Thank you Nak Hair!

Nak Hair care has very generously donated hair care products for me and the team for the duration of the ride. I feel very special having lovely hair care products, and feel that I must use them up now that my hair has grown back.

Connie’s Diary: Wizard Dress Ups

Hammy had a dress up day at school, with an open theme, he could dress as whatever he wanted. The trick was convincing him to dress as something that would be achievable to make a costume for. Done. He chose a wizard so we set about making a wand and a cauldron to go with the hat and cape that he already had.

I rarely spend time with one boy, most of the time I spend with them is both of them. While II was making hammy’s costume, Mike took Willoughby for a ride, so we wouldn’t have any distractions. It was a real treat to spend time with Hammy by himself. It was absolutely delightful, he chattered away and got excited about his cosume. At one point he said ‘My wand is the magickest thing in the whole world” and I think it might be because he made me so happy with his happiness that it was like magic for mum.

Connie’s Diary: Chemo Holiday

Chemo – I am onto cycle 25 of this chemo, Xeloda, which is tablet form. Before that I had IV chemo, 6 cycles and other drugs to try to stop the spread of the disease. It was spreading voraciously between every scan. The good news is it is stopping the spread of the disease. The bad news is that it is still chemo and it is tiring. Most people are exhausted after having one or two cycles of chemo, as I was. But as the cycles tick on I am getting more and more exhausted. It is hard to describe how it feels, except by saying that every day feels like the worst hang over of my life – without the good night before hand. I am tired. I need a break.

My oncologist has said that I can have a break to try to recharge my batteries. I am going to have 5 weeks off. Hopefully, by the end of those 5 weeks I will be feeling normal again, and won’t be sleeping 16 hours minimum per day. That would be great.

Connie’s Diary: Tennant Creek

Sam is the one pedalling the km’s on this journey, and Jon Bon Jonno and Ley Ley support him out on the road, but behind the scenes we have some amazing people working on organising this massive event and keeping us up to date with media, social media, promotions and sponsorships. We are very fortunate to have a team of experts who all contribute to this event and make it all possible. After I set Sam this crazy challenge, we worked on it together for 18 months, trying to secure sponsorships, working on route mapping, logistics  event management and planning and attracting media attention, not to mention learning what social media is all about. This was a massive bonding experience for Sam and me, we shared the highs and lows, the ups and downs. As the event started to get legs and started to grow into the mammoth event that it now is we quickly realised that we couldn’t do it all ourselves, that we would need some help, serious help.

That help has come in many forms, so many people and organisations have gotten behind us and helped us out in so many ways. One of the most valuable contributors has to be Em. She is my bestie, we have known each other for over 20 years and are inseparable  She is like a sister to me. And now she is a Love Your Sister Sister.

Em has been working since before launch to help us out in every way possible. She helps with PR, media, event management, sponsorships, logistics, legalities, just about everything. There is a reason we call her ”Little Miss Get-It-Done” because that is what she does. She get’s stuff done. And she does all this after work! She has a job that pays that she works full time in, then she comes home and works on Love Your Sister every night from 6pm til midnight every night. If that’s not enough, she then works 10 hours a day every Saturday and Sunday as well. She is so dedicated and we would dearly love to show her how much we appreciate everything she does for us.

We also have a very generous, anonymous benefactor who has been able to help with some of the expenses of our fundraiser, so that every cent given by the public goes to the cause. This benefactor also appreciates Em’s dedication and wanted to show it. And the way t show appreciation? A Boob mobile! Em now has a boob mobile of her own to drive to all her meetings for the duration of Sam’s journey. I am constantly surprised by how people come forward to help on Love Your Sister and this is another amazing surprise show of LYS love.

Em contacted all sorts of people on every town Samuel is set to ride through to find people who want to help by welcoming Samuel and the crew to town, and organise fundraisers in each location to help us edge towards our $1M goal. She contacts newspapaers, radio stations, councils, CWA’s, local businesses, community groups and schools. Then n every town, someone will get interested in our cause and contact Em back. Then they work together to organise receptions for Samuel and dares and fundraisers. Jenny, in Tennant creek was Em’s contact and go to Gal for the Tenant Creek fundraiser. She heard about it from the council just a week before Sam was due to arrive. In one week, she pulled an event together, and it was one of the best yet. She organised a band, DJ, venue and raffles. She and Em worked together, with the help of a heap of local businesses who donated items for the raffle. Together they e=welcomed Sam into town, dared him to wear a very fetching tutu to the event, and they raised over $5 000. An amazing result from a small community who got together and got behind the cause. Another great effort and a reminder that breast cancer effects every community and that every community Samuel visits puts in and gets behind him to help out. Thanks Tenant Creek!

Connie’s Diary: Cushions & Canberra Weekly

Nancy Stroop from South Australia has been busy sewing “Have a Hearts” they are Love Your Sister cushions and they are simply adorable. They are soft pink polar fleece hearts with a black ribbon across them. She is selling them for $15.00 a pair, one big and one small. One is to keep and one to give to your sister. You can even have a name monogrammed onto the ribbon for a small fee. 50% of sales go straight to Love Your Sister. There is also a small postage charge. They are so cute, and this week we received 4 in the post, 2 big ones for Mike and I and 2 little ones for the boys, all monogrammed. These cushions have made my couch complete. I’m not sure who liked them more, me, or the kids.

How perfect are they? Order one now through Nancy Stroop’s Facebook Page

Mention in the Canberra Weekly

The Canberra Weekly wrote up a little article about our humble little fundraiser at The Capital Chemist a few weeks back. It’s not just Sam who makes the press! 

Connie’s Diary: ID Bracelet & Missing Uluru

Last year, in July I got really sick. It started with feeling sick in the tummy and a slight temperature. Within an hour Mike called the ambulance I was so sick, they took me straight to Emergency where I was put into acute care.

In 8 hours I was being resuscitated. Because my body is so weakened by all the cancer and the treatment I am on, it doesn’t take much for me to get so sick that I can’t talk for myself and need serious help to survive.

Since then I have been meaning to get a medical ID bracelet, so that if I get sick while I am out and about, people would know that there was a problem and would be able to ring to get details about me. Well, I haven’t got around to it. But recently, through Love Your Sister, I was given one by Nicole Graham, the Director of Emergency ID Australia. Not only is it very practical, but it is also very beautiful and I happily wear it every day. It even has a breast cancer charm on it!

Check it out, isn’t it beautiful?

Missing Uluru

Samuel has been in Uluru and Alice Springs this week. I really wanted to go with him, I have never seen the desert before and I really wanted to see it with him. But I wanted to be with my boys here in Canberra more, so I stayed here and spent Easter with my boys. I’m glad I did because we had a great Easter, but looking at all the fun Sam, Jon Bon Jonno and Ley Ley are having in the outback, I must admit, I got a twinge of jealousy. I will have to settle for living vicariously through Sam for a lot of this journey, and this is a shining example of that. Check out his blogs and the Facebook and Instagram to see what he has been up to this week, it is action packed and the scenery looks breathtaking.

Connie’s Diary: Easter Egg Hunt

Many weeks of preparation went into the Easter Egg hunt as Hammy is allergic to milk and all milk products, and doesn’t like carob, even when it is milk free. So we buy loads of milk free chocolate buds and make Easter eggs and bunnies like mad for weeks before Easter every year. This year was a little different because we were able to buy some premade milk free Easter eggs, which was great, but we still had to make quite a few, because there weren’t enough for the hunt. He doesn’t usually eat them, but at least he has them and feels a part of it for Easter.

This year the boys were delighted to find that the Easter bunny had left them some Easter colouring in pages, a big egg and 3 little eggs with a note each. Willoughby was delighted that the Easter Bunny noticed that he has been a good boy at school lately, and Hammy was excited that the Easter Bunny knew that he had been eating his fruit and been doing good listening. Hammy was also thrilled that the Easter Bunny knew that he has allergies, and brought him real eggs, wrapped in coloured patterned foil (instead of the normal silver foil that we wrapped them in last year much to his distress). 

We had our hunt down at our local park, with two friends from school, it was a lovely morning with much excitement and joy. Hammy was particularly pleased that he got an egg with gold wrapping and dinosaur cracks in it. He held onto it for ages whilst playing after the hunt.

Since I have been diagnosed I have celebrated 3 Easters with the boys. This year they didn’t remember last year, but I think they will remember this year now they are that bit older. It is such a delight to get to share these special moments with them. 

Connie’s Diary: 18 - 25th March Part 2

Willoughby and Hammy have been missing their uncle long legs (that is what they call him, because he is so tall to them, and has such very long legs). They have been mapping his progress and are very excited that he has about to get to Uluru. They drew him a picture each, which we sent off to them to pick up in Alice Springs. They both drew the Love Your Sister heart, and Hammy even included the paint splatters, which I thought was very cute. Willoughby thought it would be funny to call him big toes instead of long legs this time J

Willoughby copied the corporate logo, very neatly.

Hammy copied the grungier splatter logo

Every time there is an event I think the boys will like, I try really hard to take them to it. This habit started in 2012, when I decided that I had to do as many special things with them as I could while I was healthy enough to do so. Well, we managed to do heaps last year, and the tradition has continued. So this weekend it was off to the model railway exhibition. I have been taking them to this yearly event since they were 1 and 2 years old, both being mad about trains, how could I resist? It is wonderful that they still get enjoyment out of it, every year they notice new things and find it interesting in a different way because they have grown up a bit since last time. 

The highlight this year were the Lego trains, because they have really started to get into Lego this last year or so, especially Hammy. He got a Lego book for Christmas that is just about falling apart he uses it so much. He sleeps with it and takes it everywhere with him, even the grocery store! So needless to say the Lego trains were quite popular, but they also enjoyed the trains they were allowed to operate themselves, driving them fast and slow and stopping them at the stations. 

This week I got to speak to Sam finally. It feels like it has been ages, it hasn’t been that long, but while he has been in the outback I have missed him terribly. I can keep him informed of important information and find out that he is safe using the satellite phone (thanks Pivotel!) but to have a really good chat we really need a landline or mobile tower. So I got to speak to him on his normal phone this week (thanks Vodafone!)

 He said “Thanks for giving me this Con, for giving me Love Your Sister. I haven’t experienced anything so real and meaningful in all my life until now, and now I am living it everyday. It is amazing, you should be very proud of yourself Con, we both should.” I was nearly in tears because he is so right, we have dreamed of this and planned for this for such a long time, and we actually pulled it off (with the help of many many people and sponsors), but we have actually made our dream real, we are doing it. I am so incredibly proud of him for doing the k’s on that crazy unicycle every day, then for doing all the events and fundraisers in all the towns along the way. My admiration knows no bounds. He ended the phone call with “I’ve gotta go to bed, I’m tired, I love you, I love you, I love you” Fair enough, he should get some rest ‘cos he’s got to do it all again tomorrow, and I love him too.

Connie’s Diary: 18 - 25th March Part 1

It has been a quiet (relatively) week with my family this week. I have been sleeping a lot. The time I am up I have been spending with the kids. I am trying to spend time regularly on their reading and we went to a model railway exhibition on the weekend.

I am in week 2 of cycle 24 of Xeloda, which is an oral chemotherapy. It is good because it is oral I only have to go to the hospital to see the oncologist and pick up my chemo every three weeks. It is tablets morning and night. It tends to make me feel sick in the mornings and it makes me very tired, just like most chemotherapy drugs. But it is great in that it doesn’t kill hair cells, so my hair is growing quite long since I last lost it, in 2010/2011 when I was on a different chemo. It is also great that I don’t have to be in hospital away from the kids.

When I started this particular chemo I asked the doctor how long I could take it for if it was successful. She said that it is usually effective for 10-15 cycles, then the effect wears off, the cancer starts to thrive again, and you have to change to a different chemo – a new mode of attack I guess. Well, that was 24 cycles ago (each cycle is 3 weeks, 2 weeks on the drug, and 1 week to recover) and it is still working. I’m basically having it to stop the progression of the cancer, to prolong my life, and that is exactly what it is doing! I am so pleased that it is still working, we have become friends of sorts over the last year, me and Xeloda; it is doing what I need it to do and not causing me too much pain in the process. I hope I can stay on it for a long while yet!

Who knows, maybe while Samuel is breaking the world record for longest distance travelled on a unicycle, I could try to break the world record for longest effective treatment time on Xeloda! Wouldn’t that be great?

With Easter coming up, and having a child with allergies to milk, eggs and nuts, I have been in the kitchen melting down milk free chocolate and trying to fashion it into something resembling Easter eggs. By the time Hammy is 18, and no longer interested in Easter egg hunts, I may well master the process. Let me tell you, it is no mean feat, the little solid ones are easy enough, but the big hollow ones, wow, they are a challenge. I have managed to break far more than I have successfully constructed. Hopefully he will be happy with the result and won’t mind that they are far from perfect. He is a nice kid, very accepting of his allergies so he should enjoy the hunt anyway.

LYS Diary: Uluru/Yalara Part 2