Claytons Retirement! The retirement you have when you aren't really retired!

So January 19th, I handed back to the lovely Rosie, my keys, told my boss that I wasn't vacuuming the carpet any more and finished up work. My watch battery died, I haven't bothered fixing it. Once upon a time, it drove me NUTS if I didn't know exactly what time it was. Now, my phone lets me know when my appointments are due... anything after that, is not really important. Time can really be irrelevant.  I get to see a psychologist now, (many would say I should have been seeing one years ago) and we are working on remembering to live in the moment and taking time to really focus on what is happening around me. Right now all I focus on is when is it going to bloody rain! All I can smell is bloody dust.

So how are we doing? Well, the initial shock of being told that you're terminal, is wearing off. I am starting to be able to stand back and start to look at things objectively. I told my psychologist, that I'm not in denial, I'm in refusal :)  I refuse to accept their time frame. It's just a number that they've come up with and I'm not willing to accept that number. I am a strong believe in the power of the mind. I'm a strong believer that I will be here longer than what they are predicting. The family is also coming to terms with the shock, and they have embraced as I have, the power of the positive mind. I am putting some things in place so that I can deal with that, and then stick it in a mental box somewhere, and get on with the business of living life. While watching "I'm a Celebrity, Get me Out of Here" I heard Lisa Curry say that she tells people, life is about living not existing, so we are going to be living as much as I possibly can over the next 12 months while my body sorts it's shit out. I have a lot of wonderful people and experts in my corner and I'm so grateful for their positivity.

The beauty about being given a terminal diagnosis, is that I can actually access my life insurance. So we know that no matter the outcome, financially, we're okay. And then I actually get to have a win over the insurance companies! The crap part about being given a terminal diagnosis is bloody paperwork!!! Man I think I've filled out reams and reams of paperwork. I have to mention though, our insurance company, and the staff at the Cancer Clinic here, are just amazing and constantly checking on us, organising stuff for us so we don't have to, and just bloody incredible people.

I start my second dose of chemo tablets tomorrow, after my catch up with my lovely oncologist yesterday. He was happy with my blood work, a little anaemia, but that's easily sorted with a diet modification. I've been very lucky that I've had minimal side effect from this chemo regime. Fatigue is the biggest thing, loss of appetite, some nausea, and I'm often asleep in the afternoon. But I keep my hair!!!! On a positive note, I have noticed reduced pain in a couple of areas that were flagged as new cancer areas in my scan in January. However, I now have Inflammatory Breast Cancer in the original diseased breast, and aside from back, pelvis hip and leg pain, the breast is the biggest issue for me. For any ladies out there who have had mastitis from breast feeding, my whole breast is like one big red hot swollen mess like mastitis is. I get pain in it like someone poking a hot needle in and out. The breast is hard and honestly looks like a really dodgy breast implant. But I'm still hopeful that after another chemo dose we might see some improvement there. It does cause me a lot of discomfort, and sleep difficulties.

Some people have asked, how long I'm staying on this chemo tablet regime (which is 2 weeks on and 1 week off) Well the official answer to that is simple. I'm on meds till they stop working. It's as simple as that. However, I have had news that I am being accepted into a trial in Brisbane of all places. We were prepared to pretty much pack up and go anywhere, but lo and behold, it will be close to home. There are some catches though. Firstly, I have to get worse before I start the trial. They have to see progression of the disease. I'm having my next full body scans in about 5 weeks or so, and to be honest, Rick and I have said we won't be surprised if there is further progression of the disease from the recent ones just done. Remember this is a very very fast moving aggressive cancer. I went from cancer free to cancer spread through the skeletal system in 9 weeks.  But we will wait and see. Also, this is a blind trial. That means I may get the new trial drug or I will get the current standard protocol for chemotherapy for my current situation. I believe it was explained to me, that if the disease continues to progress, and it's determined I'm not getting the new drug, then I go straight onto it. So either way, they cover it.

So if you are checking on me with any of my friends and family, and they say, "she's fine" don't be shocked, because I am okay and they're all with me, as I know you all are, on the big positivity train. The pity train has left the station.... I decided not to get on board.

I May Have Stumbled, But I Will NOT Fall!

So, two days ago, I should have been blogging that it was 12 months to the day, that I was originally diagnosed with my triple negative breast cancer. 2 days ago I should have been blogging that I am back at work, getting along with healing and taking back control of our lives. But cancer is a bitch, and it has this habit of reminding us that just when we think we are back in control, it taps us on the shoulder and says to us, "I'm not finished with you just yet"

Let's go back to a few weeks ago. I had my check up appointment with my chemo oncologist on December 22nd. We discussed some weird symptoms I've been having, odd pains in the legs, and thighs, a bit of muscle weakness in the lower left calf. It was really nothing significant and we couldn't really put a label on any of it, so we put it down to left over chemo crap, and radiation crap and just my body trying to get back to normal. He asked if I needed pain relief for it, was it persistent, as this is what he told me previously I needed to watch for, and I responded no, it was more annoying than anything. So then we proceeded to the physical exam, checked the boobs, they were all good. A little thickening that was to be expected from the radiation therapy etc etc etc. Then he moved on to feeling both sides of my neck above the collarbone, where the original cancer spread to on the right hand side. He kept coming back to this one sore spot on the left of my neck and I asked what the heck he was pushing because it was sore. He remarked that there was a very small lump there that wasn't there before. He wasn't overly concerned, that was the same side of the port a cath, and it could easily be explained away as a slightly pissed off node, from the port a cath, or a slight virus I was unaware of etc etc. But because he found it, he said it was important he have it examined by ultrasound and fine needle aspiration if necessary.... Then he said those dreaded words.... "It would be very unusual for the cancer to have spread there"  Well bloody hell there was that word again. Unusual. 

Given it was so close to Christmas, Rick and I decided to sit on that bit of info. No need to worry the family about something that wasn't probably going to be anything anyway, and we'd wait till we had the results. The thing you have to love about the Christmas New Year period is that it is bloody hard to get anything done in a hurry. So we waited and I got in for the procedure on Wednesday 28th December. The people at St Stephens were just so lovely and the doctor also reiterated the oncologist's words, that it was probably nothing to worry about as the nodes were so tiny, only 5mm I think from memory. 

That night, the breast that had the cancer in originally reacted with swelling, discomfort, a rash underneath and for all intents and purposes, I believed it was cellulitis which is an infection that is just under the skin, and can happen in patients who have had radiotherapy. So I was partially relieved figuring that this was indeed the cause of the node to enlarge.

But me being me, and having recently picked up the keys for work in preparation of my return to my lovely job and patients, I decided on New Year's Eve, I wanted to confirm that this was nothing and I could start 2017 as I'd planned. With no worries and a positive outlook. 

Well, didn't that turn to shit.

The biopsy showed that the nodes did in fact, contain cancer cells that were triple negative breast cancer.  Rick and I were stunned.  Again, I've decided that no good news happens on a Friday. So I had to break it to my boss, and my family, that here we go again. We hoped it was localised, and we hoped again it would be a small setback, but we needed to go through the usual tests again to determine this.

Enter my beautiful and wonderful McGrath Breast Care Nurse Megan. On her first day back, she saw my results, and by lunchtime I had an appointment for a full body CT scan on the Tuesday (Monday being a holiday) and Wednesday a bone scan.

Thursday, we had the results. It was not what we had hoped. The good news was that all my organs are clear of cancer. This is a big plus. The down side is that in 9 weeks since my previous clear scans, this bastard of a disease has gotten into my bones. Basically from neck to knees including spine, there are moderate deposits of cancer.

So what does this mean and where to from here. Well, the crappy side is that we are no longer looking at a cure, we are looking at prolonging my life. This was not news to us, as it was made very clear in the early days of my first treatments, that if this cancer came back, this was the deal. We met with my new oncologist yesterday and he gave us the run down of my new treatment that starts tomorrow, instead of the horrible chemo infusions, I will be on tablets on a 21 day cycle. These will be a little kinder to my system, but the same protocol must be maintained and no visitors that are unwell, or have been around people who have been unwell. 

The news that has rocked us is the timeframe he has given me. With the current treatment regime, and without acceptance into a clinical trial, I can expect another 18 months. If we can get me into a clinical trial, we can hope for that to increase by years.  The reason for the short time frame is simply this. This cancer is so damned aggressive and has spread so damned fast. I was clear October 26th with no sign of cancer, only for that to change completely by December 30th. 

Rick and I are definitely not giving into this or accepting this timeline. We have quite a few people working very hard to find a clinical trial to get me into. These trials have been having great success and I intend to be one of those success stories. The downside probably would be that we may have to move away for the duration of the trial. But that is probably the least of our worries. There's this amazing thing called the internet for keeping in touch with people. 

I have decided to resign from work. Again due to my system being compromised and also to spend quality time with my wonderful family and friends.

I cannot speak highly enough of the support shown to us by the Cancer Clinic here. They are busy organising lots of things to make our life easier offering more counselling and helping me access my superannuation to help us out.

Because of this type of news, I will ask that rather than contact my family with questions, that they simply wont be able to explain anymore than what I have told you all in here, just check in on here, or on my facebook to keep up to date with what's happening. 

Thank you for your continued love and support.

Donna.

P.S. The word "unusual" has been banned from my hospital file!!!!!

P.P.S.  I WONT LOSE MY HAIR!!!!!!!!! Go the curls!!!!!