Photo credit Gina Milicia
I have never met or spoken to someone so young who has a terminal illness. I was a little nervous about interviewing Constance, I didn’t want to say the wrong thing, so I pretty much said this to her at the start of our phone call. Constance was lovely and made me feel comfortable straight away.
I felt privileged to talk to Constance, her attitude and perspective on life was inspiring and I have thought a lot about what she said since we spoke.
Constance was diagnosed about 2.5 years ago with breast cancer. This is not Connie’s first experience with cancer – at age 11 Connie, with the help of early detection and chemotherapy, fought off a very rare and aggressive bone tumour in her leg. At 22, she overcame a tumour in her womb, again with the help of early detection and treatment.
This time however the breast cancer has spread to her lungs, liver, pelvis, spine and knee and it’s terminal. Connie has a life expectancy of 6-12 months and she has two beautiful boys aged five and six.
Photo credit Gina Milicia
Samuel Johnson is Connie’s brother and a well known Australian personality. Known best for his roles in The Secret Life of Us, Crackerjack, Underbelly II and Network Ten’s Rush. After Connie’s diagnosis, Samuel spoke to her about what she wanted her legacy to be and told her of his wish to send her off with a bit of a bang. Connie gave him an extraordinary challenge, unicycling around Australia to raise awareness of breast cancer and raise funds for the Garvan Research Foundation.
The Love Your Sister challenge has been a couple of years in the making, but it is about to begin. Samuel is going to kick off his ride around the country on Friday 15th February at Federation Square in Melbourne. See more details at the end of this post.
I spoke with Constance for about half an hour and she shared her story with me and her hopes for Love Your Sister.
It was Connie’s eldest son, Willoughby’s 4th birthday, when she found out she had terminal breast cancer at the age of 33. Her oncologist explained the average life expectancy for metastasised breast cancer was three years, but she would be surprised if Connie would make it to the average, as her cancer was so aggressive.
Time was really put into perspective for me as a mother, when Connie said with such honesty that she was really grateful that she has had the last year with her boys. She felt she had been with them to an age where they would now remember her (Hamilton five and Willoughby six). She felt their memories would not just be from being told about her or memories from photos, but concrete recollections of a mum who loved them very much. This is something that has given Connie great peace, as she didn’t want to leave this world knowing they wouldn’t remember her love for them.
In the Love Your Sister diaries, Connie also shares the joy of seeing her youngest son start school this year, something that she didn’t think would happen. Her ability to be grateful for these moments is remarkable.
Don’t fall into the Booby Trap – Be Breast Aware!
Through Love Your Sister Connie and Samuel want to raise awareness of how important early detection is with breast cancer. The campaign has the slogan: Don’t fall into the Booby Trap – Be Breast Aware!
Connie’s diagnosis with breast cancer is unusual in that she felt for about a year something was wrong and there were lumps in her breasts. She saw a number of doctors who told her it was mastitis. Connie didn’t see how this was possible as she was not breastfeeding at the time, but she was informed you can get mastitis at any time. Connie had mastitis when she was breastfeeding and felt that this was different.
Eventually Connie was diagnosed with breast cancer by an oncologist, who did say it presented like mastitis, and she thinks she would have thought the same. There were 100s of little tumours along the breast ducts.
Connie reflected that had her breast cancer been diagnosed even six months earlier, it could have just been an inconvenience in her life.
While not an health expert, Connie is passionate that women regularly check their breasts and if you feel any lumps that you don’t think should be there, she urges you to have them checked out as soon as possible.
If you don’t know how to do a breast examination, book an appointment with a GP and have them teach you how to do it, even if you don’t think anything is wrong. This will give yourself something to compare to in years to come – it gives you a benchmark.
And Connie says talk! Talk to friends, family, aunts, nanas, nieces – have dialogue about checking your breasts. Pap smears are part of our life, and we have regular examinations, we need to do the same for our breasts. Examine yourself regularly, make it part of your routine. If you have a regular checkup with your doctor, include a breast examination with it.
Being a mum with breast cancer
As the breast cancer has spread through Connie’s body, it is in her lungs, spine, pelvis liver and right knee, she is in constant pain. The pain in the knee is the worst and the stairs from the lounge to the bedroom are difficult.
Connie is undergoing treatment and is in chemo cycle 23 of an oral chemo. There is no hair loss with this treatment but white blood cells go down and the fatigue is remarkable. Connies says sometimes she goes a couple of days all day ok, but then will need to sleep all day. On these days she may only be up for 3 hours then sleep again all night.
For Connie it is the fatigue which is disabling more than pain. She has a good plan for pain management. It is the day to day things of her life that are impacted. Her partner cannot work full time as there is no guarantee that she will be physically able to drop the kids off or pick them up on any given day. In many ways now dad has become the primary carer and has had to organise work around it.
Connie’s boys know that she has breast cancer. They know that some people die from breast cancer. They know that their Uncle Long Legs is riding around Australia, doing it for women with breast cancer and trying to raise money to find medicines for women with breast cancer.
When one of her boys said but “your ok mum, your fine” Connie assured them that she is doing everything she can to stay well. I think Connie’s answer to her son is amazing and would be such a hard thing to deal with.
Connie compared telling her children the whole story to a scenario of if you knew you were taking the kids to Disneyland in a year’s time. You wouldn’t tell them so far out, as time is so difficult for kids this age to measure.
Love Your Sister Challenge
Photo credit Gina Milicia
Connie has been spending more time recently on the Love Your Sister challenge as Samuel is about to start his journey. I noted to Connie that I found it inspiring that she is choosing to spend time on this to help others.
Connie said a year ago she couldn’t have done the travel, but at the moment she is doing ok. She has been lucky to have a cousin with lots of frequent flyer points, so she can fly to Melbourne from Canberra, as opposed to the long car drive. She also now has medications to make life easier, which she uses as she needs to.
Connie said she has made a conscious choice to spent time on the awareness and fundraising for breast cancer:
It is too late for me, I can’t turn this around, I can’t make this a curable disease for me. But there is something I can do to prevent families from having to go through this; to prevent other kids from having to say goodbye to their mum.
Family is still Connie’s priority and will continue to spend time on Love Your Sister as this allows.
Uncle Samuel’s journey
Samuel’s goal for the journey is to:
- Travel over 15,000km. It’s not a straight, or round trip, but it will take Samuel to some of the most beautiful and harshest parts of Australia.
- Set a new Guinness World Record for the most distance travelled on a unicycle
- Raise $1 million
- Spread Connie’s message of breast cancer awareness.
Uncle Sam told Hamilton that he has a broom which can fly – Hamilton believes him. They think unicycling around Australia is just something else special about their uncle.
Connie would like to catch up with Samuel on his journey but that will depend on her health and scheduling. Connie has to stay near a major hospital, but if it works out that on school holidays, he is near a major city, then she would like to go and visit him.
But they will be in constant contact. Vodafone are sponsoring the journey, so Samuel will have mobile broadband skype. Pivotel are also helping out and will be providing satellite communications through remote areas.
Supporting Love Your Sister
The Love Your Sister campaign has garnered the support of a number of companies which will help them work towards their goals. The Bendigo Bank came on as a supporter early on, for which, Connie says they are very grateful. Having a major trusted brand on board, helped get support from other companies.
Others to provide support have been Jayco, providing a caravan which will be Samuel’s home throughout the journey and Justine from The Village Agency who has helped people trust their brand. The online experience has been a massive learning curve for Sam and Connie. Connie says she has found it exciting that people are really connecting with their cause and loves getting feedback through social media.
You can support Love Your Sister by donating either:
IN PERSON: At any Bendigo Bank branch
VIA PHONE: 1300 73 66 77 (9am – 5pm AEST)
Accepting Mastercard, Visa and American Express
CHEQUE OR MONEY ORDER: Made payable to “Garvan Research Foundation – LYS” and free postal to
Love Your Sister
c/o Garvan Research Foundation
Reply Paid 68593
DARLINGHURST NSW 2010
BSB 082-057 Account 13 117 2929
Garvan Research Foundation – Love Your Sister account
*Please use your name as ID for this deposit.
All donations $2 and over are fully tax deductible
Love Your Sister Launch
It will be concluding with Samuel riding off the stage, through a human tunnel and out of Federation Square at 12:45pm.
Head along to support him, Connie and Love Your Sister and wear pink!