I am new to blogging but have finally calmed myself down enough to decide to try writing as additional therapy. My story is all over the place like my emotions.
I had a miscarriage around 1999 and the gyno said to get a breast check done as they can start nasty things happening in women my age. I did get a check a year after as advised and they said you are so lumpy you will never feel a small lump so you should have annual breast screens as well. OK. No worries.
Back in 2001 in August I found a lump. I only noticed a week before that one boob seemed bigger but then one always is. I put it down to the poor eating and biscuit munching. My GP didn't think the lump would be anything but I should get it checked anyway. I went to the breast clinic and had xray and ultrasound. Then fine needle biopsy and then core biopsy. Then ultimate diagnosis. You have cancer and need a mastectomy. Not only one pea sized lump but basically the entire right breast.
How can a girl not know that? How could I not have felt that? How did I miss the changes? Seriously how is that possible? I know I am lumpy but truely couldn't I have felt that?
I was diagnosed with invasive breast cancer and self flaggellation did not help. So I got a grip. Drove home and told my husband. OMG that is a surreal time. I almost felt that if I told enough people then maybe I would have to apologise later because I was wrong. Nope, That didn't happen. My GP on the Friday managed to get me an appointment with a specialist surgeon on the Monday. From meeting my surgeon to mastectomy was only 2 days Surgery was on the Wednesday...testing and results all through so quickly and he visited often...fabulous man and still is to this day. He takes me seriously and offers frank advice but understands how it impacts on family and is caring too.
My tests showed that I was ER positive and HER2 positive...double whammy. 4 out of 14 lymph nodes showed cancer cells so everything was taken all lymp nodes up to my collar and right down to my chest wall to ensure clear margins.. You can see my ribs! (it has been a long time since that was possible haha.)
Damn. Why me? What did I do wrong? If only... ! All those terrible emotions and feelings and more churning in turmoil inside. Devastation to my husband and my sister and her family. It really is a family diagnosis. I blamed myself for lack of diligence but then was reminded that even the GP didn't realise I had such a big tumour. The specialist likened it to a field of flowers suddenly blooming and it just took over. Not much consolaton but then we have to look forward not back. Only the future is able to be changed.
My daughter was about 6 and son only 4 - I thought I wouldn't see them finish primary let alone leave high school or go to Uni.
After surgery I had chemo (FAC) and radiation. Chemo was hard initially but after we discovered I can't have maxolon or codeine things swiftly improved. I lost my hair and bought a wig. I personally don't do bald anywhere near as well as Sinead O'Connor and I look like a crazy hippy 60's child in scarves. So hats and wig were my choice. Radiation was a breeze by comparison.
My treatment finished just before my 40th birthday and I was given a surprise party... all my Sydney family travelled to Brisbane to celebrate with me....even Grandma who didn't fly for anyone.
I went on hormone therapy - Tomoxifen and tolerated it quite well. I actually didn't realise it made me feel sub-standard until I went off it and on another drug and felt a lot better...amazing how you can adapt. I believe I was on Bonefos about now too.
Things are a little hazy now because it was a long time ago the actual dates etc really don't matter as so much has gone on since. Way more time than I thought I had considering my type of cancer.
I had regular scans and one such scan about 5 years later showed a lesion of about a golf ball size on my right sacroiliac joint area. The Dr asked if I'd had any falls lately. Well, I had been doing ice skating lessons and was up to jumps and spins and so have had some terrific spills. He sent me for an MRI to see if it was consistent with my falls.... alas it was not. It looked moth eaten and that I' m told is how cancer can make the bone look. No more skating and off for radiation. Change of drug to Femara to see if that would continue to hold things at bay.
That was the only spot for a while but they continue to appear. On my right hip and treated with radiation. In 2008 when I finished radiation and changed to another Hormone drug... Aromasin? I travelled to the US for a family wedding and came back feeling on top of the world. Full of energy.
I had about 1.5 years of no problems you almost forget about having a chronic disease then damn it you are reminded. Another routine scan showed that more spots had appeared in my hip socket. The story repeated many months later like ground hog day and in 2012 we found another spot on the pelvis (the bony bit you sit on) and on my spine at T7. More radiation right around my 50th celebrations in April. Ten years....wow time had marched on. I was surrounded again by family and friends and the people who I can turn to and who have been with me both before cancer and during. What a lovely celebration at my niece's soon to be opened restaurant. We were their first proper function.
We decided to go off all meds except Bonefos and see how I travelled. I wasn't that keen on the idea initially but thought well, maybe it will be the decider. I didnt feel better or worse being off the drug just one less tablet to take.
In Sept/Oct I went to the movies and tripped over my husband's foot. I fell into my seat and heard a pop! Well, that can't be good. OMG I couldn't move, couldn't take a deep breath. I stayed still and braced myself in the chair. I whispered "I have hurt my back and can't move - just so you know". I am sure my husband had no idea just how much pain I was in but he sure got the message after the movie. Nearly called an ambo to get me out of the cinema - but my pride wouldn't allow it. Days later and physio and Drs visits I was a lot better. Possible broken rib but didn't show up on scan. How could such a nothing event turn into 2 weeks of hell? Oh well. Life kept ticking along.
Shortly after I had my annual breast clinic appointment and Dr visit and told him I still didn't feel right. He ordered a body scan which came back clear. Thank goodness for that. And as I had no bone pain we left it until my scheduled New Year bone scan. My body continued to heal from the injury and I was determined to get fit again. I tried valiently but was so exhausted from walking just 20-30 mins on the treadmill on the flat. I even went to the Dr and had bloods and ECG I felt so worried. The only marker in the bloods was elevated calcium....ahhhhh alarm bells ringing in my head.
My daughter graduated from high school and applied for Uni. My son was about to start in Year 11....not my little babies any more. I never thought I'd make it this far.I also had such a stiff neck I went to physio again but it only relieved my neck slightly.
So, along comes Jan 2013 and I had the scheduled bone scan. I watch the screen as the bone scan progressed down my body...I lit up like a Cristmas tree! Damn again. Not good. Holy guacamole it is in my skull and neck and in more places in my spine and in my sternum. When do I start freaking out? Is now a good time?
The visit to my Dr was as expected. He had put me on notice a year ago that he thought the cancer was on the move and that our next progressive step would probably be chemo again and he recommened it this time. The cancer is definitely on the move and we need to stop it as best we can.
I have to say though, he knew I was not feeling happy with the interference that chemo can make in your life and he gave me other options to try first if I wasn't ready. I like that he gives me choice. I knew his preferred option but also that if I chose not to take that path then he would support me in any choice I made. In the end, after lots of research, soul searching, talking with a girlfriend, husband, family and reading other stories on this website (thanks everyone) I decided to bite the bullet and be aggressive towards this aggressive cancer. Chemo it is.
Portacath on Tuesday 5 Feb. First chemo on Wed 6 Feb Abraxane and Herceptin....and beyond......