Cost of living with Melanoma

Many of you will now be aware that I've been diagosed with stage 4 melanoma. This is the story of how it all happened and the struggles my husband Jared and I have been through.

The journey began at the end of June 2017. I had been suffering a strong headache for four days straight. I rang my twin sister Nicole to let her know and she recommended that I visit my GP believing it may be a migraine which are common in our family.

The next day I went to my GP, Dr Praba Selvendra.
She was concerned that I had pain since I had never come to see her about any in the many years I had been seeing her. She said “just to be safe, I’m going to send you for an MRI. Little did we know, our lives were about to be changed forever.

A few days later I had my MRI scan. After the scan, we were asked to wait in the general waiting area. It had been about 30 mins and we were still waiting. I was feeling so sick and my head was pounding. I asked Jared to go tell them we were going home cause all I wanted to do was go to bed.
The Centre staff took Jared away and told him that I had two nodules in my brain. He went into shock and had to ask them to explain again.  They informed him that he needed to take me to the emergency department at Sir Charles Gardner Hospital.
He then left the room and turned the corner and looked at me. The look on his face I will never forget. He sat beside me and explained the situation and we immediately made our way to the hospital.

We arrived at the emergency department and we were prioritised quickly. I was asked a lot of questions. I was shown one tumor in my brain that measured 2.2cm. It had caused so much swelling of the brain that if I had left it another 24hrs, I would likely be dead.

I then went into the high dependency ward. I stayed there for 5 days under 24 hour watch. During this time I had multiple scans done. It was revealed that the 2.2cm tumor would have to come out. I went on a hunt for the best neurosurgeon in Perth and found Prof Christopher Lind.

We scheduled the removal to be done at St John of God Hospital in Subiaco. That happened on the 21st July 2017.
The operation went well. The entire tumor was successfully removed.
Then the long dreaded wait began to find out what it was.
This time was hard. I was in the hospital for 15 days. I had 19 staples in my head and I wasn’t able to do a thing.

When I was finally home I wasn't allowed to do many everyday tasks like driving a car, cooking, lifting anything over 200g. Almost any sort of physical exertion. 

After being home for 5 days, things took a turn for the worse. I began leaking cerebral spinal fluid from the area where I had been operated on.  This involved many trips to see Prof Christopher Lind to try and fix the issue. I ended up with having nearly as many stitches as I did staples.

This did not stop the leaking. I was required to go back into hospital and get a spinal tab put in to relieve the pressure on the operated area and allow it to heal.

I was in the hospital for 9 days where I was confined to complete bed rest. I could not move without first letting a nurse know. This was the hardest of all of it. I cried so much. I felt completely helpless. For the first time, I was scared and nervous about what was happening to me.

It was also the time we found out that I had been diagonsed with melanoma, with no known primary (source).  I was told I had the Braf gene . In the words of the oncologists “it has its foot on the accelerator”. He said no one wants melanoma but lucky in the last few years there have been significant developments in treatment options.

For me, that means the combinations of two drugs that effectively buy me time. How much? No one can tell you. According to the oncologist “some people live, some people die. We don’t know why some do and some don’t”. So far I am living and responding well to the treatment so far.

I have had to give up my studies in nursing. We've had to sell our apartment to afford the cost associated with fighting or rather living with melanoma. We cannot afford to go out. Even just for simple meals. If we didn’t receive vouchers for the movies for birthdays and Christmas we wouldn’t be going out at all.

We are asking for assistance. To manage the cost of my medicines, associated MRI and PET scans and for some help with costs of living. We both appreciate any assistance you can provide.
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Renae Williamson
Wilson WA

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