Saturday, 29 August 2015

29 August 15 ... Chemo Results

Dr Viv and Brendan..they are quite a team.
Sitting in the Lifehouse Clinic reception is always an anxious wait. And yesterday was no different, to the last four times we have sat there, waiting to be called in by Dr Bhadri to get Brendan's results. It doesn't improve with the amount of times you do it, no matter what spin you attempt to put on it.
Dr Bhadri came out to show us into his room, looking smart in a striped shirt and his kind smile. We sat down as he looked at the results on his computer and then talked them over with us.
They are both good, and not so good, but even the not so good are OK. The good is that the chemo, up to now, is still managing the cancer in the spots that we knew about. Nothing is any bigger and may even appear to be sightly smaller. However the not so good is that there is also something showing up in a rib on the left side now, and another spot on the left lung. So the rollercoaster continues.
The indication of another spot showing up is devastating to hear, and with the subconscious action of a man that has had to deliver this news too many times before, Dr Bhadri pushes a box of tissues toward Brendan, while continuing to talk. We both take one. We are so glad to have Viv as Brendan's doctor; we know how hard he is fighting for us. I truly believe it has been the determination of these two amazing men, working together, that has played the biggest part in Brendan getting this far. I have no doubt, as rocky as it has been and still may get at times, that they have a long road to travel together yet. Somewhere along that road I am counting on them creating the miracle we are looking for. If anyone can, they can.
We are on to a new drug. As I understand it, Bren will trial it for 3 months and then do all the tests again. It is chemotherapy in tablet form, that can be taken at home, with side effects being monitored by our GP, who will report back to Dr Bhadri. We also have the wonderful oncology unit here at our local hospital for support if needed. We are hoping the side effects are tolerable because 3 months of treatment at home is far more attractive to Brendan (and the kids and I) then doing the last regime of Chemotherapy again, too soon. Bren has tolerated all previous chemos fairly well so Dr Bhadri is expecting that he will do well tolerating this one too. It will be nice to be home for three months straight, all going well.
Here is what we know for sure; the two previous drug combinations have managed the cancer to this point, since his amputation. This has prevented the spots already presenting from getting larger and shown us that Bren responds well to chemotherapy, as far as managing the cancer goes. It is a blessing that there are now a couple of drugs that have proved their ability to manage this disease, while we continue to try and find one that will hopefully get rid of it altogether. The ability to manage the cancer is something we are incredibly grateful for, even if it took a good cry and a good night sleep last night to get there. 
There is no timeline that can be given, we just have to keep on keeping on until we find the miracle drug that will work in every way we want it too. It may be this next regime or we may have to manage it for years until the right one turns up. But I have to continue to believe that one will.
So the ride continues and we are up for the challenge.
Thanks again to all who are following our story; the love, prayers and positive energy you are sharing with us is vital to Brendan’s recovery. You inspire us to keep moving forward.
Life is good and hope is limitless.
Cal xx
You can find more information on Sarcoma Cancer by following this link: sarcoma.

Tuesday, 25 August 2015

25 August 15 ... learning to walk.

My sister Deb and I were having a chat about life in general the other day and she told me that a wise man once said, "things are never as easy as they seem!" 
I said,” that’s very true."
"Well it was your husband that said it," was her reply.

No one knows the meaning to these words more than he does, as he pulls his new prosthetic leg on daily in an attempt to walk again. It is a slow, sometimes painfully and tedious undertaking and the frustration is obvious.

As I try to understand what he's going through, watching as he does the hard yards, is no help. I try to imagine and can't begin to. Closing my eyes, the closest I get is to think about how it feels to try and write my name as neatly with my left hand as I can with my right. That's hard! Then I imagine that my hand is missing from my wrist, and that there is a foreign object between my wrist and the pen. I have to control it, even though I can't feel it, if I want the pen to make a mark. That's shocking. Now I imagine that I am trying to stand, keep my balance and take a step under the same circumstance. Even imagining this with crutches for support, I want to scream with frustration...because it just seems too difficult to imagine.
And then I look at my husband doing it; small step, after small step. Concentration, frustration, pain! But not ever looking like giving in. That's inspirational!

I know that he knows without a doubt that things are never as easy as they seem. And that doesn't stop him.

As he learns to walk again, we acknowledge that running might be a way off yet, as the truth is - you have to walk before you can run...and that's OK. Because last week he only had one leg to stand on, and this week he has two.

We head back to Sydney on Thursday, and Brendan will get the results of how his last round of chemotherapy has gone. We are hoping when theys are in, learning to walk again will be all he has to focus on.

Life is good and hope is limitless.
Cal xx
You can find more information on Sarcoma Cancer by following this link: sarcoma.

Friday, 14 August 2015

14 August 15 ...having a leg to stand on

Thursday this week marked another milestone in Brendan's story. We traveled down to Newcastle for the morning and he was finally measured up for his first prosthetic leg. As far as we know it is a good start up leg. He hopes to try it out for the first time on Monday Morning, but wont be allowed to bring it home that same day. First he has to learn to walk with it confidently. We are not sure how long that will take. This is a whole new world, but knowing Brendan as we do...he'll be out and about on it fairly soon.

Sadly the effect of sarcoma on the community in terms of disability-adjusted life years is enormous; and as in Brendan's case, something an individual diagnosed with the disease will live with for their lifetime moving forward.
This is not something many people hear about unless they are, or someone they know is personally touched by this uncommon, aggressive form of cancer.

Thankfully we are living in an incredibly innovative world, and as we personally do more research and experience more of this brave new world (to us) we have come to realise that the sky is the limit. I have seen images of others with the same amputation as Brendan running, dancing and surfing, to mention just a few, and I can't wait to see him do all of these things too. It literally means a leg for all occasions! We are going to need a bigger wardrobe! 

While waiting in the waiting room at the amputee clinic, for Brendan's to be fitted, a man came in with a broken foot, when the receptionist asked if he could sit and wait for someone to come out and see him, he replied "Oh no, that's OK, I'll just leave it with you, I'm wearing my spare." 
A pain free broken foot.... there you go, that's a plus right there! 

We are incredibly grateful to our entire team for inspiring Brendan through the love and positive energy you surround him with; helping to make this transition and the ongoing rehabilitation for him as easy as possible.
I look forward to bringing you updates on his progress.

Life is good and hope is limitless.
Cal xx
You can find more information on Sarcoma Cancer by following this link: sarcoma.

Monday, 10 August 2015

10 August 15 .... Our Gratitude to the Following Businesses & Individuals


Brendan and I would like to say a huge Thank You to the following businesses, families and individuals for their support of the #teambrendan fundraising event held on the 08/08/2015.
Without your support the event would not have been possible and we are truly grateful for you participation.
we are overwhelmed by your generosity.




Sunday, 9 August 2015

9 August 15 ... thank you #teambreandanm

For anyone that loves numbers; last night August 8th 2015, was the numerological alignment of 8-8-8. The number 8 is the symbol for infinity and numerologically vibrates the energy of continuity, abundance and harmonic balance. Number 8 also resonates with the influences and vibrations of inner-strength, personal power, prosperity, and giving and receiving.

What a profoundly perfect date #teambrendanm chose to hold the perfect coming home party for Brendan, after completing his last round of chemotherapy.

When talking about abundance; often monetary abundance is one of the first things that come to mind; and last night, as we have been several times throughout Brendan’s struggle with cancer, our little family were generously blessed by our community in this way. For which we are incredibly grateful. This was however, matched and surpassed by an overwhelming abundance of positive energy, colour, human spirit, community spirit, joy and pure, unconditional love; that was literally thrown around the room sticking like confetti to everyone there, overwhelming us completely when we walked into the room.

Earlier in the day Brendan and I passed the morning at Lifehouse waiting for his last few hours of chemotherapy to finish; 310 kms away a team of our family and friends… the teambrendanm committee, were turning an auditorium into a magical rainbow room that would later hold a room full of our favourite people.

After a full week of 24 hour daily chemotherapy infusions, a late get-away and a flat car battery, the chance we would be able to pop into the teambrendanm event to say hello after our drive home, was not looking doable. An accident on the freeway that slowed the traffic down to a standstill confirmed in my mind that we would be going home to bed.

Roughly seven hours after his chemo infusion had finished we walked through our front door, exhausted but happy to be home. I wondered if Bren was still up for heading up to the club but didn’t push it, I was tired …I couldn’t imagine how he felt.

I got the lap top out and started to set it up, he asked me what I was doing. As I waited for facebook to load I said, “I’m going to get on #teambrendanm’s page to see if they have put up some photos of the room.”
The following was our conversation:
“come on, we’ll just go up!”
“now!”
“Yep!”
“OK”
So we hopped straight back in the car, me with hair that hadn’t been washed in a week, pretty much no make up and the same clothes I’d been wearing since 7:30 that morning. Him with the clothes he’d had on all day, his #teambrendanm cap and a huge smile.

We got to the club just as the speeches had started, serendipitous timing. When we walked into the rainbow room all I remember was a sea of smiling faces, most we knew and some we didn’t. The feeling of joy radiating toward us in that moment was one of the most incredibly beautiful and moving experiences I have ever felt. It literally took my breath away.

Bren then spoke so eloquently and heartfelt, that I doubt that there was a dry eye in the house and I was so proud of him. He ended his speech with a request that I think from my perfect vantage point was the highlight of my night.
He asked that everyone turn to the person next to them and give them a hug. There was an audible sigh of joy from the crowd as a room full of people hugged in unison. It was incredibly beautiful to see and pretty much captured the essence of our journey with #teambrendanm.

I have not kissed and hugged so many people in one night ever before; and our brief drop in to say hi, turned into a heels up, four hour rare night out for the Maloney’s! Yes I think I did catch my husband on the dance floor ever so briefly! Doing a one legged cha cha...ya gotta luv that.

When all is said and done it is not the things we do, but the people that we do them with that matter the most.

To every single person in that room last night and to those who wanted to be there and couldn’t be… #teambrendanm: from the most important, all the way down to the most important (I can’t not steal a great line like that from my husband!) we solute you and are very grateful that you are all in our lives

Thank You.

Life is good and hope is limitless.
Cal xx

 You can find more information on Sarcoma Cancer by following this link: sarcoma

Wednesday, 5 August 2015

5 August 15 ... Young Doctors

getting a little sun and strength pre chemo week
Well it's hump day in the final cycle in this round of chemo. But for a bit of a hick-up on Monday morning that caused delays for everyone and the fact that Brendan has been bored out of his mind from the get go this time, all is running smoothly (thank goodness we got to spend a little valuable family time outdoors on the weekend prior to chemo week) ... it looks like he will be discharged sometime Saturday afternoon.

Sadly this means that we will miss the #teambrendanm function on Saturday night. We can't believe that so many of our favourite people will all be in one place at one time and we can't be there. We love you guys and are so grateful to all. I know how much work has gone into this event, and the time so many of you have given up on our behalf to organise this evening for us, both Brendan and I are again overwhelmed by the generosity of our family, friends and community. Thank you.

Being that this is the shorted post I have written for a long time, or ever,  I am going to say a quick thank you to a Young Doctor who has looked after Brendan on ward throughout this round of Chemo, and I think even a few other times throughout the last year.

Brendan & Dr Georgia
We have considered Georgia an important part of #teambrendanm for some time now and had the opportunity to tell her that yesterday, when she told us that this would be the last time she would work with Brendan, as her rotation at Lifehouse was ending. She is moving on to grace another lucky hospital with her energetic confidence, commitment to her work, and her kind and funny bedside manner. Yes, she did receive her own #teambrendanm stubbie holder! And yes, I did feel a little emotional.

I am glad I had the opportunity to tell her I thought she was a fabulous doctor. Brendan agreed and thanked her too. Throughout this cancer ride I have taken with my husband, we have been blessed to have many amazing doctors and nurses look after him. All of them working tirelessly day in and out, touching many lives not just ours, as they go about their workday, and you don't always get the chance to say the things that you want to say.

What I didn't say to Georgia was this: I don't think you realise that you didn't just do your job when taking care of Brendan; because of the Doctor that you are, you also touched our hearts. You will not be forgotten in our home; because as a part of Brendan's medical team, you have helped to make some of his toughest days a little bit easier, choosing always to turn up and do your job with a smile and a kind word. Your bedside manner is brilliant...infectious even :), and that’s not something that you learn, it is something that you have.
Among other wise words of wisdom Brendan would add this; in his words: "Don't ever lose that smile, it's killer. If it starts to go, think about what you're doing... and keep wearing great shoes!"

Thank you, we are incredibly grateful for your hard work Dr Georgia.

Life is good and hope is limitless.
Cal xx

You can find more information on Sarcoma Cancer by following this link: sarcoma





Saturday, 1 August 2015

1 August 15 ... 5 Choices You can Make

5 choices you can make  (a carer’s perspective)

Today these are my top five; choices I have  made to help deal with my husbands cancer diagnosis, ongoing treatment and recovery. Tomorrow they may vary, but everything I have written  here has helped me (as the carer) to this point, in what has been a long, unexpected, and fast paced turn of events in my families previously happy and carefree existence.

If you were to ask my husband; (as the cancer patient) his top 5 would probably be very different, or maybe a little similar, I'm not sure as although we are taking this ride together we are experiencing it from our own perspective.
When he is through all of his treatment and has the time and energy to do so, I would love to have him share what has worked for him.

5 choices you can make:


1. Own it: you can go down all the poor me, why me roads you want, it wont change anything. You can even try to dull down what’s happening with copious amounts of alcohol, drugs or whatever else you think may protect you from the pain of what you are going through. It won’t.  So the best bet as far as I can see, is to choose to own it, and move forward. Resisting the fact that your loved one has been diagnosed with cancer won’t change the diagnosis, but may put you at a great disadvantage from the get go. Accepting what is and moving with the fast pace of the cancer juggernaut is the only way to keep up with and support someone going through treatment, in my experience. The freight train was taking off whether I liked it or not; I was either on it or off it. I could not help anyone if I was still standing on the platform feeling sorry for myself as it rounded the first bend.

2. Look after you:  If your family is touched be illness or disability and you are the primary carer, then it is essential that you are looking after your own well-being too. Your loved one/s is depending on you. In many cases, for a time at least, everything outside of making your loved one well will become your responsibility; from running your home, caring for other family members, scheduling appointments, arranging accommodation, shuttling to and from treatments, and tending to the needs of those within and some outside your home, especially the patient.
If you are exhausted make time to rest, if you feel overwhelmed take some time for yourself and if you are scared… talk to someone; a family member, close friend, councellor or someone who has been through a similar situation. There are people and organisations that are only a phone call away, and are ready and willing to help. Understand that your family, friends and for the very fortunate…your community want to help; their offers are genuine and are made in the hope that you will accept.

3. Stay Calm: You will need to find something to help keep you calm and centred. Something to keep you anchored to solid ground. You will be hit by a barrage of information, a lot of which will be extremely difficult to hear and take in. You will receive advice and experience emotional, physical, mental and spiritual upheaval. You will easily burn out if you don’t find a way to keep yourself centred in all areas of your own well-being..
Find a simple tool or technique that you can use daily (a daily practice) to help keep you on track and energised. This can be anything from exercise, yoga, meditation, reading, dancing, playing or listening to music… anything that allows you to reconnect with you. You will be continually sharing small pieces of yourself in a very big way. So you will need to find a way to re-gather… and please remember to breathe. The tools and techniques I use to keep myself calm and centred have been learnt through the daily practice of Reiki an Energy Therapy, which I use in self-treatments.  This practice has sustained and supported me through the most difficult period of my life, and continues to. You will need to find a way to stay calm amidst the chaos, for your sake and those you care for.

4. Ask Questions: As mentioned above; you will be given an enormous amount of information and may need to support your loved one as they are asked to make sometimes difficult, life saving decisions. Or you may need to make decisions on their behalf. You need to know that throughout this journey there are no silly or small questions. If you don’t understand something ask, and continue to ask until you understand clearly. We are blessed here in Australia with amazing medical practitioners and access to them. These people are ready and willing to address your concerns. Do not be afraid to ask questions.

5: Don’t get ahead of yourself: Very early on in my husbands cancer story his oncologist was explaining his up coming treatment to him. When he was finished I asked what the next step would be, if that treatment didn’t work. He looked me in the eye, and with a firm gentleness said “Let’s not deal with hypotheticals. We will just work with what we know.”  He did not make me feel that it was a silly question and he answered with clarity and compassion. It was a perfect answer and a reminder for me to stay present. We have to work on what we can do today to improve our situation. Placing our focus on the here and now is one of the most important things we can do to aid recovery, and yet sometimes the hardest. As much as we want to know what tomorrow will bring, it is much more important to get through today. So in my families case we have worked very hard to not only take one day at a time, but to enjoy that day to the best of our ability as it unfolds.

Although at the moment life isn’t carefree, it is for the most part still definitely happy, and for that we are all very grateful. 
Life is good and hope is limitless.
Cal xx

You can find more information on Sarcoma Cancer by following this link: sarcoma