Thursday, January 10, 2013

The Up's and Down's

Can cancer define who you are?

I got rather upset the other day as I was preparing a speech for a support group. The counselor had e-mailed me asking if I could tell my story, what keeps me motivated and how to 'live well' provided the situation. I wanted to finalise my talk by saying a list of things that could help for example ; get yourself a cancer buddy, try keep a routine, try live life as normal as possible,don't concentrate on the fact that you're ill. As I was thinking and trying to pick 'N''s brain for other possibilities he said that there was the obvious that everyone tries to live by: Don't let cancer define who you are. After thinking for a bit he said 'but I don't think it really applies to you...' I was mortified. 'How can  you say such a thing!?' Considering the circumstance I thought I dealt with my cancer in quite a good manner. I hadn't really thought about it but my life kind of does revolve around it - even up to how I earn my money, through my cancer magazine. It saddened me quite a bit - sure, we still do live as normal as a young couple can be but factors do affect us. I suffer out in the sun, my energy is sapped after doing chores, I struggle with fatigue walking in a mall, can't do xyz because I have chemo coming up, stresses with medical aid, recent hospital visits etc etc. Cancer really has defined who I am. Sure - it's lead me and moulded me to who I am today but it irritated me in a way because people now know who I am because of cancer. People wanted to know what I was about when they found out about my diagnosis. I was at a wedding recently and somebody asked who I was to the bride and groom. 'Oh - I'm Helen's cancer buddy, Nikki' - although I had never met the person before she knew exactly who I was. I was also a bit confused though that I chose that as my introduction. Clearly I have let cancer define me. It has however lead me to some amazing things, a career and people in my life.

OK - I have been naughty again. I saved the above in drafts meaning to get back to it but in fact never got back round to it. My apologies!

So much has happened lately where do I start?

My INR levels seem to be stabilizing. I'm still not sure how I get dosed on Wharfarin but magically after having a blood test done, I get an sms about 2 hours later giving me my next lot of doses for the next week or 2. An interesting fact that I found out on going for a check up to my doctor but did you know that Wharfarin was originally invented as rat poison? Somewhere in the 1940's Wharfarin was originally invented for the sole purpose as a pesticide. Madness right?

So - I have come up to having my 2nd edition of Live Well. Live Cancer. While the book is still small - it certainly is getting heaps of credit and big dreams of getting even bigger. My Next feature I am very proud of. Mark Pilgrim will be on the cover along with his story. He is such an amazing man that I have always followed and listened to on the radio. Here is hoping he's my golden ticket to success :) 

The magazine is certainly getting around which I am so thrilled about. Everybody is always so keen to receive them and they go like hotcakes in waiting rooms of doctors offices! Now I may not be making loads of money off this magazine while I am starting off but I do have a story which is simply priceless. It may be our way of our paths crossing but I'd certainly like to credit my mag for awareness. When my first edition was out - I got an e-mail requesting some books for an awareness breakfast. Happily I dropped the books off. Sadly I was in a bit of a rush where I had to go to my doctor but this certain lady told me about a lump that she had found in her breast. She had been a few months prior to a doctor to question it but the results came back inconclusive and told her to be back in another 3 months. In my rush I had told her that she really needed to go for a second opinion because clearly it was bugging her. She put it off and put it off and I eventually got on her case about it. I eventually said right - this is my doctors details. Visit him. She told me she was going to see her original doctor again for the call back. Her results seemed the same. Inconclusive. I gave her a call and insisted that she go to my doctor before she ended up in a mental hospital. This kind of uncertainty will drive you insane and in a nut house. She went to my surgeon and 2 days later she was diagnosed with breast cancer. The following week she was scheduled for a mastectomy (which was successful) and she will be undergoing chemo in just a few weeks time. Every time I visited her she introduced me as her hero. In no way do I feel like I am a hero. I am just glad that she went before it was 2 late. If I can create awareness and messages through my magazine, well then I feel like I have done a job well done!

I have had rather a shitty experience through chemo - I may hide it at times but I am still very hopeful and I try spread that wherever I go. With the support group I talked about in the beginning of my post I saw a friendly familiar face that I once upon a time came across when she had her first chemo. When everyone around the table was introducing themselves she looked up at me and said 'I would not be here if it weren't for that girl' pointing at me. I wanted to burst into tears. I felt so humbled. It makes me so happy to hear that little ol' me made a difference. That  makes my heart smile. I just hope that everyone else can pass that kind of thing on. Having your first chemo is such a daunting procedure. Nobody knows what the hell to expect as soon as that drip is opened and flowing into your veins. Seeing someone so scared while I am having my way too many to mention chemo is seen as almost a bit of a challenge to me. To get that patient to turn their fear into hope and faith is an amazing thing.

My last chemo happend on the 21rst of December. For some reason my body took a massive knock to it. It's almost 3 weeks later and I still feel exhausted and drained whereas it normally takes me just a week to bounce back. The symptoms I had were terrible. I had sore bones (everywhere from my facial cheek bones to my shins hurt), my appetite lessened, my stomach was upset. I was generally feeling very sorry for myself and I felt terrible because N, my better half was on leave. All I wanted to do was lay down and take it easy. On my day 8 I had my chemo again (which is normally a much lower dosage and allows me just a single day of taking it easy before I'm me and human again). Not even 30 minutes of taking that chemo and I was as ill as ever. I was feverish, nauseus, sore bones and throwing up. This wasn't like me....I certainly wasn't myself and I was feeling ill for quite some time. Mundane tasks such as quickly fetching something at the shops had me feeling feint. I was worried so I e-mailed my doctor also complaining about a ache that I had in my shoulder. I was asked to come in the next day. She instructed what I imagined. A bone scan, a series of blood tests and well as a CT scan.

I got the results today at my oncologist. My cancer margins are drastically up. The cancer is my liver has grown. The effects of my sore shoulder is quite possibly transferred pain. What was also noted was my extremely low white cell blood count. Due to my liver my body hasn't had the chance to heal itself properly hence the low blood count. I am supposed to start taking injections to get it all back up and running asap to prepare my body for the new chemo (here is hoping medical aid does not give me any s**t). The new Chemo I am supposed to go on is called Ixempra. It's designed at patients like me where red devil, paclitaxol etc etc (insert my list of never ending chemo here) has not worked. It's new in SA and my doctor has high hopes for it having some good effects. I hope and pray that this is my Silver bullet to kick cancers ass. This road has been so tough at times but I am determined as hell to cross the finishing line.

I promise to try and update soon...


Anonymous said...

thanks for share.

Anonymous said...

You've really been through so much. Cancer is a life shifting experience, how could it not define you as we are the sum of our experiences after all :). Don't see it as a bad thing, it just is what it is. Good luck and crossing my fingers that your next chemo is effective. xxx