Karen Dunks

In 2013 I had this little lump grow on my neck, it was just like a pimple but it got a little bigger to about the size of the tip of my little finger within 3 maybe 4 weeks maximum.  I just thought, she’ll be right mate it will go away.  With the forcefulness of my daughter and best friend, I went to the doctor.  The first doctor told me it was just some sort of skin irritation, gave me antibiotics and some cream and sent me on my way.  This didn’t make my bestie or daughter happy so I went to my normal GP, she told me, it would be okay it was just a BCC.  Two days later I received a phone call from her to go in their straight away, she had made a mistake, misdiagnosed me just like the first doctor had.  She sat me down with a box of tissues and told me it was melanoma.

Wow the next week, it was like nothing I had experienced.  I met with the surgeon who explained that it was actually nodular melanoma. I had never heard of anything like it before that day.  I was booked in for surgery straight way and had a wide local excision done on my neck.  It was like I was dreaming all of this, I was healthy, I just had a lump on my neck, how could that be malignant melanoma, those things take years to grow.

So I continued to have three monthly checks, biopsies, skin checks and annual PET scans. I made it to my two year mark to the day and then my worst nightmare occurred in June 2015 when through a routine PET it showed that there was a metastases on my left lung node.  So off for a biopsy I go and sure it was confirmed to be melanoma.

By this stage trials had begun and I was lucky enough that my specialist knew the oncologist that was conducting the trials and called him to see if there were any spaces left.  I went in for my first meeting with the oncologist and he said that he had one spot left and if I wanted it was mine.

I spoke to my family that night and the next day and asked for their opinions and made my decision to accept the position on the trial.  I had also found a new GP as I had no faith in my old one anymore, so I thought I was set.  I had my ever supportive surgeon, my new GP and Oncologist, what more could I need?  A psychologist.

At this time I did not realize that there was inclusion/exclusion trial criteria that you have to meet and that you must have viable tissue to be tested and the wait could be weeks of waiting and not knowing.

I was accepted on the trial and I commenced on a combo trial in July 2015 if Ipilimumab (Yervoy) and Pembrolizumab (Keytruda).  The Yervoy was for four infusions together with the Keytruda and then maintenance on the Keytruda alone.  This was to be a cycle of every 21 days with three monthly CT scans and blood tests for monitoring.

It all started off great until the side effects kicked in.  I had nausea, fatigue, headaches, loss of appetite and then I was hit with hyperthyroidism, gynaecological issues, then I got this cough I could not get rid of.  This turned out to be pneumonitis.  Once we got the hyperthyroidism under control, then I ended up with hypothyroidism.  We got the pneumonitis under control and then I was diagnosed with colitis.  I could not cut a break.  I was on high dose steroids from September to December 2015 and medications for my thyroid problems, medications for nausea, painkillers – too many to remember.

Because of the all the issues my treatment was delayed and I did not finish my combo infusions until December 2015.  In 2016 the treatment ran smoothly on the 21 day cycle for the most part without any major illnesses.  I did continue to have nausea, fatigue, bone pain, lack of sleep, loss of appetite.  During 2016 my infusion amount was reduced due to weight loss, then in 2017 they decided there was a set dosage for all patients.  As a result my Keytruda was increased and my side affects did as well.  Since July I have been suffering unexplained postural drop.

I finished treatment at the end of August 2017 and am still suffering the side effects.  Now that the treatment has ceased I still have ongoing monitoring with follow up CT scans and blood tests every 3 months.  My GP is monitoring my ongoing side effects (fatigue, nausea, bone pain, postural drop, headaches) and my psychologist is working with me regarding my PTSD.  I have also commenced working with an exercise physiologist to build up my core strength.

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

In 2013 when this began, I soon came to realize that the lump on my neck was the beginning of a really rough rollercoaster ride and I don’t like rollercoasters at all.  I did a lot of reading, joined heaps of support groups mostly online and based in the US & UK where they were already undertaking trials for stage IV melanoma patients.

I have tried to maintain a realistic approach to my diagnosis.  I went into the trial with the mind set of “if it doesn’t save me it may save someone else’s life, like one of my children or grandchildren”.  This is my grand gesture to the world, I donated my body to science to help save the future patients.

My family have handled it all in their own ways.  Some have been confronted with the reality that this could end my life, while others continue to live in denial and believe that because I look okay and have my chemo glow that I am okay and not really sick.

I spoke openly to everyone involved about my wishes and my expectations and what I hoped to achieve by taking part in the clinical trial and they all agreed that it was my decision and they would support me no matter what.  So the decision was easy, I wasn’t ready to throw my hands up and not give it a go.

The diagnosis has shown me who my true friends are, some have not stayed with me through this journey as they could not handle the reality that maybe one day they would be going to my funeral not my birthday party.  The friends that have stayed have been great.
My greatest challenge I believe has been trying to maintain a normal life.  I’ve continued to work full time until recently.  Currently I am on a return to work rehabilitation program with my GP and exercise physiologist and my psychologist.

My employer and work colleagues have been with me every step of the way, keeping me normal, crying with me when it was too much and ever so supporting.  Honestly, I could not have made it this far without everyone treating me like me.

At the time of diagnosis I was living in a domestic relationship, however this ended six months into treatment.  Before this ended I was too afraid to make plans or go out of my comfort zone but when the relationship ended all my doors opened.  It was a release for me, it gave me the freedom to be me and deal with this without feeling guilty because someone could not understand how this can change you.

Wow, this is a big one.

I have always been a workaholic but now I have a work/life balance and do enjoy it.

To be honest I was pretty self-centred before this and I am willing to admit this.  This diagnosis has taught me you can be in a room full of people and be the loneliest person in that room.  That was me, that was me for the first part of this journey.  I felt alone and could not explain to anyone how I felt.  The lesson I’ve learned from this diagnosis is to stand up for yourself, ask questions.  And if you’re still not satisfied ask for an explanation, get a second opinion!  Write everything down and keep copies of all your results.

There are so many challenges you face as a cancer patient and being on a trial.  Not knowing what to expect, will you look sick, will your hair fall out, will you be able to function normally and will these new therapies provide longevity with quality?

I become frustrated at times, when you have to explain over and over that you don’t feel well and you are tired or in pain because 99% of people only see what they are looking at and you look fine.  You look healthy and appear to function normally and honestly you do tend to tell everyone you are okay because you just get over explaining yourself and your side effects that no one can see.

For me I still have an issue accepting my diagnosis in many ways.  While you are on treatment it becomes your security blanket and now that has been taken away, what now?  Will it come back?  Is that pain or lump melanoma?  It becomes your new normal and then all of a sudden that normal is changed again.  What do you do now, what is your new normal?  How do you prepare yourself for the next chapter?  My life has changed with respect to my routine, I no longer have as many doctors’ appointments or tests.  At first this was strange because I had been in the trial routine for so long, now I am readjusting and finding my way.  You learn that you will never be the person you used to be, you appreciate the smallest things and you do need to take time to find yourself and get rid of negatives from your life.  Also it has shown me that life is far too short.  You have to make the most of every opportunity.

Never forget to tell your friends and family how much they mean to you and continue to make memories, not only for them but for you too.

One thing I have learnt about myself is that being confronted with my own immortality is  that I am not afraid of dying.  I am afraid of the end, losing my independence, that’s what I’m scared of.

I am not afraid of what is to come moving forward, I know life provides us all with challenges and we handle them best we can.  Melanoma has given me the opportunity to see my life differently and meet some awesome people and not to forget those who have passed.  I have grown a passion to educate and support people affected by melanoma (or any cancer really), it just took my situation to make me realise I have a lot more living and giving to do.

You are the master of your own destiny.

Whatever will happen will happen, everything happens for a reason and you cannot control the future so just live for today.

Love the skin you’re in!

I am happiest when I get home from work and my fur babies greet me at the door.  That is true love right there.  They make me smile, laugh and forget about all the horrible things that I have been through and any stress from my work day and I get to focus on the positives.  I love to see my children and grandchildren, I just wish it was more often.

I also love to just sit at the beach alone and forget about the world around me and just watch the waves roll in or the night sky, it’s very therapeutic.

* Karen provided her story to MPA in November 2017 *