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.
Monday, 6 March 2017
Friday, 24 February 2017
Who Knew Shopping at Coles was Sooooooo Exciting. AKA How Old People celebrate Valentines Day

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.

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.
- I had a new ct because of problems with my neck on the original side of the cancer
- Because it looked like I had a tumour on one of the vertebrae between the shoulder blades I had to have an MRI
- 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
- 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.
- Sorted that out with plan e and purchasing keytuda ourselves.
- First, "new" chemo today back to the usual infusion style, till the Keytruda arrives.
- "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!

Tuesday, 31 January 2017
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.
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.
Tuesday, 10 January 2017
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!!!!!
Friday, 23 December 2016
It's Christmas Eve Eve!!!!
Twas the morning before the night before the night before Christmas, and all through the house, not a creature was stirring... except Donna who was up at Stupid O'clock, because she's now in some sort of chemo induced menopause and apparently sleeping isn't required, and hot flashes make Summer just that more delightful .... sigh. But it's Christmas Eve Eve!!! One of my most favourite times of year. Kids are driving the parents NUTS because the smell of wrapping paper and tinsel is so very very close, parents are losing their you know what, because despite all that planning, Mum just realised that she forgot the fresh cream for the pav, Dad's just realised that he didn't stash extra AA batteries in the shed for he kid's presents like he thought, Grandma and Grandad need to get just one more present for their precious Grandbabies, and everyone is nuts because... well because we just tend to drive ourselves that direction because so much emphasis is put on just one day.
This year for me, my fruit is still in a rum stupour in the old tupperware lettuce holder waiting me to get my butt into gear and turn it into Mrs Fanning's Light Fruitcake (or Aunty Al's dark fruitcake, depending on what ingredients I remembered to buy and stick in the pantry) - side note, Mrs Fanning was the neighbour of my Nan in Biggenden. I don't remember much about her. I do remember Mrs Fanning's fruitcake recipe! I am so not organised, but at the same time, I'm a bit "well, it'll all happen on the day" Note to self, I think I'm going to run out of dog biscuits. Pick some up after the meeting today.
So, where am I at today? Well, I'm a bit all over the place truthfully. This time last year, our grandson was put back into hospital, less than a week old. He'd tested positive to a virus that had to be checked and monitored. We'd decided not to share that with the extended family till we had more information and knew he was okay. Mr Jimmy Giggle turned one last week, and is powering ahead. This time last year, I found a lump in my breast. I decided not to share that with the family till we had more information, and I knew that most times, lumps in the breast were nothing more than cysts or fibrous tissue. That worked out well. But the battle was fought, the journey was travelled and now, I'm getting ready to head back to work.
Yesterday was my checkup with Dr Mitra (my chemo oncologist) and final specialist appointment for 2016 YAY ME! We discussed a variety of symptoms I've been experiencing, and like I've done in the past, I baffled him. Nothing major, just a few annoying symptoms that can't really be attributed to anything. So we're just going with me being weird. If you think about what my body has endured, and the cocktails of chemicals and that the human body is so individual, it's normal that each of us recover in various ways. But at the end of the day, he was relatively happy and we discussed the next part which is waiting. Triple Negative breast cancer has a higher recurrence in the first 2 - 3 years. So I have to be vigilant for symptoms. Watch if anything needs pain relief persistently. Be vigilant with my health and my weight. (as of yesterday I'm now 68.3 kilos - about 10 kilos down from the start of this lovely adventure) Goal weight will be 65 kilos. So nearly there. Down side is no work clothes fit. So I've been spotted at nearly every op shop between Hervey Bay and Kenilworth. I love the op shop at Imbil. It's so well laid out and clean. The one at Kenilworth is... well an adventure itself but man did I score myself a bargain there. A gorgeous dress by an aussie designed for $5!!!! I've heard there is a particularly good one in Maryborough. I'll be heading there shortly!
So how does one stop one's brain from exploding while we tick off the months for the next few years. Well that's simple really, One puts her hand up to help organise a 2-3 day event for the Fraser Coast with a budget of about $400 000. (remind me that I used the word simple when we're a week out and I'm pulling my hair out trying to co ordinate 100 trade stall holders, demonstrators, horses, cattle, donkeys, alpacas, goats, kids, bull riders, cowboys and their utes, muso's and the general public).
What have I gotten myself into?? Glad you asked :) My friend Natasha had an idea to do an equestrian expo on the Fraser Coast. I've had a hankering for a decent country music concert on the Fraser Coast. We had a few coffees about it, and we've attended a few equestrian expos, and we decided to broaden it to what has become the Coastal Country Lifestyle Muster. (Name shortened to CCLM or something else. We admit it's a bit of a mouthful) So basically what it is, is showcasing our gorgeous Fraser Coast lifestyle of acreage living. Hobby farming, growing your own food, eating your own food, learning to be kind to the flora and soil we are trying to grow our food bowls in and generally being self sufficient. Just for kicks, and to give all members of the family something to enjoy, we're kicking off with a bull riding rodeo on the Friday night. Then Saturday it's all systems go with displays on gardening, equestrian displays, lots and lots of trade stalls covering all areas of the lifestyle we are showcasing, kids activities including their own little concert and then a family concert into the afternoon. There'll also be a good old fashioned Ute Muster for the boys at the same time. Everyone one loves a good bushy ute! Sunday (probably known as hangover day) will continue on with displays, but a more laid back feel, wandering buskers, bush poets and a talent contest, all wrapped up by early afternoon. Are you exhausted yet??? I am hah!. We've had good feedback from the entities in the area that deal with these types of events, and had a meeting with the mayor this week who is very excited and offering their support and backing for our event. Our mentor who runs the showgrounds said at the last meeting that she gets goosebumps when she thinks about what we have planned. My response was that I have nightmares LOL. So why am I doing this. Because I love our area, I believe we need to get back to our Nan's backyards of chooks veggies and the old lemon tree. (though I remember Nan's mulberry tree, not so much the lemon one) and I believe we NEED to get our kids back to this lifestyle and away from computers and virtual reality games. They need to feel dirt, they need to fall over and scrape their knees and we ALL need to get back to basics and learn to feed ourselves. And I NEED to have a focus and a goal that takes up a good portion of my brain. I will not sit and worry for the next 2 - 3 years that things will go pear shaped. No doubt I will have the odd moment. But I need to live, not wait. So that's what I will do.
Now, I need to go find the rum. That Christmas Cake will not cook itself.
Happy Christmas everyone xxx
P.S. Until the website is up and running - check out CCLM on facebook - https://www.facebook.com/CCLifestylemuster/
Monday, 7 November 2016
Cancer You Picked the WRONG Chick!
Well with only 7 weeks left of 2016, Rick and I can finally breath, finally plan and finally enjoy what's left of the year. Why? Because I am officially done!! No more surgeries, no more treatment, I am done, done done.
Our visit to my lovely surgeon today, heralded the best news ever. I went in expecting to be told, that those pesky nodes in the armpit that showed up in the last two scans, would be removed. But no, after the team meeting with the local specialists, and a phone call to one spectacular Professor in Brisbane, the decision has been made that I am to be treated as a person who no longer has cancer in her body, and I move to the next phase of watching. I will be seeing my surgeon and my oncologist every 6 months, which actually means I'll see someone every three months. At each visit I will have a thorough examination, I will have mammograms and ultrasounds every 6 months with the occasional CT scan thrown into the mix. They and I will be vigilant of any symptoms and my health. My goal is to drop another 5 kilos to get me to about 66kg and increase my exercise. My diet is pretty good so I'm heading in the right direction.
The word "cure" today was used, but I'm not yet comfortable to hear or accept that yet. I know that my particular cancer has a higher risk than other breast cancers, or recurrence in the first 3 years. So I'm going to go with remission for now. Having said that, I will do my utmost, to put this now behind me. I will spend the next 8 weeks working on improving my health and healing from the chemo and radiation and getting ready to get back to work in January.
This year has been long and hard for our family, but there are also families for whom it's been just as difficult or traumatic and worse. We are lucky, we can put this behind us and move forward. Others have not been so fortunate, and I am so grateful for the second chance I've been given.
We've also received so much love and support from so many people. Lots of lovely offers have been made, and while most haven't been taken up, just the gesture meant the world to us. Rick and I are so not used to being people in need of help, we are usually ones to help out. So the role reversal has been challenging, and humbling. But the love shown to us, and our families, has been overwhelming and just beautiful and we thank you from the bottom of our hearts.
I will still pop in here to say Hi and keep you all up to date after each visit. Thank you for following my "adventure" and thank you for the love xxx
Thursday, 3 November 2016
Are We There Yet???
Well I had hoped to be able to let you all know by now, that all treatment is finished, and now I'm just taking some time to heal my body, find my new normal (pfffft as if I'll ever be normal) and find some real enjoyment in the last part of this year before I return to work in January. Well as we know, this road is never straight let alone straight forward. So here's an update thus far.
My last was during the last week of radiation therapy. That was fun, the dial was turned up and I was given what they call a "boost" week. So the highest radiation they can give the body to the neck tumour site, the axilla (remember I hadn't had the surgery in that area that's usually done, due to it spreading to the neck and therefore being rushed into chemo treatment) and to the tumour site to the neck. My fatigue increased, and I experienced some breakdown in the skin to the neck and the top of the breast area, but I really feel I got off lightly compared to many who go through this. I also had my fabulous mask to wear to lock me into place for the treatment to the neck. Thankfully I discovered I wasn't too claustrophobic and handled that okay as well.

Following the radiation, I got to put my handprint on the radiation clinic wall to signify the end of treatment. My mum had treatment there 12 months ago for skin cancer, and I got to squeeze my little hand in with hers. That meant a lot to me.
The next week I had my bone scan and full body CT as well, and the results came back really good with no real sign of cancer left. So we're all pretty happy with that news. But as always there's always a "but" I am waiting on a decision from the multiple disciplinary team as to whether I have more surgery to the armpit to remove the nodes that showed up as enlarged in my scan just prior to starting radiation treatment.
It's been explained to me this way. The normal process for my breast cancer treatment, following the discovery of the cancer in the sentinel nodes (remember they are the fist line of defence and if the cancer wasn't there, it wasn't further in the body) was for mastectomy and full clearance of the nodes in the armpit, then chemo and radiation to mop up any leftover cancer cells. But because I'm so freaking special, and the cancer was found in the node in the neck, I had to have chemo to stop the spread of the disease. So now they need to go back and consider whether the correct procedure will be to watch and observe these small nodes in my armpit, or is it safer to just remove them, and that way the can look at them and determine if there are any cancer cells in them.
I was never happy with the idea of this, I'd been warned of the high risk of lymphedema (I've added a link here so you can read all about it, just click on the link). However my surgeon feels that with the new way of removal etc, my risk will be minimal, as long as I'm careful. Either way, if they decide that's the best course of action for me, and that means the risk of recurrence is reduced, then I'll take it thanks.
I have an appointment to see him again on Monday. By then they'll have had their specialists team meeting and he'll have spoken with Professor Ung in Brisbane who has been involved in my case all the way through. If it's surgery, I'm classed category one which is surgery within 30 days, so I am hoping to be still on track to return to work in January :) YAY Happy Days!!
In the meantime, I have had other lovely days to celebrate. Our beautiful Lilly bug turned one the day I finished treatment. These grandbabies of ours have given us such light to an otherwise crappy year. I know I complained long and loud when the kids decided that they'd both have babies together and I'd become a nana twice 8 weeks apart, but the cuddles and kisses (and videos when they or I have been too unwell to be round them) has kept me going this year.
Also we had our Girls Night In and I got to talk to all the lovely ladies there about my journey. Firstly let me apologise for talking so long. But many of you know me, my family and my friends, and I wanted to to really grasp this journey. We've all attended these nights, and listened to these statistics and talks for years now, yet I was completely blindsided by this. I wanted it to be personal so that you would really take in the information that could help you or your friend who might find themselves walking this walk. I promise to anyone else if I get to speak to your group, I will keep it much shorter lol.
The great news is that the weekend raised just over $1000 so great job girls!!!
So that's it for now, stay tuned folks and as soon as I get more news on Monday, I'll let you all know.
Thank you for all the love and support shown to Rick, Kiah Michael and me, my family and my friends. I'm hoping that we really are nearly at the end of this treatment and all that's to happen is wait out the next 3 years and be cancer free. xxx
Subscribe to:
Posts (Atom)