Connie's Blog: Breakout of Hospital

Well, I arrived in Darwin and had a – let’s say – eventful evening (read – disastrous). I started to feel quite unwell and was in a bit of pain before I got on the plane. I just got progressively worse throughout the flight, so when I arrived, I had a sleep for 5 hours. That refreshed me somewhat, but I was very disappointed when Sam came to wake me up because I discovered that I had missed the whole evening with my family and some of the Darwin crew. I find I am missing so much these days, but it was great to wake up and have everyone there.

I didn’t last long before I started to feel really sick and Steve and Michelle, who I was staying with in Darwin rushed me off to the hospital ‘cos I passed out. Really I just wanted to keep them on their toes, and check out the Darwin health care system. I was very well looked after and all of the staff were very compassionate and caring.

In the morning I felt dreadful, and when I looked at myself in the mirror I got the shock of my life, I looked awful, but I had some radio interviews that I really didn’t want to miss, and I was so keen on the even organised for this morning, Wulagi Primary School.

I asked if I could leave hospital yet, and they said I could leave, but it would be against medical advice. I must have still been high from the adrenaline they had given me earlier, and had some sort of super human strength, invincibility thing going on and decided that I would break out, and come back a bit later to finish any treatment and get some more rest if I started to go downhill again.

With some help, I busted out and ventured off to the radio stations. First I met Tom and Courts at Hot 100 and had a great chat with them, then went over to the Mix 104.9 and met Mel. I had a blast talking to Tom and Courts and then had a bit of a cry talking to Mel. These interviews are a strange thing, sometimes it is all fun and jokes, and in others they pull on the heart strings, and you never know what it is going to be, then it all happens so quickly that you hardly have time to process what has happened until much later.

Sam was funny when I met up with him just before the hot 100 interview, and the look on his face when he saw me told me how terrible I still looked, then when we were on air he tried to explain how he felt in that moment when he saw me and he said that I looked like a Christmas tree with all the tubes hanging off my arms and diodes stuck all over me. He has never been good with hospital stuff, and times like this remind me just how hard he finds all things sick and hospital. He really is facing his fears in so many ways on this journey, and his fear of hospitals is one of the biggest ones. He is a brave man, and so strong the way he is embracing the challenges along the way, and also trying to be supportive of me while I am in hospital and not at my best. 

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Connie's Diary: Off to Darwin

Sam is approaching Darwin and I am off to meet him there. I am a bit worried about this trip. Before launch in February I was so much more energetic than I am now, and I was able to run on adrenaline and sleep after it was all over. When I went to visit Sam in Adelaide it was the same – even though I was clearly still not in full health I was able to go to all the events and managed to get to all the media. After launch in Melbourne, and the Adelaide visit I slept for 2 days solid, waking to eat and take medicine, then going straight back to sleep. But I was still able to go, and to work while I was there.

I am concerned that this time I won’t be able to muster up any energy to get involved and do the work I want to do while I am there, I am so tired it is hard to describe. Hopefully the energy will come from the excitement of it all and I can sleep it off later.

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Connie's Diary: Thank you Bella Bleu

Bella Bleu putting the smile back on my face

I have been down in the dumps lately, and what better thing to cheer a girl up than a new frock? Karen from Bella Bleu first came on board to help Love Your Sister by donating a percentage of sales to LYS from her ‘Bella Bleu’ boutique in Moonee Ponds in Melbourne where she sells her beautiful designer dresses. Through her fundraising campaigning campaign she raised over $300 for LYS, but she wanted to do more! Very generously she has also offered to dress me for my events for Love Your Sister in dresses that I will feel comfortable wearing – without my prosthetic boobs! She came equipped with a variety of dresses in a variety of sizes, and did a styling session with me. Karen was so thoughtful, she chose styles that don’t have darts for the breast area, and wouldn’t have spaces that would sag if I didn’t wear my fillets. She came with an great selection – and then, amazingly, gave me one of every dress that I liked! I felt like the queen or a film star, with a new dress for every day of the week. And all of them I can wear without my prosthetics, and I feel so beautiful and elegant in them. Thanks Karen!

For any women reading this, who have ever wondered about how it might feel to have a mastectomy, I can’t speak for all mastectomy patients, but for me personally I went through I bad stage of self-consciousness because of my new shape. My oncologist said that plenty of women are flat chested, like Kiera Knightly for example, and she is still beautiful. While my doctor may have been trying to make me feel better, it didn’t work, because I know what it is like to be flat chested as I was a very late bloomer, and was very skinny as a teenager, and was flat chested. I didn’t really develop until I was in my 20’s and put some weight on. So I know what it is like being flat chested – It is completely different to having no breasts AT ALL – and no muscles – and no nipples. It has taken some getting used to, and I still feel funny about it. Since I had my operation 2 ½ years ago I have been shopping once, that’s right, once. I have trouble finding clothes because women’s clothes are made with saggy areas in the front to accommodate boobs, so if you don’t have any, shopping becomes a nightmare.

Karen has come into my life and saved the day! She has shown me that there are elegant clothes available, and that I can feel like a million bucks without having to wear stick on plastic boobs that hurt like a band-aid to pull off, with big cumbersome mastectomy bras that cut off the circulation to my right arm. I can be comfortable – physically and emotionally, and I can look great. Thanks so much Karen and Bella Bleu for these beautiful frocks, but more importantly for making me feel beautiful, just the way I am.

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Connie's Diary: Lethargy

Lethargy

I am in the 2nd week of my chemo holiday (that’s a break from chemo). I am probably expecting too much, but I was hoping to feel better by now, I guess I just have to be patient, hopefully as my body has more time to recover I will start to feel a bit more energetic, and won’t be needing to sleep as much. Fingers crossed.

Why aren’t you in bed Mummy?

You know that you are sleeping a lot if you’re kids ask you why you are not in bed when they get home from school.  Hammy walked in after school yesterday and said, ‘Hi Mum, why aren’t you in bed?’ It was such an innocent question, as most things they say are, but for him to think it was unusual for me to be awake, so much so that he asked  a question about it, it really highlighted to me how much I do sleep, and how much of my kids’ lives I am missing while I am sick or tired. The poor little kids, they just expect not to see me after school. They just expect that I am going to be too sick or tired to get up and play with them. I wish I had more energy for them, to enjoy more fun times, play, and even more homework time with them.

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!