Round 2…

My last blog which was ever so long ago, after radiation treatment had been completed, leaving off what the universe was to have in store for me?  The past year and a half has had so many ups and so many downs the rollercoaster has been somewhat crazy! Throughout it all though receiving overwhelming support and love from both our family and friends.

Since my last blog, I’ve had more hospital admissions than what I have had since high school. I’ve had punctured lungs, pneumonia and chest infections and then all of that at once also. I have not been able to put on weight (some might not find that to be a problem) but when you’re already scrawny it isn’t ideal to have no reserve when you get an infection. I had a 6-month period where I was completely covered in an all-over itchy body rash that still after many biopsies, bloods, creams and steroids had no real diagnosis.  My lung capacity had been consistently low. I had gone from ranging between 52% when unwell and 65% at my best, to my new best being 43% and the lower 38%, with no definitive answer that it was damage from radiation or me just getting old and CF progressing. I would like to believe it was radiation and not the latter, but still I am none the wiser to which it might be. I have had so many testing times yet despite all the unknowns, I have still pushed through and managed to have some fantastic times and to continue to create memory making moments. Some of the great memories have also come about because of my health. Including being asked to guest speak at two fabulous events; one at government house to raise money for the RHH Research foundation; and another at the CF Tasmania Ball to raise funds for Cystic Fibrosis. In both instances I was very nervous, but I thoroughly enjoyed knowing that by sharing my story I was able to contribute and help to raise money for both research and assistance to others living with CF.

Brett and I chose to take a break from our family business and to concentrate when I was well enough on making memories. Our employees, well they are considered to us as so much more than that, were nothing short of amazing in ensuring the business continued to run successfully in our absence. Being able to have that time together as a family and take so many trips both small and larger overseas trips with our closest friends has been amazing. There are so many places that we have now visited that I didn’t see myself ever wanting to go to and now so glad that we did, and some that I would so love to go back to! I would have to say the highlight at present was definitely spending time at the elephant sanctuary in Bali, such a memorable experience for us all. Unbelievably amazing to spend so much time with such a beautiful yet large animal. You may have seen the post that we sold our family home to make all of this possible, it is certainly something that I don’t regret. To me a home is more material (yes, we need a roof over our heads) but memories will last a lifetime! We did however manage to purchase and renovate a beach home to getaway to and have now put that on air bnb so that everyone can enjoy the peacefulness that it provides. It has certainly become a place that I enjoy going to, especially when I’m unwell as just being there makes one feel better.

So, you’ve probably read to this part and thought the heading doesn’t make sense. Please stay with me, it will become clear in good time.

So in the past 6 months we have brought a new home to renovate (we haven’t got to start yet as I keep having moments of being unwell) and we had just put together our strategies to start a new business whilst still being able to maintain our existing one and hopefully to create more for all involved. We have had been so positive to the future and what we hope to achieve and that definitely included more memory making moments to come.  My Lung Function finally hit a 50% and all was looking bright. But just like a boxing ring when you have been knocked down and get back up and continue on in the match you can be caught off guard and be knocked back down again!! This is how I am describing my life right now! A boxing match that I know I have the strength to win but then your opponent may surprise you and end up being the stronger one!

In April, less than 2 years from my original Breast Cancer diagnosis, I discovered another small lump. The lump was near the scar from the lumpectomy that I had in June 2017, so with my positive thinking I expected it to be more scar tissue from surgery. It took quite a few weeks, near months, for me to go ahead with a biopsy as I was too anxious given the pain I felt from the last one, and the fact that I hate needles. But by the time I did go for biopsy I had found another small lump, this time to the left of the scar. This was Thursday 20th June. Both lumps were biopsied. That weekend after the biopsies I was extremely unwell, spending near the whole weekend in bed either asleep or in the most excruciating pain. I opted no hospital and I would see my GP Monday much to Brett’s disgust. My GP advised that it was most likely some type of gastro type bug that was going around where there isn’t vomiting or diarrhea just immense abdominal pain. nausea and generally unwell with no energy. Described my weekend to a T.  She hadn’t received my results of the biopsies but she had seen my name on her list that day so had her team follow them up! In some way I wish she hadn’t! Both biopsies returned positive for Breast Cancer cells. Like being punched in the face yet again. We were completely stunned. It was this time I was grateful that Brett wanted to get to the bottom of the weekend, and that he had attended my appointment and it wasn’t like the last time when I was called to her office and advised to bring someone. I couldn’t believe it I though…..I had hoped that that chapter in my life would stay shut. I’d hoped the radiation and tamoxifen were doing their thing but clearly not. Whilst my results were unlucky, I was somewhat lucky in that my GP rushed me through to my previous surgeon the very next day. By that day I had found another new lump so a 3rd.  I attended his office on my own (well I took Brady but left him in the waiting room as I didn’t want him knowing what was going on). I thank god for Iphones as he was so engrossed in you tube and googling what he might like for tea  that he paid no attention to where he was.  Brett had flown to Melbourne for the day and as I thought I’d be fine to handle one appointment without him. Whilst trying to be the strong pain in the arse positive I’ve got this me!  I sat and listened….. “Sorry but with these results our only option is to take your breast the fact you’ve had so many growths and so quickly means we need to jump on this. Prior to any of this though I think our best option is a PET Scan to ensure it is a reoccurrence of your breast cancer and not something that has spread elsewhere”. I then had to wipe the tears from my face, pull up my big girl pants and walk out of that office with a big smile on my face acting like nothing had happened. It wasn’t until later when Brett got home that I could be a big sook! I just couldn’t comprehend we were travelling back down this path, again! Then it was time to work out how we tell our nearest and dearest again. Last time was so horrible and was fuelled by so much alcohol and crying. I wasn’t sure I could do that all over again. So we’ve had a few conversations, as I was having so many anxiety and panic attacks that I had to let some in to what I was feeling.  Then I figured the only other way was to update my blog which advises everyone, without me having to have those difficult conversations over and over again. I know it may not seem personal enough, and unfair that you are finding out this way, it would be great if you could just be included in on the Dr’s conversation, they handle it so much better. I hope you can respect and understand why I have chosen to share this part of my journey on my blog.

It’s been a week since my 2nd diagnosis and a hard week to take in.  But this week is all about only positive thoughts for a positive outcome of my PET Scan. Then taking each day as it is presented from there!

To be continued……….


Shelley Scott
July 2, 2019 at 5:47 pm

My thoughts are with you Cemon. You can do this.

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