Wednesday, 18 September 2013

Running and Stumbling

 Six months ago my family got one of the biggest shocks possible, and like the starting gun of a marathon we have been running and stumbling since.

My mother was diagnosed with a Stage IV Glioblastoma Multiforme (GBM) brain tumour.  Since then we have all survived her surgery, six weeks of radiation and monthly rounds of chemo. We wouldn't be able to do it without the incredible support we have received. Advice, practical love, listening ears and thoughtful gestures are carrying us when we feel like giving up.

So in honour of this and to 'pay it forward', here are two lists of ideas that you might find helpful if you are either caring for a loved one with cancer or are a friend of a carer. This is by no means a fool-proof guide on how to deal with such a difficult situation but rather what has worked for me so far.

If you are a carer:

* Two of my nearest and dearest girlfriends gave me this piece of advice about fighting cancer "remember it is a marathon, not a sprint". This has been so true. Try to pace yourself, make time just for you and be kind to yourself. You are no help to anyone if you are totally drained.

*Rally your team, delegate certain tasks and have a roster. This has really worked for my family. One of us deals with the finances and legal tasks while another two rotate being at appointments and giving home care. This allows for everyone to still maintain other life responsibilities and reduce burnout. We also have a family calendar which gets updated and circulated regularly so everyone knows when the next appointments/trips to Sydney are.

*Use a whiteboard in your kitchen and write down critical things especially the medications list including dosage instructions plus important phone numbers.

*Have a good record keeping system, even if it is just having one big folder for everything. Take it to all your appointments. You could be dealing with surgeons, oncologists, radiologists, physiotherapists, psychologists, nurse coordinators, occupational therapists, GPs and more. Inevitably they will ask for certain types of information so it is just easy to have it all on you.

*Fight for the best and don't stop until you get it. It is a harsh reality but when it comes to medical practitioners there is the super stars and then the not so good. Do you research, ask your contacts, find out who is the TOP GUN in their field and get them to look after your loved one. Never apologise for being pushy, this can be a life and death situation and I want the person with the best record for saving lives.

*Plan fun. With the gruelling schedule of appointments, feeling ill and just surviving you need to have fun, take the edge off and heal. Every Tuesday night mum, my sister and I have date night. Sometimes we go to the movies or a show. If mum is not feeling crash hot we just hang at her house. We have also planned a few small family trips.

*Be proactive. I'm not a doctor or in research and at times feel hopeless, so I have done some fundraising for different cancer related charities. It makes me feel like I'm doing something positive and contributing to a brighter future.

*Seek help. I'm always here to help if I can in some way. All you have to do is get in contact :)

If you are a friend of a carer

The best advice I can give is just DO SOMETHING! If it is from the heart it will be appreciated and radiate hope and love. Do what feels right to you. Here is some things people have done for me:

*sent a text or a Facebook message checking in
*cooked some meals
*sent flowers
*sent a handwritten card
*supported fundraising events
*called and listened
*shouted a pedicure and massage
*been physically present 
*allowed a flexible working environment so I can attend appointments
*looked after our pet while staying in Sydney
*cleaned our house and stocked the fridge before we returned home from Sydney
*provided mum free haircuts/head shaves
*helped with my sick toddler so I could get some sleep
*made me laugh
*allowed me to cry
*shared advice and experiences fom their own battles
*continued to be a support long after the initial shock
*been a true friend

Hopefully the above has helped in some way. In all of this it has been so humbling to receive such gracious gestures and to know how precious life truly is.



  1. I feel like I cannot contribute to this discussion because I've never been in this situation. But something I've been meaning to do is to come up with a list of five people who I can go to for different things and let them know. So it might be someone I can talk to on the phone and have a cry with, someone I can call to go out and have a drink with, or someone I can call to ask for specific type of advice from. And just carefully think about these people, I wouldn't be able to effectively count of my friends who have children to be able to go out with a moments notice but I can definitely call them if I feel like a cry. My blog friends would feature quite a bit on this list because they are so supportive.

    1. Hi Vanisha,
      I think that is a great idea for a post. It is true all our relationships are unique and play a special role in our lives :)

  2. Em this post was so helpful. For me, even though I'm going through a similar situation, the advice you've given can be applied across the board. In principle, it's really about how to be a supportive 'someone' be it carer, mother, father or friend, to those who need it. Thank you for sharing your story and for always being so freakin kick ass,even in times of trouble, .xx Sabs.