Monday, August 18, 2014

The down and downs of secondary breast cancer (from my perspective).

I’ve been meaning to write something to temper some of the posts on here which seem to make out that our life is a jolly series of outings and happiness. I wanted to put into words the shadow that is hanging over us.

As most of our friends (and/or readers of this blog) I’m sure know, Amy was diagnosed with breast cancer at the end of 2010. Since then she’s been through a mastectomy, had her ovaries removed and (for good measure) had her gall bladder taken out too. 

She’s had a horrific and un-ending cocktail of drugs, chemotherapy and radiation every one of them taking its toll on her poor (yet incredibly strong) body.

When Amy was diagnosed my knowledge of cancer was minimal (and I’d actually worked for a cancer prevention charity for a few months as well!) so what chance the rest of you? Why should I know anything? Cancer hadn't really "touched" my life. Aside from a couple of sad sad instances as a child I didn’t know anyone with the disease – it was something which happened to other people not me.

Now I realise even the phrase "touched" by cancer is a joke -written by someone trying to soften the blow of it all or a marketing wizard who like me didn't have a clue. Cancer doesn’t “touch” your life it pummels your very existence and then kicks the shit out of you. 

Everywhere you look there are stories of people who have "beaten" cancer or people who are cancer "survivors". We donate money and "hope" for a "cure". The whole world of sadness is masked in a big pink veil trying to pretend it’s all a tough, but ultimately winnable "journey".

In one of the first conversations we had with the oncologist 3½ years ago she told us that Amy would never be “cured”. Amy’s cancer has metastasized. In case you don't know (and I didn't) that’s a big medical word for ‘spread to other parts of her body’. It’s not something you hear much about when you’re buying your pink ribbon or chucking five bucks into a bucket to buy a daffodil. It’s hard to explain to people when you talk to them. In return they tell you stories of people who were sick but then had a miraculous recovery and ended up running marathons. I think they do it to make you feel better. It doesn’t really, but it’s a nice thought I guess.

In the last few weeks Amy has grown steadily sicker. As well as cancer in her bones – spine, shoulders, hip and knees the cancer is now in Amy's spleen and worst of all her liver. When you look at a body scan which highlights where the cancer is, Amy’s body lights up like the milky way.

A few weeks ago oncologist told us that Amy may die soon and we should tell the kids.

Audrey (aged seven) and Eli (five) are amazing really. As long as they can remember their Mum has taken weekly (often more frequent) trips to the hospital. Not many Mums have to do that. To our kids it’s the norm. To sit with them and say that their Mum might die soon, and not be there for them as they grow up was heartbreaking. We all sat and cried.

Amy’s now on a much stronger chemo. Don’t press me for the name of it. I’m useless at that sort of thing. Amy is fabulous – she knows the name of the drugs and more significantly maintains good links with others who have each taken a wide array of assorted cancer drugs and understand about side-effects (always horrible). Occasionally good friends she has through networks she has built up, die. They are always lovely people, and almost always young and with families.

In the last couple of weeks it’s started to look like the chemo Amy's on isn’t working how it should. Amy’s blood count readings (which she has every three days) have increased (following four or five weeks of "good" readings) and the oncologist is at a loss where we go now. There are "other" treatments but all of them will damage the liver. Amy’s liver is already knackered. Amy has been exhausted for days and had so little energy for someone who is naturally so active.

I’m trying to take the kids out as much as possible to give Amy as much rest as possible and I guess in part that's what this blog is recording. Even that's tough though as then it leaves Amy to go through some of this alone and I hate that. I'm trying to cook when I can, wash and iron when I can, in a desperate effort to give Amy as much rest as possible, to allow her body to go through one of the miraculous recoveries people tell me about all the time.

I don’t know what the next few weeks will bring. I’m scared and fraught. My lovely wife is dying and despite everyone’s help support and kind words nothing can put things back the way they should be and I can’t do anything to stop it.

Amy's stubborn (a good thing in this instance) and I know she'll "fight" (another favourite phrase people use) but equally I know some battles you can't win however hard you fight.


Anonymous said...

I am sending huge hugs to you all. You have written beautifully and from the heart about the other and all to real side of the coin that families who have someone living with Secondary Breast Cancer face every single day. I know and totally get it. I too hope for that miracle to arrive at your door.. sending all my love Sharon Xxxxx

sue oliver said...

Don't really know what to say... im in Amys shoes - breast and extensive bone and liver metastases, last chemo not worked too well according to lft's, dreaded ct on thurs. I just read what you had written to my husband and he had such a pained look on his face. We wish we could protect you more, my thoughts are with you all... sue oliver abc

Heather Zethof said...

Trevor, I know words can't really say how we feel, but you have done a brilliant job of explaining your situation. Nobody really gets it besides others in the same situation, people don't realise that miracle cure is for one in a million MAYBE! To sit down and spell it out to the kids is the worst thing to imagine. It's like losing hope. All I can say is Good Luck with everything xxxxxxxxxx

Veronica Calhoun said...

Trevor, thank you so much for opening your heart and sharing this. I'm so thankful that you and Amy found each other. I wish, so much, that there was something I could do to help. Instead, I send my love to all of you.

Veronica x

Sarah Riley said...

Dearest Amy and Trevor, I really don't know what to say - it's so, so unfair that any of you have to go through any of this - so am simply sending you lots of love and every possible positive thought across the miles. Sarah. xx

Patrick Davies said...

Thank you for sharing how you really feel as you all try to deal with the hard, heartbreaking reality of Amy's cancer. I think it became clear to me when I came to Canberra nearly two years ago how serious this was and what you were facing. We had a lovely afternoon by the river. But the shadow was present there too. Smaller than now, but still encroaching into a place it didn't belong.

I sometimes wonder if I would have the strength of character to cope with what you are all having to go through. Amy has battled with such calm and dignity. You are right - she is fabulous. You have been a rock for the family - even managing to keep faith in Wolves throughout... And you have both raised two gorgeous kids in circumstances that no one should have to face. No mean feat.

I don't believe in God or miracles. Even if I was that way inclined it would be hard to in the circumstances. But I do believe in people. Whatever happens, you have both touched and inspired more people than you know over the last few years. We will not stop rooting for you.

Anonymous said...

that really brought it home to me how cancer can rip your family and your life apart. All our thoughts with Amy and you and the kids over this difficult time.

Robin and Shan

Simon Miels said...
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Simon Miels said...
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Simon Miels said...

Trev, Ive just read your post and re-read it over and over again. We love you heaps and are sending big big hugs and kisses. Barb, Simon and Jack xxx