New hair!

Ah so glad my wig arrived safely all the way from the USA!  Bald may be beautiful but it’s not me…. I alternate the wig with a headscarf (especially when cooking as the warm blast from an oven can ruin a wig) and I feel a scarf is sometimes cooler.

Here are some photos – one of me getting my wig trimmed to my liking and the other photos were taken at lunch today in Hout Bay.  It’s a very close match to my natural colour and style.

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New beginnings

My hair literally fell out overnight. I still had a full head of hair yesterday when I woke up, but by last night it was gone!  The doctor warned me that it would happen with full head radiation but I thought maybe gradually over the next 3 months or so, I didn’t expect it to happen so fast!  Anyway, an emergency plan had to be made…. Here is the new more funky-looking me!

 

Life expectancy questions

One of the first things I did after my diagnosis was to search for “average life expectancy” for someone with my condition. I quickly realised that it was a futile exercise as it cannot be predicted with accuracy but overall prognosis is not good, as these examples from the internet show:

It is important to keep in mind that statistics are frequently based on people treated a few years back. For example, the most recent statistics for lung cancer from 2015 are based on people diagnosed with lung cancer between 2007 and 2011.

The median stage 4 non-small cell lung cancer life expectancy (the time at which 50% of patients are alive and 50% have passed away) is only around 8 months. The 5-year survival rate, that is the percent of people who are expected to be alive 5 years after a diagnosis of stage 4 lung cancer is sadly only 4%.
Source: http://lungcancer.about.com/od/whatislungcancer/f/stage4lifeexpectancy.htm

The most advanced stage of lung cancer is Stage 4. It means that the cancer has spread. Understandably, the survival statistics are very low for this stage. Unfortunately, lung cancer is often diagnosed late and for many people the cancer has already spread when they are diagnosed. Only between 2 and 13 out of every 100 people diagnosed with stage 4 non small cell lung cancer (2% to 13%) will survive for 5 years or more after diagnosis.
Source: http://www.cancerresearchuk.org/about-cancer/type/lung-cancer/treatment/statistics-and-outlook-for-lung-cancer

During the 2-year period, 91 of 878 patients (10.4%) developed brain metastases. Median age in this cohort was 64 years. In 45, brain metastases were present at initial diagnosis, and in 46, brain metastases developed later in the course of the illness. Median survival in the entire cohort was 7.8 months. Among patients who received chemotherapy, the survival of patients with brain metastases at diagnosis was still poor (6.2 months). Our data show limited survival in patients with brain metastases from nsclc.

Brain metastases (BM) are a common and lethal complication of non-small cell lung cancer (NSCLC), which portend a poor prognosis. Despite these grim realities, there is room for optimism among identifiable subsets of these patients. A recent published series of NSCLC patients with synchronous BM receiving surgery or radiosurgery to the brain and aggressive management of their extracranial disease reported a median overall survival (OS) of 12.1 months. Improved surgical techniques and radiation therapy (RT) technology, as well as more effective systemic treatments and multimodality approaches have led to these superior outcomes
Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164096/

The chart below shows the cancer survival rates for a group of 1,309 metastatic non-small cell lung cancer patients who were diagnosed between 2000 and 2011 in the USA.
http://www.cancercenter.com/lung-cancer/statistics/tab/lung-cancer-NSCLC-survival-statistics/

lung-nsc-Survival-CTCA-5YR-Vertical-2014

Stage IV non-small cell lung cancer cannot be cured, but treatment can reduce pain, ease breathing, and extend and improve quality of life.

It has been 7 months since my diagnosis, although I know I’ve had it for much longer. I feel good and healthy and am living for each day. Another five years or more is not impossible. I would like to be the one to beat the odds.

The photo below, taken at Christmas, was 6 months after my diagnosis.

IMG_0315 (Large)

Sugar

The interesting fact about STRESS is that it causes the body to release CORTISOL (a steroid hormone) which turns to glucose (sugar). So even a bit of stress will add inches around the waste!  Often people who live high stress lives/careers battle to lose weight.  The weight is unimportant to me but I need to remain low stress because my treatment plan is based on the concept that sugar is a cancer fuel. 

So whether I receive sugars from stress or food, I need to cut down.

Here are some resources that show the different sides of the “Is sugar causing cancer” debate with regard our food intake.

Oncology nutrition (Academy of Nutrition and Dietetics)

Cancer’s Sweet Tooth (Nutrition Science News)

How cancer cells rewire their metabolism to survive (Sanford-Burnham Medical Research Institute)

To eliminate sugar completely, to include some good sugars like fruit in the diet, to relent to our normal sinful sugars like Coca Cola, wine gums and chocolate cake; those are the choices faced by cancer patients.  But either way, I think we’re all agreed now (internationally), that too much sugar is just not good for the body, so I’m happy with the choice I made to follow a sugar/carb free diet on a day to day basis and to allow myself a weekly treat, e.g. an ice cream, chocochino or restaurant lunch. The weekly treat is seldom skipped…

 

She looks like an alien

Finished 3 weeks of head radiation today whoopee!  It’s really a 10 minute in-and-out procedure and all one hears is a long beep from the machine.  But the smell… it seems no one has complained of a gassy odour before, only me?? Well I time my breathing to stop as soon as I hear the first beep. The smell dissipates quickly. Now we wait probably another  6 months again before we check the result of the brain radiation. And although I’m weaning off the cortisone I’m still hyped up but dead tired and sleeping 1 – 3 hours a night.

 

 

 

My sincere thanks

There are so many people I have to thank for standing by me, supporting and helping me since my diagnosis.

  • My mum who has turned her house upside down to accommodate me and who drives me all over in her car and visits me every day when I’m in hospital
  • My daughters: Bianca for taking control, coming to visit every day and Michaela for working on my health and my mind.  I can feel their unlimited love
  • Nigel for always visiting in hospital and standing by Bianca
  • My sisters for visiting, bringing gifts, caring, advice and hospital visits
  • Friends and family: Ida, Johanna, Johan, my mum’s friends and many more people
  • Work colleagues, all your individual messages and the flowers I received were very touching and much appreciated
  • Carola for the unsuspecting “hi” messages with Bjorn photos attached
  • Heather, for the lovely home cooked meals I received in hospital
  • Margaret, my friend from years ago who helped me to offload and kept me sane all the way from the UK
  • Gabriel, for referring me to Dr Spies
  • Arie, for supporting and pulling the girls closer
  • Ilene and Maria for helping to pack up my house
  • Dorothy for taking Mushee
  • For those I did not specifically mention here, I appreciate everyone’s contribution and concern.