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.

10406628_10154559694735252_2263067488766700552_n

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

This slideshow requires JavaScript.

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!

IMG_1175

IMG_9938

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

IMG_8793

IMG_9330

A shopping trip

IMG_9287

School's Out

School’s Out

Javanese family

Javanese family

Rice farmer

Rice farmer

Kintamani stall

Kintamani stall

IMG_8740

Beach play

Beach play

Yum

Yum

IMG_9300

Rice Bandit

Best foot clean ever!

Best foot clean ever!

IMG_9278

IMG_9394

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.


Just call us Kylie and Delta

I’m sorry! I have finally reached the point that I might need to start drafting invites to my pity party. You were all expecting it at some point. Go on, admit it! Anyone want an invite? It’s guaranteed to be a blast. You all come over and we sit around in the dark. There is no food or alcohol, just a bald head with a eyebrow-less and lash-less, solemn, podgy face. There will be no music and no dancing as 95 year olds filled with chemo induced arthritis don’t boogie. Though there will be some empty, scattered pain med packets and the sombre host will very likely be dressed in pyjamas. Except don’t go thinking it is a pyjama party. It isn’t. Finally, when you are so bored and depressed that you just can’t stand it anymore, you can leave. Yes, the most anticipated party of 2013 is coming!

I’m 7 months into treatment which has (in no particular order) entailed; 3 mammograms, 4 ultrasounds, 2 core biopsies, 1 sentinel node biopsy, a full clearance of 21 lymph nodes from my armpit, some serious cording complications, 3 chest X-rays, 2 full bone scans, 1 chest abdo CT scan, 18 blood tests, 6 rounds of chemo, 1 lumpectomy, 1 mastectomy, countless dates with the surgeon, psychology visits, physiotherapy, tears, pain, 50 odd empty pill canisters, a bucket load of laxatives, tissue expanders, scars, nerve damage, grief, loss, ongoing (worst ever) spinal pain that has held me hostage for five weeks and caused a decline in my mental wellbeing, and a partridge in a pear tree.

I’m feeling like I have hit rock bottom with this. And I’m hoping I have as I can’t imagine it getting any harder. Though life is full of surprises right?

I am mindful of the procedures that still lay ahead… another mastectomy and reconstruction with implants in 9 days, and 5 joyous weeks going to the radiotherapy barbecue. I’m even getting some black radiotherapy tattoos even though I HATE tattoos, on my chest of all places. All of this is to be completed by mid October, in time for 5, maybe 10 years of hormonal therapy. But that’s enough about me, even I’m tired of listening to this situation.

Interestingly, none of this last crazy 7 months of treatment has affected me, made me more shocked, angrier or sadder than the out of the blue message I received nearly four weeks ago.

Hi Lisey,

Are we still competitive in adulthood like we were in primary school? I have pretty much been diagnosed with cancer today. Will have a biopsy soon to confirm what we already know. Not in the boob though, it’s lymphoma.

So, do I win because it’s probably a better cancer to have? Or do you win because you will endure so much more? I’ll get away with one tiny incision to remove a lymph node! I think you are the winner.

At the moment, I’m hiding away not wanting to talk to anyone. Did you go through that? I hope so because I am hoping that phase passes and I can be even half as courageous as you.

Maybe there was something in the water at our Primary School. The timing is pretty unbelievable!

Hope you’re well and through or nearly through your chemo. We will chat soon I’m sure. Probably no work trips to your town in the near future but hopefully we’ll catch up to compare head scarves or something.

I hope we can both grow old and look back on what a crap year 2013 was!

M
xx

This is someone who has been a great emotional support to me since January, visiting me in my home town through my treatment several times despite living several hundred kilometres from me. We reconnected this year and I have even blogged about her several times… the genius forensic doctor who I have written about here has devastatingly joined the cancer club, the club membership that noone wants or deserves, where memberships are randomly chosen.

What are the chances that two girlfriends who met in grade five at primary school and went all through high school in the same class, played tennis and netball together, would get diagnosed with cancer in the same year in their thirties, six months apart to the day?

As I am finishing chemotherapy, she will begin a gruelling six month course of fortnightly visits to her chemotherapy ward. I still cannot comprehend it and yet I know she has already started walking down her long chemo road. As my hair begins to grow back as cat fur, hers will just begin falling out. As I move out of the chemo brain drain and pain game, she is just being sucked in. Hard to comprehend really.

How will this news feel to our mutual friends? To the people we went to school with? Is this the beginning of a cancer cluster? Or is this just what happens as we age and we are somehow the chosen ones of an umbrella of diseases that claims the most number of Australians than any other?

This is us in the late 1980’s, a carefree time of long white socks, boyfriends and perms. Wait, I never had a perm cause I never went to the hairdressers. Fast forward nearly a quarter of a century, and that kid between us might be shocked to learn that the two chicks on his left and right got cancer in their thirties.

This predicament has unsettled me greatly. Since January I have firmly stood at the centre ring as “cancer patient” in my own crisis. The road has been lonely. Now, I am joined by a friend. While still being treated for cancer my role and perspective has had to change, I need to put my feet outside the circle to make room for someone else’s crisis and be of support to her. I feel helpless and I wish I could do more. I worry about what to say. I think about how can I best be of support living so far away? Should I even complain about my own predicament anymore? We text often.

I’m beginning to understand the impact of cancer from the “outside looking in” as all my friends and family have experienced. I’ve been so blindsided by my own diagnosis I hadn’t really considered the impact that this year has had on my own friends and family who have watched me struggle and change, have watched me lose my hair, and put my dreams on hold while this disease makes me pause my life for a year of treatment. It’s not just about me anymore. We all have struggles. My friend’s diagnosis is teaching me so much already.

So to answer your question, “Are you the winner?” You were always the winner. You had the better fingernails, the better dress sense, better monkey bar skills, the better earrings, the better hair, better teeth, you were smarter, got higher grades, and had the conviction and drive to work towards a career that you had passion for. One of our close school friends, Bevan Lemon often laments that by his definition, you are one of the most successful persons from our school. But you have cancer now, so that might take you down a peg or two. I can’t wait to see what sort of magic comments Bevan makes as you lose your eyebrows! I kid, I kid.

So far, you have handled your diagnosis and treatment like a true champion and I wait with anticipation to see if you come up with a better blog. Or even if you’ll say, “fuck it, now I have cancer I’m joining Facebook!”

It will be hard for you in a way I have not experienced. Being a doctor means you can see the treatment path ahead. I was lucky, I was blissfully ignorant to the treatment realities. Your vast medical knowledge and experience means you are always a step ahead of your own doctors, accurately self diagnosing and being able to tell your team what tests you need if they even flinch for a second. You even have access to excellent friends in pathology and radiology to give you second opinions on scans and you were able to have your extracted lymph node hand delivered to your chosen expert. Though I’m surprised you didn’t run your own pathology on it. That would have really been something!

You will learn who matters and who doesn’t and what is important in this crazy thing called life. It will fundamentally change you to the core. You might start to reevaluate the relationships in your life as I have. You will learn that there will be times when you have to ask for help and you have to get people to look after you because you can’t. You will be surprised at the people that will be there for you and the ones that aren’t. You will learn to laugh at the stupid things people say or believe about why you got cancer, or how you got the “good cancer” and “how lucky you are”. Your children will be okay through it all. You will be surprised at how resilient they are and how strong you are.

But today, this doesn’t stop me feeling sorry for our 4 children under 6 years of age, and sorry for our families and friends and deeply sorry for us. Maybe a joint pity party is in order? Cancer sucks big hairy ones. Nothing about it is fair, or just, or rational. Nothing about it makes any sense and I am really sorry this has happened to you and your family. I would have preferred to not have had to share this experience of having cancer with anyone. But together, we will make the best of it.

photo-16

Just call us the new Delta Goodrem and Kylie Minogue. The unfortunate recipients of Hodgkin’s Lymphoma and Breast Cancer in 2013.

If I could say something to those two little girls back in 1985, it would be… in your thirties you will face a hurdle like no other, but you are both a formidable pair with a wicked sense of humour. You will get through it. It is true, it will suck dogs balls. Big hairy ones in fact. And it will be sucky and hairy for quite a while. No, not hairy, hairy is the wrong word given what chemotherapy does. But for some reason, your lives will be intertwined in such a remarkable way after many years of limited contact. For the girls in this picture, the year 2013 seemed so unimaginable, so futuristic that it was the stuff of science fiction.

And now here it is, 2013 with an almost simultaneous cancer diagnoses which could also qualify as the stuff of science fiction.

A strange Delta and Kylie duet of sorts.