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Mesothelioma

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Finding Australian support specific to your diagnosis and needs can be difficult. The internet is full of bad news, misinformation and worst-case scenarios. Yet, you are expected to learn to live with this ‘new normal’ and navigate how to tell loved ones about a cancer that most people have never heard of, let alone can pronounce.

Experiencing Grief

“The life of the dead is placed in the memory of the living”. Marcus Tulles Cicero

The thing about grief is, you don’t get over it or leave it behind as your life pathway continues without your loved one. You carry them with you.

It may at times, particularly in the beginning, feel like an unbearable load. A burden too heavy to carry alone. Sharing your thoughts and fears with others who are trained or have experienced a similar loss can help shine some light in your darkness.

You may feel relief, guilt, anger, sadness and be overwhelmed all at the same time. These feelings may never fully leave you. But they will get easier to carry. The idea of getting ‘over’ death is replaced with the idea that we grow around our grief. Our person will always be part of who we are, in much the same way as how the person shaped our lives when they were living. But it won’t always be the biggest part of our feelings. Time doesn’t heal wounds it gives us the tools to manage it.

Those of us who have felt grief will attest to the fact that it can pop up at the most inappropriate or inconvenient times, often when we are emotionally charged or sometimes randomly in the supermarket over a packet of frozen peas. Our loved one lives within our memory.

Grief can be like a needy child, demanding of your attention. If ignored or quietened for too long, can becomes less manageable and take up more space. Grief demands to be looked at and listened to and accepted.

Everybody grieves differently at different times and intensity. It can make you feel exhausted or closed off from the world you knew. How it affects people is normal. There is no right or wrong way or time expectation for grieving. How you feel is relevant, remembering that this too will pass.

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Peer Support

People often feel less anxious and more hopeful after connecting with others on a shared journey. While not everyone likes the idea of support groups, talking with someone who is going through similar experiences can reduce anxiety and be an encouragement to both parties. Through sharing of information and coping strategies, a library of knowledge, experience and resources specific to the needs of the group is developed. This is especially important for rare cancers like Mesothelioma. Main line cancer services can often fail to meet the specific challenges faced by Mesothelioma clients and, as a result, alienate them or leave them feeling more alone.

Our support groups meet face-to-face, in online chat forums and Facebook groups. Sessions are mostly informal, offering an opportunity to debrief and feel supported whist enjoying a coffee and social chat. Opportunities also arise for education and ‘ask the expert’ sessions. A good support group should be moderated or facilitated to ensure the safety of all group participates at a vulnerable time.

If you would like to join the Reflections Private Support Group, please email our Support Network Coordinator, Lizz and join us online through our Facebook Group.

Posthumous Support For Loved Ones

After Death

After Death

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.“ –Kahlil Gibran

For most of us in the Mesothelioma community death of your loved one will not come as a surprise. Even when death is anticipated and relieves suffering, grief can be overwhelming. The time following death remains challenging with a seemingly never-ending list of things to do whilst trying to make sense of the latest new normal.

This useful checklist may help in organising what to do when someone dies.

The time following the funeral can feel lonely and quiet. You have permission to be gentle with yourself and not do too much. Establishing a simple routine that includes a shower, a simple meal and time spent outdoors can be helpful in helping you look after yourself.

It will take time to adjust to this life, without them. Take time to think about your lives together and encourage your family and friends to share their memories with you. Hopefully you will feel able to laugh as well as cry. It is a very emotional time. You may experience feelings of anger, guilt, sadness, emptiness and relief over the course of a few hours. There is no right or wrong way to grieve or any time limit that needs to be observed. In preference we think of learning to grow around our grief, it remains a part of who we are and informs our future.

Dealing with unwanted advice or inappropriate comments.

“I could forgive those that said the wrong words but not those who said nothing at all” – Mother after death of her daughter

Many people have little experience with death and will rely on how they have seen others act in offering comfort. Friends and relative will often say things they consider may be helpful, that make you sad or angry. You probably won’t have the energy or inclination to correct them. Remember that you don’t have to listen or take advice or act in any way that doesn’t feel authentic to you. You also have no obligation to any visitors. You are not a host in this situation and visitors should be advised to make the tea and leave within the hour unless you prefer otherwise.

Moving forward

“The sun will rise in the morning and the world will madden you with its insistence to move forward. However hard it is to imagine, inevitably the seconds will turn to minutes, to hours to days and you will find you have survived more than you thought possible”. – Elizabeth Clarke

To Honour You

This Poem by Connie F. Kiefer Byrd offers a potential future.

To honour you, I get up every day and take a breath, and start another day without you in it.

To honour you, I laugh and love with those who knew your smile, and the way your eyes twinkled with mischief and secret knowledge.

To honour you, I take the time to appreciate everyone I love, I know now there is no guarantee of days or hours spent in their presence.

To honour you, I listen to music you would have liked, and sing at the top of my lungs, with the windows rolled down.

To honour you, I take chances, say what I feel, hold nothing back, risk making a fool of myself, dance every dance.

You were my light, my heart, my gift of love, from the very highest source. So every day, I vow to make a difference, share a smile, live, laugh and love.

Now I live for us both, so all I do, I do to honour you.

Reflections Support Resources Directory

Browse our Support Resources Directory
to find your best support services

VIEW DIRECTORY