Living with Lymphoedema

Life has been very full this last year. Lots of travel! With this has came some demands on my body and costs. All has been going well in my recovery except for now I have Lymphoedema.

Southern African Desert

Southern African Desert

When I returned from Southern Africa last October my left arm was tight and I had pain in my chest wall. I went to have a check up with Carol, my lymphatic physiotherapist. The lymph fluid was up to 18 points.

After some soul searching and reading, I recalled that at the end of our trip I had a small scratch on my upper arm. This took a long time to heal. I probably had an infection without my knowing it. The result? Lymphoedema. “I’m going to get you a new tailored compression sleeve”, Carol said. This had to come from Germany.

The possibility of Lymphoedema was not spoken about when I got breast cancer. In fact, none of the possible after affects of treatment were discussed with me.

imageI must have gone onto a register after my first surgery. A few days later a package arrived in the mail from the Breast Cancer Network Australia. It included several booklets with details on all aspects of breast cancer and what could happen afterwards. My Journey Kit is a fantastic resource and one worth requesting if it’s not sent to you. Visit bcna.org.au.

My experience of reading the information was like sifting. There was so much there. What do I need to know now? Later? I concentrated on the information I needed to know right then, not fully understanding the magnitude of the journey I was about to go on and the ramifications of the immediate decisions and action I would take.

I didn’t want to have the axiliar nodes removed and got a second opinion. “No”, I was told, “all the nodes will have to come out”. I have subsequently asked my surgeon, “could you have done a test to check whether there was cancer in these nodes?” He said ‘no’. I understand some surgeons use a dye to test for this and if there is no cancer, don’t remove them.

I couldn’t glean from the booklets what living with Lymphoedema would be like. I think I am reasonably lucky that I have mild Lymphodema.

Summer in Sydney arrived soon after my new garment did. It’s not exactly the fashion accessory I was planning to wear with my beautiful dresses and summer clothes. As the summer heat increased, so did my Lymphoedema. Three months of wearing the sleeve for eight hours a day increased to all waking hours for six months, three episodes of bandaging, the addition of a glove to stem hand swelling and weekly lymphatic massage (only a fraction of which is claimable with a private health fund) ensued. My fluid rose to 23.5 points. Not a laughing matter. All this care and the Lymphoedema was getting worse.

Then GOOD NEWS! Last week I got completely fed up with it. My husband said, when I was getting dressed, “you’ve got a bit of a roll over those jeans”. A completely harmless, true observation. More like ‘a red rag to a bull’ for me. I lost it. I wasn’t really upset with my husband, I was upset with myself.

I’d been fractious for the previous few days and couldn’t work out why. Was it that I was out of my routine after travelling again? Or that I hadn’t made the time to work on my new business idea? As I ‘flew off the handle’ and started to vent about my arm, the fluid being up in my body and my digestive system not working well, having put on weight, I let go of much pent up emotion. My calm self disappeared and I verbally attacked myself.

My husband realised mentioning my roll was not a good idea. His demeanour changed from one of mocking fun, to love and compassion. “I love you. You’re gorgeous. You’re perfect the way you are”, he said. Phew! At least someone was looking at me positively in that moment.

A few days later I noticed there was less fluid in my wrist and less pressure in my arm. When Carol measured me on Tuesday, my fluid had gone down 7 points. The best result since my October visit.

Caresia Sleeve

Caresia Sleeve

What caused this? The cooler autumn weather? My emotional outburst at my body? Washing my sleeve and glove every second day? (I hadn’t realised this would make the sleeve more effective.) Getting back into a care routine with massage. The big change we had made here was concentrating on massaging my breast to release the fluid there. We’ve since added wearing a Caresia (soft quilted) sleeve to bed each night.

Breaking up the lymphoedema

Breaking up the lymphoedema

Whatever it is, I am thrilled the fluid is starting to diminish and I may have the prospect of discarding my sleeve, eventually. I am trusting the way fluid is breaking up at night will make the difference.

Whilst inconvenient, unattractive and sometimes painful, I am fortunate that I am not stopped from doing any of the activities I love – gardening, walking, yoga, Pilates, skiing. In fact I think it is better when I exercise each day. Certainly life is better.

 

 

 

 

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 Power of Letting Go

IMG_0864Tuesday two weeks ago I was enjoying glorious spring skiing in fabulous Park City and Deer Valley, Utah. I was feeling fit, strong, happy and well. Life and my health were back to normal. Things couldn’t have been better.

Then I received an email from my sister in Australia saying my mother, who had a terminal lung condition (Chronic Obstructive Airway Disease) had contracted a chest infection. She’d been put on antibiotics and they were waiting to see how she would respond. Judging by how previous episodes of this nature had gone and her enormous resilience, my husband and I thought there was no need to take any urgent action. It was a wait and see situation.

Two days later another email arrived, the infection had become pneumonia and Mum was expected to live another week. The big question was, ‘did we need to rush home or would she live the full week predicted?’ I had to choose between going home immediately and staying an extra couple of days. It was a difficult decision because we’d had calls of this nature previously and Mum had pulled through.

I changed our return travel to arrive back in Australia well within the time frame suggested by the doctor. Whilst doctors can speak to us from the perspective of statistics, they cannot speak for us as individuals, as we see time and again. Someone is told “You have six weeks to live” and he lives 12 months. “You have 3-6 months to live” and she lives 18 months. The moment of death is the choice of the individual.

It was my mother’s 81st birthday on March 14. I’d sent her a birthday card before I left and was planning to buy her that black cardigan she wanted when I was in Park City. The realisation that I wouldn’t be getting it for her saddened me greatly.

My family organised a champagne lunch for her birthday and I arranged to call in for the party. Thank goodness for mobile phones. My husband, who is a prankster with heart, came up with the idea of doing a little performance for her, over the phone. Given the time difference, we were standing on a street corner in Park City with cold hands juggling the phone and my husband started. “Hellooo… Dorothy or can I call you Dottie (her least favourite name)? Dottie this is Pastor Ray from the Mormon Tabernacle Choir in Park City Utah. We’ve heard it’s your birthday and I’ve gathered together a small group of choristers to sing you happy birthday!” We then chorused happy birthday to her. She loved every minute of it and announced he was her ex-son-in-law. She laughed. We laughed. It was the best birthday present we could have given an ‘old performer’ who was holding court with her family.

Thirty-six hours later, on the day of our departure, I got a text to say the end was nigh. I wanted to be free with the choice I’d made not to leave earlier and to give my mother the farewell I would’ve given her had I been there. I called the hospital. They took the phone to her and I told her I was well and in the best shape I’d been in for many years. The skiing holiday had done wonders for me. I also told her I would follow her legacy and be with my husband to the end. Two things that were important to her. Finally, I said, “if you need to go before I get home, you are free to go.” I was at peace with our relationship. I had said everything I’d wished and needed to say. The nurse said she smiled and shed a tear.

I am clear I was with her in spirit for the duration of our holiday and to the end.

Peace StonesWhen we were in transit at LA airport, I thought, “I have to contact my family, NOW.” I called my brother. He said, “the end is near.” I asked him to hold my mother’s hand for me. He did and told her he was holding it for me. Then I said, “Mum I acknowledge you for your courage, love and commitment. You will always be in my heart.” As my husband spoke to her and my family laughed, she passed away.

She had survived breast cancer with great courage and determination 35 years earlier. She was an outstanding role model and inspiration for me and many other women whose path she crossed.

I am grateful for my life, the loving family into which I was born and for my extraordinary mother.

 

 

Being My Best Friend

ImageToday was about recovery. What from? A big challenge I undertook yesterday in a team of four amongst a couple of thousand walkers. We participated in Sydney’s Coastrek, an annual 50km (or 100km if you’re really game) walk from Palm Beach to Balmoral Beach. As I’m not completely mad, I chose to do the 50km.

How did this come about? One of my gorgeous, fit, adventurous girlfriends, who had done Coastrek before, asked me mid last year if I’d like to join her team for this year. I saw it as a great challenge as well as opportunity. It gave me a goal to increase my fitness and get my body back to full health.

Image 2We started training in October with 15km walks every second weekend, then increased to 20km, 25km and finally 30km. Through our training we walked the whole route – roads, soft sand beaches, beautiful bush tracks, stairs, steep driveways and footpaths – covering every type of terrain available along Sydney’s magnificent northern beaches coastline. Once I’d done the 30km walk, I knew my body was up to the 50.

My training also included pilates once a week, yoga twice a week, soft sand walking and my usual beautiful brisk morning walks three times a week. I ate as healthily as I could each day and then determined what gave me energy on my training walks – Bird Bars, Protein Balls and Coconut water for rehydration. And, of course, plenty of water.

This was an achievement for me in so many ways. When I started training my energy level was low on hills and my breathing laboured. I’d put on a few unwanted kilos last year and had developed a mild lymphoedema in my left arm. With Sydney starting to get hot, I was concerned I would aggravate the lymphoedema. Instead, with a managed remedial programme with my physiotherapist and regular lymph drainage from my lymphatic masseur, the fluid in my arm started to reduce and they cleared me to walk. My lungs got stronger, such that I didn’t find the hills difficult and the bonus is I have shed 4 kilos in the process. A win all round really.

Fred HollowsAnother part of our challenge was to raise money for the work of The Fred Hollows Foundation which restores sight to people who are needlessly blind in developing countries and aboriginal communities. Our team raised $5,000 which will see 200 children and adults have their sight restored through cataract operations. It is reassuring that our efforts will make a difference too.

During a Sydney summer, one would expect sunshine, a gentle breeze, a little humidity and heat. A shower or two and 23C was predicted yesterday. Instead we got 20C and pouring rain; so out went the sunscreen and on went the raincoats. This presented us with difficult and challenging conditions. Rather than see the beautiful azure waters of the Pacific Ocean and bronzed bodies spread along the sand, we saw rugged grey waves on deserted closed beaches; except for walkers, of course. There was a steady stream of them along the coastline.

Image 4Our final achievement was to complete the walk within our time goal of 12 hours. Through driving rain, with wet shoes, strong winds, along soft sand, down slippery paths, whilst dealing with long toilet queues and track bottlenecks, we did it in 11 hours 53 minutes and 25 seconds without a cross word, supporting each other all the way.

At the end, even with aching joints and sore muscles, we picked up speed and ran through the finish line to the click of cameras and my husband waiting with a bottle of champagne to celebrate. How lucky were we to have him on our support team.

Thank goodness for massage. I had a wonderful remedial massage this morning which saw my muscle and joint pain disappear. Being totally self-indulgent or responsible, take it as you will, I followed it with a lymphatic massage. The best news was my lymph fluid was down. After all that exercise. What a miracle!

I have come a long way in the past 12 months and am probably in the best mental, emotional and physical state of my life. I am strong and well and that is a great gift. During today’s massage it came to me that my body is my best friend. Why? Because I love it and am a true friend to it! That’s what I’m grateful for today.

Freedom At Last

What fun January was! We enjoyed our beautiful country property, animals and it’s garden; had time with family in Sydney and Melbourne; caught up with old friends and competed in the Geelong Race Week regatta.

Gwinganna-SunsetI was also in a thinking, reflective, creating state for the whole month, culminating in a three-day Women’s Discovery Programme at Gwingana Lifestyle Retreat in the Gold Coast hinterland. I went with my cousin who has also had breast cancer. Not only was it time out for reflection on what the year ahead may hold for both of us, it was a time to have fun enjoying fitness activity, nature, “Dreamtime” each afternoon, fabulous healthy food and hugely informative lectures on health and wellness.

Dr-Karen-2

Dr Karen Coates

From the moment I arrived at Gwingana, I felt I had chosen the right retreat and location for us. We both wanted to move on from our breast cancer experience and start a new phase of our lives. Our programme included three lectures and a forum with Dr Karen Coates, a GP, obstetrician, gynaecologist and nutritional and environmental medicine practitioner.

We had the opportunity to request some lecture subjects up front. Breast cancer and it’s treatments were something we wanted to hear and ask about and we did.

The first topic addressed was what we need for Optimal Wellness:

  • nourishment
  • movement
  • stress resilience
  • reduction in our toxic load

The second was stress. How it manifests in the body (through adrenalin and cortisol production) and impacts our immune system and ‘gut health’. I completely tuned in to this. For a long time I have thought and felt that illness, particularly cancer, is caused by stress and our bodies being overloaded.

Our second day talk was on cancer and how to give yourself the best chance of staying well and ‘cancer free’ post diagnosis and treatment. The power of positive thinking is one of the key factors in healing. The following research statistics astonished me and provided me with the biggest gift of the retreat. Following a ‘natural treatment’ course is almost as effective as taking pharmaceutical drugs to keep me ‘cancer free’.

  1. A hormone blocker, such as Tamoxifen, is 68% effective
  2. Drinking one glass of red wine a day (and avoiding white wine and spirits) is 50% effective
  3. Putting on running shoes and doing 50 minutes of vigorous exercise (getting the heart rate up) 3 times a week is 60% effective
  4. Taking a GP prescribed Vitamin D is 65% effective
  5. Eating cruciferous vegetables – brussel sprout, broccoli, cauliflower, cabbage regularly (ideally daily) is 37% effective

I have been following points 2-5 for the past 18 months. To have my intuitive approach, which is supported and guided by my integrative doctor, confirmed by another highly regarded practitioner gave me a renewed confidence in myself and the path I’m on.

Last December I had started to doubt myself with each little ache that showed up in the left side of my body. Also the fluid level in my body began to rise with the hot Sydney weather and I was diagnosed with early lymphoedema. I then started to worry and wonder whether I was regressing. No, I wasn’t regressing, I just had ‘noise’ in my head creating mischief and worry.

nia-is-a-celebration1At Gwingana, I danced, meditated, walked, reflected, listened, relaxed and came away lighter in mind, body and spirit, ready to start a new business.

Gwinganna_Meditation2I have been working on my ideas ever since – thinking, planning, talking, researching and networking. I’m excited and energised with a renewed zest for life. I feel I have truly ‘come out the other side’, having learnt an enormous amount about myself and wellness.The old enthusiastic me is back. However I am more loving, thoughtful and connected with myself and am present to the love in the world around me. This has been the greatest gift I have received from my brush with cancer.

Review and Reflect

One of my great and inspirational friends, Kay, who is an executive and leadership coach, regularly gives me insights into how to make the most of life.

With 2013 closing, she took on reviewing and reflecting on the past year. I’ve borrowed the exercise from her, with her permission, of course. I’ve just finished my reflection and review and have realised that, for the past couple of months, I’ve not been present to the amazing things that happened in my life last year. Here’s what I came up with.

GiraffeMost Fulfilling Experiences

  • Touring behind the scenes at Cape Mentelle Vineyard, finishing in the Barrel Room with a degustation tasting lunch and matching wines. Exquisite!
  • Travelling in Southern Africa for five weeks experiencing the food bowl that is South Africa, the magnificent desert of Namibia and the extraordinary animals that roam the national parks. My favourite, the Giraffe.

Biggest Challenges

  • Saying to my oncologist that I would not be taking hormone therapy.
  • Rebuilding my stamina, overall health and mental ability and agility after chemotherapy.
  • Walking 100km over 6 days on the Great Ocean Walk in Victoria 6 months after ceasing chemotherapy.

Best Surprises

  • Attending my 40 year school reunion and enjoying catching up with girls I had been at Primary School with.
  • Receiving a birthday card from Amanda, my Pilates instructor, acknowledging me for my transformation over the past 12 months. Uplifting!
  • My friend, Rachael’s daughter, Poppy, being born on my birthday. A beautiful gift of life!

Best Value for Money
Touring Namibia – high quality accommodation and food in the middle of the desert.

Most Impactful & Highly Recommended Book
Anita Morjani’s ‘Dying to Be Me‘. It transformed my view of life, living and my understanding of the power of the mind in healing.

Favourite Quote
I am the master of my fate, I am the captain of my soul. Invictus by William Ernest Henley. I feel empowered and centred every time I read the ending of this inspiring poem.

Lava FlowBest Fun
Photographing hot lava oozing out of the cliff face on the ‘Big Island’ of Hawaii. I took close to 500 photos  in 30 minutes. The ease of digital!

Best Decisions

  • Having 6 months off to travel, get well and enjoy everything life has to offer.
  • Keeping my hair short.
  • Writing this blog. I have loved the writing, soul searching and communication.
  • Taking a 300mm telephoto lens to Africa.

Most Grateful That/For

  • I have returned to good health and have had two ‘all clear’ reports from my doctors.
  • My gorgeous husband who has had a personally challenging year and stood by me the whole way.
  • My family, friends and the health practitioners who have listened and supported me.

Kay suggested REPENTING as well. There is nothing I feel I need to repent for. I had a powerful year. I am proud of myself and what I have achieved. I’m ready to start the new adventure of finding another career path in 2014 and staying connected with all the fabulous people I have around me.

The Learning Never Stops

Where’s the last month gone? It must be that mad end of year rush and Christmas cheer getting in the way of my writing. It’s been a big month with lots of learnings.

Shiatsu MassageMy intuition has been guiding me ‘big time’. Last month it recommended I have some SHIATSU MASSAGE. A treatment I had let go. I had a sense that something was out of balance or needed clearing. As Amanda was working on me, she started asking about a tightness in my upper back, which I have had since I was about six years old. As we talked I realised I’d created a ‘metaphorical shell’ on my back as a protection against punishment which I experienced as a child. I actually had a small hump there. As we explored this, in my mind I broke it and it crumbled away, giving me an increased flexibility and freedom in my upper back. It was an extraordinary experience.

kinesiologyThe following week I had another session and went a little deeper exploring my heart and love. To clear it, Amanda suggested when I meditate, that I ask my my heart what the blockage is. A few days later I realised that my husband’s daughter had broken my heart a number of times over the past seven years and the heartache was still residing there. Magic! This lead me to have a KINESIOLOGY session with Angela, who I’d been coaching. She works on the structure of the energy in your body and clears any blockages. Nothing seemed to happen on the table, then I felt unwell for 24 hours as the blockages cleared. The next day I woke up feeling like a new woman. Angela had said to me, “holding on to pain and hurt and not letting love into your heart has been known to cause breast cancer.” Just what I’d thought. So whilst I had forgiven all the people who had hurt me over the years, including myself, there was some residue still there.

Whilst all this was happening, I had my 12-monthly check up with my oncologist. There was a little bit of anxiety coming to the surface in the couple of days leading up to this appointment. I didn’t know what she was going to do when we met. She asked me what my programme was and whether I had any side-effects from the chemotherapy. I went through all the natural things I’m doing and said, “my stamina’s still not back to what it was and my liver is still not healed”. Otherwise I feel and look (so I am told) fit and healthy. The result of the physical examination was ‘ALL CLEAR’. How exciting and what a relief! I have realised it takes something to trust yourself. It is an ongoing journey and learning experience.

I’m still learning about myself and the things that stop me from time to time. I’m using my team – integrated GP, lymphatic masseur and physiotherapist – to keep me on track with my new health programme and diet, supplements, exercise, massage and meditation.

Noosa National Park Coastal TrackFrom time to time I wonder whether I’m on the right track. What is the right track? I feel like I’m on a solo journey sometimes. This weekend I took myself to Noosa Heads, one of my favourite places in Australia, for two days R&R – an early birthday present and a rejuvenator. Each morning I walked the coastal track of the Noosa National Park, breathing in the fresh air, feasting my eyes the beauty of the ocean and the coast line, and skin and body with the warm morning sun and breeze. All food for my mind, body and soul.

From Cancer to WellnessWhilst browsing in a Noosa bookshop, looking for a good old-fashioned calorie counter book, I came across Kristine S. Matheson’s book, From Cancer to Wellness the forgotten secrets, a step-by-step handbook for beating cancerShe provides a prescription for healing your body without what she calls SPB – slash (operation), poison (chemotherapy) and burn (radiation therapy). Of course I bought it. As I read it, I thought, “I’m reading about myself”. Whilst I did the ‘slash and poison’, I realise that in the process, with integrated therapies, I healed and rejuvenated my body using the same prescription of diet, exercise, meditation, reiki, forgiveness and affirmation. My ‘right track’ is listening to my intuition.

Dealing with Stress. When any stressful situation arises or I find someone aggressive towards me I get anxious. A confrontational Board situation recently caused me to doubt myself. I seriously considered stepping aside. By trusting myself and working through it, I have been able to open a door to a discussion which I believe will resolve it. To guard my body now, I create love and light around me.

My Grateful. I love the festive season. Old friends and acquaintances get in touch and this reconnection will carry on well into the new year. I AM GRATEFUL for the LOVE AND FRIENDS I have around me.