David G - Diagnosed with a GBM IV in 2005

June 10 2005. Armed with the results of my BUPA healthcheck I arrive back in the office. BUPA’s traffic light grading has me hitting bright green and I announce “you’d have thought they could find something that could give me a few months off!” – Just joking.

Wind on to mid August and I’m in Belfast. I’ve a slight headache. I don’t get headaches but I’m chairing a meeting that afternoon and want to be on top form. Over to Boots and 16p on a packet of paracetomal sorts me out.

Back home and less than 3 weeks to my hols, I’m sitting up in bed to relieve a headache. It’s not a migraine, just enough to wake me, not enough to keep me from work. The weekend sees friends round for a BBQ. It’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. I’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 and if that does not shift it come back. Worth a go, that yoghurt was past its sell by date.

Gave it a go but I’m no better, so Lisa, my lovely wife, takes me back. I’ve little recollection of the visit but understand I was twitching badly and not making much sense. The Dr. gets me admitted to St Mary’s Sidcup. Lisa takes me over in her Mini Cooper but is unable to stop me ringing colleagues in Belfast to bark out some incoherent instructions.

A scan is done. A number of possibilities but it could be a Tumour. It’s sent over to Kings College Hospital. They are the experts in these things. Kings revert. It is a tumour and they want me over to cut it out. Bizarrely, I remember being almost lifted by the news. I’m a senior project manager and deal in solutions. Clearly I’ve a problem but the right people have got together, defined the problem and worked out the core step in resolving it. Let’s get on.

Saturday sees me despatched to Kings. The blue lights are on as we speed round the south circular. I grin to myself, thinking of the other traffic struggling to keep pace with the joggers.

The operation is set for next morning, Sunday 28 August 2005. Apparently 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. It’s the cancerous one. Fight it says my nurse. Everyone is motivating me.

Next day, after 3 ½ hours on the operating table, I’m wheeled out to see Lisa. She’d been warned I may not be coming out; the operation carries a high risk of a brain haemorrhage. Well, I’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 stop. Apparently I was making wisecracks coming out of the operating theatre, with Lisa hearing one of the medics say to me “this is serious”. Much later I find that humour is regarded as an important part of the recovery process, so what was the problem?

Apparently, 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 – 15 months to go. She keeps this to herself until well past these estimates.

Throughout the day they keep asking me “what day is it” and “where are you”? Confident in my answers, they add a third, – “who is the Prime Minister?” I’m not fooled and reply “When it comes to foreign policy it’s George Bush but he leaves minor domestic matters to Tony Blair”. A pause before I hear a medic say “we have a problem, but it’s not medical”. My wit is getting back but I can’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.

Like any project, big changes are made, but also many little ones. It is the totality of these changes that drives success. Cutting out the Tumour was the big one in Project Grant, so let’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 that I’d stay at Kings for a week and then be transferred back to Sidcup. However, such is the pace of my recovery I’m home 4 days after the op, recovering in my own bed with my family around me.

Friday sees me back at Kings for the results of the analysis. Lisa is with me. First congratulations. That op was more complex than a heart transplant which in comparison is now routine. I’ve come through it very well.

Now the results. It is a malignant tumour (months later on asking, my consultant explains it is a GBM 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 I wouldn’t get it for my post code. Have you got private health care? A call to my employer’s healthcare provider agrees funding straight away. We are in business.

What can I do to help myself? The response is a warning of no scientific basis for all those “cures”. 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 the warnings, I look at the internet. Yes a lot of rubbish but here is the site of Temozolomide manufacturer. What do they say? Well a sample of almost 600 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 Lisa’s. This is unacceptable, whatever happens my exit will be well outside the Christmas/ Birthday period.

Its a few weeks before I start the treatment. We snatch a week in France between appointments and then grab another.

On my first visit to St Thomas’s I’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 I’m asked to sign the Patient Consent Form. There are 2 benefits:

1. Prolonged Survival

2. “No Cure”

As a project manger, I have written and lectured on Benefits Management. I growl “In the world I come from, not having solution is not good, it is not a benefit”. I’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, age (48) and the fact that the entire tumour was removed are all grounds for optimism. I show him my BUPA Health check. I want to get across that I’m worth investing in. Trying new treatments out on me will not be distorted by failures in other organs. This Cancer aside, I’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 he’s done a study on Red wine and its effect cancer. Things are looking up I can’t say that I’ve been able to quite achieve this, but at least I’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- “join them” is his closing message. I will.

I reason to myself that we are dealing with a timing issue. We are all going to die, but I’ve too much on to leave for a good while yet. I’ve got to walk Lauren, our two year old to her first day at school and must make sure I’m around longer than my mothers father was for her, so that takes me to 2014 and as for eligible suitors. There is just so much to get done.

A motivating point for me was the pace of medical change. I’d been told that my operation was more complex than a heart transplant. Considered routine in comparison. It was not until 1979 that the UK had it’s first successful heart transplant – that’s success defined as an operation in which 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 capsule form, taken with a glass of water before breakfast. I’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 take the train to Charing Cross, sometimes Victoria and walk an ever widening circle to St Thomas’s. I reasoned that if I had any problems all I needed was a hand to wave down a black cab and 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 5^th week. I get home after radiotherapy to Lisa telling me that St Thomas’s called. I must stop taking Temozolomide immediately. Moments later St Thomas’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 I’ve only a week left and besides, I’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 – reluctantly.

I look at my BUPA health check and see platelets were at 165 in June but now I’m at 21. The next few days see it fall still further. At what point does monitoring stop and I get a blood transfusion? She needs to check, telling me next day that 17 was the trigger point. I’d been at 15 on Tuesday! Luckily I was on the way back up, but that’s enough Temozolomide for the moment.

Thinking back to warnings of solutions with no scientific backup, I’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! I’d no idea my mother had been speaking without scientific back up. A pint of Pomegranate barman.

I’m assured that missing the 6^th week will not make a difference and after a couple of months break, February see’s me resume Temozolimide at 5 days a month for 6 months. Dosage has almost doubled at 240 mg but it does not give me any 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. “Whats it looking like?” I ask. Her response takes me back - “It’s fab, fantastic, everything has improved”. She skips down the corridor as I go into Dr Beaney to get a more considered view. “Excellent, could not be better. There is no visible sign of an active Disease”. 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 and when I do, make it very slow. That’s not a problem, I know I’m not up to it yet and my employer, The Royal Bank of Scotland, has been tremendously supportive.

As part of our contingency planning we had moved house to be nearer Lisa’s family and friends. I go to my new GP. It’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, very reluctantly, to allow me back.

It’s 13 September, my first official day back, some 277 days after I was last there. I had 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 that they were a little shocked. In fact they were very, very shocked and in those earlier occasions, I hadn’t being looking as good as I’d thought .On reflection I do remember being shadowed round the office as if I was someone that was ill, about to keel over.

I start to make inroads into 1400 e mails. I’m wiped out by 2.30, declining the offer of a taxi, I leave for the station. My big achievement that day was remembering the metal box over there was for confidential waste. It was like a light switch. I was going to need 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 a redundancy package was too good to miss. I left with regrets, Royal Bank of Scotland had been so good to me and 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 me if I want help out on a project. For both parties, it’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’m back.

Ever since the operation I’ve had regular MRI scans. The period between them has lengthened to 6 months. June was my 13^th post op scan and my consultants analysis of it was the same as the previous one “that scan could not have been better”. Next scan December – bring it on.

I’ve stayed positive and kept myself active. That first weekend after the operation I sat down and started to write things up under the title of “Survive & Thrive – my encounter with cancer”. This 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, I’m asked a lot of questions about dates. Is he testing me for memory loss? I flick back through my notes and I’m flattered as he declares “Excellent, we now have a complete record of your treatment!” Later I publish these notes via the vanity publisher Lulu.com.

I’ve grabbed moments of humour. Apologies to the salesman in Comet for the “earth swallow me up” moment. He was pestering to sell me 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. I’m asked to look after my scans “as your filing system is probably better than ours”. 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!

I’ve ad dressed the All Party Brain Tumour Support Group at the House of Commons where I called for the need to move from an atmosphere of “Care to one of Cure”. I’ve lobbied whoever I can: M.P’s, drug companies, research institutes even Cancer Research shops. Most important of all, I’ve seen Lauren grow. Now six, there are enough clues to tell me that I will need to be on top of my game come those teenage years!

I got used to seeing newspapers hail another cancer breakthrough only to see that breakthrough relating to cancers below chin level! However, Brain Tumours will be beaten and 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 NH S 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 “Just believe in yourself and you will do tremendous”. To be continued………