05 August 2011


Next week I begin the road into drug trials. In particular a drug called Neratinib that they hope will lessen the recurrence of brain mets for women who've had a Her2+ breast cancer. I fit the bill for the trial (completion of herceptin and no mets), and so next week I am back at Auckland Hospital after a blissful break from over a year of 3 weekly visits.

I feel this decision is good as I'm taken care of by a great team, and the chance to try a new drug to help lessen my chances of recurrence is fantastic for me (unless I get the placebo). However it is tinged with fear, dread of new side effects and basic all round reminders that I'm not off this rollercoaster of cancer I've been riding.

But this morning I woke up with a swollen left side of my face, in particular my forehead has swelling that I've never experienced and upon showing it to my GP he announced he's never seen anything like it. I don't know what is wrong with me and every new thing that my body does since chemo threw it into a chaotic mess, throws me right back to feeling how I felt at the beginning of this journey...vunerable, emotional and well, scared. My face has been giving me grief since going on herceptin. Random lip swelling that I thought was allergy based has increased from once a month to once a week and has got me thinking its being caused by the onslaught of coldsores, otherwise known as herpes simplex virus, that I've been having since chemo and continued throughout the herceptin treatments. And every time I get swelling I end up with a big horrible and painful coldsore. So my GP has put me on a 6 month course of acyclovir to hopefully make it dormant. Alongside that I've bought some lysine tablets to hopefully kick my natural immune defence system back into gear. If that doesn't fix it, then I'll go back for more tests. Hmmm...lets hope this does the trick.

What I'm essentially trying to explain though is that for each woman who has finished the treatment for breast cancer (and I mean surgery, chemo or radiation, or in my case all three) the biggest fear is recurrence. Things that used to be only a bother and maybe we'd leave it, give it time to see if it will heal, any ache or unusual behaviours of our bodies are now elevated immediately to the status of METS! in our head. It's a lot to deal with mentally. We are always on the lookout for it.

The betrayal of our bodies for getting breast cancer in the first instance is just the start of the unpleasant cycle in which we find ourselves in and the mistrust of our bodies is long and continuing.

I hate cancer.


Leonie said...
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Gail said...

I hate it too. I HATE it.
I hate that so many amazing women have had to face this journey - and not only them but their families too....

I will be keeping you in my prayers Mon.


Leonie said...

I hate it too.

I used Lysine last year for a bout of shingles. I hope it helps with your coldsores.

It must be such a lot to worry about all the time, the worry of mets and mistrusting your body.

lots of love for you beautiful girl.

Barbs said...

Oh Mon, poor you. Cancer sucks.

Hootnz said...

So much for you to worry about... Hopeflly the meds help with the coldsores so atleast its one less to cope with....

thinking of you xxx

Little Gumnut said...

Shed loads of love to you Mon.

jacksta said...

:( SuckY cancer..go away and stay away In jesus name!
Tell me you are coming to the bloggy meet up so I can give you a real life squishy hug!
For now this will have to do...

Sammy said...

Sweets, BIG hugs to you. And like Jacksta can't wait to give an IRL one at the bloggy meet!

Simoney said...

it Sucks.
Cancer sucks bigtime.
Whereas YOU, Mon, you ROCK.
Luv and totally believe cancer is gonna be beaten forever by you + God + medicine

Pammiej2002 said...

I somehow missed this post in my reader...I am sorry! I want you to know that you and your family are in my thoughts and prayers. OH HOW I AGREE THAT I HATE CANCER!!

liz said...

My name is Liz and I came across your blog while doing research on cancer bloggers online. I am very sorry that you have to start trials and that there is unexpected swelling. I hope that they find the cause of it and treat it as soon as possible.
With that said, I wanted to reach out to you and let you know of a new and free to use social support network called I Had Cancer (ihadcancer.com). It is a place to share your story, find others in the same shoes, connect with them and exchange information. The community can be filtered through by age, gender, type of cancer, type of user, year of diagnosis and location. There are other pretty interesting feature, while the goal remains the same, to help people find others going through the same thing and support each other. Please let me know if you would like any more information in the site. Thank you and I hope that the new drugs will let you fully beat this monster we call cancer.
Thank you - Liz@ihadcancer.com

Cat said...
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Laura said...

THANK YOU for your prayers for my sister...

and I will add YOU to my prayer list

and I hate cancer too.
so so soooooo much.


Mon said...

Laura...have left a message for you on the other blog. But just letting you know I'm here for any info or anything if you need it. xx