David G - Diagnosed with a GBM IV in 2005
Could I update you with another 10 months. 28. February 2013 I went 90 months post op. Thatâ€™s 90 months since my wife was warned I may not be coming out of the operating theatre and when I do, her relief is tempered by a warning of â€œwell 12 months, 15 months topâ€! Forget those stats. Never let them write you off.
Iâ€™ve started with the present position but let me tale you on my journey to this point.
June 10 2005. Armed with the results of my BUPA health check I arrive back in the office. BUPAâ€™s traffic light grading has me hitting bright green and I announce â€œyouâ€™d have thought they could find something that could give me a few months off!â€ â€“ Just joking.
Wind on to mid August and Iâ€™m in Belfast. Iâ€™ve a slight headache. I donâ€™t get headaches but Iâ€™m chairing a meeting that afternoon and want to be on top form. Over to Boots and 16p on a packet of paracetomal sorts it.
Back home and less than 3 weeks to my hols, but two nights running, 3.00am sees me sitting up in bed to relieve a headache. Itâ€™s not a migraine, just enough to wake me, not enough to keep me from work. The weekend sees friends round for a BBQ. Itâ€™s the early hours of the morning and I have my head down the WC. I must have caught that virus Lauren, our little 2 year old had. Next day. Iâ€™m not fit enough for work but rather than just sit it out, something is telling me to get down my GP. I see his nurse. Try a dairy free diet for 24 hours. If that does not shift it come back. Worth a go, that yoghurt was past its sell by date.
Gave it a go but Iâ€™m no better, so Lisa, my lovely wife, takes me back. Iâ€™ve little recollection of the visit but understand I was twitching badly and not making much sense. The Dr. gets me admitted to St Maryâ€™s Sidcup. Lisa takes me over in her Mini Cooper but is unable to stop me ringing colleagues to bark out some incoherent instructions.
A scan is done. A number of possibilities, but it could be a Tumour. Itâ€™s sent over to Kings College Hospital. Apparently they are experts in these things. Kings revert. It â€˜s a tumour and they want me over to cut it out. Honestly, I remember being lifted by the news. Iâ€™m a senior project manager and deal in solutions. Clearly Iâ€™ve a problem but the right people have got together, defined the problem and worked out the core step in resolving it. Letâ€™s get on.
Saturday sees me despatched to Kings. The blue lights are on as we speed round the south circular. On arrival Iâ€™m struck by the number of patients needing a police escort. This is not the nicest part of London!
The operation is set for next morning, Sunday 28 August 2005. Iâ€™m told there are two types of tumour, benign and Malignant. Once they get it out it will take a few days to analyse, but hopefully not the second. Itâ€™s the cancerous one. Fight it says my nurse. Everyone is so motivating.
Next day, after 3 Â½ hours on the operating table Iâ€™m wheeled out to see Lisa. Sheâ€™d been warned I might not be coming out; the operation carries a high risk of a brain haemorrhage. Well, Iâ€™m out, so past that milestone, but there is a problem. The challenge with most patients is getting them to talk. With me, the problem was getting me to shut up!. Apparently I was making wisecracks coming out of the operating theatre, with Lisa hearing one of the medics say to me â€œthis is seriousâ€. Much later I find that humour is regarded as an important part of the recovery process, so whatâ€™s the problem?
The operation has been a great success with a tumour the size of a walnut removed. However, on asking, Lisa is told I have just 12 â€“ 15 months to go. She keeps this to herself until Iâ€™m well past these estimates.
Throughout the day they ask â€œwhat day is itâ€, â€œwhere are youâ€? Confident in my answers, they add a third, â€“ â€œwho is the Prime Minister?â€ Iâ€™m not fooled replying â€œWhen it comes to foreign policy itâ€™s George Bush but he leaves minor domestic matters to Tony Blairâ€. A pause before I hear a medic say â€œwe have a problem, but itâ€™s not medicalâ€. My wit is getting back but I canâ€™t help but sense a change of mood. Was the technical success of the operation marred by what they found? I remember complaining about some negative talk. Iâ€™m not the British Empire. This is not about the management of decline.
Like any project, big changes are made, but also many little ones. It is the totality of change that drives success. Cutting out the Tumour was the big one in Project Grant, so letâ€™s go to the little ones, in particular, what can I do? A nurse tells me to stay active, cut out caffeine, cook only with olive oil and a glass of red wine a day. Deletion of Caffeine is the only one I can add, but every small change helps.
Expectation was Iâ€™d stay at Kings for a week before a transfer back to Sidcup. However, such is the pace of my recovery Iâ€™m home 4 days after the op, recovering in my own bed with my family around me.
Friday sees me back at Kings to see an Oncology nurse for the results of the analysis. Lisa is with me. First congratulations, that op was more complex than a heart transplant, now routine in comparison. Iâ€™ve come through it very well.
Now the analysis. It is a malignant tumour (months later on asking, my consultant explains it is a GBM Grade IV). I will need to undergo a 6 week Radiotherapy course. Downside is this is only good for c12 months. Encouraging results are being achieved with a concurrent 6 week application of a Chemotherapy drug called Temozolomide, but, after glancing down at my file, says â€œYou wouldnâ€™t get it for your post codeâ€! Have you got private health care? A call to my employerâ€™s healthcare provider agrees funding straight away. We are in business.
What can I do to help myself? The response is a lecture of no scientific basis for all those â€œcuresâ€. Claiming she had personally researched half a million Cancer websites â€“ of course you have! There is a lot of rubbish on the Internet. I give assurance that no one will make money out of my misfortune.
Travelling home the two of us plan next steps. Central is that this must not scar our lovely 2 year olds childhood. We are going to keep things as normal as possible. That weekend. when the three of us are together, it would have taken a detective to spot anything amiss.
Despite warnings, I look at the internet. Yes a lot of rubbish but here is the Temozolomide manufacturers site. What do they say? Well a sample of 597 patients saw a survival average of 14.2 months increase to a sensational 18.3 months. In any other business, a 29% improvement would indeed be praised but in human terms, this would see me exiting a fortnight after Laurens fourth birthday and a fortnight before Lisaâ€™s. This is unacceptable, whatever happens my exit will be well outside the Christmas/ Birthday period.
Itsâ€™ a few weeks before I start the treatment. We snatch a couple of weeks in France between appointments.
On my first visit to St Thomasâ€™s Iâ€™m struck by the gloomy atmosphere. This is a place of care but it needs to be a place of cure. My view of the atmosphere is reinforced when Iâ€™m asked to sign the Patient Consent Form. There are 2 benefits:
As a project manger, I have written and lectured on Benefits Management. I growl â€œIn the world I come from, not having a solution is not good. It is not a benefitâ€. Iâ€™m professionally offended by this but lets move on and get the treatment going.
Once I see my senior consultant, faith is restored. The pace of my physical recovery from the operation, my age (48) and the fact that the entire tumour was removed are all grounds for optimism. I show him my June BUPA Health check. I want to get across that Iâ€™m worth investing in. Trying new treatments out on me will not be distorted by failures in other organs. This cancer aside, Iâ€™m really very fit! What can I do to help myself? He concurs with earlier advice but make that 3 glasses of Red, particularly Chilean! Seems heâ€™s done a study on Red wine and its effect cancer. Things are looking up. I canâ€™t say Iâ€™ve been able to achieve this, but at least Iâ€™ve been able to enjoy a few drinks without browbeating myself.
The meeting closes with a word about the survival stats. They are appalling but a small % do very well- â€œjoin themâ€ is his rallying closing message. I will.
I reason that we are dealing with a timing and Quality of life issue. We are all going to die, but Iâ€™ve too much on to leave for a good while yet. Iâ€™ve got to walk Lauren, our two year old to her first day at school and must make sure Iâ€™m around longer than my mothers father was for her, so that takes me to 2014. As for eligible suitors. There is just so much to get done.
A motivating point for me was the pace of medical change. That operation was more complex than a heart transplant. Yet is was 1979 before the UKâ€™s first successful heart transplant â€“ thatâ€™s success defined as the patient left his bed and went home. To have gone from not achieved yet, to routine, in less than 30 years shows what can be done.
04.10.2005 I start the 6 week course of Radiotherapy and Chemotherapy. Temozolomide is a capsule, taken with a glass of water before breakfast. Iâ€™d been encouraged to exercise as without exercise, one off the drugs had a wasting effect on thigh muscles. Waterloo is the nearest station but I stay on to Charing Cross, sometimes Victoria, walking an ever widening circle to St Thomasâ€™s. If I had problems all I needed was a hand to wave down a black cab. The hospital would patch me up.
The first day was not good. My anti sickness drug just did not work for me. The medics respond quickly and 1 mg of Kytril sorts me. Thereafter I have little problem until the end of the 5th week. I get home after radiotherapy to Lisa telling me that St Thomasâ€™s had called. I must stop taking Temozolomide immediately. Moments later St Thomasâ€™s are on to check I have the message. My platelets have crashed and daily blood tests will be required. I may need a blood transfusion. Protests of Iâ€™ve only a week left and besides, Iâ€™d been told I only had 12 months, are to no avail. With my platelet count it would be too risky to carry on. I obey â€“ reluctantly.
My June BUPA health check had a platelets count of 165. Now Iâ€™m at 21. The next few days see it fall further. I ask at what point monitoring stops and I get a blood transfusion? She needs to check, telling me next day that 17 was the trigger point. Iâ€™d been at 15 on Tuesday! Luckily I was on the way back up, but thatâ€™s enough Temozolomide for the moment.
Thinking back to warnings of solutions with no scientific backup, Iâ€™m amused at the breakthrough splashed across TV screen at Charing Cross. Seems there is now scientific proof that wrapping up warm can help stave off colds! Iâ€™d no idea my mother had been speaking without scientific back up. A pint of Pomegranate barman.
Iâ€™m assured that missing the 6th week will not make a difference and after a couple of months break, February seeâ€™s me resume Temozolimide at 5 days a month for 6 months. Dosage has almost doubled at 240 mg but I have no problems.
August and the end of treatment scan. Had all that surgery, radiotherapy and drugs worked? I bump into my oncology nurse on my way to see Dr Beaney. â€œWhats it looking like?â€ I ask. Her response takes me back - â€œItâ€™s fab, fantastic, everything has improvedâ€. She skips down the corridor as I go into Dr Beaney to get a more considered view. â€œExcellent, could not be better. There is no visible sign of an active Diseaseâ€. Excellent but what is most striking is the enthusiasm the medics have for the results. There is a real feeling that they have achieved something.
He knows I want to get back to work but on no account, rush things. Make my comeback very slow. Thatâ€™s not a problem, I know Iâ€™m not up to it yet and my employer, The Royal Bank of Scotland, has been tremendously supportive. It was practically a disciplinary offence for someone from London to arrive in Edinburgh without an up to date report on David Grant.
As part of our contingency planning we had moved house to Tunbridge Wells to be nearer Lisaâ€™s family and friends. I go to my new GP. Itâ€™s our first meeting and he is astonished at my request to go back to work. Subject to me assuring him that I will not overdo things and back off at the slightest problem, he agrees, reluctantly, to allow me back.
Itâ€™s 13 September, my first official day back, after 277 days off. Iâ€™d popped into the office on my way back from treatment as part of my exercise regime. I thought I was looking well and that people must be wondering why I was off. As a result, I went in after a lot of my hair had fallen out. I could see then they were a little shocked. In fact they were very, very shocked and in those earlier occasions, I hadnâ€™t being looking as good as Iâ€™d thought. On reflection I do remember being shadowed round the office as if I was ill, about to keel over!
I start to make inroads into 1400 e mails. Iâ€™m wiped out by 2.30, declining the offer of a taxi, I leave for the station. My big achievement that day was remembering that gray metal box was the confidential waste. My comeback was going to take time.
That first week was interrupted by a need to take Lauren to her first day at school. What a feeling! Recovery plan bang on schedule!
Progressively my stamina improves, building up to 4 days a week before the chance of an early retirement package was too good to turn down. I left with regrets, Royal Bank of Scotland had been so good to me. I was sad to leave.
Summer was spent with the family in France. It was fantastic. I returned to find an email from an old colleague asking if I wanted help out on a project. For both parties, itâ€™s on a no notice basis and 03 September 2007 I return to The Royal Bank of Scotland. At first I have Fridays off but then switch to a full week. Importantly for me, I know I'm making a real difference. Intellectually I was back.
Ever since the operation Iâ€™ve had regular MRI scans. With no evidence of the disease returning, the period between them has lengthened.. Itâ€™s December 2010 at the feedback meeting for my 16th post op scan that I report a problem. My stamina had very slowly but steadily increased. This was as predicted but Iâ€™d been thinking over the past couple of months that my stamina had peaked. I wasnâ€™t getting quite back to my pre op days. I report such to Dr. Beaney. A pause and a sigh before saying â€œYou are more than 5 years older!â€ Ah, see what you mean, so thatâ€™s 53.
Earlier that year I had two cataract operations . Back in 2006 Iâ€™d switched to variofocals and plastic lenses. No problems other than I was always cleaning them. That would be because the optical quality of plastic is not as good as glass. I really must stop speculating on my own medical condition. Iâ€™m always way out. Iâ€™m referred to St Thomasâ€™s, by now a centre of excellence in my restoration. Seems the radiotherapy caused some clouding, not unusual and fixed with cataract ops. WOW, those ops were spectacular! My eyesight has not been this good since primary school. There was talk of me just having them for reading, but specs are my identity, besides what would I use to hide those bags?
A scare at the feedback for my 17th scan. Dr Beaney invites me into a different room â€œso we can view the scans on screenâ€. Is there a problem? NO, he wants me to see just how good they are. Even to my untrained eye, those sharp divisions are like a drawing from a medical textbook.
My 18th scan was just the same.
An additional scan was added to the schedule in 2012. Iâ€™d taken a couple of tumbles, the sort that could happen to anyone but they happened to me. No way was the first my fault and whilst the second was, it was my negligence rather than a neurological problem. Just in case I report it to Dr Beaney. Could it be the start of my spatial awareness going? An MRI scan is done, as well as a review of all the scans since 2006. In looking for signs of a tumour coming back, had they missed something? Absolutely not! Look where youâ€™re going Dave
December, and the feedback from my 20th scan. A couple of visiting U.S. neuro consultants join the meeting. My consultant, tells them â€œItâ€™s not just Mr Grants longevityâ€, turning to me to say â€œthe scan was perfect, I couldnâ€™t find the slightest thingâ€, turning back to the Americans to say â€œheâ€™s working full time, lobbying at Westminster or wherever he can, doing lectures, giving support to othersâ€¦ They clarify the type and intensity of the tumour and on hearing it was a GBM Grade 4, look dumbstruck. There was a shocked groan of â€œBain!!â€ from one them as I add that the part of RBS I was in had been sold off to U.S. venture capitalists. As they leave the room I hear one say to the other â€œHow?â€œ. Well thatâ€™s what the little ol British Health Service can achieve.
So why am I still here, despite those dire predictions back in 2005. My consultant cites the fact that throughout my treatment I have steadily stretched myself both physically and mentally. To me this was a problem like one of my projects. I had a reputation as a Project Manager that delivered innovative solutions, now I had a project that was very personal to me. Sort it Dave.
Getting back to full time work was certainly the big step but my activities have included:
In 2010 I was asked to address the Hammer Out Brain Tumour conference. In Exeter. It was exhausting but enormously fulfilling. Iâ€™m on Sunday morning but arrive on Saturday and straight away find myself in 1 to 1 discussions. Come Sunday morning, the first speaker is having problems with his laptop and Iâ€™m straight on stage, wired up with a roving mic. Iâ€™ve done quite a bit of public speaking but put a lot of effort into making sure this was a top performance. With 100 + patients and carers in attendance, my survival and working full time, was strong motivational stuff in itself. If I could put on a strong performance it would surely give people added hope.
I thought Iâ€™d done well, confirmed when a lady approached me saying â€œYou were wonderful. .You should be on the telly. Iâ€™m going to write to BBC South Wesrâ€ Complimentary though that was, I had to control my emotions when a couple of weeks later a patient Iâ€™d spoken to rang to thank me for giving him hope. Heâ€™d been told nothing more could be done for him but following a talk with me heâ€™d gone back and challenged this. He felt his case had been re-opened, giving him hope and that he had a future. I never shed a tear over my problem but have to confess to needing a few moments on my own when I put the phone down.
Over the past couple of months Iâ€™ve addressed two groups of medics, focussing on the way messages are delivered to patients. From what I found there was plenty of scope for improvement .
Documenting my experiences as they happened:
That first weekend after the op I sat down and started to write things up under the title of â€œSurvive & Thrive â€“ my encounter with cancerâ€. It was my way of trying to keep a grip on what was happening. That day in August 2006 when I got the news of there being no signs of an active disease, Iâ€™m asked a lot of questions about dates. Is he testing me for memory loss? No, I flick back through my notes and Iâ€™m flattered as he declares â€œExcellent, we now have a complete record of your treatment!â€ .
When I was a Trustee of BT Buddies, I was part of their successful Behind the Mask exhibition at Westminster.
Iâ€™ve lobbied wherever I can: M.Pâ€™s, drug companies, research institutes even Cancer Research shops.
Iâ€™ve kept a sense of humour.
Apologies to the salesman in Comet for the â€œearth swallow me upâ€ moment. He was trying to sell extended cover for a TV. No point insuring a TV longer than they reckon I have.
The priceless one came after a short transfer to the private London Bridge Hospital. Iâ€™m asked to look after my scans â€œas your filing system is probably better than oursâ€. Indeed, for what should I find in with the analysis notes for a scan but the January edition of the Maserati Owners Club bulletin! Get me back to the safety of the NHS!
Iâ€™ve acted as a sounding board for others:
Good news gets around around and I have a steady stream of fellow patients/carers, making contact with me. Iâ€™m honoured that people think I can offer something. Please donâ€™t hesitate to get in touch. Iâ€™m still a patient too, no one has said Iâ€™m cured, after all, they donâ€™t know what causes Brain Tumours so how can they say Iâ€™m cured. However, 90 months on, no hint of a disease, working full time, I can hardly complain.
The Equality Act 2010
Recently, after being contacted by a fellow patient, it became apparent that not all HR departments are up to speed with the Equality Act. Macmillan Cancer Support publish a handy guide for employers entitled â€œThe Equality Act 2010 and Cancer How it Affects you â€“ A guide for employersâ€ its in a reasonably sized font and page 2 spells things out in a way that the most inept HR department can understand: â€œWhen a person is diagnosed with cancer, they are automatically classified as disabled for the purposes of The Equality Actâ€¦..even if the cancer has been successfully treated, employees will continue to be protected against discriminationâ€ Page 11 then gives asome examples of adjustments that would be considered reasonable. I got my copy from the Macmillan office at St Thomasâ€™ but copies can be downloaded from the Macmillan Cancer support website: www.macmillan.org.uk . There really isnâ€™t any excuse for not understanding your responsibilities.
Most important of all, Iâ€™ve seen Lauren grow. Now ten, and starting to take an interest in makeup. Those teenage years are going to be scary!
I got used to seeing newspapers hail another cancer breakthrough only to see that â€œbreakthroughâ€ is something that is measured in months relating to cancers below chin level! However, Brain Tumours will be beaten. There has already been much progress since I went under the knife. Temozolomide the drug that played a large part in my survival is now on the NHS and there are advancements being made in all areas, be it surgery, drugs or side effect drugs. Just hang on in there, solutions are coming. In the words of the song â€œJust believe in yourself and you will do tremendousâ€. To be continuedâ€¦â€¦â€¦
A free download of my treatment notes to end 2009 (the nasty bits) can be obtained at www.lulu.com/dagrant.
Feel free to contact me at David