Sunday, 28 June 2015

28 June 15... fun and games

We walked through the door of room 701 just in time to catch a magical sunset over Parramatta Rd. Six days and five nights hooked up to cytotoxic chemo drugs as an inpatient, is a very long and exhausting infusion. The first cycle of three in this round is now done and dusted.

The feeling of relief to have Bren out of the hospital and at least back to the hotel room was overwhelming for both of us, as we flopped onto the bed, cuddled up and promptly went to sleep. Neither of us stirred again until well after dinner time. Tomorrow we would be heading home.

This week was new territory; as they were trying new drugs over a new time frame. This had me feeling a bit out of kilter. Within the week however; the advantage of having time on our hands was that we had a chance to reassess how we were feeling about...everything; including what we could do to make the whole process easier as it goes on. Making sure our focus is where it needs to be... on getting Brendan well, each other, and the kids. When juggling appointments, schedules and treatment with life in general, everything... including you tends to get a little lost. So we had a team meeting to get back on track, and on the same page.

Although long, the week held many highlights; as it always does when you are at Lifehouse. My favourite was the elevator race between Brendan and the gorgeous Cath (his nurse that day) and me. Cath and Bren took the internal elevators and I took the glass elevators. We parted at Level 8 and the race was on to get to Day Therapy on Level 1. As I passed level 2 I could see Cath and Brendan rounding the corner below me for the home straight, Cath wheeling the IV Pole as she juggled several folders of Brendan's notes and Bren using his arm strength to move the wheelchair along...both looking up with huge smiles on their faces. My elevator was closer to the finish line as I waved down at them, and if the doors opened in time I could pip them at the post. I was travelling light with just a  bag and Bren's crutches, so my chances were good. It was almost a dead heat, but I came out just before them, to much laughter from all of us. "What are you two a comedy duo" was the first thing that came out of my mouth. "No" Cath said laughing, “but I think you two are!" 

Cath along with all the girls and boys; the earth angels we call nurses, who have looked after Brendan this week and many others, both downstairs at day therapy and on ward/Level 8 have been wonderful. And yes there are favourites even though I know I shouldn't admit it. It's a bit like choosing between your kids, so I'm not going to mention any names Jess. Knowing that Brendan was being so well looked after was comforting on such a long stay.

Then there was Dr Bhadri being made an official #teambrendanm member by receiving his own #teambrendanm stubbie holder. I wasn't there on the morning he did rounds, but Bren said he had commented that he liked the hashtag on his t-shirt. So he gave him a stubbie holder; telling him that he is considered to be a pretty important part of the team. I like that :)

Gorgia the young registrar on ward is also a valued member of the team. She is confidant, easy going, good at her job and always smiling. She will often casually sit on the foot of Bren’s bed while taking notes and having a quick chat about how he's going. Gorgia also has great taste in shoes. She wears beautiful, high courts with a pointy toe most days. As I wondered out loud how she walks around in them all day...Brendan reminded me that I use to when I was her age. And yes it's true, I think I maybe becoming way too sensible.

As you can see it is not so much a place that makes healing possible; but the team of people in that place. I have said it before and will say it over and over again, we are so lucky to be blessed by the best team that could ever have been bought together, both at home and when we are away.

Now we can settle in for some rest and relaxation for the next two weeks before doing it all again.

Life is good. Hope is limitless.

Sunset on room 701; Sat 27 June 12

P:S:  and a big thank you to the beautiful Maureen, an oncology nurse at Manning Base and also the lovely triage nurse in emergency who helped us organise Brendan's much needed medication this afternoon when we got home; after we left his at the hotel in Sydney. As luck would have it, this led to a meeting with the lovely Karen, oncology coordinator at Manning Base. Our team continues to grow in amazing ways...see earth angels are everywhere.

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

Thursday, 25 June 2015

25 June 15 ... headspace and sniffles

This month has been one of the hardest for me in a while. I don’t know if it is because it marks the end of the first year of treatment; or if I’m just feeling a little fragile and beaten up by the year that was. As strong as my daily spiritual practice is; some days it’s not strong enough. And I know that’s OK. I still love a good rainbow, especially when they appear after you have braved the storm… a beautiful pat on the back from above.

 We have plenty of really big stuff to focus on at the moment; and mostly I can keep an even keel, using all the techniques I have learnt in practice to keep my headspace clear and my heart centred. Yet it might be the smallest, most insignificant things that happen, which make you feel that things are unravelling and now you’re playing catch-up gain. Experience reminds me that this too shall pass.

This week, so far, has gone pretty well (only 2 days to go) as far as Brendan’s treatment is concerned. He seems well in himself; except for the boredom that’s driving him around the twist. He did bring his guitar this time, sadly too much movement of his arm with the cannula in it sends all the pump alarms off! But it was worth a try.

 I am looking forward to getting him home on the weekend and sharing some quiet time with the kids. Brendan will be immune deficient so I doubt that we will be out and about much for a while, as we will be busy avoiding sniffles, coughs and the like as much as we can. A temp above 38 means a trip to emergency for the big fella and we want to avoid that.  I think some rest and recovery is on the cards for both of us.

Happy School Holidays everyone…:) xx

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

Tuesday, 23 June 2015

21/22/23 June 15... Chemo: here we go, here we go, here we go again

 It feels like a long week already, even though everything has gone fairly smoothly as far as chemo visits go. This infusion consists of a cocktail of two drugs, one Brendan has had before, mixed with a new one.

To clarify, this is round four not eight. Each round consists of three infusions. Some of those infusions have been a day long, some three days and this round is three lots of five days. Each trip is broken up with either one week or two of recovery time... There is every chance I still have this mixed up, as I've said before it's really just mathematics, the main thing is that it gets the job done.

Another difference in this treatment is that Brendan has to go downstairs to Day Therapy every 24 hours, for the next chemo drug to be administered. As I understand it, that is because each new chemo bag has to be hung by the specialised chemo nurses down in DT, with this round.

Chemo started two hours late yesterday and that is usually the beginning of a slippery slope, as if you start late you get discharged late at home time. Bren was still in Day Therapy tonight when I left, with two beautiful nurses staying back on overtime till he could be sent upstairs…he was asleep, but I would rather have left him tucked into bed.

Side effects this round is nausea, foggy brain, compromised immune system and if the drug is not given correctly it can destroy the lining of his urinary tract. Urine has to be checked for blood each time the bottle is used.

Confidence in your team is vital and fortunately that is usually easy. We have only come across a few people in the last twelve months; that privately we have questioned their reasons for choosing nursing as their path…lovely people, seemingly odd career choice for them. Funnily enough I saw two of them tonight.

Having said that Bren seems reasonably comfortable and happy; though early days that's a good sign; and although he is still eating well he was noticeably tired by the end of today. I think it will be a long week. So I will try and share a couple of posts as we go along.

On another subject, there was a little more movement as far as amputee treatment went today. After an OT appointment with the nicest girl from Manning Base this week, Bren received a physio call from home today, regarding getting some progress going with his prosthetic. He had Gorgia; the doctor on duty, organise a LH physio to come in and see him, she will get in touch with the team at home and see what can be done to move things along. She did mention that there may not be a great benefit in getting too far ahead of himself at this point, as Brens weight will probably fluctuate from chemo to chemo, so getting a good fit for his leg under those conditions may be tricky.

We just want Brendan to be as ready as he can be for where he is with his treatment, so even to get the shrinking of his residual started I think would be a benefit…then again I don’t have any idea what the next step should be. Watch this space.

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

Oh and a little shout out to my Mum; Dolly, who was rushed to hospital via ambulance due to what they think was a bad asthma attack yesterday. Love ya Mum, hated not being there, but I know you were well looked after by everyone at home xx

21 June 15 ... Pre Chemo Workout

This is a part of Brendans pre-chemo workout, the night before being admitted. He will also walk from our hotel to the hospital. Getting all the exercise he can before spending 6 days in bed attached to cytotoxic chemotherapy drugs. This is also done in an effort to strengthen his veins. He will receive a minimum of two cannulas throughout the week; often with several attempts each to insert them, due to the weakening of his once strong veins over the last 12 months.  

PS: I added the intro of ACDC's Hells Bells to the video...not realising that it would coordinate with the workout, totally unintentional. Brendan wasn't working out to bells here :)

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

Friday, 19 June 2015

June 15: Tuesday 16 ... as busy as a one legged man at a sports carnival!

Our school sports carnival can be a cold, windy affair. In the past it has been cancelled and rescheduled due to rain, and this year was no different. As good fortune would have it though;  due to rescheduling  Brendan and I would be home between treatments this time, and where able to go along and support our kids at their last primary school sports carnival. I have never missed one, it would have been sad to have missed this one.

 I did become teary a couple times through the day, the first after Tyz ran her last race and her aunty looked at me with tears in her eyes and said..."that's the last one! I cried when Bades finished his 200m race too." Yes my family is very sentimental and it is one of the things I love most about them. Then; the last relay was run… the girls senior. Brendan and I walked up to Tyra as her teacher gave her and her friends a huge group hug, while saying "that's your last race!" a special little moment between them that I am so glad we got to see.

There were also some very funny moments throughout the day, like watching how intrigued many of the kids were about Brendan's missing leg. A lot of them just looked curiously as we walked from event to event, and would smile. Some would just wave as they walked past, one little group of three year 3rs just kept coming back up to him wanting to play. We have known many of these kids since they started school with our two in kinder or there after. Several, who didn't already know, came up and asked what happened, and Bren patiently told them. He played a quick game of chasey with one group and had a kick of soccer with another, using his crutches. 

But it is Ava, our niece Lucas gorgeous little friend and now ours too, that made me smile the widest. Since his operation Ava has seen Brendan several times and was one of the first to come up to him to say hello today. She is an avid member of teambrendanm and wears her t-shirt proudly. Every time she see's Brendan she walks up to him and says with the cutest smile you can imagine, "Hello Brendan, you look great. You don't look any different at all." Ava is seven and it melts my heart.

So today was a great day, although long and a bit tiring, we had some laughs and I shed a few tear as our kids grew up just a little bit more... and we all got to enjoy it together.

Life is good. Hope is limitless.

19 June 2015: The Story of it all began

I love to write, it is something I have enjoyed all my life. When I was much younger I remember swapping letters with my Aunty Lynne; her letters were always so interesting… stories of the adventures my family were enjoying up on the Tweed. This inspired me to keep my own journals, way back before the internet had ever looked like becoming a part of our every day living. I would write in them, usually daily, for years at a time. Before letting them go, when that part of my story was complete.

I came to blogging late; it was on the 17/04/2011 that I shared my first post, and I have been blogging ever since. My posts were originally for my own entertainment and that of my family and friends. And then in the June of 2014 my family’s story changed course. It was now I found that continuing to share our story through my blog, was the easiest way to keep our family and friends updated on Brendan’s progress with his cancer treatment and recovery. I had no idea at the time how many of you guy would come along for the ride. I think that it is wonderful that you care enough to read along with us.

Just recently something happened that made me reconsider whether I would go on sharing our story publicly. After much consideration and discussion with my husband and other family members; I  decided  to continue writing, and share all posts again when the time felt right. To be honest it is still the easiest way to keep those who care about Brendan and our little family updated on his progress. As it looks like this part of our story is ongoing for now; even though things get a little raw at times, we still have much to share... and will continue to, with all that are interested. Not only to keep the updates coming but also for anyone who may find what I write about helpful.

I have created this new blog; the story of us, to document our story moving forward. I have also added an archive link to the first year of posts about Brendan's diagnosis and treatment from calliemm.

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

For anyone curious...below is the first blog post I ever published back in April 2011; I have added it here as it is about how our story started… a very serendipitous moment in time! I met my husband

 Published on
17/04/2011 21:16
Pacific Daylight Time

The first thing I will share here is that it truly was fate or serendipity ....the night my husband and I met. I had been single for about a year. I was not long out of a relationship and wasn’t really looking for "the one" fact I had embraced my singledom and was in the middle of planning a trip to Peru with a girlfriend; who had just introduced me back into the world of metaphysics. I was reading The Celestine Prophesies at the time, which would play a part in how I met my husband on the night in question. It was 1995.

There is a part in the Celestine Prophesies where the lead character is told or tells someone [I'm going back almost 20 years forgive my vagueness] that when you make eye contact with a stranger you should follow it up, as there is meaning behind that chance moment.

There where many serendipitous moments on the night Brendan and I met, which started the moment our eyes first met. Vikk and I decided that we weren't going to go out in our hometown that night, preferring to head to a club in a town half an hours drive down the coast. When we got there, the club was closed for renovations, so we turned around and went back to the pub in town. This was the first time Bren and I would run into each other..... serendipity, [he told me later that it was unusual for him to be out and about in town, as he lived further inland and was only out for a mates farewell...serendipity]. 

Then Vikk and I left and went to another pub around the corner; it wasn't long before Bren and I ended up at the same place for the second time that night. He was across the room and our eyes met again...serendipity. So now I decided to take some advice from the Prophesies and went up to him and said hello. I’m not usually that forward but I had to follow the signs :) ...  we started to chat and as it turned out, he already had a vague idea of who I was, as we had friends in common along with family of mine that would later become his...serendipity. To this day we can’t agree on what my opening line was…but I’m glad I found the courage to use it.

When he introduced himself, he told me that he was actually a long time friend of my brother-in-laws younger brother...serendipity. How we never ran into each other before that night; I don't know... I guess we just had to wait for serendipity to bring us together.

The rest as they say is history…thank goodness for unexpected grace.

Wednesday, 17 June 2015

Foo Fighters - My Hero

My Sister Deb just shared this song with me...I luv it. I know she wont mind that I share her message here....

Bren's a hero in every sense of the word. Cal, remember when the plane hit the Ferris wheel & in the footage everyone could be seen to be running away. Except for one who was running in to help 

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