Hope always,

I gave up on my childhood friend Melissa Baker back in October 2014. I had driven a few hundred kilometres to see her face to face after some worrying online conversations.

Mel was diagnosed with Hodgkin’s Lymphoma exactly six months after my breast cancer diagnosis back in 2013 and began writing the blog I Got The Good Cancer.  We referred to ourselves in jest as Kylie Minogue and Deltra Goodrem, Australian popstars that shared our cancers. We joked that there was something toxic in the school playground we shared all those years ago.

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I’m just starting chemo, Mel yet to know she has cancer early 2013.

When I arrived at her home and walked up the stairs to her front door, I glimpsed her through the window. Her skeletal frame took my breath away. With the spark gone from her eyes and plagued with respiratory infection after infection, Mel had no immune system and no further treatment options offered to her.  I honestly started to grieve for her demise.

This 39 year old, brilliant forensic pathologist and single mum to two beautiful kids had so, so much left to contribute.

I cried all the way to her house and all the way home from that visit. By the time I reached my city, my eyes were so swollen I could hardly see the road ahead.

When Mel’s treatment team gave up on her she sacked them and moved to another Melbourne hospital. Her new hematologist was at the forefront of a melanoma drug trial to treat lymphoma and Mel ensured she was the first Australian on that trial.

Not content with this last attempt to save herself, she has worked tirelessly to advocate for other lymphoma patients who are in the same dire position she was. She helped recruit and connect patients to the trial who had been offered no hope, and has given them much more time with their families. She no doubt will one day be credited with being the integral link that alongside the drug and doctors, saved their lives.

Two years on, Mel is in remission, and as she approaches the last eight months of the trial. she doesn’t know what the future holds beyond it. The drug is so new no one is able to yet talk of it as curative.

Mel is unbeleiveably relentless in her quest to raise enough money to fund the first specialist lymphoma nurse for Australia’s fifth most common cancer in which 5000 new Australians will be diagnosed with the next 12 months.  By comparison, The McGrath Foundation for breast cancer currently has 110 nurses nationally supporting patients and their families.

I’d like to sincerely apologise to my friend for prematurely losing hope. The lesson here is there is ALWAYS hope.

Love and hope always Mel,

Lise x

Mel will host a fundraising event dubbed “Not Your Average Trivia Night” at Frankston RSL’s Simpson Room on Friday, November 11, from 7pm.  The event includes live music, three course meal, raffles, silent auctions and more. Tickets are $75.

For details, email igotthegoodcancer@gmail.com

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Read all about Mel’s courageous story in print here.


Goal Shooter

I Got The Good Cancer Oh no you didn’t!

Who would have thought when my long term school friend Mel went and copied me and got cancer in the same year as me, both in our thirties and each of us with two very young children, that we would joke about who had the good cancer?

We also joked we were the 2013 version of Delta Goodrem and Kylie Minogue, stars who have survived the very same diseases we have been brushed with.  To date, that Delta and Kylie blog post I wrote on learning of the devastating news that Mel had been diagnosed with Hodgkin’s Lymphoma, still makes me teary.  Especially since a third friend of ours, who is also in her thirties with two very young children has been diagnosed with Hodgkin’s Lymphoma in recent weeks.

The real Kylie and Delta. Survivors of breast cancer and hodgkin's lymphoma.

The real Kylie and Delta. Survivors of breast cancer and hodgkin’s lymphoma.

Cancer competitions and jokes aside, we have always understood that there is no good cancer, and Mel made this point very early when she created her blog titled “I Got The Good Cancer” in jest.

Now, Mel needs our support!

Her fifteen months of gruelling treatment has not been successful to date after a year of different chemos and a stem cell transplant. There is a wonder drug that could clear her of this disease, but it’s not yet on the Australian PBS unlike the UK and Europe where it is readily available.

Mel will have three cycles of a drug called Brentuximab at a cost of $10,600 dollars a cycle and will then be scanned to see if Brentuximab is moving her towards remission. If so, she will need a full course of sixteen cycles at a cost of $169,600 dollars.

Mel has always aimed high in life and has for months been recruiting people to join the bone marrow registry worldwide. She is aiming for 100 new donors to sign up and is a quarter of the way there. She also helped to raise over $71,000 dollars for my treating hospital for women’s cancers despite her going through treatment herself and not having a women’s cancer. That’s the sort of selfless individual she is.

So lets help this Goal Shooter get to her goal!

Any funds raised in excess of funding Mel’s treatment with this drug Brentuximab will be donated to Lymphoma Australia, who supports research into one of the fastest growing cancers in the western world.

You can donate by clicking on this link  https://igotthegoodcancer.everydayhero.com/au/melissa.  Donations are tax deductible to Australian residents. Also if eligible join the Bone Marrow Donor Registry in your country, and think about donating blood.

Here we are in together in 1985 and in 2014.  Twenty-nine years on, Mel is still a goal shooter, just not in a netball sense!

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Useful Links

Melissa’s story   http://www.everydayhero.com.au/event/igotthegoodcancer

Australian Bone Marrow Donor Registry    http://www.abmdr.org.au

Australia Red Cross Blood Service     http://www.donateblood.com.au

Lymphoma Australia           http://www.lymphoma.org.au


Tribe

My dear friend Mel from the blog I Got The Good Cancer (Good cancer, my arse!!!) who has spent a year being treated for Hodgkin’s Lymphoma, has had to postpone several holidays to Bali and New Zealand because of her treatment. After three kinds of chemotherapy over twelve months and a stem cell transplant, this time she was steadfast in her decision to take a trip to Bali in August. Nothing was going to stop her.  She had had one doctor tell her not to go to Bali, and the head of her treatment team tell her that she should. Before she left she topped up with several units of blood.  And like everything that has happened so far in Mel’s “adventure” with “The Hodge”, a big hunk of Mel’s family jumped on board with her. Before she knew it she had over twenty family members on their way to Indonesia.

In the lead up to this trip, across several conversations I had with her, Mel had stated that airfares to Bali were on sale.  She is quite effective at sliding ideas into peoples subconscious without them having any recollection.  And late one freezing cold, frosty evening,  I decided to have a look at just how discounted airfares were.  The next thing I remember was holding my credit card and reading my airfare itinerary.

Often the best decisions are the spontaneous ones, as what transpired was the best holiday I have ever had.

Kutu our driver.

Kutu our driver. Or was it Putu?

Late at night a few minutes from landing, our three year old finally fell asleep on the plane. This turned out to be a very fortunate thing, as we were escorted to the front of excruciatingly long airport customs queues by officials because Mr Cool was carrying a sleeping baby.  As it turned out, we were first through customs and first to get our luggage. And as we made our way out of the airport and met our driver amongst a see of drivers holding signs, our threenager woke up and we high fived and laughed about our good fortune.  Mel had arranged a sign for us and the driver had done a beautiful job in the writing.

For me, the most special aspect of the whole holiday was being witness to Mel’s family unit.  With Mel at the centre of the circle, there with her children, with her Mum who sacrifices so much to be there for Mel and her grandchildren, and her beautiful sister with a penchant for shopping, with her awesomely athletic and gentle natured brother in law, her gorgeous curly haired nephew and ever so quiet niece.  And there, was her Dad that stood around silently on the outside of  group congregations a bit like a Kalahari elder.  His tall lean physique and his silent presence, just lingering there in the background. And then there were the aunties (which are technically second cousins) the vivacious, hilarious women full of spirit and love. And some of their family connections, children and a husband.  And the bubbly best life long friend of Mel’s Mum. Unfortunately we had just missed Mel’s older brother and sister in law and their kids who left Denpasar just as we arrived.

Being witness to this kind of family unit was quite the privilege. It’s the closest thing to a traditional indigenous family unit I think I have ever experienced in this modern world. A real tribe of sorts. There is no denying that this family is a very tight unit. There is a lot of love and they have each others backs when it counts. And yet Mel’s family embraced me and my family as one of their own, pulling us into their tribe as well. Even referring to me as the fourth sister. (Which absolutely delights me since I never had a sister of my own).

Sisters

Sisters

Bali provided us with an experience filled to the brim with the island’s rich cultural heritage and incredible volcanic and coastal landscapes. The time there was filled with sensory delights of sights, sounds, places, history, religion as well as the beautiful Balinese people we met. It had been many years since I visited the island.  The issues of poverty in some of the regions were confronting. So too the issues surrounding population increases and migration from other parts of Indonesia as people search for a better life for themselves.

There was a huge amount of joy for me in sharing such an experience with my children and partner. And I hope to do a lot more travel soon. This holiday helped bring into my focus what is important. It also showed me how important a change of scenery is to facilitate a change of perspective. It reminded me that living in the moment is all we really have. So no point not immersing oneself in it.

And all the while, humming away in the periphery of our experiences and thoughts is the questions around what lies ahead for Mel and her family. At the conclusion of her trip she will head back to hospital for a PET scan to see what has changed since prior to the stem cell transplant the month earlier. One thing is clear, everyone who knows Mel is hoping, praying, and wishing the news is good.

Thank you Mel, for sharing both your family and your Bali with us. x

Thank you Kaz for collecting our mail. x

Independence Day Ceremony in the lane

Independence Day Ceremony in the lane

Kintamani farmer

Kintamani farmer

Panang Panang play

Padang Padang beach play

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A shopping trip

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School's Out

School’s Out

Javanese family

Javanese family

Rice farmer

Rice farmer

Kintamani stall

Kintamani stall

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Beach play

Beach play

Yum

Yum

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Rice Bandit

Best foot clean ever!

Best foot clean ever!

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Sunset over our red centre to conclude our time in Bali. Massive thanks to all of the family for their love and contribution in making magic memories.


Sucker Punched

Some of you will be following my school friend’s excellent blog called I Got The Good Cancer which details her experience as a Doctor with a Hodgkins lymphoma diagnosis. Where breast cancer has thousands of disease blog writers, Hodgkins Lymphoma bloggers are far fewer in number. 

I was hoping, as everyone was that Mel’s triumphant journey at beating Hodgkin’s Lymphoma was nearly complete.  But today she received results of a positive PET scan after six months of chemo, and after speaking with her on the phone I was a lost for words.  I didn’t know what to say to her apart from “I am sorry”.  In the course of our conversation I said some ridiculous things…

“You will get through the next phase!” and “Wow you might lose your hair with a more severe chemo and end up bald like me!”  or ” Gee that cancer card can really get a workout now!”

How very lame of me! And since I actually had cancer, you would think I would have an inkling of what to say at times like these. But no.

To be honest, I was in a bit of shock and wandered aimlessly all day. I felt sucker punched. Gutted for her. Disappointed. Angry. I felt the urge to get in my car and drive several hundred kilometres with my kids to her house which wouldn’t have been a useful thing for anyone.

I can’t help her process this news or take away her disappointment.  It’s not my cancer journey.

I never had to have an MRI or PET scan to see if the chemo I had was working or if the cancer was gone at the end of treatment. In Breast Cancer land, once treatment is finished you are sent on your merry way. Slice the cancer out, then treat with chemo and rads.   Come back if you feel unwell or have symptoms for more than two weeks they say.  Sure, there are the regular checkups with oncologists and surgeons just to see if your okay, listen to your lungs, feel the lymph nodes around the armpit and neck area, but thats about it. For many, there is massive anxiety when this active phase of treatment ends.  For months you just stumble around trying to come to terms with what has occurred and what lies ahead scared by every little symptom. Then it settles down and you get on with life.

But with Hodgkin’s Lymphoma the treatment course is quite different depending on the stage of disease and the presence of symptoms, with regular PET scans to monitor if the chemo is working it’s magic and shrinking the masses.

It’s hard to imagine what it must be like to undergo six months of chemo and then discover it hadn’t worked as planned,  after your family and friends are willing the results to be clear.  In your heart of hearts you know that the metabolic activity of cancer will still be there because as an astute doctor you can feel the nodes in your neck growing.

Mel's crazy visitor with rainbow coloured t-shirts,  streamers

Mel’s crazy visitor with rainbow coloured t-shirts and streamers.


And while feeling and sensing that the results you want aren’t the results you are likely to get, you have crazy people turning up to your final chemo session to give you a handmade T-shirt with rainbow coloured letters with the slogan  “I kicked the good cancer” and then they throw streamers at you when the last drop of your chemotherapy goes in.  Celebrating the end of your treatment and wishing you well for the next 50 years.  Mel blogged about this final chemo session here.

And then… bang bang!  The PET scan which shows that there is still cancer active in your nodes and chest, with a week to wait to find out what the next plan of attack is.

So in light of the fact I couldn’t say or do anything useful today, and embarrassed at my last attempt at t-shirt design, I have made my way back to the t-shirt slogan drawing board. Some are inspired from points in Mel’s blog and could apply now or down the track when the fu*ker really has been obliterated.

Lisey’s Lame Attempt at Hodgkin’s Lymphoma T-Shirt slogans round two.

**Come to think of it, Mel might be the only one to smile at some of these.

“I kicked The Good Cancer, it just took me a bit longer”

“ABVD can kiss my grits!”

“ABVD ACDC for every dyslexic hemotologist” 

“BEACOPP.  Should have followed the German Docs the first time.”

“Forget pre and post menopause.  Menopause is now!”

“Anticipatory nausea, oops there it is!”

“My hematologist made me feel like I just had a cold.  Whose laughing now!”

“Self Diagnosers Unite”

“Sucker Punched”

“Nauseated or nauseous, which one are you?”

“Keep calm, It’s just a positive PET scan.”

“PICC Schmick”

“It’s my PICC line and I’ll swim when I want to, swim when I want to”

and for later in the year…

“I really have kicked the good cancer.  No really I have.”

In true form, tonight Mel is telling jokes and reassuring people,  which is what any strong, kick arse, cancer patient does.  It’s full steam ahead for Mel in the planning of our 60km walk in four weeks, like the true boss that she is.   Mel has put so much effort into arranging our team for the Walk to End Womens Cancers for Peter Mac and will potentially now be undergoing more treatment at the time of it.

I don’t care what the walk organisers say,  I will push her in a wheelchair the whole way if she is keen.  I’m even thinking of buying this contraption below which caused me to stop on the side of the road this last weekend for a geezer. I think it can be decorated in Priscilla Queen of the Desert style. There is even a roof for shade and a place to store chemo meds.  I might have to get the riders seat fixed though.

Love you Mel x

I saw this is for sale on the weekend. So will buy this and ride Mel the sixty km's if I have to.

If you would like to donate to The Good Tittie Team click here, please select and donate to a team member who hasn’t yet reached their $2,000 dollar target. We desperately need all members to get to that magic number in order to walk.

Many thanks to all that have donated so far.

The Weekend to End Women’s Cancers benefits the Peter Mac Cancer Centre.  It is a 2-day, 60-kilometre walk through the neighbourhoods of Melbourne. Money raised through participation in and donating towards the weekend will help impact the lives of hundreds of thousands of women and their families, here in Australia, and right around the globe. Peter Mac shares its research discoveries and its expertise beyond the benefit of patients treated at Peter Mac, to healthcare organisations and research institutes around the world.  For information about the Walk to End Womens Cancers benefitting Peter Mac click here.