calliemm

Love, Unbroken.

 April 6, 2015  

I was sitting with Sue and Mike in the waiting room, curled up on one of the well-worn black couches, while Bren was having his observations done when the lift opened. My niece Kahli and her partner Clayton got out.    

I walk toward them, and by the time I reached her, Kahli and I (and Sue) were in tears. Kahli (KJ) and Clay hugged Sue and Mike, and then I put my arm around KJ’s waist and walked her and Clay down to Uncle Bren’s Room. We reached his bed as the nurse was leaving. KJ threw her arms around her uncle’s neck as they cried and said, “Love you.” Over the top of one and other. It was just what he needed. After a quick catch-up, Clayton and KJ returned to the waiting room. Bren cried again, saying, “These are happy tears. Can you please go and give her another big hug for me and make sure she knows how much it means to me that she came”.   

This scene repeated two more times the next day, first when our nieces Jordon, Tori, and Tori’s boyfriend Brad visited; they made the 6-hour round trip to the city and home again on the same day, and then again when our niece Teagan turned up. Teagz stayed the night with Sue and me as Mike had to go back home and back to work.   

Andy (our brother-in-law) made a surprise visit, too, on Thursday afternoon, between finishing a work event in the city and catching a flight home. I’m sure the smile on Bren’s face when Andy walked in was bigger than I got when I walked into his room for the first time. He was happy to see Andy and couldn’t wait to hear how the kids were. Other friends and family, including Bren’s boss, Nigel, would visit Bren from around the state over the following days. There was even a special delivery of cupcakes from my cousin Russ and his wife Sue, who were living in Germany. Bren enjoyed seeing everyone; he was not worried about them seeing him without his leg, and no one was afraid to see him without it. He was overwhelmed by the love and lengths our family and friends would go to support him. He felt very loved.

April 9, 2015  

Dr. Brach’s registrar was impressed with Bren’s post-op recovery. When he unwrapped the bandages around his stump, he said, “It’s beautiful,” in his lovely, strong Italian accent. I looked at Bren’s stump and the long scar that stitched him back together, holding his hand as he saw it for the first time. Smiling at him, I squeezed his hand and said, “It’s beautiful.”

The pain management team has reduced Bren’s medication slowly from the massive doses he was taking before his operation down to mild pain relief. He has successfully weened down to less than a quarter of the morphine and two Endone tablets a day, as opposed to the six to eight, to whatever he needed before his operation. However, he did have a terrible headache for a couple of days. He mentioned this to Georgia, Dr. V’s registrar, when she was on rounds, saying he may be grinding his teeth in his sleep, as he’s been under a bit of stress lately. Georgia looked at him with a wry smile and said, “Do you think? If you need extra medication for a headache, please ask Brendan. Because that is quite OK.”   

Despite lingering, manageable pain, mild withdrawal symptoms from medication adjustments, and a visit from his old friend, Gommer Pile (inside joke), a strange experience, post-op, has been his phantom leg. Bren and his doctors find it fascinating. I guess, for doctors, like all of us, some things never get old. Although Bren also finds it disorienting. He can still feel his leg there. Initially, it felt bent in the same position it was in before the amputation. Now, it is more out to the side, and he experiences pain in both the phantom foot and knee. When I take him into the bathroom on the rolling shower chair, he flinches as we go through the door because he feels like I’m going to slam his phantom leg into the door jam. I accidentally banged his surviving leg into the wash basin the other day, so he has good reason to be cautious.   

The pain team told him that his phantom leg would eventually be gone, but until then, he may feel like his foot is gradually getting closer to his stump. Is that something he can get used to, even for a short time? I’m not sure I could. Still, the funniest thing I saw this week was when Sue sat next to him so they could get a photo together, and Bren yelled out, “Ouch, you’re on my leg,” and then cracked up; poor Suzie nearly jumped through the roof!   

Getting Home  

Medically, three to four days after the operation, Brendan was physically well enough to go home, but being the Easter long weekend, he had no access to Physio, so he had to stay and recuperate until they could see him to ensure he was confident getting around on crutches and was ready to leave hospital. This extra time was good because he wasn’t quite ready to stand alone mentally. Bren still couldn’t face the walking frame that stood waiting to aid his practice of standing and balancing on one leg. He was afraid of not only falling but taking the first step into what would be his new life, as an above-the-knee amputee. He was coming to terms with leaving his old self behind.  

We are missing the kids terribly, and I know Bren is a little anxious about how they will go seeing him without his leg. After a little while, I know they’ll see how much better he is and realise he can do more with them. For the six weeks leading up to his operation, he had been mostly sofa or bed-bound. So, after a good hug and a little time, they will be fine. We can’t wait to get home to them.  

April 11, 2015  

Today, Bren asked the doctor what boxes he had to tick to go home. She told him he would have to show the physio he could confidently get around on his own. He had been practising, and by that afternoon, he was discharged. My husband was determined to walk out of the hospital by himself, on his crutches and not in a wheelchair. Nine days after his operation, he did. I dragged his bag behind me, taking photos at the same time, proving I could multitask. As we walked through the double-glazed hospital doors, I passed Bren and took a picture of him leaving the hospital. I moved toward the car, turning back because I couldn’t hear him behind me to see him taking in his reflection in its entirety in the double-height glass windows. I hadn’t stopped to think I was used to seeing Bren’s new frame, but today, after only seeing himself from the waist up in the mirror or looking at himself from the waist down since the amputation, he was seeing himself, head to toe, in the reflection for the first time. I asked if he was OK; Bren took a few deep breaths and a last look and then walked toward the car. “That was mind-blowing,” was all he said.   

12 April 2015  

After a good night’s sleep finally snuggled together in my hotel room, near the hospital, we hit the road. He couldn’t keep the smile off his face as he moved slowly toward the car. I was so grateful to see him pain-free. It was an easy drive home. We took our time, stopping off to have a leisurely lunch. The kids wouldn’t be home until late, as they were at a Saunders family wedding with Deb and Andy, giving us time to get home and feel settled before seeing them.  

We reached the Taree Exit in the late afternoon, and as we took the Old Bar exit, we saw the first huge #teambrendanm welcome home sign covering the Old Bar Exit Sign, making us teary the rest of the way home. We got to our street, and around the street sign was a kaleidoscope of rainbow-coloured ribbons and balloons with another welcome home sign. We turned into our street, and there were more rainbow balloons on our neighbour’s mailboxes and a huge chalk art welcome home sign on the road in front of our house. The kids in the street had been busy.  

Inside, my sisters and nieces had cleaned the house from head to toe and placed fresh flowers on the kitchen bench and dining table. And the lawns and the outside of the house had been tended to. Thank you, Mike. When we heard Deb and Andy’s van pull into our driveway, I could feel my heart beating through my chest. I walked out to the car to greet them all, and Bren followed me, stopping to lean against the portico beam for extra support.  

There was a great clatter of doors opening and excited chatter about the wedding as the kids all got out of the van, and then Tyra and Baden saw their dad and ran to him, yelling, “Dad, Daddy!” as they wrapped themselves around him. Of course, there were tears.  

We all went inside, and there were more hugs and tears. It took a long time before Bades could let his dad go, and I got my fair share of hugs, too. Tyz, who seemed to have grown into a young woman in 10 days at the tender age of eleven, gave me a supportive hug and held onto my hand when she saw my tears, and Bades when he was able to prise himself away from his dad, squeezed me like he would never let me go. Lu and Tyler were excited to see Uncle Bren, with Luca sharing some wise words of support, which Bren never shared with me, but from the squeeze he gave her, I could see they were heartfelt. Tyler gave Uncle Bren another hug for good measure; he was Uncle Bren’s little warrior mate. Deb and Andy, who we leaned on a lot throughout Bren’s treatment, hugged us too, as the four of us held back more tears. Everyone was relieved to see for themselves that Bren was OK.  

Chemo would start again next Monday, in the city.  

April 20, 2015  

As Bren prepares for a 3-day chemo infusion, I am having my second cup of coffee in the hospital cafe. I hate watching him sit through the hit-or-miss a vein cannula process, and he would rather me not. He is resisting having a port; he hates the thought of always having it in his chest.  

It’s busy in the cancer clinic cafe today, but that’s the norm. There are too many people taking this cancer ride alongside us, which got me thinking about the things I didn’t know cancer could do, but I wish someone had told me. Here are some of the things I know now. 

Cancer is a family affair. It can and will change your life in many ways; not all will be bad, and you may find some amazing.

You will see darkness and light at unexpected times and in unexpected ways.  

Cancer is the greatest game of hurry up and wait I have ever played.  

You may behave irrationally when you or someone you love has cancer. It can bring out your strengths. It can bring out your weaknesses. It brings out the best in people. It brings out the fear in people. It may bring out the extraordinary in some and the ordinary in others. You will be shown what you need to see.  

Egos are fragile and can come into play at unexpected times, no matter what you do or who you are. Often, those who show their Ego to you probably couldn’t do the job that they do if theirs wasn’t slightly inflated.  

There are as many varied types of cancer and ways to treat it as people living with it. Cancer is not necessarily a death sentence.  

You can choose whether or not to be fearful of cancer.

People can have cancer and still enjoy a healthy sex life, and sometimes, that’s not the case. 

Cancer is a massive inconvenience; well, I knew that, but nobody has ever said it to me. It will change your life without your permission and take you on a roller-coaster ride you were never prepared to go on.  

There is more than one way to skin a cat. The same goes for fighting cancer. I do not know where the skin a cat saying comes from; obviously, it’s not from a cat lover. I hate cancer; hate is a strong word but appropriate.  

Very few people know the right thing to say when they find out you or a loved one has cancer. And that’s OK because there is no right thing to say.  

You will end up with more Tupperware containers in your cupboard than you have room for, and you will feel grateful for every morsel of food that comes with them. You will not remember who gave which container; they rarely return to their rightful owners.  

You can be sure that no matter how others around you behave during your cancer story, they are doing the best they can—just like you. When you are shown the best in others, it will take your breath away. Prepare to be breathless most of the time. 

*** 

Thinking I had timed my coffee break perfectly and had missed the cannula drama, I walked into Bren’s room just after education had finished, and as the 4^th needle stick to get the cannula in was successful. Finally, the cannula was set. Bren looked tired and miserable. And his veins were shot from months of treatment. The chemo infusion was about to start when the treating nurse came back in and put the brakes on because of the high potassium levels in Bren’s blood report. New bloods had to be taken. They found a healthy vein on the 6th needle stick of the day to take blood! The rest of the infusion goes without a hitch when blood work comes back clear. Chemo starts about 3 hours late, but that’s OK as by the end of the day, the poor nurses were still trying desperately to get Bren into a bed upstairs. There was no option but to get him admitted, as the infusion was underway and would take three days. They couldn’t send him home. It’s so stressful, no more for us than for the nurses working with us.  

Finally, Bren’s bed was ready, and by 5:30 that afternoon, he was in a comfortable room upstairs.  

Fortunately, his nurse downstairs had ordered his meal in advance, so we both settled in to watch the biggest storm the city had seen in 10 years crack the grey sky open through the hospital’s floor-to-ceiling window.  

It’s now past dinner time, and Bren’s meal hasn’t arrived. His nurse rang the kitchen; they had closed, and his meal had disappeared somewhere between the kitchen and his room. I grabbed my $3 grocery store rain poncho (yes, it was flimsy) and went outside to brave the four blocks to our favourite pizza shop on Prince St to get my husband a pizza for dinner. To say it was a wild night is an understatement; the wind was almost blowing me over, and the rain was sheeting across the street at a sideways angle. It was freezing.  

When I returned to Bren’s room, I was soaked through, but only from the knees down. Who knew a $3 rain poncho would work so well. The pizza box was soggy, the pizza was lukewarm, and water had pooled in the indention of the lid where it had started to cave in. We had just started eating when the pump alarm went off; Bren’s infusion had stopped flowing because his cannula was blocked. Bugger!  

He had to get a new cannula put in. Brendan’s poor veins had had enough. The pain he felt when Dr. Georgia tried to flush the existing cannula in the hope that it wouldn’t need replacing was intense, and it took another two attempts to get a new cannula in; he ended up with seven or eight needle sticks for the day. It felt like more and may have been. As Dr. Georgia watched the nurse guiding the needle into Bren’s pin-pricked arm, she said, “Pizza smells good; who delivered that in this weather?”  

Bren smiled at her cheekily and said sheepishly,  “Cal went and got it.”  

“You walked four blocks in this weather to get him pizza?” She gasped, looking at me wide-eyed.  

“Yes,” I laughed  

“Where’s she hiding her wings, Brendan?” she said, mocking seriousness.  

“Under her coat,” he replied without missing a beat.  

This pair had quite the rapport. No matter how bad his day was, Georgia could get a smile out of him. We really liked her; they always had a fun chat when she was on rounds, which made his day. She really was gorgeous, inside and out.

As Georgia finished checking his chart, she shot us both a smile, returned the chart to the hook at the end of his bed, turned swiftly on her high patent leather court shoes, and click-clacked out the door.  

“Remember when you only ever wore high shoes,” Bren sighed.  

“You mean, before kids?” I replied with a giggle.  

After the nurses and Dr Georgia had left, we finished the cold and soggy pizza and put today down to one of those days. Tomorrow will be better, we said! I think so far, this one has been one of our least favourite treatment days, which says a lot, an annus horribilis. Queen Elizabeth II, I get it!  

It’s just after midnight; I’m journalling about our day when I get an FB message from Bren (I’m staying in a hotel just down the road) to say the bloody cannula is blocked again and has to be changed. He’s had enough.  

Although I’m not a praying person, I have conversations with God, so I guess that counts. As I turn my computer off tonight and hop into bed, I thank God for the care Bren is getting and ask that tomorrow be a better day for my husband. I believe we are here to learn, and there is something to learn from every experience we have, good and bad. Knowing that’s true is the only way I can make sense of what we are going through. So, to finish my conversation tonight, I add, Dear God, the universe, or whoever is guiding this runaway train, if the lesson here is mine, please don’t let me be a slow learner.  

April 25, 2015  

Anzac Day has always been an important tradition in our family. Bren and I never missed a dawn service in all our years together, and this year was no exception. We planned to attend the early morning service, then later watch our kids march with their school. As school leaders, Tyz and Bades would also help lead the local midday Anzac service. 

I wasn’t sure if Bren felt anxious about navigating the walk from the car to the Soldiers Memorial Hall in the dark, on crutches and with one leg — but I was. There was so much to manage: the darkness, uneven ground, the crowds, and this would be his first public appearance in his hometown since the amputation. 

Still, we made it. As the veterans marched past, Bren straightened up over his crutches, fists clenched in quiet respect. The Dawn Service had gone well, one hurdle cleared, but next came the midday event, which would be even bigger. 

Thankfully, my sister Sue and niece Teagz arrived an hour before the midday march to help. I needed it. I wasn’t sure how to support both the kids, who were feeling nervous about speaking, and Bren, who was still weak just days after chemo and quietly carrying the weight of being seen for the first time since his amputation. 

Despite it all, Bren was glad to be there. Our friends and community were genuinely happy to see him out and about and made sure he knew it. But the most unexpected and funniest moment of the day came just before the march began. 

We were standing near the starting point when the cutest little boy, maybe seven or eight, stopped right in front of Bren. Tilting his head and squinting into the sun, he pointed directly at Bren’s missing leg and asked plainly, “What happened there?” 

There was a brief pause. Sue, Teagz, and I glanced at Bren, curious to see what he’d say. 

With warmth and honesty, Bren replied, “A big lump grew on my leg and made it sick, so it had to be cut off.” 

The boy scrunched his nose and responded, somewhat disappointed, “Oh! I thought a shark bit it!” 

Bren laughed and said, “I like your story better!” 

And just like that, the boy wandered off — leaving us in stitches. 

Anzac Day 5:30 pm  

The day’s events are over, and I’ve prepared dinner; the kids have discarded their school uniforms and are playing outside with their friends. My husband is out on our back veranda, skipping. You read that right. He is skipping. And yes, he did try for some double unders. After a 15-minute session, he put the skipping rope down, came inside and said, “Geez, I’m out of condition!”  

“You’ve got one leg and have just finished chemo. You’re goin’ ok.”  I replied, shaking my head.

April 30, 2015  

Finally, Bren has ordered his new leg, and it is a beauty. I’ve just made it sound like an easy process; it wasn’t. It required a trip to the amputee clinic at a hospital an hour north of us, where the clinic doctor, Professor Lee, ensured all the ticks and balances were checked so Bren got a good leg. The consultation took a little over an hour. The leg would need to live up to Bren’s lifestyle and fitness level moving forward. Today, we also met Pat. He would make the mould that ensures the leg fits snugly to Bren’s stump. Then, we went back to see Dr Lee, who wrote the leg script.  

Writing the script was a lengthy process of paperwork that included everything discussed in the consult, plus other critical information I won’t bore you with here. Bren’s fitness level, ongoing treatment, and the lifestyle he will work toward when his treatment is complete have all been taken into consideration. This leg was going to be expensive; Dr Lee had to ensure Bren was willing to use the leg to its best advantage. It didn’t take the good doctor long to realise he was.  

“We’ll try to get you one with all the whistles and bells, Brendan, so you can return to riding your bike. There are great options for you to look at down the track if you want to run or even surf again one day,” he explained. He lived up to his promise. Bren got a great leg.  

From what I understood sitting in on the consult, the more you can afford, the better the options when looking at prosthetic legs, not unlike when buying a car. Fortunately, Bren’s primary leg would not cost him anything. If he is interested in different legs for different activities like sports, in the future, they will be available at our own cost and can cost tens of thousands of dollars. It’s something we can look at when the time comes.  

Although some weeks away, my husband is keen to take delivery of his new leg and start learning to walk again as soon as possible. He has a special goal in mind. Tyz and Bades are graduating from primary school in November. At the graduation dinner, there will be a mother and son, father and daughter dance. Bren must not only learn to walk again, but has to learn to dance, too.