Category Archives: Chemotherapy

Advocacy Avoidance

Posted in Bumpboobs, Chemotherapy, Treatment by

Sitting here on a train that is somewhere between Ottawa and Toronto, quietly cursing myself for putting off this so long. After a couple trips to different eye doctors – one at a private clinic, the other within the hospital, and having been sent home both times with the sentiment, ‘we don’t see anything’ I have become a self-doubter. Also after a couple calls to the hospital about when my MRI will be, and why is it being put off till April – with one not-so-happy response, and then another with simply no response at all. . . my inhibitions kicked in, and I just plain shut up about it.

I thought it would be okay to wait till next week during my doctor visit to bring things up. I thought my eye would be okay.

Except now the left eye is blurred and shadowy and flashing. Not a good thing. I’m really such a jackass for not doing something about this earlier in the week. Somehow I figured it would be okay.

Anyhow, so here I am on the train from Toronto to Ottawa, following a week of conference and meetings and work stuff . . . and kinda falling apart emotionally. Just kinda, because I’m not breaking down. So – that’s simply ‘kinda’.

We’ll arrive in Ottawa and meet my parents at the train station. They’ll give us a ride to the emergency room. I’ll ask them to take a look of my left eye and help fix this problem, if it can still be fixed. And meanwhile my nose has been bleeding for most of the train ride – and there are freight cars ahead of us making this train delayed by an hour – therefore I won’t get to Ottawa till 9:30 pm.

Next week I’m supposed to be setting up for chemotherapy. They found a marker in the cancer that is HER2+, which is good only because there are targeted therapies for this kind of cancer. The plan is to blast away the cancer by coupling the HER2+ treatment with chemotherapy.

yay.

No, it’s actually: YAY!

But still. Chemo. Ugh. Terrible stuff.

A part of me is scared it’s too little too late. Life feels normal despite the cancer, until you can’t sleep from back pain, or until the spot in your eye starts growing rapidly, or until your nose won’t quit bleeding, or until your damn lung decides to collapse in the middle of the night. (Until you throw a hissy fit on a VIA rail train.)

I’m a jackass because I didn’t push when I knew things needed to be pushed. I just stepped back after a couple attempts and said, ‘Okay I’ll wait’ – except waiting when I know there is a problem is doing me zero favours.

Part of this whole ‘dealing with cancer’ business is being an advocate. And sometime, I guess that means not caring that you are potentially bothering others.

All my life I’ve felt I was bothering others! I’d literally not call my friends in fear that I would be taking up their time unnecessarily. So when it comes to taking up a doctor’s time with repeated requests for a speedier MRI or hospital appointment arranging . . . auuuuugggghhh.

And then there’s just plain denial. That is my responsibility, and my comfort blanket (until it’s really not so comfortable anymore). I have put off getting this eye thing checked AGAIN because it’s actually easier to do nothing. Every time I do something is takes a whopping load of effort and determination. The idea of having to repeat advocacy moments over and over and over until answers are found is just so . . .

It is just so very necessary.

I don’t like it. But it is necessary.

Anyhow, this train is late. My nose is still bleeding. My eye sight is like looking through a glass of beer. The seat is pretty cozy. And it’s quiet in the car. Out the window there is darkness, with the occasional pockets of streetlights and cities. I am okay. I’m not in pain. This will be dealt with.

I will go to the emergency room, and I will advocate for myself again.

And then, probably sometime tomorrow or Sunday, I’ll crawl into bed and turn on the Netflix, and hide from the world like I so love to do.

 

Co-Survivor Award: My Mom and My MAN

Posted in After treatment, Bumpboobs, Chemotherapy, Life, Life despite cancer, Love, Radiotherapy Treatment, Treatment by

Way back when I was first diagnosed and wrote a profile for myself for Bumpyboobs and FacingCancer.ca, I identified myself as a survivor. Forget dictionary definitions, I defined a survivor as someone getting up every day, facing what needed to be done, learning how to thrive through uncertain realities, and living life on their terms.

My life, my definition.

So when FacingCancer.ca recently announced their Co-Survivor Award, it made me really happy to see their definition of survivorship:

We believe survivorship begins at the time of diagnosis.

And it made me even happier to see that they’ve decided to honour those who have supported us, honouring the support they’ve given.

And surrounding every cancer survivor, there are people who care: we call them Co-Survivors. Whether it’s a friend, a family member, a medical professional or an online supporter, use the form below to tell us who has made your cancer experience a little better with their selfless support.

There have been many people in my life who have helped. From friends in England, family in Canada, letters & emails from my friends during treatments, support during my crowdfunding, and the awesomeness and insight of those who get it online. But for the Co-Survivor award, if I could nominate someone (and I can’t because I work for FacingCancer.ca), it would be two someones: My husband and my mother.

Zsolt is Zsolt. You know him via this blog. He is softness and love and unconditional support. We’ve been through so much together and still we dance in the middle of the day. There’s so much to say, I really cannot begin to capture it all.

My mom, well, she’s my guide, point of reference and my friend. When I hear one thing regarding healthcare, I’ll take it to her for her opinion. And I’ll never forget how she left Canada and my dad for over a month (to sleep in our small one bedroom apartment on an air mattress in England) to help me recovering from the mastectomy – and then to help Zsolt and I weather that first terrible round of chemotherapy.

So here is the question: Who is your co-survivor, or co-thrivor, or co-awesomnesser?

award

If you live in Canada and can think of someone you’d nominate as co-survivor – then I invite you to pitch in your story over at FacingCancer.ca. Ten from the many will be chosen, and then we’ll agonize over them to land upon the first Co-Survivor recipient (but the ten will also receive goodies, too). Can you think of someone? Nominate here.

If you don’t live in Canada, and I know many don’t, but still want to share who has supported you , that’s what the comments are for ; ) People do read the comments, and they do pull inspiration from them – even folks supporting others, and needing to hear the positive impact their actions may have. Or even better – write about it on your own blog, and then link it back here. 😉

And you know what? Even if you haven’t had cancer (I hope), you may still have a co-survivor in your life, or co-supporter. I love stories about love, and about generosity, so I welcome you to leave your own reflections.

Now, that is all I have to say about that.

Except this P.S.!

P.S. I wasn’t asked or prompted to write this post for the award. I just like the idea. Everyone who does something kind for another person deserves to know their impact. This is just one really great way of saying thanks.

 

 

Asking for Help & Feeling Ashamed

Posted in After treatment, Bumpboobs, Chemotherapy, Life, Treatment by

I saw this video after Neil Gaimon tweeted it out to his followers. It’s a TED Talk featuring Amanda Palmer. Okay, maybe like you, I’d never heard of her before. But Neil Gaimon is a very cool author and I trust his suggestions, so I clicked through.

At first I wasn’t sure what to make of her talk, but by the end I was thinking to myself, “I’ve got to share this with the awesome people who read my blog.”  (Skip to bottom of this post if you’re really excited to view it!)

Her message is just SO powerful. The idea that “it’s okay to ask.” Sure, she’s speaking from the point-of-view of an entertainer trying to make a living . . . but going beyond that, to the concept of asking, to the concept of supporting. It’s amazing. It’s powerful.

I’ve said it before, and I’ll say it again right now. It was damn hard to ask for help during chemotherapy – hard to the point of shaming. And yes, when I finally did break down far enough to say I wasn’t okay, people were incredible in giving their support. I think of my family, I think of my friends, I think of my cousins, my aunts, my boss, my colleagues, my husband. They were all incredible.

So why – WHY – so much shame in asking?

There is power in asking for help. Maybe Amanda is right. Maybe this is the future – and not just for music, but for dreams and lives and ambitions. I know of one women in the US who is struggling to pay her medical bills (Okay, I know of several women in the US who are struggling – universal healthcare is a GOOD thing, not a communist thing) and her friends are crowd-sourcing to help her buy a new car (replacing her ancient clunker) to get between treatments. I know of another young woman who has started an amazing charity called A Fresh Chapter, and she’s been raising funds to help twelve other people discover life after cancer.

Whether it’s thinking big or just thinking about the next meal – what is wrong with asking for help?

So here is the video. Don’t get weirded out by the ‘live statue’ intro. It’s worth watching through – this may well be the future of creative work. And asking for help, that’s something we should all be able to do without shame.