Hello all,
Its been a while since I posted on here about my situation. I’ve had a few emails from the good folk on here to see how I’ve been, and obviously the Team Bullheart posts have let everyone know that I’m still alive, but recently there have been a series of developments that have altered the designated pathway somewhat, so I thought it’d be the right thing to let you guys know what’s happening…
Firstly, thank you for all the support you have given us over the last two years. It would be fair to say that, without said support, there is a chance I wouldn’t have come this far. This really is true, but more for the metal battle, rather than the physical. I’m a fairly tough individual, but there have been plenty of occasions and situations in the past 18 months which might have presented themselves as ‘insumountable’ but for a kindly email or phone-call at an opportune time. It’s all very well telling people that you can “deal with it, no problem”, but another to actually live it.
There have been some staggeringly difficult moments, and the dark face of defeat has appeared on the horizon when I’m at my lowest, but I have never stopped believing that I will win. Participation in races such as the JOGLE, MM, 24/12 and SSUK (in September) are as much about inspiring those in a similar situation to keep fighting as much as for personal motivation. Before I met my wife, I wasn’t particularly proud of myself as a person. I’d spent nearly thirty years as a self-serving, difficult and overly proud person, and truth be told I didn’t really like myself. Her influence and love has made me realise that the qualities I regarded as ‘strong’ were in fact weaknesses, and I’m not sure I’d have fought this disease in the manner I have done without her and other folk.
So an update, and a fairly important one. Every three months I have a range of scans to monitor the progression of the metastasies in my pelvis, spine and sternum, and the remnants of the tumour in my heart. These scans are time-consuming, costly and fairly invasive, but have been established at my insistence and not the team at the RM. I have also continued my treatment of Pamidronate (bone-strengthener) throughout. I have previously mentioned my dissatisfaction at the team at the RM, who are without argument one of the top Sarcoma teams in the world, but who’s responses are reactive, rather than proactive. In fact, the one member of staff that I fully trusted was an Australian Oncologist, who unfortunately had decided to return to Australia for family reasons.
This left me in a bit of a pickle. I asked her for advice on who to approach for a second opinion regarding my condition, and with good reason; the longest living patient with my prognosis prior to me lasted for 24 months, and all are severely unwell for the duration of that time. I have been cycling regularly, and am more than competitive with my peers in all manner of activities. Granted, I get a bit of pain every now and then, but generally the man in the street would have no idea as to the issues I face.
She recommended a team at UCLH in London that specialise in Sarcoma, and agreed with me that my response to the disease is pretty much exceptional. My scans show no change in the bone mets, and there is no trace of the 10% of tumour left in my heart in 2009. She also booked me in for a bone scan at the RM in Sutton, a procedure of which I had never had, because I had expressed my dissatisfaction in not having my whole body checked for mets elsewhere.
The date for the scan came, and I popped down to the RM for the procedure. Those of you that have had family or friends suffer from cancer will know that there is an altogether different feel of a cancer hospital; although the folk are unwell, there is a real ‘warmth’ to the place. It helps to put me at ease straight from the off. I had the scan, and as I came off of the machine I could see the technician looking at my notes with a puzzled expression. I have an enquiring mind, so I asked him what the issue was;
Me: What’s the matter?
Tech: Er, nothing..
Me: Bollocks. What’s the matter?
Tech: I’ve been doing this for eight years. I set folk up on the scanner, and look through their case notes whilst the procedure takes place. Your case file and your scan do not fit together.
Me: In what way?
Tech: Your case notes say that you have mets in three areas. The scan says you haven’t.
Me: What could it be? A fault with the scanner?
Tech: Nope. Not in all the time I’ve been here. I wouldn’t have mentioned it; in fact, I could get in the shit for it. Don’t tell anyone about this, just wait for the Lead to get back to your oncology team about it.
So I felt a bit odd. I called to top guy at the Marsden the next day, and discussed it with him. Far from being annoyed at the technician, he started to read through my file whilst I was no the end of the line. It was during this time, and the continual exclamations of “Oh, you’ve had that procedure, I didn’t know that”, “well I never…”, and “…that is unusual; I wonder why that wasn’t spotted before now” that I felt my desire for a second opinion was probably justified. Towards the end of our conversation, he gave me the names of a histopathologist and a sarcoma surgeon, but asked me to let him establish the lines of communication first as he didn’t want to increase their respective workloads without good reason.
So after speaking to both of them just over an hour later, and finding out how interested they were in my ‘highly unusual case’, it came to pass that they were both part of the ‘second opinion’ team my (good) oncologist had set up. And so an appointment was made, and last Friday I went to UCLH in London to speak to a different team. the lead oncologist told me that the team had reviewed my numerous files the previous day, and that all present were fascinated by my status. That had agreed that the scans were indicating that although there had been initial met activity in the skeletal system and right atrium, this had gone. To all intent and purposes the sites had ‘burnt out’, probably through the chemo, the pamidronate, my activity levels, my unique physiology and my attitude.
This is the first time this has happened to a patient with as serious a prognosis as mine. Ever. There are no other recoded cases of this happening anywhere in the world. She asked me what I thought of the situation, because she was puzzled by my response. I told her that I was delighted, but that the delight must be tempered by the fact that I had to stay prepared for when it comes back; I have to be ready.
And she said to me;
“This hasn’t happened before. I’ve seen a great many things as a doctor that science simply cannot explain. You may well be one of those things. Stay prepared, but go and live your life – you’ve worked hard for it”
Thank you all for helping me live my life. I won’t give up. Ever.
Bullheart
mum’s in a lead-lined room as i type being all radioactive so as well as wanting to express my joy at your news, i want to say thanks for sharing the positive story and attitude