Sunday, 26 July 2015

26 July 15 ... wet tiles are slippery!

If you have ever walked on crutches, you know that in the wet it’s a bit like being on skates and the control you have over the whole situation is minimal. So; when out and about in the wet, much caution is taken to stay upright and in control.

Since Brendan lost his leg, we knew that the probability of a fall was looming. He’s gone down before, post illness (who hasn’t), and the couple of occasions I can recall this happening it has been due to the same thing, slippery tiles …no alcohol involved. And when he goes down …he goes down hard. Unlike me, he has a little bit of height about him so there is a ways to fall!

Yesterday I had just finished unpacking and repacking the dishwasher (is ours the only house where the dishwasher only gets unpacked when it needs repacking?) and I was standing by the kitchen sink texting my sister about her birthday get-together.

Without looking up I heard Bren coming out of our bedroom, and the next thing I knew there was a loud clatter of metal crutches hitting tiles, and a thud. I looked down to see my husband on the floor looking up at me.

He had slipped on water that I didn’t realise had spilt from the dishwasher.  “Shiiit are you OK!!!!” … was followed by me laughing while Bren got back up on his feet, he said “well that wasn’t as bad as I’d imagined it to be.” Then he calmly made his way to the lounge and got on with what he’d been doing earlier.

I apologised for laughing, and I did feel bad for laughing. But to be fair I know I laughed at least one other time that he’s slipped over (the good wife), when he still had two legs, because it was funny.  I’m also pretty sure if I go guts up any time soon, my husband will have a pretty good laugh as he picks me upJ. That’s just how we roll!

So first fall is done and dusted, and with is new leg only a matter of weeks away we best keep a camera handy…cause I’m sure there will be plenty more to come!

PS: a Quick story about getting about on crutches while we are on the topic: This round of chemo as most of you know, Bren is infused 24/7 for the 6 days he's in hospital. So getting about is a logistical nightmare; unless he calls someone to trail along with him rolling the chemo pole he is attached to, along beside him. Of course if he needs to go into the shower/bathroom he mans this himself a lot of the time.

One morning the physio came in to see him, just as he was coming out of the shower. She looked at him (he was fully clothed), said "Wow you seem to be getting around fine, I don't think you need to see me." she then continued to watch him with a smile on her face, as he maneuvered back toward his bed. "However I wouldn't recommend anyone else push a chemo pole while moving sideways on a pair of crutches!" she said, still smiling as she left.

He goes alright!

Life is good and hope is limitless.
Cal xx

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

PSS: Happy Birthday Sue xx

Friday, 17 July 2015

17 July 15 ... that loving feeling

He made me smile like this all week  :)
I sat comfortably on the black reclined seat, although it felt cool at first I knew I was going to enjoy this. I hadn't had a massage for a long time and I could feel that both my neck and shoulders felt tight, it's where I carry most of my tension.

The city street looked wet and cold below as people moved swiftly from place to place, dodging puddles and each other. I was happy to be facing the large picture window as I waited for the masseuse to work his magic. I was feeling relaxed already.

His hands were warm, and the relief I felt as he placed firm pressure with a gentle touch in all the right places, was beginning to melt away all of my cares. Yes this was definitely a good idea and I was very grateful to my husband for suggesting it.

I began to slowly drift off into that place of bliss that comes with deep relaxation, and then a woman’s voice bought me back into the room with a start, a little like listening to your favourite record with your eyes closed when someone scratches the needle across the grooves to stop the music.

I looked up at her with a smile as she looked at me with a slightly raised eyebrow, "I know" I said, "he comes in for chemo and I get a massage" I turned around, gave my husband a kiss to say thank you and hopped down off his chair so the nurse could tend to him.

Yep he's a keeper, and that's why I think every now and again I catch one of the girls swoon just a little when they are around him. I am the luckiest girl in the world.

This week has gone fairly well, or as well as a 5 and 3/4 day infusion can go. Being together made the harder days easier and the other days doable. Some of them were even a little bit fun. We are looking forward to heading home tomorrow all the same, all going well.

Life's good and hope is limitless.

Cal xx

PS: I didn't get a pic of us together this week ... so I have added one of my faves from a couple of years ago ...he'll know why I chose this one :)

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

Tuesday, 14 July 2015

14 July 15... The Camperdown Country Club

on my morning walk before grabbing Bren a fresh OJ
Today the beautiful Di popped into Bren’s room to say hi and to invite us to the Camperdown Country Club for afternoon tea.  Di is a Lifehouse volunteer, and quite honestly the LH volunteers are the lifeblood of Chris Obrien Lifehouse.

They are there to offer a kind word, a cuppa or a compassionate ear. No request is too difficult and all help is given with a smile and an open heart. Most of these wonderful people have trodden their own cancer path as either a patient or a carer, and they truly get it, they understand.

Camperdown Country Club is held every Tuesday afternoon between 2 and 4pm in the LH Livingroom. It is a place for patients and carers from out of town to get together for a chat and the opportunity to connect. Brendan was unable to come down because his chemo runs 24 hours, but I thought I would duck my head in and say hi. It was a small gathering, just eight adults including me, and a gorgeous little 2 year old boy.

Our group consisted of the a beautiful 95year old lady of grace and dignity, she had come down from 8th floor and had another 3 days as an inpatient before going home, we shared some amazing conversations about her life. She was very proud of the fact that she was an ambulance driver through the 2nd world war and could do the mechanical work on the ambulances herself. Unfortunately she had just failed her last driving test so is no longer a licenced driver...but said she knew that day was coming. She had sadly lost her husband 10 years ago, and missed him very much. Although they had no children it sounded like they had a wonderful marriage.  Then there was the vibrant young woman in a wheelchair, who I imagine may have been in her 20’s, also down from 8th floor, who was excited to be going home tomorrow. She was a very friendly girl who had nursed her dad as be battled and lost his own fight with cancer before being diagnosed herself.

There was also the lovely young parents of the beautiful little boy. It felt like they were a younger version of Brendan and I, only their journey so far had been a year longer than ours. She and I didn’t get a chance to chat, as they had to head back upstairs so he could continue his treatment. They were only here for the day this time around and would be heading back to the central coast this afternoon. As they got up to leave she came over to me to say goodbye, we instinctively clasped hands, acknowledging in each other’s dark ringed, exhausted features what only someone going through the same thing can see with real clarity. In that brief moment saying silently to each other, I see you and I know how you feel. We ran into each other again upstairs and took the opportunity to exchange numbers. As we said our goodbyes; she looked at me and said “I was just saying to my husband, I think she and I would really hit it off!” We will stay in touch.

 I am so glad to have had the opportunity to meet all of these wonderful new people today. Oh and I can’t forget the other two gorgeous volunteers that rounded out our group. Both beautiful, beautiful women, one was the Volunteer manager, the other a Spiritual Counselor of sorts, an interfaith Reverend.  Both keeping the conversation flowing and making sure everyone was comfortable and felt safe enough to open up if they felt they wanted too.

I will definitely be attending the Camperdown Country Club again the next time we are down here on a Tuesday.

Life is good and hope is limitless.
Cal xx

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

Monday, 13 July 2015

13 July 15 .... chemo: a day in the life

The holidays are over and the traffic was surprisingly good as we made our way down to the city in record time yesterday. Leaving the kids to have a couple of quiet days with their Nan before heading back to school tomorrow. Is the big fella ready for the second cycle in this round of Chemo? Ready as he'll ever be! The last two weeks went pretty well and he was able to workout every day to build body, mind and vein strength. He looks fit, actually he looks hot and has put on a little weight (muscle probably), which is awesome. Yep, I'd say he's as ready as he could be.

Today was an early start; we fronted up to Lifehouse at 7:30am for blood to be taken and the go ahead given for chemo to begin. Brens consultation went ahead with Keith at about 9:30 am and the infusion was started at around 10:30am. Then it’s a wait for his room to be ready for him upstairs. By 4:30pm we are told the room is still about an hour off being ready, so I came back to the hotel room to allow Bren some nap time. As I am writing this to pass the time my hubby messages to say he’s on the move. It’s now 5:47pm! Gotta go, will finish post later!

OK; I am now back in my room, it’s 8:50pm and Bren is snuggled up in bed, one day down…five to go, and that all ran pretty smoothly.

Below is a chemo day in the life of my husband….in 4 pictures, taken today (forgive the blurry ones, photography is not one of my greatest talents!)
Life is good and hope is limitless...
Cal xx

9:30 am...ready for a consult with Keith

10:30 am ... infusion begins

4:00 pm ...exhaustion sets in

6:30 pm ... finally settled into his room upstairs, the smile says it all.

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

Friday, 10 July 2015

10 July 15 ... July is Sarcoma Awareness Month ?

According to the American Association of Cancer Research website; July is Sarcoma Awareness Week. I am not sure if this is recognised internationally, as I was unable to find any information related to Australia..... 

I have added some sarcoma facts that I have found; in the spirit of bringing more awareness to this uncommon cancer, with the hope that through more awareness comes more research, and with more research there will be higher survival rates:

  1. Sarcomas are a rare group of cancers; where malignant cells form in bone or soft tissue.
  2. Sarcoma account for less than 3% of all cancers and occur in approximately 1% of the Australian population.
  3. There are many, many different types of Sarcoma.
  4. Many people who develop sarcomas will have no known risk factors.
  5. Sarcoma can be found in any part of the body, a high percentage however are found in the legs.
  6. Sarcoma can develop at any age, but is more likely over the age of 55years, with the risk being equal to male and female.
  7. Sarcomas are usually managed by a Multidisciplinary Team, which can include a surgeon, medical oncologist, radiation oncologist, pathologist and radiologist.

** Many people have asked why Brendan has his treatment in Sydney, and not closer to home. It is because his oncologist is very experienced in the type of sarcoma that he has, and he is based in Sydney.

Information sourced through:
  •  Australian Sarcoma Study Group  
  • American Association of Cancer Research
  • Watching and listening as my husband has undergone 12 months of intensive cancer treatment for a sarcoma in his right thigh

      Life is good and hope is limitless.
Cal xx

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

Thursday, 9 July 2015

9 July 15 ... Infections & milkshakes

Brendan has fared really well so far in his recovery from the last cycle of chemo, and we are now bunkering down for the next few days before heading back to Sydney on Sunday. Yesterday we had him to the doctor due to a small splinter in his finger from repairing the BBQ; that got a little bit infected. 

The infection looks like it has moved up his arm to present as an angry red, swollen lump, requiring antibiotics. If the antibiotics haven't worked by tomorrow he will have to have an intravenous dose administered, as we need him fixed before Monday’s infusion starts.

In the mean time the kids and I enjoyed a milkshake at Bent on Food today while Bren touched base with Wingham Physio. This is the next step in getting more progress happening with his leg. And now I am getting Bades ready to see the doctor out here to fix a middle ear infection. Medical and pharmaceutical love us this week.

Apologies to all those we haven't had a chance to catch up with over the last couple of weeks, there's just never a dull moment around here, hopefully in 6 weeks...after this round of chemo is finished and the results are in, we will be back to our new normal and will be up for catch ups a plenty with all of our favourite people :)

Oh and I have to give out a huge cheer, and a massive thank you to our mate Mike Eyb, his beautiful wife Kez and their gorgeous kids. Mike has just completed the last  91kms  of Race the Divide, this race is a staggering 4415km / 2743 miles long. He rode his mountain bike for something like 26 days to complete the race in support of #teambrendanm. Amazing effort, amazing man, amazing family. Thank you.

I hope everyone is enjoying the last few days of the school holidays.

Life is good and hope is limitless.
Cal xx

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

Monday, 6 July 2015

6 July 15 ... teambrendanm wall art

a big thank you to the artist: Greg Cutler

Thank you to our brother Mike and our gorgeous friend Ali for helping Bren and I hang our art work today. The teambrendanm Welcome Home sign makes perfect hall wall art.

Life is good and hope is limitless :)

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

6 July 15 ... 24/7 with this man

Sometimes I miss the carefree ease of our pre cancer lives. I am sure my husband does more so. How simple our life was… imagine perfection and not recognising it. 

I have come to understand though that perfection is not only an illusion it is also really, really over rated. Our days now aren’t as easy and certainly not perfect, obviously. But the celebration of even the smallest triumph can lift you to a place you never experienced when life was easy.

The gift of time that my husband has enjoyed with the kids since becoming more or less house bound with his illness, is something he would love to see every Mum and Dad experience. Not under the same circumstances though. Just him being at home with the kids before and after school, over such an extended period of time has been beneficial to the three of them, and to me watching them enjoy each other, when the treatment isn’t interfering.

Then there is Us; we have always enjoyed each others company, we are a tight couple. Even so, you would think that a year of 24/7 might put a strain on anyone’s relationship no matter the circumstances. I’m not saying in that time there haven’t been moments, there have. But they are few and over very quickly. I have loved spending truckloads of time with my husband; he really is very amusing a lot of the time.

Life may not be as easy as it once was, but it is full. It is full of hope; and is overflowing with kindness, it is full of exceptional and incredibly good people, and we are surrounded with more love than we knew was possible. Yes, our life is full.

Most of all we know we have a phenomenal family and the time we have put into raising our beautiful children has proven to be time well spent.

Would I like easy again? Absolutely, but when it happens this time; I know that not only will I recognise it....I will enjoy it without guilt or explanation and I will be very grateful for it.

I hate cancer, but I love my life.

Because life is good and hope is limitless.
Cal xx

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

Saturday, 4 July 2015

4 July 15 ... friend requests?

Of all the crazy things that this cancer rollercoaster ride has thrown up so far; one I have found to be really intriguing and was not expecting, is a particular person from Brendan’s past seeking him out to reconnect. Now that’s cool, we all friend or add people from our past on facebook out of politeness, curiosity, or just because they’re nice people... right. So; not so unusual!

However; after Bren told me about the latest friend request he'd received, a faint alarm bell went off in my head when I looked at her fb profile. At that point only 3 friends (I'm assuming by choice)... including my husband. Cool…I think? Does it feel a little stalkerish though? … maybe after reading the link below. I’ll let you know. ( I was looking at her profile, mmm ). I was happy to "like" comments she left on his wanting to catch up in the park so that her kids could meet his kids...etc. Just so she knew I was OK with the reconnect.

She had mentioned in one comment (and there were a few) that she had been following my blog; so has the same access to current updates on Bren’s diagnosis and recovery as the rest of our family and friends. A quick "Hi, I have read that you are having a crap time of it lately...I'm thinking of you." could have been a really nice catch up message, and leave it at that. 

A slightly louder alarm bell went off when Brendan was de-friended soon after being friended (maybe accidentally…I’m not sure) and then the fb personal messages replaced public wall messages. Now it's all starting to feel a bit weird. Yes, I have been sitting with Brendan when a couple of her personal messages have come through, awwwkward…lol. But he is very courteous and kind to the sender, as you would expect, while using as few words in reply as possible. Oh the fb PM …it can be such a slippery slope if ones not careful, I'm sure it’s been a little uncomfortable for both of us, but what do you do? Smile and keep each other in the loop basically...Might be time to step away from fb for a while :)

So; (long winded sentence coming up)…I am feeling that it is a little inappropriate having a woman that I have not met in the 20 years that Bren and I have been together, and whom he has had next to no contact with in that time… keeping tabs on my husband in private messages, considering there is a purpose built blog to eliminate the necessity for this kind of bullshit in our already full and mostly draining schedule...Phew! It's a little frustrating. For me anyway and I think  probably for him too! Where is my Zen when I need it! More practice required...stat!

I have sent a message through to introduce myself and say that I would be happy for her to friend request me and Brendan (again) to make communication a little easier and a lot more open. I guess that may not happen now that I have written about this small but interesting (human nature is such a curious thing) part of our journey, but the ball’s in that court. Ah, the games we play!

Private messages were the last thing I thought I would be troubleshooting at this time. But there you go, things can get tricky in unexpected ways that barely relate to what’s actually important. Life on the rollercoaster sometimes feels like a merry-go-round. And we are looking forward to getting off this one.

Moral of this story is: If you are going to PM your Ex...always remember that there is no guarantee that Personal Messages are personal or private, and avoid saying anything you wouldn't say in front of the Ex's significant other, or your own ... for obvious reasons. Or better still simply use a public's much easier for everyone. 

You’ve gotta love facebook! But then we are an open book, so I'm not complaining....really  :)

Related: I found this article at purplecar very entertaining; to-friend-or-not-to-friend-the-ex/

Thursday, 2 July 2015

2 July 15... driving as an amputee

last drive in the city: 22 July 14
The first step was taken today to get Bren back on the road. His driving assessment is done! It doesn’t seem that getting behind the wheel again is going to be quite as easy as we first thought. Bugger!

It’s a little like three steps forward and then two back, but one step ahead is better than standing still. Driver training is coming up; then driving test and yes I'm pretty sure he said that he will be on his “L’s” again.

 It looks like a purpose built pedal will have to be added to an automatic car (we were hoping he could just use his left leg) and this can be done and signed off on at either Coffs Harbour or Sydney. It was also suggested that he wait till he is fitted with his prosthetic before getting an automatic, to make sure he fits comfortably behind the wheel when his leg is fitted. (We both have manuals at the moment, none of which Bren can drive now.)

The Physio in Sydney last week mentioned that maybe he shouldn’t rush into having the prosthetic fitted while undergoing chemo, as weight fluctuations due to treatment may hinder getting a good fit. Hopefully there isn’t a lot of chemo left to have, as this round should be over in seven weeks. Whatever the case with chemo however... having his leg fitted and then learning to use it feels like it may be a little way off yet, and of course we would like to have had him driving yesterday.

So; at the moment it feels a bit like we are running around in circles trying to catch the chicken before it lays the egg! Patience is a virtue and to this point we are doing OK with maintaining ours in all things…kind of.
Having said that; Independence Day cannot come soon enough…for either of us.

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