A little housekeeping for those new to this blog. It started years ago when our kids were little to share their growing years with family and friends; this is still its basic purpose. Then my husband got sick, and it became a platform to share his treatment and recovery. Now it is where we share our stories as we navigate life without Brendan in it.

A book about love Category: is where I add posts, memories – and diarised accounts of our life together. It covers our story from when Bren and I met, married and had our twins to when he died. Starting at one, it doesn’t follow a chronological timeline. One day this category will be a complete story for my children to treasure. As they only know small parts of the big story. I add to this category inconsistently as I work through our old blogs and diaries to bring them together in one place.

Kalico Category: is about me, now, happily middle-aged and grateful to be here. I will also chronicle my new venture; creating and publishing books I want to read – this is a new category. I hope to have time to post here consistently.

CallieMM Category: this is usually a monthly update. I post more reliably in this category as my family and friends not living close by still like to check-in with us. It remains a public blog as I know people have walked, are walking, or will walk similar paths to mine. It has always helped me to know someone has gone before me and is still moving forward. I want to be that someone for others.

I now know the pain of loss can’t kill me. But living with it will always be a work in progress.

twenty two follows…

some names (people and places have been changed)

Thursday, September 4, 2014 – treatment Review

It’s spring, yet as the alarm wakes us up at 6 am to head down to the city, it feels more like the middle of winter. I want to pull the covers around me and dream about the brown suede heels with the mesh centre strap I was just about to buy from my sister Sue!

This week has felt disorganised. I can’t see the floor in the kid’s playroom, and Brendan and my bedroom is not much better. The whole house is a minefield. I had forgotten to book our accommodation; luckily, when we rang yesterday, they could squeeze us in. We didn’t allow for the fact that the Roosters and Rabbitohs had a game on. Their fans had all but booked out our stay of choice.

I showered, warmed up, had breakfast, hugged the kids, thanked my sister, and we were almost out the door on time until I realised that I couldn’t find either my driving glasses [the ones I need to see] or the Navman [the one I need so I don’t get lost]. We found them in the “sick bucket” half an hour later. The bucket would typically have been coming with us, except that Bren is not having Chemo this time, so it was still in the cupboard, glasses and Navman inside, where they were packed away after our last trip!

Off we go, neither of us very happy, but we’re on the road.

Bren is still not feeling fabulous; he hasn’t bounced back as well from the Chemo this time and is easily exhausted. We get into the city by 11:30 am; by the time we park and get to where we need to be for the MRI, we have 10 minutes to spare. An hour or so later, it’s back over to ROCC for the CT scan, and then another hour later, we’re right to go. No walk down to Parrment road or up to Prince Street today, we go straight back to our room, and Bren sleeps for the rest of the arvo, which is a good thing as Friday is also going to be busy.

Friday 5th September

It is still damp and miserable this morning, and I am breakfasting alone as Bren is nil by mouth. The Ibis is a popular pull-up stop for truckies, and there are two big burley blokes in having breakfast too. The two truckies, the day manager and me, are a funny mix. We were all at different tables with the manager behind the desk, enjoying one conversation. I liked that; it was an excellent way to start the day. For me, anyway, not for Bren; he was probably hungry.

We got to Princeton State Hospital (PSH) at 10 am; I left Bren for his PET Scan and returned to the ROCC lounge to fill in the next few hours. After quickly checking messages on one of the computers supplied for patients and families, I lay down on the oversized beanbag to read for a bit before giving myself a reiki treatment and napping.

Just after noon, I met Bren, and we went upstairs for the treatment review. There was good news and bad news. The good news is that the Chemo has done what it was supposed to and stopped all present tumours from growing or spreading. There is no evidence of any others forming. The bad news was Dr Brach was sick, and the MRI and PET scan reports were not ready for the meeting. These were all things out of everyone’s control, so Dr V, with his clinical nursing consultant Krista and Dr Brach’s assistant Sandra, filled us in with what they could.

September 15 is the scheduled operation date but it is subject to change. All going well; he will be in on Monday and out on Friday. Then approximately two weeks later, he will have more Chemo [not sure how many sessions at this stage], and then last, but not least. Dr Tan will remove two spots from his lungs. And that will be it. All done, no more Chemo, finished, bring on the party!

We left the clinic tired but happy; that was all good news really, I thought. We would have liked to speak with Dr Brach, though. The review was incomplete not having him there, but doctors also get sick. We may have to make another trip down to see him this week. The results, however, were what we were hoping for and what we had expected. By the time we returned to the car, it was 2:30 pm. Old Bar, here we come, messy or not, there’s no place like home. We had an operation to prepare for.

Step 2: tumour removal.

Monday, September 15, came around quickly; this is the big one, the week we have been looking forward to with just a little trepidation. Yep! It’s time for the tumour to come out – hallelujah!

Bren could be at pre-admittance at 2 pm, so it wasn’t as early a start as usual. We will be away from our kids longer than ever, and Tyz was brave, defiantly holding onto the tears welling up in her eyes. Bades had already wrapped his arms around me and buried his face in my chest, his now broader shoulders moving up and down as he sobbed quietly. It’s not long until we are all in tears as final goodbyes are said. Bren hugs and consoles the kids and then turns to his Mum, whose face is pale with worry as she squeezes her boy tight. This is hard!

As we drive out of Old Bar, Brendan looks at me and says, “lucky you didn’t get on Facebook this morning!” I ask why, and he says, “Sue put up a special message from Tyz and Bades. If you saw it, you’d still be crying.” He didn’t elaborate any further. I was driving, so couldn’t look.

I didn’t know this message was among the first of many to flood our Facebook profile over the next few days! Brendan didn’t either, until later that night. At that stage, he thought a couple of friends had posted messages of support. He didn’t realise #teambrendanm had become a tidal wave of support and positivity.

Travelling south, about an hour and a half before the city on the F3, we saw a #teambrendanm poster hanging from the Kalmers Road overpass, put there by our niece Tori and her brave boyfriend, Brad! I cried, not ideal when driving on the freeway. It still hadn’t clicked for me that something extraordinary had been unfolding all day, as this was only the second message I was aware of. And Yes!! You all knew because you were all a part of it!

When organising to be away for the week of the op, our Mums and my two sisters asked me if I thought I’d need some support on the day of Brendan’s surgery, and I confidently said, ” NO… I’ll be fine.” I meant it. I was pretty sure I had it all in hand.

Then we had the 3-hour pre-admittance that followed our 5-hour trip, and we were both bone weary. After sitting down with the nurse and reviewing the operation, we discovered that Brendan would be losing his whole knee and 20 cm of his femur, not just the top of the knee and a portion of the femur as we thought. Blood collection was after the initial consultation; then, he sat separately with the occupational therapist and the physiotherapist, with me beside him. Back in with the nurse half an hour later, I felt a little overwhelmed and physically ill at the thought of what Brendan would be undergoing the following day. It didn’t help that everyone we spoke to looked at us wide-eyed and said, “Wow… you’re in for a big one!” I can’t imagine how he felt.

After seeing everyone, we sat briefly, waiting on some paperwork. I started to fan myself with a pamphlet about knee reconstruction, looked at Brendan and said, “I feel quite faint” I was serious! He looked at me and asked if I would be OK tomorrow, and I assured him. Yes, I would be, but I had already decided to book a taxi to get us there safely and on time. So as not to worry about parking or driving or anything else other than my husband, who was about to lose more than the tumour, he was also saying goodbye to the knee and a good part of his femur that had served him well his whole life.

#teambrendanm – unconditional love, support and positivity

We had had a big day, and after we grabbed a pizza on Prince Street for dinner, we settled into our room at the Ibis. We had just unpacked when there was a knock at the door. We looked at each other with a “who the bloody hell would that be expression”, and I opened the door to see Adam, the manager, smiling but not saying anything. I said, “hello,” a little confused, and he motioned to his left with his eyes! I was a bit bewildered and thought, “What the heck!!” I had no clue what he wanted! And then my big sister Sue stepped into the doorway; now I was dumbfounded and was like, “WHAT ARE YOU DOING HERE!!” Sue was laughing and tilted her head toward the other side of the door, and my little sister Deb stepped into view, and I lost it, bursting into tears! “We thought you might need us”, was all they said. We did!

I had been texting them to say we had safely made it through the day and back in our room, and they were out in reception having their #teambrendanm photo taken with Adam.

I’m so grateful for my sisters.

Bren and I were about to learn that our Facebook profile had gone into overdrive with messages of love and support from our families, friends, community and even the odd celebrity throughout the day. Thank you, Katie and crew, for kicking off the #teambrendanm phenomenon, and to all of you who jumped on board and ran with it in beautiful, fun and creative ways. You had us laughing, crying and then crying some more. What a fantastic thing you have all done for us.

Brendan spent the few hours before bed the night before his operation with you all, surrounded by your positivity and well wishes. along with his two sisters-in-law and wife, squished on a small double bed in a tiny hotel room. I will never be able to explain what that did for us, but I will say this, 

I have always believed in the power of prayer and positive thought. A single voice is beautiful; a choir is ethereal and a clear request to be heard—# teambreandanm; what an incredible chorus. I am sure it was from your hearts to God’s ears. 

Losing the Tumour – Tues September 16

Today held one purpose; get Bren on the operating table, get that tumour out and get him safely back to bed in one piece. Now that one piece would contain some nice, sizable titanium parts. And my husband would be in one gorgeous, strong, tumour-free piece again.

Before the operation could go ahead, a consent form had to be signed. The doctor on duty was reluctant to let Brendan sign it as neither Dr Brach nor his registrar had been over the details of the operation with us. So the duty doctor sent for the registrar. The registrar quickly reviewed the operation procedure with us, saying, “there is not a choice here, you know”. We knew that there were no second opinions to seek. We were already being treated by the best and had no options to consider. It was have the operation or die. Having the registrar go over the details was merely a formality. The procedure was a no-brainer. Let’s sign and get on with it. Even so, we appreciated the duty doctor’s due diligence, even if the registrar seemed a bit annoyed at having to speak with us.

Now it was time to put the gown on and wait for the orderly to whisk him away, and it was in those last few quiet moments I watched my husband prepare for what was ahead, and I have never seen anything more inspirational.

I said, “put your game face on, Babe”, but he was already one step ahead.

He looked solid and fierce with his feet planted firmly on the floor, shoulders square, elbows resting on his knees, and his gaze set intently on the floor. Someone not to be messed with. He then went through systematic motions with his hands, rubbing them together one way and then the other. I knew he was going through his tactics, psyching himself up. I’d seen him do similar many times pre-race with triathlon, but never had his life depended on it.

It was a privilege to witness his strength and determination.

It wasn’t lost on me that this wasn’t just a tumour removal and knee and femour reconstruction. It was also a cancer cleanup. Cancer cells were sneaky. It was vitally important to contain them within the tumour during the removal, without any cells escaping into Bren’s bone or tissue. My heart was thumping so hard I’m sure if anyone looked closely enough, they would see it.

My husband was the epitome of grace under pressure—my sister Deb’s words, not mine.

The operation went well, and Sue and I cheered when Bren was wheeled back into his room. He was still groggy but lucid, making jokes and smiling. [Deb had to make a quick trip further down the coast and was back to see him soon after he was brought back to his room] The nurse let us know that Dr Brach was pleased and had said the operation had gone beautifully.

Seven days later, Bren walked out of the hospital on crutches, in pain, but he did it. His nurses, physio, ward cleaner and catering were happy for him but sad to say goodbye. He was an exceptional patient, and they all agreed. We thought they were outstanding too. It was all very mutual.

Thank you, #teambrendanm, for being there every step of the way. And to my sisters for being in the city with us 🙂

Saturday, September 27

Dr V, Brendan’s oncologist, phoned yesterday. Pathology on the tumour has shown that it was 50 to 60 % dead on removal, indicating that chemotherapy treatment has had a generally good effect, and the team is happy.  But it could have been better; perfect would have been 100%. 

So Bren’s done the swim; he’s off the bike but still has the marathon to run. It’s daunting, but he can smash it out just like the other disciplines.

Another round of Chemo will begin. The next plan will start on October 7. Bren will be an inpatient for three days every three weeks for nine weeks. I am sure this is because he has just undergone major surgery and will be recuperating when the first chemo session progresses. An inpatient stay is the best course of action for this next step in his recovery.

The finish line is in view for Bren, but we have a few more walks down Prince Street Yet!