Merry Christmas!
I know its a little late, and that I promised to update a few days ago but things got hectic. I hope you all had a great Christmas; from reading the various posts on here, it would appear that the UK economy is well on its way to recovery!
I feel bad for not having posted recently. The support from STW has been immense, through both the post and PMs, and at one stage I felt that I couldn't continue to do it justice. Meg has been bending my ear for the last few weeks about it, and rightly so. My hope is that I can recall enough information about the last month to give a full and frank account of what has been happening.
I mentioned previously about the allergic reaction to Taxol, which placed a fair amount of stress and worry on both of us. The team at the Marsden emailed a fair amount of information about the Caelyx to me, and expressed their collective opinion that it was the best option of all. My worry was more about having an allergic reaction to the new drug.
There were also continued concerns about the registrar that I'd been dealing with at the RM. I didn't like his 'bedside manner', and had expressed my concerns to the Sarcoma Nurse, who stated that a meeting between the head of the department (Leading Authority on Sarcoma in Europe) and myself (Agressive Bolshy PE Teacher with issues about Authority Figures, regardless of how Leading they are) would be a good start. My sister and I went up to the RM a few weeks ago, and the meeting was positive, with all of the answers to my questions being attempted, if not answered. An altogether more interesting moment was when the Professor described how 'agression breeds aggression', referring to my meetings with his useless registrar. My sister (PE Teacher) and I (again, PE Teacher) listened thoughtfully to his perspective until he'd finished, at which point I expressed my concern at this explanation would hold little water at my place of work if confronted by an angry child... I also had an X-ray of my lungs taken - prior to the wedding, the spell I had in hospital had concerned the team at the RM, who'd detected an effusion in the pulmonary chamber. They'd fully expected me to be readmitted for draining, or at the very least have some residual liquid in the right chanber. The professor was pretty puzzled at the total absence of any fluid, and stated that it was 'extremely positive'. About bloody time....
So the initial Caelyx treatment went well and with no hitches, although the cost of cancer is starting to add up both financially and in time spent getting to the RM. £35 to park my car, and because my treatment is fairly specialist the Caelyx is often available only after 4pm, which means that my day lasts from 6am to 10pm. This can be a major obstacle for me, although the amount of steriods they load me up with prior to treatment could keep a bull elephant wired for a few days.These are all minor points though...
Early one morning three weeks ago I was browsing for more sarcoma-related information, and to my complete shock stumbled upon a fella from the USA's blog about his sarcoma. Initial reading proved to be a real shock, as his diagnosis was identical to mine. To put this in some sort of perspective, my angiosarcoma is as rare as it gets; to have a primary tumour in the heart, and secondaries in the skeletal system but not anywhere else is pretty much unheard of. I read through parts of his blog, recognising similarities between diagnosis, emotions etc, but his treatment was different. My angiosarcoma was discovered post-op through biopsy, whereas he has been treated with a variety of different chemo/radiotherapies in order to shrink the tumour in his heart as much as possible. His medical team have been very much against surgery, telling him that the risk is too great, but to his credit he fought for the treatment for 18 months and was finally given the all-clear to have it on the 22nd December.
I emailed him, detailing my story and similarities, and after a short while received an email back from him. It felt good to establish contact someone going through the same experience; at times the lonliness of cancer can be quite unbelievable, and isolation can lead inevitably to depression. He reckons that, bar one other person in the US, I'm the only other person with this. Now there's dumb luck!!!
In order to establish a baseline for comparison, the Heart MRI I had argued for was dated for Tuesday 15th December at the Brompton, next door to the RM. I took my bike on the train, and hammered through London to my appointment. The MRI was to establish (a) how much of the tumour was left, (b) its location in the heart and (c) a baseline to measure growth. I was bollocked for cycling to the appointment ("..really Mr Fradgley, it doesn't help your current state of health to cycle to an MRI so soon after surgery...") but enjoyed the freedom of hammering around London on the way back. Too many bloody fixie riders though - seriously, my Whyte is SS and I don't do gears, but at least act like you're enjoying your ride...
My most recent chemo was two days before Christmas, and in the early hours of the morning I checked Will's (fella in US) blog to see how the operation had gone. His wife had posted saying that the op had been sucessful in removing all of the tumour, and that he was recovering in the ICU. I'm delighted that it went well for him, but am ashamed to say I felt jealous that they'd managed to remove all of his toumour, and that I still had 10% growing and feeding in my heart. I feel great shame at this; Meg has assured me that it's a normal response, but it doesn't take away from the fact that I wanted it to be me, not him. I am chuffed though; he'd had it tougher than me over the last 18 months, and as mentioned previously in this post, I tend to operate more effectively when things are at their toughest, so maybe it's meant to be this way...
My sister and my dad came with me to my chemo. Despite my 'angry man' status, the fact that the trains were shafted didn't annoy me, and after getting to the appointment late and having my bloods taken my sister and I went in for a debrief about the previous weeks Heart MRI with my 'favourite' registrar. He started to read the report out, expressing the observation made by the Brompton team and their conclusions, and I waited on the news that it had started to grow again, probably in an inoperable direction.
Therefore it came as a bit of a shock to hear that, apart from the scar tissue from the op, there is no evidence of the 10% left in the heart. It seems to have gone. Either through the limited chemo I've had, or just the power of positive thought, but it's not there. It will be back at some stage, of that I'm sure, but for the time being I can turn my attention to the battle in my skeletal system. My aim is to be the first person to beat this. I will do it.
I could not do this without you all. I mean it. There were times in the dark early stages of this journey when I thought I would throw in the towel. Your posts are the difference between fighting this ourselves, and having a army behind us. There are stories of inspiration on here, from those that have or are suffering from illness, and too many folk on here to thank individually; My family, Chris (Marsdenman), Trudi, The McNic family, I'll be up soon I promise! Si in Brighton for getting me back on the bike, Mike and family in Southampton, thank you all.
I won't let you down.
Mark Fradgley
P.S Attempting a ride tomorrow if anyone wants to laugh at a bald cripple with a cow-heart riding SS; look at bigsi's post for details
P.P.S For when I'm on the floor: http://www.youtube.com/watch?v=QMX3qv1N37s
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