Here’s a very brief breakdown of what has been happening over the last few years. I will go into more detail in the blog / “my story to date” section, but this should give you a good overview of what’s been happening.
A bit of background – as of the time of writing this summary I have recently turned fifty years old! I’m a dad of two boys, run a digital agency specialising in the mobile development space, and am recovering from cancer. More on that later.
I hail from London, England, but met and married an Australian girl and in 2008 we moved from London to sunny Brisbane on the Queensland coast, with our two gorgeous boys, Henry and Zac.
Tragically, in 2011, my wife lost her leg as a pedestrian in a car accident. That’s her story to tell, and I’m not going to focus on it here.
Six years after that accident, in July 2017, and in the midst of my own additional set of health problems, we separated.
Let’s now hop back a few years, back to 2015:
May 6th 2015 – I went to the doctor complaining about pain in my leg that was keeping me up through the night. I was experiencing very broken sleep each night. This had been going for a few months but seemed to be building up in intensity.
June 15th, 2015 – With the symptoms worsening, and my lack of sleep increasing, I was sent for X-Rays of my knee, hip and femur. The scans revealed very little. I trialled some mild painkillers to help me sleep at night.
27th August, 2015 – With the lack of findings and sleep becoming more and more elusive, I went back to the doctor and was referred to a Radiology Clinic. I had an ultrasound and as a consequence of this, I was diagnosed with a DVT (Deep Vein Thrombosis). The length of the clot was 10cm! I was shocked, but could this explain the pain and lack of sleep? I wasn’t surprised.
I was referred to a DVT specialist at a local hospital. The specialist confirmed the diagnosis of DVT and put me on a course of blood thinners.
I ask why I haven’t had the typical symptoms from a DVT: redness, swelling and so on, and it was explained that I have a dual vein system, and rather than the blood collecting behind the DVT and causing those sorts of symptoms, the blood is able to circumnavigate it’s way around the DVT. Hence no redness, no swelling.
23rd September 2015. With various tests being conducted around this time, one area for concern was a blood test for PSA (Prostate-specific Antigen) proteins. An elevated PSA result is often the first step to a Prostate Cancer diagnosis and so I was referred to a specialist prostate urologist. I was advised to have an MRI for that meeting.
30th September 2015 – The urologist indicated, that as a consequence of the MRI findings, that there was a chance that I could have prostate cancer but it was at a very early stage. Due to the fact that I was on blood thinners for my DVT, he wanted to delay the scan.
2nd October 2015 – the lack of sleep continued. Back to the doctor, more scans. No new information uncovered.
15th October 2015 – follow up DVT ultrasound scans are ordered, and these confirm not only the DVT but also no reduction in the size of the DVT.
In the months that follow, my sleep situation worsened.
8th February 2016 – my six month DVT review. Another set of ultrasounds. Again, confirmation of the DVT and indication of no change.
The sleep pattern would occur each night. I would fall asleep, only to wake an hour later with severe leg pain. I would then get up, walk around the house often for an hour or two until the pain settled. And then back to sleep – only to be woken again an hour or so later. Rinse, repeat.
The only time I would get some quality sleep seemed to be 4am to 5am onwards.
10th February 2016 – with a worsening sleep situation – I returned to the specialist. I not wholly convinced that the DVT could be causing the nighttime pain that I was experiencing.
10th February 2016 – with the rapidly deteriorating sleep situation, now averaging just a few hours sleep a night, I was referred for an MRI scan of my leg.
It was later determined that within this scan they missed a key piece of evidence in one of the MRI “slices”.
16th June 2016 – as a family we embarked upon a three-week trip back to my home city of London. The trip was blighted by my lack of sleep. I also knew when I returned I would have to undergo an MRI guided biopsy, which I did.
25th August 2016 – with the sleep situation spiralling out of control – I was referred to another specialist. This time for a bone scan. The scan revealed nothing out of the ordinary.
11th October 2016 – I was sent for a PET PSMA scan.
12th November 2016 – following various tests indicating a significant change in the tumour, my prostate was removed by robotic prostatectomy.
The weeks that followed the prostatectomy were debilitating and painful. But could the removal of my prostate signify the end of my leg pain? Would I recover from the operation and then sleep normally again?
Alas, this wasn’t to be the case, and the leg pain continued.
I would have been to see any number of doctors and surgeons trying to explore what it might be. Everything from psychological (they suggested PTSD – post-traumatic stress disorder) to neurological referred pain, physical pain – you name it.
18th July, 2017 – following a difficult time, my wife and I separated.
The leg pain continued, and the two hours sleep a night continued. My resolve to get the matter increased yet again.
I’d always been convinced the pain though was not in my head, not psychological, and not referred pain from somewhere else or anything else that was I was being tested and treated for. I was convinced the pain was physical and local, vascular and within the leg.
I have been given epidurals, been treated with stacks of different drugs, pain and sleep medications… I have been hypnotised, acupunctured, had sound waves fired in each ear, all forms of leg and back treatment… doctor after doctor, surgeon after surgeon, psychologist after psychologist. Theory after theory. I’ve even had specialists tell me it’s all in my head.
I went back to my doctor in February 2018 and insisted on seeing another vascular specialist. This, despite having had several diagnoses already. My doctor hesitantly sent me to another specialist.
27th February 2018 – I had my appointment, and this particular doctor had his own ultrasound machine on site, and he scanned my leg. Within minutes he told me that he thought I had been misdiagnosed. He didn’t think it was a DVT. He said we would need to MRI it, but it looks like a tumour.
1st March 2018 – The MRI that night confirmed it, it was a tumour deep in my thigh. The size of a large walnut/golf ball.
When I look back – and I look through my seemingly endless pile of DVT scans, it seems inconceivable that this hadn’t been picked up by one of the scanners, or one of the doctors.
To cap it all, in one of the MRI reports, it was found that the operator and specialist missed a crucial clue – in one of the slices of the MRI scan, the tumour was visible.
I was referred to a new set of doctors / surgeons and sent for a biopsy.
This confirmed the tumour.
27th March 2018 – I started six weeks of radiation therapy.
Almost immediately my leg pain subsided and I started sleeping through the night for the first time in a long time. It was absolute bliss!
5th June 2018 – Surgery time. Two surgeons got to work on me and opened up my thighs. One surgeon worked on my left thigh, carefully removing a superficial vein for use in my right thigh. The other surgeon got to work on my right thigh, removing the tumour which was pressed up against my arterial vein which needed to be rewired with the vein from my left. A nerve also had to be removed.
The tumour was removed with clear margins.
And following that, there was lots of physio trying to get my leg back into shape.
As a consequence of the operations, I have some lymphedema in my leg so I am undergoing compression treatment to deal with that. And with the nerve removed, I have lost sensation in half of my lower right leg.
But, I am alive, sleeping well, relieved, and feeling positive.
This is a summary, and I’ll go into more detail about each aspect of my journey, in the hope that if someone out there is searching for answers and not finding them, then maybe, just maybe, my posts here might assist in getting them on the right track.
Question everything. Go with your gut. Get answers. Don’t give up.