Me My Lump and I
Maybe it’s because I’m an old softy at heart…maybe it’s because I have two daughters of my own…but whatever the reason….this moment, between daughter and father is one of the most precious moments of a wedding day. I step into the shoes of the Father every single time….I take the image I would want, perhaps not for me, but for her, to love and to share time and time again. To see her Father standing there, looking with eyes filled with tears of love, gazing upon the most perfect vision of his daughter….what a moment.
Peaceful and amazing…even with a possible diagnosis that may have changed my life, this place offered the freedom to relax and unwind and try to make sense of the past few weeks….to embrace the idea of a positive result and make plans for what may be about to unfold.
Wading out into the warm Indian Ocean, camera precariously balanced on a tripod…the water chest deep, I fumbled, guessed a few settings, pressed the shutter and prayed.
After returning to the UK my next appointment had arrived.The results were in and I was nervous.
Before I push on much further let me offer up some reassuring words. As you have undoubtedly gathered by now, my tests were for cancer, not the monster of nightmares, but a more “indolent” sly bastard that creeps up on you unsuspecting and without much warning. Non Hodgkin’s Lymphoma, or NHL for short is it’s name. This is essentially a slow growing disease that takes an absolute age before it is detected. Indeed many people get diagnosed when other procedures are being carried out for unrelated illnesses, that can be a real kicker and I count myself lucky to have been one of the more “borderline” cases. But having said that it is treatable, and, if caught early enough, curable…it’s just catching it early that’s the issue. However, even those caught to late for a “cure” often live with NHL for many years, and live a perfectly normal life, managing the disease as a chronic illness rather than a cancer, so there is a great deal of hope even for victims of a more advanced diagnosis.
So I am sitting opposite a doctor….he is looking at his screen, sucking his teeth and muttering, he turns to me…
“…You have low grade Lymphoma”
And with that I thank him for his 30 seconds of time and bid him a good day, shake his hand and leave the room. In all fairness he didn’t quite leave me hanging as badly as that….he did actually tell me I was now discharged and would hear from the Haematology department. I did try to question him about the diagnosis and what it meant, but he simply said it was not his area of expertise, a little cold and factual, but I didn’t mind his directness, his no messing approach and his professional detachment. All that was left for me now was to break the news to my family who were waiting on the final outcome.
Meanwhile weddings and meetings were taking place and all the time I felt good, I felt positive and full of the joys of life…I mean how could I not feel all these things, and more, when I was working with such amazing people and capturing images like these:
I love my work, I love my couples, I love my life….and that very life was now under threat. Like many out there I am sure, when I heard the words “Lymphoma” I thought…game over. How wrong was I, far far from it. I read much, possibly to much and Dr Google was my go to reading partner. I read all about a variety of nasty possible ends, and also tales of optimism weaved in and around the shit storm that was about to engulf me. I had worked so hard, so tirelessly, to build up my baby, my business, and now it was going to be ripped away from me. But all that time, all while these scenarios were playing out in my mind, I looked forward to my work, it was where I could forget the disease and enjoy life and with it, all it’s beauty:
During my “diagnosis phase” this gorgeous little lady came to visit me, she, along with her parents, reminded me of how precious life truly is.
So my next phase was here, the meeting with my Haematologist and team, this was to prove the eyeopener to all the ins and outs of Low Grade NHL.
My Wife and I sat opposite Dr O’Connor who has a very honest and very likeable manner about him (though my wife disagrees a little bit, she does agree on one thing, he knows his onions)! Dr O’Connor is one of the countries leading consultants when it comes to blood cancers, and I felt lucky to be in his care. We listened intently as he laid out the issues and possible routes this illness may well have in-store for us/me, it was good to be reassured that all I had read was fairly accurate when it came to the positives, and fairly inaccurate with the more alarming scenarios (mainly US sites it has to be said….I wonder why). So the next phase was here, more scans, more X-rays and a bloody lovely Bone Marrow Aspiration!
As regards the Bone Marrow Aspiration, all I will say is I had a local anaesthetic…it was pretty horrible…not horrific, but something I am glad I will not encounter again, at least not in the short term anyways. I will also add in that this was the low point for me. I actually felt like shit, while curled up on the bed, having a sensation of being “drilled” was not pleasant. All the previous months of pain, suffering, the operation and multiple trips to and from hospital, along with the worry, the anxiety, they had their collective moment right there, right then, and made me feel crap, no, made me feel like utter shit. But that was it, all the tests were done, all that remained was one last ultra sound to navigate then the results of the staging process would be complete.
It’s probably worth saying something here about staging before I move onto the results, and what staging actually means…I won’t go into to much detail, but suffice to say, stage 1 is rare, just 1in 5 people diagnosed get stage 1, the others get a mixture of stages 2-4 with a variety of different letters depending on symptoms. These symptoms range from night sweats, to fatigue to weight loss. Apart from the fatigue and a few night sweats I had very little in the way of additional symptoms and that was promising….the biggy was the bone marrow…if the Lymphoma was there then that’s pretty much a stage 4, and incurable, but still very manageable, however it would be with me for the rest of my life. Only stage 1 and some stage 2 Non Hodgkin’s Lymphomas offer up hope of a cure.
Off I went to get my abdomen checked out, early morning start, pretty much first in. Thankfully I was in and out in just a few minutes, the words of the Doctor ringing in my ears.
“all clear and all normal”
Nothing more to say other than…THANK FUCK…and a broad smile creeping across my face as I dared to hope.
The Results Are In
Today, June 15th, was to be my second meeting with Dr O’Connor and my results for the next period of possible treatment that would determine my quality of life for the rest of my life, and with it, my families too. The nerves were literally jangling as I took my seat in the waiting room, my fellow travellers were all in there with me too. Some had been on this journey for years, some, like me, had just begun, we all have our own personal guides there, holding us close, hugging us, loving us and, I suppose, willing us to be well.
As I sat across from Dr O’Connor he was staring intently at his screen, reading letters, notes, reports…he turned to us and said, well….that’s all good…no sign of it…looks like your Lymphoma, being the Indolent creature it is, has gone, no sign of it anywhere. My sense of optimism, my sense of gratitude, was overwhelming. I count myself incredibly lucky and in someways, a fraud too. I know NHL is not to be messed with, it is never a good thing to be told you have Cancer, but to then hear the words “…we will try to cure you…” made me almost cry, almost.
I have a 50% chance of being cured now, my next phase is coming, a PET/CT scan is being organised to find the last remnants of this fucking disease, and the radiographer, with luck and a whole heap of love, will blast this damn awful disease right into the hell hole it crawled out of.
I hope this helps anyone out there on this journey of diagnosis and medical investigations, that there is hope. I also urge anyone out there who finds a lump, notices a change in any of their bodily functions, has unexplained weight loss, night sweats, loss of appetite, feels drained ( I did….and I really did feel completely exhausted during some of the procedures) to visit their Doctors and get tested. Catching cancer early is imperative to being cured, even if my disease reappears, which it may, it will probably not be for many years, but I will be ready and waiting to kick it’s ass again.
For now, normal service is back, my fatigue from the umpteen hospital visits and procedures is all but gone, I feel invigorated and even more determined to do my absolute best for my couples, even more so than ever before, I truly understand the power of photography and the need to capture moments like these for all of my couples.
All I now need is for the PET/CT scan to be clear and a few zaps to the chest area and in 9 months time, when I return to sit opposite Dr O’Connor, I will know for sure if I have been cured.
In the meantime I have some seriously beautiful moments to capture.
Love to you all, and especially to all my couples for being there and for being part of my life.