As a wife & now the Carer for my husband Ken I was a little reluctant wondering whether or not I should share this? Would people really want to read something that is not uplifting, and not full of happy and joyful news? But this too is a reality, and is where we are at right now, and I find it helpful 'putting pen to paper' so to speak.
Ken was diagnosed with a rare cancer : Mantle Cell Lymphoma, in October 2011. He endured his first chemotherapy, known as 'R-CHOP' for six months, losing his hair in the process.
In May 2012 he had an Autologous Stem Cell transplant. (This is a transplant of his own stem cells, they were harvested after a very intense dose of chemotherapy so that only new, young, healthy cells were harvested and they were then transplanted after another hefty, heavy dose of chemo just in case the cancer had started to return during that two week break between harvest and transplant. He lost his hair for the 2nd time. By now we were getting used to the many changes.
Thankfully Ken had remission after that, for almost 2 years. We continued 'life in the caravan' travelling as Grey Nomads and house sitting along the way.
Sadly, the damm thing returned in February 2014 and since then he's been on a variety of extra heavy dose and trial treatments. Maxi-CHOP, (and loss of his hair once more) followed by a Clinical Trial with a new drug named Temsirolomus, then a relatively new drug Bendamustine together with an older drug Mabthera. Then the big guns (as if he hadnt already had plenty of 'big guns)'. We were fortunate enough to acquire a new drug, not yet available in Australia but showing tremendous results with Mantle Cell Lymphoma, named Ibrutinib; capsules from USA.
We knew all along that this particular strain of Lymphoma, was rare (in fact only about 6% of all Lymphomas diagnosed are Mantle Cell), and the outcome is not good. We knew it could be treated, but it wasn't 'curable'. It wasn't a matter of if it would come back, it was always just a matter of when.
As travelling Grey Nomads we stopped in Bathurst and then Sydney for many months. Ken's treatment team comprised an amazing Oncologist-Haematologist (Professor Rob Lindeman) in Sydney, and then once remission came, we continued travelling in the caravan and he was looked after by the equally fantastic Prof. Anthony Schwarer in Melbourne. Such an amazing team of health Professionals have looked after him throughout this journey.
Finally Ken saw 2 months remission in September & October this year, but unfortunately his treatment also wiped out his bone marrow and it has ceased producing - consequently we have trips to Melbourne for 2 bags of blood & 1 of platelets to be transfused each week - and this will continue for the rest of his time 'here'.
The sad thing.... (& quite honestly it was almost as though we were hearing the words "you've got cancer" for the first time)..... is that Ken is now very much on 'borrowed time'.
We were told last week that if he gets any sort of infection it could simply be a matter of days. Failing that - weeks.
If we can avoid that - he 'may' have 3 months, 6 at the most.
We've been struggling over the last few days with this knowledge, accepting it, talking endlessly, realising that for for him, his journey is almost 'over' ..... but just not yet.
And so we hang in there with an incredible amount of love, and still with small moments of hope.
Coming into the Christmas Season and knowing that it's probably going to be our last together, we are appreciating everything even more. More than we thought we were before. And there's been many moments of appreciation expressed throughout our journey, particularly in the last 12 months.
So that's my story - our story. Yes it is very much about 'us', and 'our story'. And in spite of all the above I still live with hope. Ken does too. He has amazed the Doctors so many times over the last 4 years. Such a strong bugger and so determined. He's been hospitalised many times in the last 6 months and now we want to avoid any further admissions. Be at home, together. Sharing the silences, the laughs, the tears and the togetherness.
Thank you so much for indulging me in this moment, writing here in a 'space' where I feel I can share this.
Keep hopeful. All of you. There will always be hope.