Lyn Batchelor – Carer
Tell us a little about yourself
I married my husband Bob 47 years ago, a strong hard-working man who made me feel safe and very special. From the get-go we were a team that complimented each other in everything we did.
When and how did you first find out you had melanoma?
22 years ago, Bob was diagnosed with Multiple Sclerosis, and with this diagnosis came the realisation that he had already been struggling with the disease for at least 15 years prior.
At Christmas in 2014 Bob felt lumps in his neck and so started our journey with Melanoma along with MS, including physical and mental impairment combined with stages of endless treatment and the symptoms that come with it.
Tell us about Bob's treatment
He has been Stage IV with brain metastases (mets) for 9 years and has finished immunotherapy (monkey juice as he likes to call it) 5 years ago after almost 3.5 years. During this time Bob has also had stereotactic brain radiation.
He has no treatment for his MS as it conflicts with Melanoma treatment. He still has resultant (after brain mets treatment), post radiation necrosis which has in the last 12+ months started growing. There are no treatment options left for him so once again we are thrown into the land of unknown. Dealing with the uncertainty and worsening disability can be overwhelming.
What challenges did you and your family and/or friends face after your diagnosis?
With both diagnoses I have felt anxiety, inadequacy, depression, sadness, frustration. Why me? Why Bob?
I believe that carers do go through the stages of grief – denial, anger, bargaining, depression, and acceptance.
The sense of unfairness, feeling unsupported and grieving for what life should have been are some of the feelings I have encountered. There has been a shift in the relationship dynamics to deal with as well as flow on effects with loved ones.
Bob, on the other hand, has mostly coped well and takes the attitude that there is always someone worse off than him.
We both know how lucky we are to have had so much extra time then others have had on this journey.
Tell us about your involvement with MPA
I joined the MPA Facebook Closed Support Group in 2016 which has proved to be a fabulous support.
Since 2018 I have been a facilitator for the Gold Coast support group.
How has melanoma cancer affected your outlook on life?
The caring role is usually not chosen by most people but when your partner, child or other loved one is dealt a blow in life we step on the roller coaster with them and hold on tight for the ride.
The best words, which I wish I was given from the beginning are ‘it’s okay to grieve’. Those words would have validated how I was feeling and that I had felt guilty for having.
Another great piece of advice came from my elderly Dad only recently ‘if you can’t fix it, then there is no point losing sleep over it’ – oh boy, the hours wasted!
I consider myself a supportive wife, partner and mother but being a carer has not come naturally to me. I’m great with the organising/researching part but the nurturing bit I’m not so great with but along the way I’ve learnt a lot of coping skills.
In retrospect of the past 17 years, I wish I had shared my thoughts with close family and friends, instead of pushing people away. Also, sought help, guidance from carers groups much earlier.
I’ve realised that for carers, self-care and timeout to enjoy things is a high priority and having patience.
I also wish there was a lot more relevant help for all carers. We give up so much, which often has a financial, physical and psychological impact.
Do you have a motto or personal mantra?
C’est la vie – such is life.
I’m happiest when…
When surrounded by my family, traveling and going out to dinner!
