Short But Not So Sweet – Feb 2003

For the meeting with Dr Brada I was well prepared.  I was seeing him with my friend, Sue, who had been with me during my initial collapse and she had been far from idle in the interim.  She had undertaken loads of research, so we could really quiz Dr. Brada as far as possible on any possible options available.  The internet was still in its youth but nonetheless Sue had trawled through mountains of pages and we had lined up questions on things that we had come across that we were hopeful might benefit me.  Sue is a solicitor, incredibly articulate and not easily intimidated so I was confident we would find out whatever there was to discover.  

The appointment was at The Royal Marsden, I should point out this was a private appointment; one of the many benefits from my employer was private medical cover.  During this period, it proved invaluable as it meant I could seek further opinions without worry about the cost.  It was also providing me with counselling for which I was very grateful. I fundamentally disapprove of private medical care but I’m afraid my principals had shot out of the window and were rapidly disappearing from view in the light of my current predicament.

So, Sue and I met up in London and trotted off to the Marsden to see what was in store this time. I can’t remember what I was feeling as we headed in.  Inevitably I would have been hopeful of some new exciting news.  I can’t help myself, it’s my nature.  For me, hope springs eternal.  I’m not sure whether this is a bad thing or not.  It does mean I am regularly disappointed I suppose, as my hopes aren’t necessarily met.  But I can’t change the way my head is wired any more than someone with the opposite outlook can.  I have tried to change it.  I’ve tried heading to appointments with a voice of doom playing, almost as an insurance, as though if I’m thinking the worst, the worst can’t happen.  But that is a more recent trick (spoiler alert it makes not a sod of difference to what you will be told, that won’t change whatever head voodoo you try) back in those days I still bounced in expecting the best.

My memory of Dr Brada is of a neat, dapper man, which makes him sound rather like Hercule Poirot.  And he was perfectly charming.  Charming but not inclined to entertain our hopes of an exciting, hitherto unexplored option.   Each question we asked about was adeptly batted away.  Gamma Ray knife? Not suitable for my tumour.  Stereotactic radio surgery?Not for me.  Various other treatments were offered by us, all were dismissed, kindly but firmly.  He had no truck with any of our nutritional plans.  They were very firmly dismissed.  In fact, the entire meeting had the air of dismissing some naughty but well-meaning students.  “Go and have your radiotherapy treatment.”  I was told. “Don’t delay, get on with it”.

And so I did.  Sometime later, when everything was turned upside down I felt quite a strong degree of anger towards Dr. Brada but I think I have finally let that go.  He wasn’t really to blame as he was not a surgical specialist I don’t think; his field was very much radiotherapy methods and on those I assume the information he gave was correct.  And if he did fail to pass on information that might have helped me, I can’t imagine it would have been from malice.  I imagine he may have assumed the neurosurgeons had gone through all surgery options before deciding my tumour was inoperable,so no, my ire is not really directed at him!

I returned to lovely, warm Dr. Jeffries, ready to start the process of radiotherapy.  The treatment would be done at Addenbrookes as their equipment was superior in terms of how well directed it was and would be less likely to cause damage to the surrounding brain.  I would be fitted for a mask and then the treatment itself would be every day for six weeks.  This was potentially difficult given I live nearly two hours travel time from Cambridge, but the train line was just opening between Norwich and Cambridge so we thought we’d be able to manage.  I think Addenbrookes said they’d schedule me in to allow for me to travel there.  The treatment, once there, would only take a matter of minutes.  There was a further small but surprisingly significant blow to be dealt.  The radiotherapy would cause me to lose my hair, some of the loss would be permanent.  I was shocked to discover tears pouring down my face.  Why did I care about a stupid thing like hair loss? I don’t think I’m a terribly vain person, I’m certainly not highly groomed; if I get out of bed, manage to shower, dress and whack a bit of lippy on that’s a good day.  But of course, it’s nothing to do with vanity though I’m not sure I understood that then.  It’s the visible sign to the rest of the world and most importantly to yourself. The visible, inescapable sign that something’s wrong with you.  That however much you may try to pretend that nothing’s changed, that life is still normal, It really isn’t.

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Preparing to Fight – Feb 2003

If it sounds thus far as though life was simply a succession of medical visits with nothing in between, then that’s not so far from the truth.  Life was continuing, broadly normally.  I had suffered no further full seizures thanks to the new medication.  Instead I was experiencing what the doctors described as focal seizures.  These did not involve a complete loss of consciousness and in fact I was awake throughout them.  But it was a most bizarre, discombobulating sensation.  I would feel a buzzing type sensation in my head, my left side felt numb though I could still talk and move.  They didn’t cause a major problem but were an unpleasant reminder that however normal I may still be otherwise, there was something bad happening in my head.  Some were more severe than others, I remember one lasted nearly 20 minutes and the longer ones scared me as there was no knowing it would come to an end.  From an entirely selfish point of view they were worse that the full seizures because I was aware of the whole thing.  I was very frightened about having them when I was alone with the kids but after a long discussion with my G.P. was reassured that I was still a safe parent.  I learned to stay calm and breathe until they passed.

Between visits we undertook as much research as we could.  We were trying to find out as much as we could about my condition, using all the tools at our disposal.  Friends sent us books, newspaper cuttings, information, whatever they felt may be useful.  And some were particularly helpful.  Lance Armstrong’s’s It’s Not About the Bike was a hopeful read with his tale of overcoming testicular cancer including the excision of a few brain lesions along the way.  A most upbeat tale and well before we all found out what a cheating, lying bastard he was so that was pleasingly hopeful.  Another friend sent a book on meditation which I loved and I remain convinced to this day that the mind is an incredible, under-utilised tool which has the capability of all kinds of amazing feats.  Sadly I‘ve never really mastered the art of meditation. Though I start with the best intentions I inevitably drop off to sleep within moments but it is an amazingly useful tool for helping to relax and stay calm in the often-stressful medical situations such as scans.

I became fixated on one book in particular; Everything you ever wanted to know about cancer but were afraid to ask.  I gave away my copy some years ago and try as I might I can’t remember the name of the author.  But for a year or so this book was my bible, comfort blanket, freedom fighter source material.  Its author was the father of a daughter who happened to have a brain tumour.  What luck!  A book, not only about cancer but about my sort of cancer.  Hers was a more aggressive tumour than mine but he’d been keeping her going, against the odds for some time now.  He did advocate surgery as first line defence which was a bit of a problem for me but he also had loads of other stuff up his sleeve and, crucially he’d gone through radiotherapy with her and had tips on what to expect and how to help.  Mostly though this book offered a lot of information on ways of using nutrition as a line of defence.  With the encouragement of my sister, Catherine, I determined to give it my best shot though I baulked at some of the more extreme approaches he was advocating.  Coffee enema anyone?  But I started to modify my diet in all the ways I could, I added in zinc and selenium and various other exotic nutrients to give myself a fighting chance.  I also started to try some yoga.  Knowing now, what I didn’t then, I still feel the poor chap was ahead of his time.  I tried Quinoa on his recommendation a good 10 year before it became a staple of the Waitrose shopper.  I found it disgusting then and am no fonder now but what it did do was give me an illusion, a thin veneer of control over my own destiny.  To be shaken if not entirely shattered by my next medical encounter, with Dr Brada.

Good Cop? – Feb 2003

David and I trek over to Addenbrookes following a couple of weeks of relative misery.  It’s hard to wallow in despair when you are caring for a lively toddler and a growing baby.  But when I look at their sweet faces, faces I won’t now see develop into children, I want to howl with rage.  Why me? What have I done to deserve this?  Is there something I did or shouldn’t have done?  The doctors have all said not but there must be some reason why I’ve got this thing in my head.  And while having the children to care for keeps the worst of the rage and despair at bay, every time I look at them I’m reminded that my children will grow up and won’t have any memories of me, won’t know the sort of person I am.  They’ll just have pictures to look at, of them with a stranger.  All I want to do is cry.  But it’s hard to cry when I have to focus on their needs.  They are oblivious to our pain.  And we want to keep it that way.  I’m incredibly fortunate having Debbie on hand to ensure life goes on for normal for them while we cope with all the bad news.

We have an appointment in Oncology, to see Dr. Sarah Jeffries.  Dr Jeffries is a warm individual, about as far removed from Dr. Death (for that is how we have come to refer to him) as can be imagined.  Dr Jeffries is accompanied by a nurse, Kate and they are to be my team.  We discussed the scans and they reiterated that surgery was not an option as the tumour, which was located in my right parietal lobe, was too close to my motor function, any attempt to remove it would run the risk of severe damage to my left leg.  I explained I didn’t mind losing the use of my leg if it got rid of the tumour.  They patiently explained that wouldn’t work as I’d lose quality of life and there was no guarantee the tumour wouldn’t return and that tumours don’t necessarily grow back into the space created by the removal.

This did not mean, however, that there was nothing more to be done.  They explained they could use radiotherapy and that they had the most up to date equipment to do it at Addenbrookes.  They’d machines that could really target the tumour with minimal damage to non-tumour brain cells.  It would involve six weeks of daily treatment at Addenbrookes but, radiotherapy, when successful, had the potential to hold back the tumour for up to 10 years.  10 years!  This seemed a lifetime!  Long enough for cures to be developed, long enough for my babies to grow, long enough for them to get to know me.  Dr. Jeffries said they would start things in motion but in the meantime, if we wanted a second opinion, she suggested Dr. Brada, at the Royal Marsden.

At the end of this meeting we were asked if we’d give some feedback to another member of staff.  I don’t remember their role or exactly why they wanted to talk to us but the gist of it was that they had gathered the pervious meeting with the neurosurgeon had not gone terribly well and could they get our feedback.  I’m not sure we knew what to say, I’m pretty sure we didn’t mention we referred to him as Dr. Death – and still do, to this day.  In retrospect I wonder if there is a good way to tell someone they’re fucked?  I wouldn’t want to do it.  Perhaps it had been his first time.  I did point out it would have been useful to have the meeting we’d just had immediately after the one giving the bad news, to give some glimpse of the hope I now felt.  I think they nodded, cited logistical difficulties but ‘took it on board’, or something to that effect.  And perhaps they were right to give us time to really feel the full assault of the bad news before dangling a carrot.  I certainly left that day with more of a spring in my step.  Indeed I felt I’d won the jackpot.  10 years – something I could work with.

An Abnormality – Jan 2003

 

I stayed in the N&N hospital for the next few days having tests.  Only 5 short months earlier I had given birth to Posy here.  Well not quite in here, rather she was delivered in the car park.  Posy likes to do things her own way.  And talking of Posy, I was having to be separated from her for the first time for any length of time. What would they do for milk?  I’d been breastfeeding to that point, and expressing the milk she then refused to take in a bottle.  Well no longer.  I was told she couldn’t have my breast milk any more because of the anti-epilepsy medication they were putting me on. I was desperately worried, what would they do for her?  She was starting to have some solid food but a baby of that age should be having most of their nutrition through milk.  I was also desperately saddened by it.  I liked breast feeding.  I had fed Ned till he was nearly a year and enjoyed the closeness it offered.  Given the battles we’d had to get her to take any milk from a bottle I was not confident she’d get what she needed.  In the event, that was something, at least, I needn’t have worried about.  Remember all those people who insist on lecturing you about how your “fussy eater”, “veg refuser”, “bottle denying” offspring won’t starve themselves if you just persevere?  Aggravatingly it turns out they’re right.  Posy didn’t even put up a fight, just smiled sweetly and glugged the milk down as though all those months screaming when anyone tried to bond with her by giving her a bottle had simply been banter.  Like I said, Posy does things her own way.

I’d only ever spent nights in hospital previously when I had my children so this was a new realm.  There are screens by your bed with telephones, it’s really rather pleasant if you’re not actually feeling in any way ill, which I wasn’t.  I’m desperately trying to remember how I did feel, back then?  I don’t think I felt worried about myself.  I think I was anxious about work but I used the bedside phone to call my colleague and friend Charlotte.   “I’m in hospital!” I said.  “I know, I can tell by the number”, she replied. (She had been a healthcare researcher).  I filled her in and she reassured me that all was covered.  Then I started having my tests.  I really don’t remember much about it now.  There was an EEG, a CAT scan and an MRI.  I don’t remember how many days it was I was there.  But I do remember the doctors coming to speak to me about what the tests had shown.
“There’s an abnormality on your brain”.  These were by far the most devastating words I’d ever, have ever, heard.  I don’t remember anything else from that conversation, I can’t even remember if anyone was with me, David or my sister, Catherine, though I assume they didn’t tell me when I was alone.   Now it was all real, definitely happening and I had no idea what to do.  On my brain.  An abnormality.  What did that even mean?  Was I now one of the unlucky 0.1%?  There were no answers forthcoming.  I was told that I’d need to be sent to Addenbrookes in Cambridge for a biopsy but that in the meantime I’d be able to go home.  I have a memory of another kindly, well-meaning young doctor telling me not to worry, if it was a grade 4 I’d be being “blue-lighted” to Addenbrookes.   I had no idea what any of these words meant but I don’t think I took comfort from them.

I also remember, when my sister was with me there one day, she asked a nurse if I was allowed to be taken outside for a cigarette.  “Of course you can” she said in a compassionate and was it perhaps a somewhat pitying way?  She thinks I’m already done for, I thought.  I went for the cigarette but resolved to stop completely.  I didn’t know what was coming but I was going to try my hardest to meet it fighting.

Once home I went to my local G.P. practice seeking clarification.  My usual GP, yes I have a usual GP we’re a small rural community and our practise is fabulous, was away so I spoke to another.  He was kindly, tried to help and explained the biopsy would be looking to establish in more detail whether the abnormality found was benign or “something more sinister”.  So all I could do was wait, for the biopsy at Addenbrookes.  Anyone who has experienced unexplained illness will tell you, the waiting is always the worst part. But I’m not sure for me, that that stage was too bad.  I’m not one of life’s worriers and I was back home, with a toddler and a baby so life was fairly lively. And I felt, still, perfectly well.  The Tegretol medication I was taking had stopped the seizures so they weren’t bothering me.  I wasn’t allowed to drive but I lived in a small town with everything on hand so that didn’t then cause a problem.  There was nothing for it but to wait.

Appointment with Doom – Feb 2003

I don’t recall how long exactly it took for my biopsy appointment at Addenbrookes to come through, only that it felt like forever.  I felt then (and to my shame still do!) a foolish pride that my referral letter from the N&N described me as a charming 32 year old lady.  I’d never knowingly been described as charming before and I rather liked it.   All I vaguely recall is going to the hospital the evening before the operation and a very kind female doctor shaving patches of my head on one side.  I must have had the operation some time the next day. I don’t even remember how long I stayed in.  But I do remember vividly a conversation I had with the surgeon, I think, following the biopsy.  “I’m generally a very positive person”, I said, “but I do want to try to prepare myself for what’s ahead.”  He took my hand, gave it a gentle squeeze.  “There’s always a treatment”, he replied and I felt very comforted.  Entirely reassured.  Once they knew exactly what it was they were going to deal with it and all would be well again.  I relaxed and went home much happier to wait to be called back for the results.  Again I don’t remember how long this wait was nor how my mood was.  I think all felt okay, the busyness of my everyday life continued though I was not working at all at this stage, my company had me signed off on full pay so I had no financial concerns, something I’m well aware made me far more fortunate than the vast majority in a similar position.

The day came for me to be called for results with the Addenbrookes team.  David was coming with me and for some reason, we decided to make the trip by train, rather than drive.  Just in case the news was bad, we felt it would be better not to be driving.  This was most unlike us.  Perhaps this was our insurance policy – if we are prepared for the worst, the worst won’t happen.  If so, we had gone with the wrong provider.  But a train route had recently opened up between Norwich and Cambridge so we gave it a whirl.  I think we made plans on that journey, of things we do with our garden, planting we’d do, flowers we’d nurture. Planning a future we desperately wanted to be seeing.

We went in to a room and saw a single doctor, a neurosurgeon, quite young, not one I had met when I had my biopsy.  I don’t remember his name.  What was the preamble?  Did he bring up images of my scan?  I don’t think so.  I imagine he told us something about the frozen section not being entirely clear but that it was a grade II/III oligo-astrocytoma in my front parietal lobe. He probably talked about how it was going to affect the motor function on my left side because the right side of the brain controls the left of the body. There was probably other technical information I didn’t take in.  What I did take in was the following words, “It’s inoperable and it’s incurable.”  My world stopped.    I believe he said “I can’t tell you if you’ve got 3 months or 3 years. “, or words to that effect.  I heard nothing after “3 months”.  But there’s always a treatment!  I wanted to scream at him.  The other one promised me, there’s always a treatment.  Much of the rest is a blur, David and I were both sobbing uncontrollably.  The doctor was clearly uncomfortable but I think he told me that I would be feeling anger and be in denial and that he would refer me to Oncology who would discuss next steps.  The journey home was almost unendurable.  It was cold and grey on Cambridge train station and all I could think about was my children and their young lives and that I wasn’t going to watch them grow, I wouldn’t be around to nurture them, be there for them when they were sad or hurting.  That I would be gone, before they even had a chance to create memories of me.

99.9% – Jan 2003

It all began in January 2003.  This was a very happy time in my life, I know it may seem that I have rose-tinted glasses but it really was the best of times.  I had just had Posy, my second child.  I was enjoying a lovely period of maternity leave.  I have a very strong memory of being in the kitchen of my old house, with Ned and Posy, the song “Gorgeous” came on and I danced around singing along.  I think I felt absolutely content with my lot. And why wouldn’t I?  Two beautiful, healthy children.  A loving husband.  A secure home, no real financial pressures. I’d finally had some success with my perennial battle to lose weight and was feeling good about myself.   The only cloud on the horizon was my imminent return to work.  It was a great job, working from home but I’d become less enamoured of it in the period leading up to maternity leave and had been toying with a change though I’d no idea to what.  So if I had any desires for anything different, it was that I was not entirely enthusiastic about resuming my work in a couple of weeks.   Be careful what you wish for.

In early January 2003, Norfolk was hit by a spate of cold, snowy and icy weather.  I was into my final week of maternity leave and my most pressing problem was how to convince Posy to take a bottle, something she had persistently and determinedly refused to do thus far.  My return to work was the following week so in order to push the issue I had decided to leave Posy with Debbie, her brave nanny while I took Ned off into the Norfolk countryside to take him on a rail trip.  The roads and pavement were very icy so in hindsight we were very fortunate, given what subsequently happened.

The weekend brought visitors from London, our good friends Sue and Din with their daughters.  It was a beautiful day, despite the cold so we had planned to go for a walk.  I drove to Bungay for the start of the walk.  We set off, walking and catching up with each other’s news.  David and Sue were slightly ahead, I think with the older children.  Din and I were close behind.  I was carrying Posy in a BabyBjorn carrier, something I loved to do, for the convenience and the closeness they give.  Then I felt momentarily strange, a feeling unlike anything I’d ever experienced.  I had no idea what was going on but I asked Din if he could take Posy for me which he did.

My memory of what happened next is not what actually happened which I find particularly odd as to me it is as vivid as though it happened yesterday. What I remember is a sudden, strong, shooting pain through my left leg and I screamed.  Then nothing until sometime later.  I remember being in hospital though not getting there.  I wasn’t there too long and was discharged that afternoon.  Everyone, it transpires can have a fit for unexplained reasons but I was checked over and was healthy and well.  Good to go.  That evening we all ate the meal I prepared, drank and generally had a lovely evening.  Sue remarked on how astonishing it was that we wouldn’t have expected drinking and being merry at 11 that morning.  Indeed we would not but, as it turned out, that was just the beginning.

The following day they left and we passed a normal quiet Sunday with the children.  I put them to bed about seven in the evening and came down to start preparing supper.  Then I felt it, that same strange feeling I had felt the day before.  But this time I had an idea of what was coming so I shouted up to David that it was happening again and lay myself down on the rug as that seemed a sensible thing to do.  Again, I’ve no memory of the seizure I then had.  The bonus of being the person having a Grand Mal is that you are blissfully unaware of it. For people observing I assume it is probably very distressing and I’m glad I’ve never had to see it happen to someone I love.

I don’t know how long I was out and my next memories are from being back in hospital.  Everything is rather hazy from this time.  I seem to think they said they needed to keep me in for a while and run some tests.  I was distressed and resisted as I needed to be home to look after Ned and Posy.  But they were insistent that some checks were needed.   I don’t recall what I thought was happening to me, everything had happened so suddenly and with no warning.  I suppose I was assuming I had developed epilepsy, something that would be manageable (though it isn’t always and is an unpleasant, terrifying and potentially life threatening condition – not one I would wish for anybody – but I knew little of things neurological then.)   Please don’t worry”, a kindly, well-meaning young doctor said to me.  “99.9% of these cases aren’t brain tumours”.