My Story - Glioblastoma Multiforme grade 4 - 9 years on
“Try a dairy free diet for 24 hours, come back and I’llget you into the Dr if that doesn’t sort it” said the nurse at my GP. Six days later surgeons at king’s extract a Tumour the size of a walnut from me. That was on 28 August 2005 and subsequent analysis showed it to be Glioblastoma Multiforme Grade 4. Now more than 9 years later I’m still here living life to the full with my family, lecturing to medics, doing motivational speaking to those less fortunate and campaigning in Westminster.
Let me take you on my journey: I’m a Senior Project Manager for one of the major banks. I’m in Belfast and will be chairing a meeting in the afternoon, but I have a headache coming on. I don’t get headaches but there is a branch of Boots across the road and 16p on a packet of paracetamol sorts me for the meeting. Back home in South London, 2 nights running around 3.00am sees me sitting up in bed with a mild headache. It’s enough to wake me but not enough to keep me from work. At the weekend sees friends round for a bar-b-que but I’ve clearly caught that virus from my little 2 year old daughter as the early hours of Sunday morning sees me with my head down the W.C. Monday, but I’m not up for work. Ratherthan just sit it out, something is telling me to get down my GP just in case… I see the aforementioned nurse. My wife, L, says that to be fair to her, I wasn’t looking that bad on Monday. Wind on to Wednesday and I’m back now, seeing my GP. I’ve little recollection of this meeting but within a minute he’s reaching for the phone to get me admitted to St. Mary’s Sidcup, telling L to go straight there and not to stop off at home.
At St. Mary’s a CT scan is done. A number of possibilities, but it could be a tumour. To check, they’ve sent it across to King’s who are the experts in this sort of thing. King’s revert and the nurse tells me it is a Tumour and they want me over to get it out. Honestly, I was ever so slightly lifted by this news. I was a Senior Project Manager, my job was solutions. Clearly I have a problem, but the right people have got together, worked out what the problem is and decided on the key step in resolving it, so let’s get on.
The blue lights are on as we whizz around the South Circular. I’m struck by the number of patients/visitors that seem to need a police escort, this is not the nicest part of London! The operation is set for 6.00 Sunday morning. L is warned of the risks and that I may not be coming out but several hours later she hears a medic shout “this is serious”, seems I was making wise cracks coming out of the high dependency unit. It will take a few days to analyse the Tumour but a surgeon tells her that it’s pretty obviously cancerous, with life expectancy of 12-15 months top. Back in the ward and I’m making a swift recovery. Questions about what day it is and where am I are swiftly dealt with and when they ask who the Prime Minister is I tell them (it being 2005) that when it comes to foreign affairs George Bush is in charge but he doesn’t mind Tony Blair dealing with minor domestic matters. a pause before I hear one of them say “we have a problem, but it’s not medical”. I’m doing well but I can’t help but sense a change of mood and muse that the technical success of the operation has been marred by what they found. I get home on Thursday, returning on Friday with L to get the results of the analysis from an Oncolgy nurse. It is cancerous and I will need to undergo a 6 week course of radical radiotherapy. Thing is, that’s only good for around 12 months before the Tumour comes back and, voice tails off…. Thinking as a project manager I ask “what’s the workaround?” Seems they are getting encouraging results with a concurrent application of a chemotherapy drug, Temozolmide, but after glancing down at my file, declares “but you wouldn’t get it for your post code”. However, a quick call to my employers healthcare provider gets a sanction in place straight way. I asked every medic what I could do to help myself. A nurse at King’s had given some practical tips including a glass of red wine a day. I ask the same question here and am taken back at a tirade against rhino dust and there being no scientific proof behind any of the so called Superfoods. We leave disappointed but not surprised by the news but astonished at the failure to offer any motivation.
The concurrent radio/chemotherapy goes fine until the end of the 5th week when I get a call to stop taking Temozolomide due to a platelets crash . Daily blood tests follow bottoming out at 15 before rising again allowing me to get on with the second phase of chemotherapy. Phase 2 sees the dosage bulk up from 140mg a day to 250 mg but just one week a month for 6 months.
At then dancing MRI scan is done. Has the treatment worked? I bump into my Oncology nurse and am taken aback by her response “fab, absolutely fantastic everything is improved” I go into see my consultant for his more measured analysis of”Excellent, couldn’t be better. There is no sign of an active disease. There is no clinical or radiological disease.” This scan is followed by regular MRI scans with every 3 months extending to 4 and one 6 months. After an absence of 277 days I return to work slowly increasing my hours to 4 days a week before the prospect of early retirement and a large payoff is too good to turn. After a summer in France I return to an email inviting me to return to the Bank. I stay in this role until July 2013, by which time I have emerged as the top performer on the team but this unit has now fallen into the clutches of U.S venture capitalists. Employment law in the U.S.does not offer the same protection as in the U.k. And an attempt to impose it here is reboustly defended. I leave with another financial settlement and an urge to ensure that rogue employers abide by U.K? Law. 9 years 2 months since my wife was told her husband had 12/15 months to live, I type this, urging all to believe in themselves, if this ordinary fella can beat the stats, so can many more.