It’s been a long time since I have posted anything to this blog with my last substantive update on the 14th of December 2012.
Fortunately for most this time, apart from the regular 3 monthly, then 6 monthly and then annual check ups, I have been able to move on from my first encounter with Lymphoma in 2011 having achieved remission in 2012.
I managed to reclaim my life and move back into its rhythm with a degree of normality, as much as one can post dealing with cancer. Much has been achieved in this time personally, professionally and from my family perspective which I am comfortable with and proud. Equally, and not unusually, there have also been a number of less positive and challenging events that have occurred during this time, but again this is not unusual in life. I have accepted these events, learnt from them and worked to move on positively. I have learned that quiet acceptance of events is helpful, to take personal accountability for one actions and that yes it is also true that the world has its fair share of mean spirited arseholes. What is important and helpful is to stay anchored in the truth and focus on how one responds to the unexpected events rather than the event itself. I think this learning has been very helpful in dealing with 2020 and the events that unfolded.
For many 2020 has been a year of great uncertainty, upheaval and change. Covid emerging in February 2020 as an epidemic then moving to a pandemic and its impact has been and remains profound. I wont need to spend time discussing this here.
It is in the context of the Covid lock down, remote working, significant partner/staff retrenchment and realignments at Deloitte that unfortunately, and to my great surprise, in late May 2020 I first became aware that I had fallen out of remission and the cancer had returned.
It was quite a shock as apart from the additional stresses and anxieties of Covid and the Victorian lock down, I was feeling really well physically. The first indication was that I had lost weight, about 8kg and running the opposite direction to many who were dealing with Covid Kilos stacking on. I put this down to lack of exercise as the gyms were closed and exercise limited.
The reality was something all together different.
For a range of reasons I changed oncologist and moved my care to Peter McCallum Comprehensive Cancer Centre in Parkville. A state of the art public hospital that all Australians should be very proud that they can access freely should there be a need. I do hope though that you never do. I had a close personal and professional relationship with the head of aggressive Lymphomas through my role as the Chair of Lymphoma Australia. This was one of the roles I took on in 2019 having joined its Board and being strongly aligned with its vision and purpose. On the work front I have continued to work and support Lymphoma Australia and my role on the Board Ausbiotech as best I can. I have no current work obligations or responsibilities at Deloitte and on extended sick leave.
After a series of tests it was confirmed in June 2020 that the cancer had returned at it had progressed to Stage 4. That was quite the surprise. I had cancer in a large number of lymph nodes as well as in my vertebrae which was concerning.
I informed my partnership that this had occurred and a number of things where decided and that’s not for this post. We informed our daughters and this time it was very different as they are young women aged 17, 17 and 20 and had a degree of maturity they did not possess as younger girls in 2011. We informed the family and some friends last. It was tough for all as can be expected, but I was otherwise healthy, no other co-morbidities to worry about and we where confident that with the right treatment and some good fortune it will be ok.
Like the first time dealing with this it is always affirming how friends and family step up and help. It’s always a surprise to see how people respond. There is no real right or wrong way, individuals do the best they can and 2020 was already a shit storm for so many. We had the added complication of a heavy lock down in Victoria so it was not possible to connect with people physically and that in some ways made it both harder and easier depending on the person or group. We did the zoom thing and calls etc, to keep people informed and I started sending short voice updates by text and WhatsApp to selected groups of family and friends.
Family, friends, clients and colleagues have kept in regular contact doing all they could, when they could to stay connected and help. Very thankful and it does make a difference. The core group of partners I work with have been awesome with daily contact even though many have dealt with their own issues during this period as have a number of other friends. The really heavy lifting and support has been provided by Petra, the girls and my sister. They have been incredible, supportive, loving, they hold me to account when I need it (and I do) and given that they to have experienced incredible dislocation in their own lives this year, they carried this additional burden incredibly well. We have had our moments, that is for sure, 5 adults living in an apartment under lock down, remote schooling, social isolation and dealing with this cancer can be a significant challenge.
Treatment started very quickly with radiation of the vertebrae and the decision made that I should consider a phase 1 clinical trial which added a relatively new immunotherapy called Glofitamab to the standard Chemotherapy RCHOP protocol.
Radiation was relatively painless and side effect free and after waiting the required recovery period and navigating the Covid slow down in clinical trail recruitment I managed to get on the trail and start the treatment.
Unlike my last blog updates I will not detail the impacts of each cycle. To summarise though this 6 month journey to date has been significantly more impactful that the chemotherapy in 2011/12. There are many reasons for this, I am older and likely diminished a little from the first time through and just age. The main reason is that this protocol is significantly more toxic than the Bendamustine chemotherapy I had last time.
The physical impacts are significantly more profound. I felt that the first run with cancer had prepared me for this second round and it had mentally, but I underestimated the physical and some of the phycological impacts.
The complete loss of my hair was the early sign which I did not mind at all. I also realised how normal it is for men at my age to be completely bald or thinning, so I slotted straight in. Loosing the eye brows looked a bit odd but my glasses tend to hide this a bit. The real issues stem from terrible and persistent nausea, profound fatigue, head aches, ringing in the ears, heavy shortness of breath, bone ache, cramps, neuropathy in both hands, blood clots in in my arms, the heavy and constant contact with with the hospital and medical team and a a range of weird and wonderful other side effects I wont go into.
Mentally it can be a challenge as well, on a number of levels. I believe I am mentally resilient and I do not rage against this disease, I accept it, it is no ones fault and not accepting it achieves nothing other than angst. I do focus as much as I can on my mental self narrative to ensure it is not destructive or goes to dark spaces. Of course it can and does, but I check myself and tell myself these are not helpful thoughts, to acknowledge them and move on. It is not always easy as my mind is often impacted by the drugs I am on so often I can be a little foggy and even a little blue but that’s ok. I am fortunate that I have the space and luxury to focus on being well and I am acutely aware that this is not the case for so many cancer patients.
I try to adopt the attitude to not allow this cancer to take anything more away from me or my family that it already has, so to stay focussed on what I can control or influence. I try not to think to far ahead as most of the ruminating is often not helpful and I have time to focus on reclaiming my life when the treatment ends, the side effects diminish and I return to better health.
This is not as easy as it may appear. If does take focus, effort and yes I do stumble. I do think the framework and approach is right though, for me. Funnily and oddly helpful, when I do slip into a negative head space or I become short and agitated (normally when I am coming off the steroids cold turkey) the girls have named this persona “Eric” – or “Evil Eric!. Oddly naming it and calling it out helps me catch myself – “Eric that’s not acceptable” or “we don’t like Eric” etc or much worse is helpful. Who knew!!
The chemo is harsh and the supporting medications are extensive and they take their toll. The main game though is to be well again and fortunately I am on track for this to be achieved. I am very thankful for all the care I am receiving and in awe of the modern treatments for this cancer. Glofitamab has promise of being potentially curative for me, or at least to induce remission longer that the 8 years achieved the first time. Time will tell.
I am expecting to know late March 2021 the outcome of the treatment and then I will commence 2 years of maintenance therapy with Glofitamab. I expect it will take 2 to 3 months to recover from the impacts of this treatment physically and mentally but I am not sure this stage and it could be much sooner than that or longer. I am not thinking about that now. Have to get this done first.
I hope those that a reading this are doing ok.
Look after yourself and each other.
My Unplanned Sabbatical 