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Annabelle Solomon

Tell us a little about yourself

I am in my seventieth year, having been born 5 November 1947.  I’ve done many things during my life, and am proud of most – thankfully!  The one achievement I’m most proud of is having brought up my wonderful son, Leo, on my own.  His father made a decision to leave us when Leo was a small baby.  He has since become a wonderful young person with commitments to justice, fairness and is loving and caring person.  I’m also proud of having achieved a Masters, followed closely by a PhD in Social Ecology.  I had been teaching in High Schools, then taught for the last years of my career in the School of Nursing and Midwifery at Western Sydney University.  Then came the warning about breast cancer, resulting in surgery…. and the beginning of an unexpected retirement.  So, I guess I’m now a retired academic.

When and how did you first find out you had melanoma?

It has only occurred to me in recent months that I have been living the life of a melanoma survivor since I was 25, when my first melanoma was removed from the right knee.  That was in 1972, and given that it was diagnosed as a Stage 3, Grade 3 (I still have a copy of the typed pathology report) they removed all the lymph nodes from the right groin, leaving me to live with foot, ankle and leg lymphoedema, which over the years has made it very frustrating to get shoes that fit – both feet, that is!

Forty years later, after another regular skin check at a local skin cancer centre, the doctor removed an area on my upper right arm under local anaesthetic to send to pathology.  I was shocked that he was concerned, thinking I’d beaten it after 40 years, but the verdict was that it was an ‘in situ’ melanoma, with further surgery required to get clear borders. Although I didn’t really take it that seriously, it was another reprieve.

The next shock came when, following a biopsy on a small, pink, pimple-like eruption in the centre of my left cheek in November 2015, was shown to be a nodular melanoma.  It certainly didn’t look sinister and I had thought it might be something that could be burned off!  When my GP told me the results and said he had taken the liberty of making an appointment with a surgeon for that afternoon, I remember crying a little in response as the reality began to sink in.  So, it was as serious as that?  It turned out to be a 4.7mm melanoma that was in transit in the cheek, and had moved into the sentinel and submental lymph nodes.  Following wide excision, the melanoma proceeded to grow back on my cheek.  Other tests made over the next month showed a spread of melanoma cells to the liver, and spots on the lung.  So, suddenly it became clear that I hadn’t beaten it!

Tell us about your treatment

I guess I was “lucky” in some way, since pathology showed the gene mutation was BRAF wild type, meaning that the treatment could go straight to an anti PD-1 drug.  Pembrolizumab (Keytruda) had come onto the PBS in the month of September 2015, only 2 months prior to my diagnosis.  My oncologist (Matteo Carlino) said it was the best course of treatment, given that I was healthy overall with no long-term co-morbidities.  No prognosis was given, though the success of immunotherapy in the last few years was encouraging.  When treatment started, I had no idea of t

he possible side effects other than in the booklet provided by the drug company (Merck Sharp & Dohme), nor how long the treatment would last. I started optimistically – was there any other choice?  After the third three-weekly “cycle” I was woken around 3:00 am with heart palpitations, not knowing what was going on, ending in a day spent in hospital and a cardioversion to get my heart back into normal Sinus rhythm.  This signalled the loss of my thyroid function, which was known to occur in a small percentage of patients.  I’m now on Thyroxine tablets daily.  Other usual side effects have been regular and consistent fatigue events, the itchy skin rash (controlled with cortisone) and loss of pigment in patches on my hands and arms, a type of vitiligo called Melanoma Associated Leukoderma.  I was pleased when the oncologist said it was a sign that the immunotherapy was working.  In fact, the lung lesions did disappear soon after treatment began, and the liver lesions have remained stable as per the last CT scan – so far.

Regarding duration of treatment, I was told that it was generally accepted to continue for two years, with 17 cycles each year.  My next will be the 25th cycle, with 9 more to go

What challenges did you and your family and/or friends face after your diagnosis?

There were two types of challenges, the emotional and financial.  I still have a mortgage and found myself suddenly reduced to living on an Age Pension, since I had found it difficult to work after the breast cancer surgery and radiotherapy.  I put the pitiful amount of my superannuation (I’d worked mostly casually) into the mortgage in order to bring down monthly repayments, and my dear son helps me there too.

My next challenge is a new primary that has developed on the vulva, needing further excision, and decisions to be made by the medical team about a diagnosis and possible further targeted treatment, depending on whether another with the BRAF mutation develops.

How has melanoma cancer affected your outlook on life?

I’ve enjoyed a very full life from when I was first diagnosed at the age of 25.  It is difficult to put into words how this recent diagnosis has changed my outlook on life – but it certainly has!  A friend recently asked how I felt about being ‘retired’.  It made me realise that I seem to have thought I was going to live forever, with plenty of time to achieve what I wanted to do.  I have always been very active, independent and capable of looking after myself, involved in many projects, academic and artistic, when I realised I didn’t have the energy or motivation I could always rely on – and have to accept the changed situation as my “new normal”, which was difficult at first.  It’s also difficult for others in my life to understand.

The implications of a Stage 4 diagnosis are pretty devastating and I realised I needed counselling in order to help in my emotional wellbeing, which I am still having every three weeks.  It’s been almost 18 months ago now the surgeon said there was nothing more she could do for me, so I have had a while to adjust to the changes brought about by my diagnosis.  I was becoming quite unstable emotionally, which I finally recognised as being depressed.

Do you have a motto or personal mantra?

I have lots of mantras, depending on how I am feeling, which usually changes on a daily basis. I enjoy the ‘memes’ posted on Facebook pages when I relate to them.  I also have the practice of picking up the free ‘art’ postcards available when I eat at our local pub, writing up or printing out thoughts I find helpful and sticking them to the back of beautiful pictures. I can then look through them and pick out the most appropriate and useful for the day.  But one that returns when there are no others to read off the cards and when I’m feeling particularly down is: ‘all things pass; this too will pass.’  For me, at the moment, this about emotional pain rather than physical pain.  When there is physical discomfort I tend to think of simple breath exercises, such as the 3-4-7: with tongue behind front teeth, breathe in for 3, hold for 4, then blow out for seven to empty the lungs completely before the next inhalation.  The other very simple exercise is to find a place in my body that feels comfortable, and go to that spot, very simple, and often very effective.

I’m happiest when

I am with my son and his much-loved partner, enjoying each other’s company.  I love good reading and being in my own home space to enjoy the garden I have created over the twenty-five years I’ve lived here.  Strange as it may seem, I like to find out more about the research being undertaken into metastatic melanoma through the daily input from other organisations sharing current research initiatives into melanoma, and through the personal stories of members on melanoma FB pages.  I also feel comfortable when communicating with other people in the same boat as me, (which is why I long for a physical support group locally), probably because I sense that there is a deep connection of understanding of the complexities of living with this (so far) incurable disease.

Annabelle provided her story to MPA in August 2017.

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