Category Archives: Diagnosis and Initial Treatment

What We Did Next – Dealing With the News, Or Not

At this stage everything became a little hazy and hard to comprehend for me. Kady, well it can be imagined how she was. We left the hospital having been told to expect a phone call the next morning regarding that rapid intervention treatment. Although we clearly couldn’t comprehend it at the time, we were in a state verging on complete panic, our minds reeling. All I could think was that I had to tell my family – Mum, brother and sister, so immediately, in the car on the one hour drive home, I started the painful experience of calling them, it was utterly horrendous.

It’s strange but being told you are going to die is somehow an easier experience than it is to have to tell your close family. I wish we’d waited 24hrs for Kady and I to get used to the idea, before we did actually tell anyone else. In fact I’ll go so far as to make that a top tip, although it is difficult because you will be in panic mode, but try to think very carefully about who you tell first and when. Once the word gets out the barrage of very well-meaning visitors, phone calls, texts and emails will start, instant celebrity. Once it does, you will find it very difficult, in fact impossible to get the time for yourself to start to adjust to what’s going on.

Kady and I spent the first three weeks after receiving the news entertaining visitors to our house. So not only were we mentally exhausted and in deep crises ourselves, but we were also physically spent from lack of sleep, cooking, making constant cups of tea and tidying up for well-wishers. It was all so well meaning and done with kindness that I feel awful saying it, but the sheer volume of the enforced entertainment we had to do in combination with what we were dealing with, brought us closer to breaking point than anything else.

What we really needed was to be left on our own. Neither of us have any family in the area who could help us. People can’t be faulted for caring though and they quite naturally wanted to be there for us, it’s impossible without being rude to explain to them that they’re not helping. With the benefit of hindsight, we should have been more firm about it.

The Doctor before we left his office had immediately put me on an extremely high does of steroids to reduce the swelling in my brain. He’d explained that this swelling was putting me in the most danger at that time and I was at risk of having a major seizure at any moment from which I would potentially never wake.

Well the drugs worked and what a relief, the horrendous headaches I’d been suffering for months were gone within 72 hrs. The drug – Dexamethasone – comes with the most awful side effects http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/steroids that on top of everything I spent the next 4 weeks learning to manage and now months later am still struggling to deal with. What  a relief to have the awful headaches gone though after so long.

The Diagnosis – Being Told You Have Terminal Cancer, It’s Incurable and It’s Going to Kill You

The Neuro Surgeon didn’t mince his words and as I best recall he said ‘well Mr Parke I am afraid it is not good news, two weeks ago when we looked at your MRI scans that were taken 3 months ago (!!!), we could see there was at least one tumour and two others that were rapidly developing. Unfortunately what we see now only a short time later is 2 very large tumours in your brain with 2 others developing rapidly, as well as what looks like numerous other smaller ones starting to develop.’ He showed me some of the scans of my brain and it looked like someone had smashed a box of eggs inside my head – the tumours looked like black holes with the swelling they cause appearing on MRI taken with contrast, as what looks to the layman like egg white. This swelling was unsurprisingly the cause of my progressively worsening severe headaches and what I had been fighting throughout my busy summer of preparation for Afghanistan. These images are now on this blog under ‘MRI Scans’.

Turning to the CT scan images he said ‘I’m afraid also that the scans of your chest show that there are a number of tumours in there too. Whilst these are not AT THE MOMENT life threatening they are clearly a major issue that will need to be dealt with at some point.’

My mind was reeling, Kady was in shock, but the obvious question I had to ask was what does all this mean? ‘I am afraid this is Terminal, there are simply too many tumours for us to operate on and we are not going to be able to cure you. The best we can hope for is to alleviate the onset of symptoms, with rapid intervention treatment starting immediately, you may have a few short months to live. What are a few short months? Four to six, without treatment, less. If there were only one or two brain tumours we could try surgery to remove them, with so many that is simply impossible.

He told me the spread and type of tumours was absolutely classic Malignant Melanoma http://en.wikipedia.org/wiki/Melanoma that had metastasised – in other words had using my blood supply thrown tumours out around my body into my brain and lungs. Malignant Melanoma, nasty little bugger. I was never a great one for sunbathing and had never been on a sun bed in my life, I’d had no idea it was so dangerous. Now I’d just been diagnosed with Stage 4 Malignant Melanoma with a 9-15% survival rate. http://www.cancerhelp.org.uk/type/melanoma/treatment/advanced-melanoma

 

Bad News, Another MRI and my First CT Scan with Contrast Agent

We finished our particularly busy period at work at the end of July and then thankfully went straight onto Summer Leave, boy I needed it! Out of the blue in my second week  around mid August the telephone rang. I was amazed and not a little worried to hear my consultant speak, ‘well Mr Parke the results of the Multi Disciplinary Team meeting were not as positive as we had hoped, the members all agree that you have at least one lesion in your brain and possibly two others rapidly developing. It is imperative that we now conduct more scans, can you come back next week? My first thought was ‘how the hell did YOU miss this?!’

Clearly this was serious and I was floored by the news, however Kady and I were busy planning our wedding  for the following year and had booked a trip abroad to the Greek Island of Kefalonia in order to tie up the details. I explained the situation and could it wait a week – bearing in mind this had already been dragging on for months now(!!!) – yes it could.

The Spire Hospital Southampton

So less than 48 hours after getting back from Kefalonia Kady and I found ourselves at this charming establishment waiting to see the ‘Top Man’ brain surgeon in the South of England. We had to be there a few hours early for the MRI and CT scans  and I had to drink some concoction that was like some crazy protein drink, to fill me with tumour reflecting magic juice. I then went in for a CT scan of my chest,abdomen and pelvis http://en.wikipedia.org/wiki/X-ray_computed_tomography followed by yet another MRI of my brain http://en.wikipedia.org/wiki/Magnetic_resonance_imaging both with further contrast agent injections.

Although it didn’t occur to me at the time, they clearly already had a good idea in their minds of what was going on and were giving me the full suite of tests to confirm it. As always the medical staff were exceptionally friendly and helpful. The worst part was in the middle of the CT Scan when they injected me with the contrast agent and it felt like there was a volcanic eruption in my chest and I had an urge to wet myself at the same time – apparently they normally warn you about this. They must have been having a bad day.

CT Scanner

Both scans were done and I may have been being paranoid but I thought I could detect a change in the attitude of the Radiologists who could see the results. Kady  and I went straight from the Radiology Dept to see the Neurosurgeon…

Intracranial Swelling – Pressure Headaches – and an Emergency Admission to Hospital

By late July 2010 – what a scarily rapid progression from March 2010 – my head and neck pain was hovering about the 7 or 8 figure now, I couldn’t sleep and was having to fight really hard to keep on top of things at work. As the boss the guys who worked for me quite rightly expected me to be on top form at all times, this was becoming increasingly difficult when all I wanted to do was lie down in a dark room…

I was experiencing severe worsening of the headaches in the morning, when reaching down to pick something up, when sneezing. Basically when doing anything that involved moving my head, left, right, up or down but particularly when bending over. I don’t mean just a little twinge either, the pain scale was now on a 7 or 8 permanently when resting and when doing one of the above activities, it rocketed to a 10 (living hell).

I’d really started to dread having to tie my Army boots in the morning, it literally was an ordeal of pain and if I dropped something, oh the thought of having to bend over to pick it up could easily ruin my day. All of this whilst trying to maintain a front of being on top of things at work – which I think I just about managed although thank God I had such a good team supporting me!

I went back to my GP who correctly – with the benefit of hindsight –  identified that these were classic signs of pressure headaches caused by the intracranial swelling from the tumours in my head having a merry old party and causing my brain to be crushed against the inside of my skull!

What followed was a trip to Salisbury hospital, where I  hung around for a few hours and was eventually discharged having had no tests aside from yet another physical neurological examination which was normal. Apparently I hide brain tumours well. They did give me an injection for migraines which despite telling them at  the age of 36 I’d never had, they still seemed to think was the way ahead. Christ that auto-injector in the leg hurt, strangely enough did absolutely nothing for my headaches. With the benefit of hindsight I should have just called the Consultant I’d been seeing although to be honest, I was in so much pain I couldn’t think straight anymore and it’s not the kind of thing us mere mortals do is it. I would now though, Consultants are like my best pals these days!

I felt thoroughly depressed as I left the hospital knowing all I could look forward to was a return to taking the maximum daily doses possible of neurofen and paracetamol. I had gotten to the point where I was living on blind hope and desperation, in permanent severe pain and starting to despair…

Rapid Intervention – Whole Brain Radiotherapy (WBRT)

Wow is all I can say, it may feel like the NHS  drag their heels in ordinary circumstances but when it all goes wrong, watch them move. I have never been so reassured in my life as I was over the next few days. We got our phone call and were backwards and forwards to the Oncology Department at the Wessex Neurological Centre at Southampton University Hospital Trust.

http://www.braintumoursurgery.co.uk/MDT.html – Dr Geoff Sharpe is the man dealing with my brain tumours, I’d trust him with my life, well I guess I already am.

I was assigned two consultants, one to deal with my head which was the immediate issue – Dr Sharpe as mentioned. Professor Christian Ottensmeier is the second and he now seems to have taken on my overall care including dealing with my chest tumours.It was immediately apparent upon meeting them both that these people knew their stuff, were talking regularly and they had come up with a plan.

It was explained to me that the biggest threat to my life at that time were the tumours in my head which were displaying all the signs of bleeding and I was therefore at high risk of sever neurological damage and immediate death. The situation needed to be tackled without delay. Within 4 working days of the diagnosis I had been sized up for a face mask – which they use to get your head in exactly the same position each time – and booked in for a 10 day course of Whole Brain Radiotherapy. There’s nothing subtle about this, they needed to put the brakes on, stop the bleeding by essentially giving me a huge whack of radiation energy. This link gives you an idea of what it’s all about http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx

I was to have 10 sessions of emergency treatment, which involved me going to Southampton hospital Mon – Fri for 10 sessions. It was an hours drive from home which was the most exhausting thing for me. Yet again the Army stepped in and was able to provide a vehicle as it would do for anyone in a similar position. With my diagnosis and risk of neurological failure I had of course immediately lost my driving license. Officers from the Regiment volunteered and took it in turns to drive us – Shelley, Mac, the two Matts, Murray, I can’t thank them enough. Not only did they put up with my increasing grumpiness as the treatment and therefore extreme tiredness took its toll, but they also helped raise both mine and in particular Kady’s morale.

Okay, I’ll let the pictures speak for themselves:

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As time went on over the course of the 10 day session I began to feel steadily more and more tired, which is a natural side effect of having your brain purposefully burnt. Mentally I was on fire from the steroids, physically I was an absolute wreck. This was all compounded by the pressure we’d put ourselves under with the planning for the wedding and my inability to sleep due also to the effect of the steroids. I was constantly fighting to stay positive but inside I just felt horrendous. One of my biggest problems after the WBRT was just falling asleep randomly, literally whilst speaking to people. Although inconvenient it was nice to be getting some sleep again although it didn’t last for long. I just learnt  to roll with it! The steroids also make your major muscles waste away and your face get fat. Not the best look! I think the worst thing is just losing all your energy, one days activity I’ve found can leave me drained for up to five days after wards.
 

How It All Started

School in Basrah

I’ve always been a slave to the desk spending far too long there, driving myself hard to do the best I can for those who work for me. My job has for most of my life been not only my career, but also my hobby and my passion. I don’t think the military can be anything other than a lifestyle choice if you’re to have any chance of happiness and success in it.  Now all those hours sat hunched over desks built for average sized people and me being about 6ft 1 has meant that neck pain is nothing new to me. I’d lived with a mild ache for years but a good run or session in the gym normally got rid of it. However, at the end of 2009 my neck pain had slowly gotten worse and knowing we weren’t due to deploy on operations for at least a year, I thought now is the time to finally do something about this. Heat pads and enough neurofen to down a horse were losing their effectiveness and I was a bit sick of living with the pain which had for some reason started to get worse lately.

So in December 2009 I went to see my military GP to try to procure a referral for physiotherapy. He was as helpful and efficient as always and before I knew it I had my first appointment. The military have a fantastic and rapid referral system which aims to get initial assessments and quick impact treatment commenced as soon as possible. Great news we’ll soon have this cracked I thought. Physio was a nice guy, very efficient and when I had the initial assessment explained to me that the relatively low level headaches I’d been getting – the medics use a pain scale of 1 – 10, 1 being okay, 10 absolute living hell get me an ambulance now and  I was on about a 2 at this stage – were very common in people with postural problems and neck pain, he had all sorts of posters that through the use of diagrams explained the theory. It all seemed to make absolute sense and was very much the most obvious explanation.

So, off we went on the great Physio adventure. Neck pummelled, heat applied, taking a break regularly from the desk at work, stretching exercises, feet and stride analysed and corrected, he even tried sticking needles in me! We did it all and at no stage could I fault his logic, because for 99.99 % of people that was the most  likely reason for the neck pain. As an aside, what was bloody typical for me was that here I was in a room full of very nice, fit and healthy female physios and I got the hairy ar*ed South African bloke.

So all good you would think, well  by about March 10 there was no improvement and to top it all, the damn headaches were getting worse! By this time I was getting some other symptoms which were worrying me somewhat. The strangest for me was a numb spot in the middle of my tongue which seemed to come and go at random. It made me feel like I was lisping, my mouth was filling with saliva and I was becoming paranoid I sounded like Elmer Fudd. I’ve also had perfect 20/20 vision all my life, but was finding that I was having real problems when driving at night, getting tunnel vision which sometimes sprang up on me so suddenly, I had to pull the car over.

Maybe I was just turning into an old git and the time had finally come for me to have glasses when reading and driving. So I had an eye test and no, no problems there. The well meaning Optician came up with some theory about my having developed a habit of fixating on objects in front of me when driving, which caused blurred vision. I wasn’t convinced but tried the techniques he suggested which surprisingly seemed to help a bit, although I guess maybe it was just psychological and the evenings were getting lighter anyway. I’d also started to get what I call ‘shaky hand syndrome’, locking the door of the house when leaving was becoming a very frustrating two handed affair and I also found that I kept dropping things, every now and again my hands just seemed to lose their link to my brain. It was infuriating, I would be wanting an action to happen and it just wouldn’t, very hard to describe and very annoying. This was also the cause of some comedy stumbling moments when the same happened to my feet and legs. As if all that wasn’t enough, my historically poor memory had become even worse.

I didn’t really know what to make of it all but thought maybe it was all just down to stress and I needed to in the words of the often used phrase in a hard-worked Army take responsibility myself and ‘correct the work/life balance’. How could anyone possibly suggest that in the current climate people in the Army may be overworked and under-resourced?! Anyway. I did feel stressed at work which I shouldn’t have done, I’d done a similar job as a Squadron Commander albeit in a slightly different organisat1ion before, where we put up to 200 new recruits at a time through basic training. This in itself with all the changes to rules that came out of the Deepcut Inquiry, was an extremely stressful period. I therefore wasn’t phased by my current job at all and in many respects was better supported by the hard hitting planning team I now had supporting me which for structural reasons I hadn’t had in the previous job.

I certainly didn’t struggle with the work we were doing, the major problem was that despite this I was having to mentally work very hard, to think, to operate, to just be my normal self. I realize now, looking back, that it was how I was starting to feel physically that was putting me under additional pressure and not my work. As a new experience it took me a little longer to bring it all together. I’ve spent my whole life used to being sharp all the time, working on the edge, thinking and anticipating. I’d without realizing it slipped into a mentality where I was just exhausted all the time and wanted to be left alone. It was incredibly frustrating.

So around April 10 I was at the physio for another routine appointment – for some reason I cannot recall my normal person was away. However there was a lovely lady standing in called Vicky who decided to have a go at beating my neck up. Before she started she did a full patient assessment during which I told her all of the above paragraph. I must have sounded like a real sick note. I clearly did too good a job because when I’d finished talking she didn’t want to do anything to my neck instead telling me she was referring me back to the Doctor with the advice that I be referred to a Neurologist to get my neck scanned. Dammit, more delay! She explained that I had described a number of what they call ‘Red Flags’ and she was therefore not happy. I could only respect  her professionalism and off I went to make an appointment back with the Doc.

The Doc agreed and referred me to a Consultant Neurologist whom I saw shortly afterwards. He gave me a full neurological examination followed by lots of reassurance, the symptoms were very non-specific and of course the brain is still not fully understood. It could be any number of things but most likely nothing at all and related entirely to postural problems. However, there was no harm in doing some precautionary MRI scans to make sure we were 100%. I had BUPA cover – if you’re military or immediate family of then it’s nearly a 50% discount  http://www.bupa.co.uk/uk-products/hm-forces-mod The Neurologist agreed that once it was done and  confirmed there was nothing wrong with me skeletally then the Physio could really go to town on my neck and sort it out. Happy days!

MRI Scan Pictures

Okay got the MRI Scans today, think the pictures speak for themselves. Three big tumors which are unmissable at roughly the 8, 10 and 2 O’Clock positions and a number of smaller ones, although think you must need to be a Neurologist to spot those ones. The scans are in the main looking from below up through my head, so the 2 O’Clock tumor is actually in my left frontal lobe and not the right as it appears. The clouds of white you can see in some of the scans are the swelling that was giving me the horrendous headaches and making my busy summer at work not so much fun. Dexamethasone (the Roids!) have hopefully reduced most of that. The headaches, after a brief resurgence and consequent increase in Roids a couple of weeks ago have certainly gone.

Looks like a bad day on the range with a shotgun. Have chest scans as well but again I think you need to be a Consultant to make any sense of them, so I won’t put them on here. The tumors are small which is good, but bad because they’re potentially going to have to slit me open like a fish in the next couple of weeks to get biopsies from them before I start Chemotherapy. I’m just hoping at the moment that the next batch of treatment isn’t going to run through Christmas and make that  unpleasant, we shall see…

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Going Bald

I’d initially decided to jump before I was pushed and after the first few days of Radiotherapy, my head was starting to feel quite burnt and I couldn’t really wash my hair as a result. So I first enlisted the help of a friend Matt King to cut it down to a No 3 all over. A few days later my hair literally just fell out in one evening, it was a bit freaky but I was glad I had mentally prepared for it. Matt then took me down to a No 1 however a few days later I noticed  crazy bald stripes all over my head. With Kady’s help I then went completely bald. I’m sort of used to it now, have purchased the world’s biggest selection of hats, with Autumn here having a cold head has become a real issue!

No more trying to hide the baldness – unlike Murray and Phil – saving a fortune on shampoo and haircuts!

Winter has been HORRENDOUS with no hair, I could open my hat shop now I have so many variations of woolly hats! I’ve discovered that one of the things I detest the most is having a cold head! When we have visitors I always take my hat off when they arrive – it looks a bit odd – but within 5 minutes I’m apologising to them and putting my it back on! My hair is slowly starting to come back, for the first time in nearly 5 months I am starting to get sideburns again, but it’s not coming back on top, grrr!

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