Here we are again – I find myself sitting in the radiology
department at the PA hospital hungry, having fasted all day, and drinking
contrast disguised as ‘delicious’ (a very big hint of sarcasm) lemon cordial,
all of this for a 10 minute CT scan. A scan that will hopefully tell us that
treatment is still working and those little suckers of tumours riddling my body
are shrinking.
It looks like the hospital is running behind and I may be
sitting here awhile, so what better way to spend my time than writing a blog.
This scan could very well decide my future. Unlike previous
treatments, I am feeling very unfazed and not stressed. So, I am not going to
write a blog fearing the future and its uncertainty, instead I am going to
write about what is next in the world of Emma and Dear Melanoma.
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| Serge and I on our most recent adventure - back to reality now! |
The last 18 months I feel like I have been going nonstop.
Serge and I were married and we have done a fair amount of travel! I started
Dear Melanoma, which keeps me very busy – Serge always makes fun of me and
tells me to stop talking to my imaginary friends (that is all of you that
follow the blog!), but I try to explain to him that I treat Dear Melanoma like
a job, a job that I love and which brings great purpose to my days. On top of
this, we have planned fundraising events, including the most recent cocktail
party ‘Through the Looking Glass’, and with your help, in the last year we have
raised over $70 000 for the Melanoma Institute Australia.
Wow!
What is next? To be honest, I have no idea!
On a personal front, Serge and I are on a very difficult
task of finding our forever home. We are currently living in a tiny one bedroom
unit that my parents own – our garden is bigger than our unit, which explains
just how small it is!!! I am going completely nuts. We moved into the unit in November
2013 when Serge moved from the Gold Coast. This unit was to be temporary, for
only months – Serge and I would need to move back with mum and dad as my
condition deteriorated. Serge would return to our little unit after I passed
away. IT IS 16 MONTHS LATER AND I AM STILL HERE LIVING IN A HOUSE WITH NO
PANTRY AND A KITCHEN THAT I CAN’T DO THE HOKEY POKEY IN!
So, that is where Serge and I are at – mission find
somewhere to live. All the real estate agents like to ask us if we are wanting
extra space to start a family (at this point I start an elaborate lie), but
what we are looking for is unique. Cancer, and further more, terminal cancer
shapes our criteria. We need a place now (ASAP, time is precious… lets be
honest!) that is close to my parents, close to the hospital and close to the
community of support that I have been surrounded with my whole life. But, it
also has to be a place that Serge can manage on his own. What happens when I am
not here? My hope is that we would find a place that Serge would want to stay. Wish
us luck!
Now to my Dear Melanoma plans. I need your help and guidance
to decide!
Over the last few months with planning the fundraiser, I
have not had time to do much writing for the blog and I have really missed it.
Although it is sometimes difficult writing about certain topics and I end up
spending a lot of time crying over my laptop, I get a lot of strength from it. I
love the feeling I have when I see how many people have read the post. I love
hearing from different people and how they have connected and related to the
blog. I feel like I am doing something powerful and making a difference. So, I
am going to get back into blogging and dedicate more time to writing. What do
you want to hear? What are your favourite blog posts to date?
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| Through the Looking Glass was great success, now for something new! |
I want to have a break from fundraising. Although I continue
to see the great need for funding for research, I do not find event planning
and fundraising overly fun… it is too stressful and full on!
So, what am I going to do instead?
As I have spoken about before, I need purpose in my life – I
no longer have work or study. Before cancer, I was passionate about
international development. I was passionate about educating people at home
about the challenges faced by people living in developing countries. I was
passionate about helping those in need in ways that were sustainable. I was
passionate about campaigning and advocacy.
What I have realised that all these passions still remain; I
have just translated them to melanoma. I am passionate about educating people,
especially young women, about the dangers of sun exposure and the principles of
prevention and early detection. I am
passionate about campaigning and advocating for greater access to treatments. And,
I have the skill set to do these things.
So, on top of concentrating on my blog, I am going to spend
the next little while brainstorming what I can do around education, campaigning
and advocacy work. I will look into how I can connect with other organisations
and initiatives, or if there is a gap, hopefully I can fill it.
Hi Emma, you are one awesome lady. Miracles do happen. you are in my thoughts. stay safe and loved as you so clearly are loved.
ReplyDeleteWhen we were starting to plan our wedding, we contacted this planning team and received an email back almost right away. The party planner were very helpful with any questions that we had regarding their services and answered emails and phone calls very promptly.
ReplyDeleteHello Emma. As I have commented before, I am old enough to be your grandmama, but pop in to the blog and get a great delight in reading what is happening in your part of the world re fund raising etc. I am Stage Four as well. Here in Cairns it would be great to have a support group or social group who could meet once a month or whenever people feel like gathering. I feel it helps, no matter what the age gap is. I have always been a social person, lived and travelled all over the world and can connect with all age groups. I read with interest, your experience of sitting waiting hungry in the radiation clinic. My last CAT scan (I have had 1 per month this year as I went from unsuccessful Yervoy to Nivolomob, which is working on me, as we know, not a cure!). Anyway it picked up 2 tiny spots on the brain, aaahh! the one thing I dreaded. So had an MRI which picked up a few more. That means at least I have 10 days radiation here instead of going to Brisbane/Townsville and leaving my beautiful Rauli, a standard poodle, either with someone or in a kennel. He is getting old as well. So am just waiting to hear from the radiation oncologist for an appointment. Also I hear I will lose my hair. Which I guess in the scheme of things, shouldn't matter. It does!! I was going to get my blonde hilites done. When I started to go gray, as I was blonde, just added lots of different shades of blonde high lights and it worked. Now will I get a wig?? To me these are things you can really only discuss with someone going through this thing. Also we had our melanoma march walk and I felt it wasn't well publicised up here. It was organised so I heard by a sister of a young woman who had died in 2013 leaving a husband and 2 children. So it felt more around the family and workmates. I would have liked to have seen more patients out there. Discussed this with Dr Megan Lyle, the medical oncologist here in Cairns. She is going to organise her husband to be more pro-active in this for next year. What we need is someone like you to be able to be sponsored to come up to visit places like Cairns/Townsville/Bundaberg and any other big towns in Queensland to have meetings with people like us who are going through melanoma and want to link up and of course ultimately get with the fund raising as well as supporting each other. To have a meeting then end up with a fun lunch and put you back on the plane to Brisbane and your husband. By the way good luck with your 'forever' home. Lets have a champagne to that. Cheers Delphine
ReplyDeleteI have started reading your blog, as I have recently been diagnosed with Melanoma. I have just recently had surgery and I'm home recovering and waiting on more test results. My prayers are sent to you from the US...and I will continue to read and follow your journey on your blog. Thank you for sharing.
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