Ummmm Is It Autumn Yet???

Okay, no rain for months, then we get 2 measly mls, and its still not looking for rain. Come on Mother Nature, this is not conducive for someone trying to rest and not wake up in a sweat. Poor old air con is going to have a heart attack I think. We put a window aircon in the kitchen, hoping to keep the little cottage cool, and it tries.... but I think it too is waiting for that lovely cool Autumn change.

So it's been awhile since I've updated but who has time for faceybook, when you are busy snoozing lol.

Last week was taken up with getting about 1.1 litres of fluid drained between the lung and the pleural sac so I could breathe. It was only the right lung but over about 2 or so weeks, it was steadily filling up causing me to have problems getting my breath, coughing and so very very tired. May have had a few sooks during the day, but they took them in their stride. The staff at the A & E are just the most amazing and kind people. I started at the hospital Monday late afternoon, did a heap of tests, went home so that I could wait for oncology to see me about the drain the next day, and went back 8.30am Tuesday so that they could sort the fluid issue. We didn't get home till about 8.30 I think. It was such a long day, I was so uncomfortable all day and so exhausted and the staff just went above and beyond to try and make me as comfortable as I could. Unfortunately they were so busy, and no beds, so I was kept in the short stay areas rather than in a hospital bed. I seriously don't know how these guys are able to work. These rooms are so small, and they have to work basically on top of each other. The upgrade to A & E can't happen soon enough.

I ended up agreeing to a wheelchair for any long or strenuous outings. Happy to report I haven't used it in days now. :) The good old stubbornness is rearing it's head again!

Radiation to the T6 and the pelvis started last Thursday and finish this Wednesday in time for my first infusion of Keytruda. I'm hoping that a few treatments and I will feel more my old self. Still have high hopes for Tasmania.

I tire quickly at the moment, so the updates, will probably be short and sweet for a while. Thank you for all you messages etc. They mean the world to Rick, the family, and me xxxx

Donna.

Who Knew Shopping at Coles was Sooooooo Exciting. AKA How Old People celebrate Valentines Day

Last Tuesday was Valentine's Day. It was also the day of my morning MRI for this tumour? they are concerned about on my T6 vertebrae. I had to fast, no biggie, don't eat much these days anyway. I'm sleeping a lot too, so not getting as much liquid down as I'd like. So there we were, hot day,  MRI done with contrast dye (the only type I can tolerate without making them hit all the pretty lights and bells and whistles - anaphylactic reaction and all that... most tiresome stuff).

Well for the first time in ages, I was peckish, and we needed a couple of things from Coles, so I asked if we could go and have a belated brekky morning tea. I actually enjoyed my toasty sammich, even if I only ate half of it. It was a nice outing for these two old lovebirds... until............

So food was good, shopping was good, nek minut, standing at the checkout, I turned to Rick and said to him "I need to sit", so I did, and he came and looked at me and said "Are you going to make it to the car?   -    Me  "Yep"    Actuality - No she did not. Cue delightful swoon into hubby's arms at the base of the escalators while poor hubby juggles trolley and lovely helpers. I hope they weren't busy that day, would have been a hell of a wait. I could just imagine some safety person instructing the passer bys "Move along, Step over, Nothing to see here"

I woke up in the A & E spent the rest of the day in there, and early evening in CDU (Clinical Decision Unit - where they put you if you are only short stay, or they are still deciding what to do with you)

Got to head homeabout 7.30 - 8pm so at least I got a sleep in my own bed. No real reason except overdoing it and low blood pressure. No exciting Valentines Day, no flowers, but I saved him the packaged bikkies they left with a milo :)

Anyhoo, back to the MRI the tumour on T6 is more like a bit of erosion. This is of big concern to them as we don't want chord compression and turn me into a paraplegic. Turns out this was a big concern for the trial drug too. I had a CT because of extra swelling in the neck of the original cancer. This seems to be the result of previous treatment and we are hoping the lymphatic drainage will help this. What it has done, is show progression to the disease, and this is what we were waiting on to fulfill the requirements of the trial. However, when we got down there (after a long drive in the car- so naturally stiff and sorry and in a bit of pain)  after a chat, and physical examination, It was decided that I actually have progressed too far (so too sick) to participate in the drug trial. The problem is this, clinical trials have to be strict with their rules, and one thing I had to consider, was having another biopsy done and that sample would have to be processed in the UK, and that could take 4 - 6 weeks.

The previous chemo tablets I was taking, clearly weren't working as the progression of the disease even surprised the Oncologist. So I don't have 4 - 6 weeks to sit on my hands and wait. Also my right lung is about 2/3 full of shit, so breathing in air con, laying down, just breathing..... can sometimes be a bit restrictive so I am expecting next week to have to trip into the hospital and have some of that liquid drained.

So where do we go from here. Well, I always believe in having plan's b c d in place, and if they run out there are 22 other letters to plan with.

I've still got natural products to help boost my immune system. As we all know, cancer tricks the body into turning off the immune system, so anything that boosts that, has to help. Also, as I previously mentioned, we have cashed in my super and life insurance. It's given us the financial freedom to pay off the house, pay off debts and do what we want for a while. Well, one thing we can do, is instead of participating in the Keytruda Trial, and be restricted by their timelines and guidelines, we can purchase it ourselves. Given it's still in trial stage, it's obviously not on the PBS and therefore, we are awaiting a quote to purchase from the manufacturing company.

Okay, scuse me while I get up on my soapbox here. Why does it take years, generally 4-6, once a breakthrough is made, to get to those who really need it. I understand the ethics of making sure a drug is working... those of us born in the 60's will no doubt remember the situation that arose out of Thalidomide. But here's where I think all life should be lived with a meaning. So let's take those souls in jail, that are guilty without a shadow of a doubt and subject them to these trials, so that their life has had meaning and not wasted, and those of us needing these drugs can get them faster and not having to pay 10's of 1000's of dollars, basically saving our own life or at the very least, gaining a little more time in the world to see and do things I'm not yet finished with yet.  This particular drug could be the difference of me seeing Easter next year, or me seeing Lilly and James graduate high school.


I had a different chemo infusion today... because... you guessed it,
we are waiting again. Waiting on paperwork!

Till next time!!!!!

Donna

P.S. This blog has been all over the place sorry, blame the steroids
So here's a wrap.

1. I had a new ct because of problems with my neck on the original side of the cancer
2. Because it looked like I had a tumour on one of the vertebrae between the shoulder blades I had to have an MRI
3. After MRI, morning tea and grocery shopping I decided I needed a bex and a good lie down in A & E at the hospital for the rest of the day (HUGE thanks to centre management, other staff, the off duty paramedic and everyone who came to help my husband till the ambulance came
4. I got accepted into a clinical trial... sort of....went to Brisbane to discuss...... I'm too sick now and wont handle their timelines probably. 
5. Sorted that out with plan e and purchasing keytuda ourselves. 
6. First, "new" chemo today back to the usual infusion style, till the Keytruda arrives.
7. "How are you doing really?" I get tired ridiculously fast, if it seems I haven't been myself of late, well we've had dark days, but generally we have, I hope, the worst (meaning paperwork lol) behind us. I feel we have a ducks in a row now, baskets spread out so we aren't placing all hope in one basket. And another thing worrying people is pain. Am I in a lot of pain? I have days that aren't great, but the good thing is, I manage my pain quite okay at this stage. I take panadol osteo 3 times a day, and lyrica morning and night. Warm showers. warm packs and cold packs and massage definitely help. So really, I'm doing okay...... at the pace of a startled snail!

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!!!!!