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Feeling Ostomistic
Saturday, September 26 2015

NB: This post contains raw emotions

I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.

You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.

It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.

My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.

So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.

It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.

So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.

My oncologist presented three options to me, these were:
1. I somehow come up with the money for treatment (and was considering taking my friend's up on their offer of a fundraiser)
2. That my oncologist could apply and advocate on my behalf to the chemo manufacturer for compassionate grounds and see if they would approve all or part of the drug to be subsidised, or
3. That we try a more toxic and lengthy chemo that would require WEEKLY rounds of chemo over 52 weeks

By this point it was a Thursday and I was told that I had until Monday to make my decision.

After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.

...........

Then .......

I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!

I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!

Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.

While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.

My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.

... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?

...CLICK....       ......CLICK.......      ......CLICK......

Maybe it only works if you're wearing glittery red heels?

Bugger!

P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..

I entered the Heritage banking savvy blog competition earlier this month, in the hopes of trying to win a share of $11k to help alleviate some of the financial stress I have had recently, and needing your help!

Please click here to vote for Feeling Ostomistic, and be sure to click the confirmation email they send you (otherwise it won't count) and please ask your friends too, I need all the help I can get to win most voted, and if I indeed won it would mean so much.

 
Posted by: Talya AT 07:08 am   |  Permalink   |  0 Comments  |  Email
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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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