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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.

Nutrition Nouse

Does assessing and monitoring what you eat assist when you have cancer? There are varying opinions on this. I firmly believe in the old addage, “we are what we eat”.

As soon as I was diagnosed with early breast cancer, I went to see my nutritionist to see whether there was anything I should change in my diet. She recommended a number of things, especially if I was to go onto chemotherapy which affects the immune system and gastrointestinal tract. This is what I did and do.

  • gave up dairy except for butter which has different properties. Goats and sheeps cheese occasionally is good. I have replaced dairy with high calcium vegetables such as broccoli and spinach and added an ‘essential greens’ supplement to my daily diet.
  • took on making my own muesli adding almonds, flax seeds, chia and sesame seeds to it. I used the ‘Liver Cleansing Diet’ recipe.
  • significantly reduced wheat consumption and replaced it with other grains such as quinoa, rice, oats.
  • increased colourful fruit and vegetables, especially anti-oxcidants such as blueberries, oranges and leafy greens. Wherever possible I buy organic.
  • deleted sugar. She suggested replacing it with stevia. If I need something sweet to eat I choose quality dark chocolate and counteract the sugar with a few raw almonds. A good 4.00pm snack is 3-4 medjool dates and brazil nuts.
  • juice each day. I make a carrot, beetroot, celery, orange and ginger detox juice every morning
  • reduce meat consumption and only eat grassfed meats. Lamb is good in this regard. My husband and I breed grassfed beef, so we generally eat our own. We know what they’ve eaten. We only eat organic chicken.
  • consume more fish. However, I have avoided large deep sea fish and shell fish as they can have a high mercury content which is a hormone receptor and I have needed to reduce the mercury in my body.
  • Avoid fried foods. I did this religiously when I was on chemotherapy. I cooked with oils such as organic coconut oil and macademia nut oil when I needed to. These have a lower flash point.

I have supported the above diet with a number of supplements which have aided my immune system and gastrointestinal tract during chemo and in the rejuvenation of my body post it. These supplements were recommended and prescribed by my integrated doctor and, I believe, have made an enormous difference to my feeling of wellbeing and recovery. Don’t self-prescribe. Ask a nutritionist or doctor who knows.