Riding the Chemo Wave

Image

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!