Travelling through the UK and Europe in November 2006, it was cold as you would expect that time of the year and I picked up a respiratory infection, that to say the least, was persistent. After returning home and multiple packets of antibiotics, which seemed only to take the edge of the infection, a blood test revealed some abnormalities.

I was diagnosed with Acute Myeloid Leukaemia (AML) in the week before Christmas 2006; as a fit and relatively healthy individual this came as a shock. I failed induction chemotherapy and progressed to an Allogenic Bone Marrow Transplant on 5 April 2007 with my brother, my only sibling, as my donor.

Pulmonary Graft versus Host Disease has diminished my lung capacity significantly; long term steroids depleted my muscle tone developed previously from being a daily walker. Other things changed in my life, my ability to work full-time and fatigue like l had never experienced, to mention a few.

Today my efforts are directed to returning to my previous level of fitness through walking and gym, working part-time and most satisfyingly using my Blood Cancer experience in my role as a Consumer Representative to ALLG.

In addition to activities with ALLG, I also work with Cancer Australia, The Leukaemia Foundation, The Alfred Hospital and the Walter & Eliza Hall Institute as a Consumer Representative.

I find it most satisfyingly using my blood cancer experience in my role as a Consumer Representative to the ALLG. The contributions I make to the ALLG are many and varied and are done in the hope that, through my experience, patients diagnosed with a blood cancer travel that well-worn path just a little bit easier.

As a result of my employment l became familiar with reviewing and understanding clinical papers, trials and studies. I have participated in many clinical trials as a patient through my treatment for AML and understand the processes and follow-up required from patients.

The benefits of participating in Clinical Trials are many and varied. Importantly, often participation in trials allows patients access to drugs used in combination or prior to their general availability. The drugs and protocols offered to patients during clinical trials come at no cost.

Participation in trials may give some patients opportunities and hope, that may not have been accessible otherwise. It also means regular and careful attention from health professionals associated with the trials, in addition to the care offered by a patient’s own specialist team. Contributing to research today in this way, may also mean saving lives in the future and giving hope to other patients.

All of this would not have been possible without the care I received from my own specialists, family and friends whose unflinching support during this difficult time, never wavered.

In February of 2010 I was snow skiing in Japan, I had lost a bit of weight before the trip and was feeling fatigued a lot but like most men blew it off and didn’t go to the Doctor when I should have.

On the last day of our trip I had a fairly decent stack on a steep black run and managed, I think, 2 or 3 cartwheels beating myself up pretty good. Back home and the bruising was starting to go away but I had a severe pain in my stomach which was getting worse, I finally made an appointment with my GP for the following week but never got there as the pain become so bad I went to the Emergency room. White cell count was through the roof and the pain was found to be from a very enlarged spleen.

Initially I was told it was Chronic Lymphatic Leukaemia (CLL) but after more tests a confirmed diagnosis of Mantle Cell Lymphoma (MCL), stage 4, which was the scariest news of my 44 years.

I had no idea what Lymphoma was, much less this rare sub-type and of course Dr Google gave me the worst prognosis possible. I went straight into Nordic Protocol chemotherapy for 6 months of hell before getting my first remission. At first remission we harvested my stem cells in case a future Autologous Stem Cell Transplant (SCT) was required.

In remission I tried to go about my life, but MCL is a nasty one that is known to relapse, and sure enough in July 2011 I did relapse. Straight back into Chemo hell and my haematologist gave me the worst news after 2 rounds – the disease was becoming resistant to the treatment and it was recovering between chemo rounds quicker than I was. Time for the heavy artillery and I underwent some really horrible treatment, I spent long periods in hospital much of which I can’t remember but I am told I just laid there moaning a lot, I lost a third of my body weight but eventually achieved a second remission and had the Autologous SCT. I got out of hospital just in time for Christmas 2011.

At my monthly checkup in May 2012 I got the best news ever, a matching bone marrow donor had been identified on the international donor registry and given my resistance to treatment it was strongly recommended I have the transplant without delay. I had my Allogenic SCT on Friday the 13th of July 2012.

When I had my 50th Birthday, it was a milestone that if Dr Google was to be believed I should never have reached. July [2022] marked the 10th anniversary of my life-saving bone marrow transplant. It was my only chance after the initial treatment had failed.

Life is good now, and I am living it. When I returned from another skiing trip in Japan,  I had completed that steep black run again without a fall.

I now also have another wonderful annual event to celebrate – my wedding to my love Tracy that was in March [2022].

Now I feel like I need to give something back. I’ve been doing some fundraising, and a little public speaking for Lymphoma Australia, which has led me into ALLG where I am hoping I can do some more good work and help others get through it a little easier than I did.

In 2005 I was diagnosed with acute myeloid leukaemia and between chemotherapy and a stem cell transplant I spent five long, hard months in hospital. It was an overwhelming time physically and emotionally and I was extremely happy to finally come back home to my husband and young children.

My hope is that the journey will be easier for each person diagnosed with blood cancer. That’s why research is so important. If I have had AML 30 years earlier it would have been a death sentence, but research has made survival not only possible but has improved survivors’ quality of life. Hopefully in another 30 years’ time a blood cancer diagnosis will just be a minor inconvenience.

You always remember the date of diagnosis – it is a bit like a birthday – it comes around every year. So, the 2nd December 1999 remains embedded in our lives. I was told that I had Chronic Myeloid Leukaemia.

From a small eye infection which did not respond to anti-biotic cream – so after 2 weeks I had a blood test and bingo, 2 days later found out I had leukaemia. In hindsight, I did have bruising, was very tired (but working in a cafe and catering company) I thought tiredness went with the territory.

A bone marrow extraction confirmed the diagnosis.

The feelings at diagnosis are common for all cancer patients – shock, horror, why me – my wife cried in the arms of the haematologist, we drove to a park and I lost it!! I did not really feel sick and certainly did not look sick! Not overweight, fit healthy, and in fact a bit guilty that I had such a serious disease with little or no symptoms and certainly no visual signs!!

On 1 March 2001 I underwent a Bone Marrow Transplant – my donor was an American woman.

Today, I do feel physically and mentally great, back in the gym, have muscle, am fit and healthy, but I do suffer from some peripheral neuropathy in both feet which affects my balance slightly. But after all that my body has endured, this is “small fry”.

As a former cancer patient who underwent a clinical trial, I now see it is as my job to promote, engage and encourage access to cancer research and clinical trials.

My goal and focus is to ensure that cancer patients and their families’ word is heard and delivered at the highest government level. My other priority is to ensure politicians are aware that a lot more can be done at little or no cost to improve the lot of cancer patients!

I am a committed and passionate advocate for people affected by cancer as a regular speaker at medical conferences and seminars (nationally and overseas) on cancer policy, advocacy, clinical trials and related issues. I contribute to booklets and research papers as an Associate Investigator, edit consumer booklets for the Cancer Council and advise on government policy on cancer, cancer services and the value of consumer involvement.

It literally came out of the blue. I was on the golf course in mid-July 2022, when for no apparent reason, I started to limp. This set off a chain of events which took me to my GP in mid-August via my physio who eventually suggested I go and see a doctor. The GP immediately sensed something was amiss.

After being referred to a urologist to assess for suspected prostate cancer – the hip bone is one of the more common areas prostate cancer metastasises to apparently and also my GP was concerned that the limp and pain came on so suddenly – the urologist ruled out prostate cancer and I was sent for further scans.

Finally on Friday, 2 Sept, 2022, I received a call from the Doctor’s surgery to come in for a consultation. I knew something was seriously wrong when they asked me to “bring some support”. That evening, with my wife Sarah sitting beside me, my GP informed me that a tumour had been discovered in my right acetabula. I remember going numb immediately and literally thinking this was a bad dream from which I desperately needed to awaken.

Unfortunately, there was no waking up from this nightmare. Things moved quickly from there on and after seeing an orthopaedic oncologist, I was referred to a haematologist, Professor Christina Brown, at Royal Prince Alfred after a bone biopsy came back diagnosing a blood cancer. A PET scan also revealed the cancer was at Stage 4. I was told by Professor Brown that I had Non-Hodgkin Lymphoma, and more specifically, the Diffuse Large B Cell subtype.

From a standing start, you find yourself learning very quickly about a disease you never thought you`d ever get! More blood tests and a lumbar puncture were ordered. Thankfully the lumbar puncture revealed that no cancer was detected in my spinal fluid. The blood tests revealed however that I was high risk as I returned an IPI score ( International Prognostic Index ) of 3. It was at this point that I was told about a clinical trial, The Coalition Trial, being conducted out of Prince of Wales Hospital by Professor Mark Hertzberg and that I should consider the trial as an option to the standard treatment ( R-CHOP ).

I was sent the Clinical Trial information sheet. It was quite the document. After my wife and I reviewed the information sheet a number of times and armed with a list of questions, we had a consultation with Professor Hertzberg. All our questions were addressed, and I decided the trial was for me. It was obviously the best decision I ever made because, while it is still relatively early days, I`m currently 17 months in remission.

My experience with going on a clinical trial was an extremely positive one. I honestly felt like I had a dedicated team around me 24/7. The trial nurse co-ordinators were fantastic. On a trial there is more testing than usual and so I was provided a schedule of when and where I had to be, be that for treatment itself, bloods or scans. Being on a trial made what was a very stressful time for both Sarah and I a little easier thanks to the added attention and focus one receives from some amazing medical professionals.

I currently still have regular follow-ups as part of the trial, and knowing I am in good hands and being monitored, this has given me peace of mind while I have recovered and allows me to just get on with the art of living life again. After such a positive experience on the trial, I wanted to get involved somehow and be an advocate for clinical trials.

I attended a Clinical Trial talk for patients co-sponsored by Lymphoma Australia and the ALLG last year. We were asked if anyone wanted to be a Consumer Representative. It was a no brainer and I duly put my name forward.