BB Blog — breast

A friend Sara Hindhaugh has started this beautifully written blog about her journey living with Cancer. Her initial diagnosis and treatment path was similar to mine, but now Sara is facing harsh new realities of secondary cancer. 

"...Two days later I was back in hospital and knew, instinctively, that it wasn’t going to be good news. (I’ve learned over the years that when a nurse walks in with a doctor it’s usually a sign of trouble.) My consultant doesn’t muck about with sharing information, just comes straight out with it. “We’ve got the results of your bone scan – it’s not good. You do have secondaries.” Boom! All the air was sucked out of the room in an instant and every sound was amplified. Very weird. I didn’t cry, at least I don’t think I did. I know I said ‘thank you’ a lot. How British of me. ‘Thank you, thank you so much’, ‘yes, of course, thanks’ WTF? It’s hard to describe the shock of hearing news like that.  I remember thinking it was odd that they didn’t seem bothered with the stuff they’d found on my right breast anymore. I did ask, but I can’t remember what was said. I cracked a sweary joke about it that made my mate Beth laugh out loud and then feel instantly guilty and inappropriate, but we needed that release."

Follow Sara's blog A Great Tit here:

https://agreattit.com/

"Life does not simply end with an MBC diagnosis. Our writers prove this again and again with the glimpses they provide here into their lives. But they do need support. Let us begin by clearing away the pink fog of October and bearing witness."

The latest copy of WILDFIRE Magazine is available in print and online. April Stearns insightful and sympathetic writing touches again...

"When I sat down for the first time in the overstuffed La-Z-Boy at what I would later term my “Chemo Lounge,” I was not thinking about metastatic disease. I was merely thinking, “Get through this and then get back to normal!” After the IV was hooked up and the first drops of medication entered my system, a woman in a fuzzy gray knit cap across the room waved and smiled at me and asked kindly if I was new. I liked her right away. I did not know she would later become the first person I met after my diagnosis to die from metastatic breast cancer. Her name was Julia. As it turns out, she was the wife of the local farmer where I got my Community Supported Agriculture box. In our smallish town I “knew” Julia by name, mostly by her recipe-related emails that went along with the CSA bounty, but I didn't really know her in real life. Now as I sat across the room from her, life got very real. I learned that she was on her second diagnosis. The first had occurred when she was 35 and her daughter was 4 – eerily identical to my own statistics. Now she was 45 and facing both a teen daughter and a metastatic recurrence. She would pass away within a couple of years of our chatting that day.

Despite meeting Julia, I remained pretty clueless about MBC as I traveled through my treatment year. Whenever I had questions about my own risk of metastatic disease, my oncologist brushed them aside, preferring for me to stay positive, to “cross that bridge when we come to it.” So when my last day of chemo came, while I didn't ring a bell (there was none) I did bake muffins for the whole Lounge to celebrate. I had no awareness at that point that some of the people in there that day would never have a happy last day of treatment.

When I look back at who I was then, I cringe. I was so naive about MBC. But I also have to recognize that it wasn't entirely my fault. As much information as there is around us about breast cancer now, there really isn't a lot being said about MBC in the mainstream even now. Most people, through little fault of their own, live in a pink fog in which they believe breast cancer is now curable, that it is the “good cancer” to get, that early detection saves lives, that breast cancer awareness month is doing service. Sadly, these “truths” are false.

Here is what I now know for sure: 1) the MBC community needs us, 2) 1 in 3 early stagers will face a metastatic recurrence no matter what stage they were initially diagnosed, and 3) you don't have to be diagnosed with MBC to advocate and educate about the disease. The new issue of WILDFIRE, our third annual MBC issue, is all about shedding light on the young metastatic community and helping those within it to see one another and know they are not alone. This issue includes stories from women diagnosed with MBC after an initial diagnosis of early-stage breast cancer as well as those diagnosed for the first time with late-stage breast cancer. They come from all across the continent, many different walks of life, in their 20s, 30s, and 40s. The one thing they all have in common is their MBC diagnosis was not because of something they did or didn't do. It was simply really shitty luck.

Have I had any side effects... honest answer? I can't tell if I have or not so far. Still the same tiredness. Still the same nausea. Still the same hand joint pain. Still the same on and off headache I just can't seem to get rid of. Hmmm, but I think my anxiety has been a bit worse actually. My hormones acting up maybe? The uncertainty of coming off the drug, its withdrawals and what it means to my risk of getting cancer again more likely. I can't stop questioning what I want to do with this next chapter in my life and if I'm on the right path... and where do I want that path to lead? Overthinking... yes... can I help it? No.

One more practical aspect of coming off Tamoxifen after 10 years (and still pre-menopausal which means not going straight onto any other hormone based drugs) is that I am now 10 years cancer-free and also now not taking any serious medication which means I am in a really good place to get some life insurance for the first time. Having a mortgage and two dependents its been of some concern for me for a long time. I hope to get this sorted soon and I'll let you know if I find a good sympathetic and straight forward company!

Day 1 No Tamoxifen! Well it would appear that I'm really closing many doors on my cancer journey this month. Finishing off my breast reconstruction and now being discharged from my Oncologist's care and stopping Tamoxifen after 10 years of taking it! Its now I realise its been a gift and curse. Whilst its a pretty nasty drug to take to prevent Breast Cancer, it carries risks of ovarian cancer and other unpleasant side effects. I've now come full circle and am really worried about coming off the drug and how it will effect my body, my mood, my skin,...

On Saturday I will get Nipple Tattoos! These little cherries will literally mark the end of my very long journey of Breast Cancer, Double Breast Reconstruction. Having searched an researched a lot over the years and even contemplated a trip to the States, after a long wait I have found the perfect person to finish my nipples.  Having been surprised at every stage of the reconstruction process by how much better emotionally it made me feel (after the surgery had healed!). Restoring some of my femininity after many years with just one boob. Clothes fit me better and I have more shape. ...