Sunday, 28 June 2015

Give yourself a cancer diagnosis

And I don’t mean by looking up that weird looking mole on WebMD or a fake diagnosis like Melbourne’s Belle Gibson did. 

I’ve finished my seventh and final round of chemotherapy so have been reflecting on the wild ride that me, Nikki, and our families have been on since that wobbly walk home from dinner last October. Of course the diagnosis has changed our lives, and most of it for the worse, but there are definitely some things that I am thankful to the tumour for (I hope he is not reading this - I don’t want him to get a big head).

I know it is clich├ęd but the diagnosis made me realise and appreciate all of the wonderful things I already had in my life and to worry less about those that were not. At the top of this list is my beautiful wife Nikki, without who the past eight months would have been unbearable. Nikki has been there and borne the brunt of the worst of my treatment – she lost her husband for a while but now he is back. My gift to you is no more cleaning up my chemo vomit (and a trip to Paris this weekend). My diagnosis also brought out the very best in my friends. You are already familiar with the heroics of Nik and Stephen and two weeks ago my MBA mate Julian Delamer generously launched a
fundraising campaign in tandem with his first assault on a marathon. Good luck with the marathon buddy - Nikki and I hope to be cheering you on at the finish line in Berlin.

Julian (second from right), me and classmates at the Forbidden City on our MBA trip to Beijing

I have also found yoga and meditation. One of the practices of yoga is called Sankalpa which means to draw on our deepest intentions, and the qualities of the Divine within, to commit to a course of action above all others. My inspirational teacher Julie (herself a cancer survivor) asks her students to recite their Sankalpa to themselves three times as a part of our practice. My Sankalpa has not changed since week 1: “to grow old with Nikki, live life to the fullest and to die of old age”. In the past few weeks I have become a Battlestar Galactica junkie. While it is a sci-fi show with worse action scenes than a low budget direct-to-TV movie, I enjoy its reflections on what it means to be human. In the immortal words of Commander Adama “Because it's not enough to just live. You have to 
have something to live for.” Adama must have been a yoga devotee long before he got a taste for killing the cylon “toasters” (the baddies).

Finally, my diagnosis has led to me revaluate the career that I was chasing. I started my MBA in 2013 with the intention of moving into private equity / venture capital in the clean technology industry. I have since decided against this option because if I’m being honest with myself I don’t think it would get me out of bed in the morning. I love cleantech startups and working in sustainability but the culture of private equity is not for me. I don’t think I would have been that honest with myself in the absence of a cancer diagnosis. Who knows how long I would have gone down that unhappy path for before I made such a realisation. At the end of the day I want to come home and be proud of the work that I’ve done and to enjoy the company of my peers.

So, tumour: I love you and there are many things I am thankful to you for. But you picked on the wrong guy so can you please "frack off" (for the uninitiated, that was another sad Battlestar Galactica reference - what have I become?) and let me get on with dying of old age.

Wednesday, 3 June 2015

Light at the end of the tunnel

I’ve just spent a lovely couple of days with two new ladies in my life, Pip and Poppet.  I have started dog sitting for people in the local area, finding pooches in need of daytime attention via  Apparently spending time with dogs is supposed to be great for cancer patients – how could it not be? It gets me out walking during the day and they are two comical characters who always making me laugh.
Poppet took this photo

Pip is of a younger generation and so better at taking selfies.  She used a selfie stick to take this one.
I’m coming up to my last round of chemotherapy which makes me equal parts happy and fearful.  Happy because at the higher dose the chemo is really making me feel ill – last round I had 12 ‘chats’ to the toilet in one night.  And fearful because it is the end of my formal treatment and if the tumour hasn’t responded (either stabilised or shrunk) they will start me on not one but three different types of chemo for who knows how long.  I won’t know whether it has really responded until I get the results of my next MRI back sometime in July but a little voice inside me says it has (I hope the voice is not that of the tumour).

The recent months have given me cause for hope with new announcements being made about “breakthrough” treatments.  One Duke University study showed that giving patients a modified version of the polio vaccine can delay and even prevent tumours from re-growing.  Another trial showed that instead of opening people's heads up during surgery and putting them back together with titanium plates and screws, which has left me with what feels like a lunar surface for a skull, surgeons can use a catheter to directly access the tumour and directly infuse a radioactive isotope. The isotopes are enclosed in fat particles that stabilize them and keep them inside of the tumour. 
Finally, a cure for blue skin

A third development is that of a new drug called Rindopepimut, which sounds like a German dessert that I don’t want to eat.  The drug company, Celldex, just released really promising results from their phase II study and have decided to make it available to patients, before it gets regulatory approval, through a free compassionate access programme.  Drug companies sometimes do this if they want more patient data and to get doctors aware of the drug and used to prescribing its use.  The drug targets a specific mutation that I have tested positive for – it is a mutation associated with shorter survival times so it is important to have it treated. 

I feel more confident than ever that I am going to beat this thing with my combination of chemotherapy, surgery, radiotherapy, ketogenic diet, re-purposed drugs, vitamins, meditation and healthy lifestyle (if you can call lawn bowls that given how much tea and biscuits they throw down) and these new developments.  “When the going gets tough, the tough get going,” as Billy Ocean would say. 

Some of the developments may involve travel abroad which will only possible because of the super generous donations that have been made to the Gofundme campaign that was set up by Stephen and Nik.  At the risk of repeating myself, thank you so much to everyone who has contributed.  Cue “Wind beneath my wings” (the Bette Midler version, of course).