear. Instead of talking I started this blog and have been referring people to it ever since. I hope it is making a difference.

feel-the-fearFear is never far away. Over the past 6 months I have been dealing with mild phantom breast pain and lymphoedema. It is hard not to think the worst when the pain starts. Instead of worrying, I take action and see my lymphoedema physiotherapist and lymphatic drainage massage therapist. Visiting them is always reassuring and sets my mind at rest again. Their treatments are helping my condition. As is my morning meditation. Just 10 minutes seems to set me in a great and peaceful frame of mind for the day.

A couple of weeks ago, I was at a birthday dinner and a beautiful young woman started to talk to me about her recent breast cancer experience, her treatment and life on hormone therapy. I could feel her fear. Whilst I talked a little about integrated therapies I have used, the supplements I am on and how effective they have been, I felt her fear ‘invading’ me. I know that sounds dramatic. It was palpable and difficult not to absorb. I suggested she read my blog and if she found it interesting or of benefit, then perhaps we could speak further.

o-BECOMING-FEARLESS-facebookIt took me two weeks after this conversation to stabilise myself and feel fearless again. I realised, no matter how courageous I am, fear is never far away. It’s important to acknowledge it and not let it take me over. Fear is an accomplice of cancer. I believe keeping fear at bay will assist me to stay cancer free.

The Miracle of Acupuncture

Life’s full again and so much fun. I feel on top of the world. I’m working – both paid and unpaid – and that’s a real morale boost.

I’m training to do the 50km Coastrek day walk from Palm Beach to Balmoral, Sydney in February 2014. I can feel my strength building every day that I train on the soft sand. I am so grateful for this. My weekly exercise programme includes two yoga classes, a pilates session and a walk on the other days with a few stairs thrown in to help rebuild my bone density.

Coastrek TrainingLast Saturday three of our four woman team did a 15km beach walk on Sydney’s northern beaches. It was magnificent. So energising. Then I went sailing afterwards and trimmed the mainsail over a 2-hour race. My energy is definitely back.

There’s another cog in my healing journey that I want to talk about. And that’s acupuncture. It was a pivotal treatment for 12 months. I’ve been asked a number of times, “what treatment benefited you the most during chemotherapy?” My answer is two things – acupuncture and meditation.

Japanese AcupunctureAbout six months before my diagnosis, I went to see Michelle Corban, who specialises in Japanese acupuncture. I was feeling tired and out of balance (possibly it was around when the cancer started). She checked my meridians, yin and yang, energy and pulses. The diagnosis was, my yin was depleted and my liver and kidneys were not functioning at full capacity. I had several sessions with her and my balance and energy returned.

Michelle was one of the first people I called when I was told I needed chemotherapy and radiotherapy. “Was there anything she could do for me that would enable me to not have chemotherapy?” We discussed several ideas and I sought second opinions. “There’s no alternative” I was told by my doctors. I decided then to use acupuncture to maintain my body, where possible during chemo, and to strengthen and rejuvenate it afterwards.

Instinctively I knew acupuncture would assist me during my chemo treatment. I didn’t know how. Before the first session, I had an acupuncture treatment with Michelle. The intention was to balance my body and have it be as strong as possible in receiving the chemotherapy drugs.

Acupuncture2From then on my pattern, in my three week chemotherapy cycle, was to have an acupuncture treatment 5-6 days after a chemo session and then 1-2 days before the next session. The rejuvenating powers of the acupuncture were almost miraculous. I could feel my physical strength and wellbeing shift markedly in the following 24 hours.

This was important in my recuperation. The chemo weakened both my yin and yang energy, in particular my yin – the loving, nurturing energy of my body. Once I finished chemo, I continued to have acupuncture regularly – fortnightly at first. I developed an incessant debilitating dry cough after the fifth chemo. Michelle concentrated on my lungs during our sessions with the result being no more cough.  Once it disappeared and my physical strength and wellbeing started to return, I saw her monthly. Now I have acupuncture when I feel I need it.

Yin Yang PearsWhilst acupuncture aided me enormously in rejuvenating my body, I have also needed the assistance of supplements to heal my gastrointestinal tract and my liver. I am still on a range of these. My liver is not fully healed. I’m now on a complementary diet of 75% fruit, salads, berries, bitter greens and vegetable juices. I am struggling with this. I’ve managed to shift my daily intake of these foods to 50%. I am working on increasing it a few percentage each day until I get to 75%.

I cannot recommend acupuncture highly enough for balancing and rejuvenating the body. If you decide to try it, make sure you find a good and reputable practitioner.

Acupuncture Can Help

Questing for Life

The Brain

It’s hard to believe it’s just over 12 months since I ceased chemotherapy. It’s taken the whole year to return to good health, that is, my brain functioning, what I call, ‘normally’; my energy and stamina returning; my hair ‘looking good’ and the feeling of overwhelm or the sensation of ‘I can’t cope’, gone. What a relief it is to experience the miracle of my body feeling healed.

However, this week I discovered that feeling good is not enough. I had a check up appointment with my integrated GP and was told my liver is still under par and my immune system is struggling. So now I’m on a 75% fruit, salad, bitter greens and vegetable juice diet, new supplements and a weight-bearing exercise programme. I’m finding it hard to follow this new eating plan and feel energetic all day. I’m giving it a go. A little more discipline is definitely needed if I want a healthy liver and strong immune system.

365-gratefulsPhotographer, Hailey Bartholomew released a beautiful book recently, 365 Gratefuls. It’s the result of her writing down every day, one thing for which she was grateful, during a bout of depression. She did this for 365 days and has accompanied her writings with photos she took. Hearing her interview with Sam Worthington made me think of how grateful I am for my life, my friends, my family and the opportunities that open themselves to me every day, and especially over the past 18 months.

One of the things I’m really grateful for is the Quest for Life Retreat I attended last year. After being told by my nutritionist and my integrated GP that the mediterranean diet would be best for my healing, I thought, “how am I going to cook the mediterranean way?” It is one thing to know, it is another to do!  I felt I had lost my ‘cooking confidence’. I checked out healing retreats and found Quest for Life in nearby Bundanoon.

With the assistance of my Oncologist, I set up the chemo sessions around the next Quest for Life retreat. My goal, as I said in my last blog, was to practice mediation, and reconnect with cooking and eating healthily – the mediterranean diet. Whilst there I also reconnected with myself.

Community GardenI felt very vulnerable when I was first diagnosed with early breast cancer. Who isn’t? Who could I turn to for advice and support? Whilst there is an enormous community available through the Breast Cancer Network Australia and Breast Care Nurses, I felt I needed something more. It was the powerful love and nurturing Quest for Life provides. We ate healthily, mainly vegetarian food with fresh juices and vegetables from the community garden. Each day started with meditation and yoga, learning a range of meditation techniques. Then followed seminars and workshops which gave us tools to empower ourselves given our individual circumstances. Some partners attended. They were able to express the emotional pain they were feeling.

Self-esteemThe most powerful sessions for me were two one-on-one counselling sessions where the counsellor took me deep inside myself. I connected with my power, joy, love, courage and sense of self. I forgave those who had caused great hurt in recent times.and saw myself as a ‘beacon of light’. I still use this image regularly to uplift and reaffirm myself.

Creating a collage of what we would like our lives to be over the next 12 months was the final exercise. Mine included many of my favourite things – children, healthy food, good coffee, meditation, yoga, travel and photography. Looking back, I have fulfilled on all of these goals. The final one was my recent trip to Africa – an adventure of a lifetime.

My priorities in life have changed. No longer do I work myself to exhaustion. My modus operandi is to love and value myself; to be present to the world and my environment moment by moment; to contribute to the health and wellbeing of others and to love unconditionally. Sometimes that is difficult, particularly when I’m sent unexpected challenges. Quest for Life gave me the tools to cope with this and a renewed confidence and trust in myself.

I am GRATEFUL for my health and my life every day.

Riding the Chemo Wave

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I rode a metaphorical wave last year and I find I’m still riding it. It’s easier now, but memories of chemotherapy still keep coming back.

With the cold I’ve just had, my muscles were so sore for 24 hours, I thought I was back on chemotherapy – no energy, aching muscles and fatigue. Thank goodness it was just a very bad cold that laid me low for 10 days.

Photo by Julie Geldard

Photo by Julie Geldard

I’ve now recuperated and have just spent 9 days at Airlie Beach for Race Week. I was crewing on a J70 (7m) sports boat with my husband and two friends – perfect for recuperation of every aspect of my mind, body and spirit. The best part was we had a fun week and came third in our division. Very exciting!

My recent illness has caused me to think again about last year and riding the wave of feeling and being unwell.

Thinking back, when I had the initial consultation about chemotherapy with my Oncologist, we discussed what the side effects and experience would be like. She said, “some people say, ‘I’ve had worse hangovers than this’ and others have been on the phone to the nurses and me from day one.“ I thought I’m going to be the ‘hangover’ type. For the first three sessions (of FEC) which I had once every three weeks, that’s how it was.

I would feel unwell, needing to go to bed each afternoon for an hour or two (rather than not being able to get out of bed in the morning) over the first 5 days. In the second week, my energy would begin to slowly return. In week three I’d start to feel a little like my old self. The hardest part was  knowing I was going to have another session in a few days time and start the cycle all over again.

As the treatments progressed, I began to experience a disconnection between my brain and body. My mind couldn’t work out what was going on. It wasn’t like having a virus where your mind goes with the flow of your body. It was like I was being poisoned.

Two days before the each chemo session, I would feel deeply sad and constantly break into tears when anyone talked to me.

By treatment three, I thought ‘I need help. I’m not coping with the emotional roller coaster I’m on.’ My Oncologist had told me that there are psychologists who specialize in assisting cancer patients. She’d recommended a practice on Sydney’s north shore. I got in touch with them, made an appointment and organized a referral and a five treatment programme through my GP. This enabled me to claim the sessions through Medicare. Fortunately I only needed two.

I wasn’t sure what I was so upset about. Was it that I had had early breast cancer? Was it post-operation depression? Was it the thought of beginning to feel well and then filling my body with more chemotherapy?

Even though I imagined the chemotherapy drugs as being ‘gold’, killing the cancer and making me well again, it didn’t feel like it. Going from feeling well to intentionally making myself ‘sick’ was mentally and emotionally tough. I felt desperate.

Body Surfing

With the assistance of the psychologist, I created the experience of being on chemotherapy, as being like body surfing. Sometimes you catch a wave and it dumps you. Other times you catch a wave and have a fun easy ride. This analogy made the experience easier. Whilst it didn’t stop the emotional roller coaster, I was able to accept the chemo, go with the flow of it and be okay with feeling sad and emotional. I gave up trying to stop ‘being dumped’.

Throughout my treatment I meditated every day. This gave me access to another sense of freedom which I’ll talk about next time.

Exercising on Chemo

This time last year I was supposed to be skiing. My mind was willing, but my body was completely incapable because of the chemotherapy. My doctor had said it was unlikely that I could ski and she was right.

I’ve been away skiing this week. I thought my body was healed after the physical trauma of last year. I had a rude awakening. Even though I look good and thought I was 100%, skiing really tested me physically. My muscles struggled each day, aching after a relatively short period of time skiiing – 1.5 hours on day one, 2.5 on day two, 4 on day three and the same again on day four. By the evening of day four, my body decided to pack it in and I came down with one of the worst colds and chest infections I have experienced in 18 years. I am hardly ever sick, so this has been a shock. I now realise I have to pace myself a little more slowly in my healing process than I have.

Lots of questions went through my head before I went skiing. Am I up to it? Will I still be able to ski? Will my passion for skiing still be there? What if the snow is bad, will my body be up to skiing in difficult conditions? Well, my body answered those questions very directly.

My physical confidence has been knocked in the last year. In a matter of 3 months (July to September) I went from slim, strong, physically fit and able to go trekking to being puffy with chemo fluid and physically depleted. The experience upset me at so many levels.

Before I started chemotherapy, I decided I was going to keep as active as I could. I’d seen a health programme on TV about the benefits of exercise whilst on chemotherapy. How it gives you some feeling of wellbeing, stops depression and provides some energy. I committed to exercising every day no matter how I felt and I did.

Taking steps towards good healthI walked every day, sometimes a short distance; other times further. My pace progressively slowed down to the point where some days my husband would drive me to the beach and we’d walk on the flat as far as I could. When I was very depleted, this was about 200m. Towards the end of chemo my lungs and body couldn’t provide the energy required to walk. However, enjoying the elements and breathing fresh air did me the world of good throughout my treatment and I am sure assisted me mentally.

At the beginning my integrated GP had given me a range of advice, the key one being “don’t lose any weight or muscle mass. Muscle is very difficult to rebuild.”

So I returned to yoga, a very gentle Hatha Yoga, once a week and maintained my Pilates. My instructors were enormously patient, thoughtful, loving and generous, supporting me in doing as much as I could.

Yoga has been one of my most important forms of exercise over the past 12 months. It has helped me stay centred and connected to my body giving me what I needed to heal. It has also assisted me to regain strength and balance. My Yin (left side of my body) was depleted during chemo. It took more than 6 months to regain strength in this side of my body, the side on which I was operated, and I am still working on it.

As I have said, outwardly I look like I am completely healed. I’ve realised in these last few days that it is going to take more time for my body to rebuild itself.

Link

In the past six months I have had three friends, all male, diagnosed with non-Hodgkins Lymphoma. They are in they are in their 40’s, 60’s and 70’s respectively. Cancer can strike anyone at any age, no matter their state of health and fitness. My friends are either on chemotherapy or are about to start. This shocked me and has brought back to me my journey last year.

How did I cope with chemo? Did I cope with chemo? I did. I’m still here and yet I realise every day that my body hasn’t fully healed from the experience. I still have after-effects: poor digestion (for which I’m taking a range of supplements to heal my gastro-intestinal tract), aching joints, patchy ability to remember things I’ve just read or said and lower energy. I understand that it will take a year or two for me to be fully robust (if there is such a thing) again.

Cold Cap. 

Penguin Cold Cap (promotional image)

Penguin Cold Cap (promotional image)

So on Thursday 12 July – Chemo 1 Day – I went to Chemo Cottage, met the nurses, sat in a reclining chair, smiled at the woman next to me in the cold cap and had one put on my head. The pain was excruciating at first. Tears welled up in my eyes and I thought my head was going to explode. Then after 30 minutes my epidermis started to freeze and the pain subsided. The ‘cold cap’ is a couple of icepacks frozen to -35C, that are wrapped around your head and changed every 30 minutes. They freeze the epidermis which helps save your hair. Its use doubles the treatment time. It is put on 30 minutes before the chemotherapy drugs are fed into your body and stays on for the time again that it takes to administer the drugs – about six hours in total in my case.

Whilst I was clear I was choosing to have chemotherapy, I had some fear of what the experience would be like, particularly as I am not a person who takes medications; the occasional painkiller perhaps. So I created the drugs as ‘love’ going into my body, making me well, be that in the long term.

I’ll talk more in another blog about how I coped with the chemo and maintained the best body health possible during the process.

I persisted with the cold cap throughout my chemo treatments and it got easier each time. Usually the first 10 minutes of the first two cold caps were the most difficult, then I settled into the routine: made sure I drank plenty of fluid – water and herbal tea; rugged up with the heated blankets provided; wore my ‘glamorous’ Ugg boots and several layers of wool. Then I went home to bed to keep warm.

I found I couldn’t eat or read whilst receiving treatment. Listening to classical music was soothing and lulled me into sleep from time to time.

What happened to my hair? Fortunately and coincidentally, 3 months before I found the lump and started chemotherapy I had had my hair cut short. This was an advantage as it’s less likely to fall out.

For the first two treatments I pretty much maintained a full head of hair. Then it started to fall out with the third treatment and continued to fall out with subsequent treatments and then for a couple of months after the treatment stopped. By the end of the shedding I still had 40-50% of my original hair. It was bleached and thin with a couple of small bald spots. BUT I STILL HAD HAIR!

Post chemo my eyebrows began to thin, then all my eyelashes fell out, almost overnight.

Mia Farrow Cut

Mia Farrow Cut

At the beginning of December, 6 months after treatment started and 2 months after it finished, I was able to have a light hair trim. As luck would have it, the route home was gridlocked with traffic, so I stopped in at David Jones and as I neared the Chanel counter, a ‘divine’ makeup artist asked if he could help me. I said, “I have recently finished chemotherapy and my eyelashes have fallen out, is there any way I can do my eyes to look like I have them?” He sat me down and proceeded to do a full make up. By then end I loved the vision I saw in the mirror. I asked him what he had done. As he told me he didn’t try to sell any of the cosmetics. I felt no pressure and bought the ones I wanted to make myself look the way he had.

Then at the end of January this year I had a very very short haircut and came out of the salon feeling and ‘looking’ like Mia Farrow. For the first time in more than 9 months I felt glamorous.

My hair has grown back thicker, grey and curly. I still have short hair to keep the ‘Shirley Temple‘ look at bay. I still feel glamorous and my friends tell me I look great. OH WHAT A FEELING!

The risk of Lymphoedema

What about lymphoedema? There are so many opinions about what causes this, who will get it, what you need to watch out for, how you can ensure you don’t get it.

I had my sentinel (lymph) nodes (in the chest wall) removed and then in a separate operation, where 18 lymph nodes were removed. This was the most painful part of the surgical procedure – 5 days in hospital, 15 days with a drain and months of pain, discomfort and tingling nerves. Fortunately the nodes were cancer free.

I didn’t even think about lymphoedema, especially because I was slim, until my surgeon said to me, “it would be good if you went to see Teresa Lee”, a lymphatic physiotherapist. I couldn’t get into see her, but I did see her colleague, Carol Morris.

There was so much I didn’t know and hadn’t thought about. The first thing she said to me is, “how’s your arm movement?” Well it was okay but it was getting stiff and tight and I found I had hard threads, known as “strings”, appearing in my armpit and down the arm where my lymph nodes had been removed. These were the lines of tissue which were part of my lymphatic system and had been attached to my lymph nodes.

Carol immediately went to work on releasing these. She set up a 5-week physiotherapy schedule and gave me some stretching exercises to do every day. I realised I was going to have to be good at ‘creeping up the wall and hanging off the door frame’ in order to get the full movement back into my arm, shoulder and upper back.  I wasn’t even thinking of losing mobility in my arm. Thank goodness I took immediate action and went to see her quickly. Within two months I had full use of my arm, range of movement and had regained the strength in it.

It didn’t finish there. She asked me whether I was having chemotherapy. “Yes”, I answered. “What’s that got to do with lymphoedema?” The fluid in your body can increase when you are on chemotherapy and lymphoedema can start at any time, even in slim women.

So Carol measured my body fluid levels before I started my chemotherapy treatment. What a great move this was. Six months later I discovered that this had risen from 5.6 to over 13, potentially putting me in the risk area for lymphoedema. More treatment would be needed.

In addition to being concerned about the lack of movement and strength in my arm and shoulder and the risk of lymphoedema, I had considerable numbness throughout my breast, down the side of my body between my armpit and breast as well throughout my shoulder and upper arm. I had fibriotic tissue in these areas which was causing the pain and discomfort. This is the area of my body that has taken the longest to heal. I still have numbness and tingling a year later and this may last for a further year or more.

Throughout my treatment and healing I felt I had angels looking over my shoulder and entering my life. One of those was Lisa Higgins, a massage therapist who specialises in manual lymphatic drainage. She works with my osteopath. She had heard I had recently been operated on for early breast cancer. She asked me to have a cup of tea with her and talked to me about how lymphatic drainage massage could assist in my recuperation.

Lymphatic Massage

I booked an appointment and a fantastic journey began. I had bi-weekly lymphatic massage with her. She drained the fluid out of the affected areas, broke up the fibrotic tissue and stimulated my body’s lymphatic system. Not only did this give me comfort, it gave me confidence in my body and healing.

My therapists were also my confidents, my listeners and advocates. I talked about my fears, my concerns, my ideas and how I was going in each session. This empowered me enormously and enabled me to really trust myself and to listen to my intuition.

A few months after I finished chemotherapy and six months after surgery, during the hotter months of summer, I started to get swelling in my hand and arm, particularly after exercising. This scared me. I rang Lisa, bound my hand and arm and went back to see Carol, the physiotherapist, as soon as possible. A compression sleeve then gauntlet were prescribed to be worn 8 hours a day, especially during and after exercise. I did this religiously and began to reduce the fluid in my arm and hand.

Twelve months after surgery, I stopped wearing the sleeve, except when flying, and got a fluid reading of 5.3. Back to normal!

I gently massage myself when I have pain and am easing back on my treatments. I still have to monitor myself. Lymphoedema could still start at any time.