Better News – Oct 2018

Between round two and three I have a scan.  I’m very used to head MRI scans.  I imagine I’ve had at least twenty in my life and I’m pretty good at relaxing through them.  But the last couple proved more problematic.  When they do an MRI, they do an initial set of pictures, usually lasting about half an hour, then you come out, but keeping your head completely still they inject the contrast fluid in via a canular.  This is vital because it highlights any cancer cells and gives a much clearer picture on the resulting scans. 

The problem is that for my last two scans I had an adverse reaction as soon as the contrast went in.  The first time I felt nauseous, the next I full on barfed, though held it in long enough to go in the cardboard hat, I’m not a total animal!  I had discussed this problem with Dr. P. who agreed I was developing a sensitivity to the chemical but she had prescribed steroids to be taken, I assume to counteract the reaction.  The second problem is the difficulty of me and canular insertion.  My boring fine, deep veins have resisted the best efforts of many a medical punt.  I have been through countless occasions of having one staff after another having their couple of “sharp scratch” attempts before seeking someone ‘more experienced’ to have a bash.  This is exacerbated in your average scan situation by a) the fact you’re lying down and b) its usually freezing cold in the MRI room.  And while I usually try gamely to play along, after all, they’ve got to practise on someone, in these scan situations I find myself getting more distressed, despite my best efforts.  I think because the stakes seem so high.  This scan is going to give me an idea of whether or not the chemo is doing what we hope.  Although I have a Portacath to get around this problem, unfortunately the radiology team are not trained to use a port so canular is the only way.

 But this time I was forearmed.  I had discussed the problem with Hannah, who, God love her, had arranged for me to come into the Colney Centre and they would pop a canular in for me. No offence, scan kids but the Oncology team can just do this stuff better! Well, it still took two people two failed attempts before the Granddaddy of canular input did it but they were really nice about it…  The trouble, I think, from my vaulted position of never having had to do it to another person myself, is that you really have to just go for it.  It is inevitable that the victim will wince but you have to be bold and keep on shoving that needle in.  Easy for me to say, I can’t even get a pill into the dog, and she’s a Labrador, they’re supposed to eat anything.  Canular inserted I have my scan and there is no reaction to the contrast so the steroids did their trick.  Only a few days to wait to find out the result.

We are meeting Dr. P. before I have round three.  There are no delays, it seems the reduction in dose and the injections to boost white cell production have had the desired effect and I can be zapped that day.  I realised before the meeting that I’ve never actually asked the question, “What are we hoping to achieve with the chemo?”  I think this has been sub-consciously deliberate.  Back in 2003 when I was battling so hard, chemo was very much the last-ditch saloon and then I’d swerved it, inevitably my expectations of what it can do are pretty low. But the conversation now has to be had. As we’d guessed, the aim of the chemo is to keep the tumour stable for as long as is possible.  But there is good news!  The scan shows the tumour has reduced.  It seems my tumour is as sensitive to the chemo as my stomach is.  This is definitely news to help me get through the next rounds. 

 This is just as well because it seems the cumulative effects are having a greater impact.  This round makes me even sicker, despite the earlier start on anti-sickness medication and the addition of a new powerful drug.  I am sicker than ever.  I can’t stop being sick and we are worried about the fact that I can’t possibly take my chemo pill.  David has to get an on-call doctor out.  This lovely lady travels out to me, a journey of over an hour, on a pouring wet, dark night. She gives me an injection, reassures David that I can take the chemo in the morning and heads back on her long journey. There had been a nearer doctor, in Norwich, but he couldn’t get out to me for a couple more hours and she hadn’t wanted me left that long.  Once again, I am humbled by the kindness of a stranger and her commitment to her vocation. I’m guessing she was Spanish or Portuguese, certainly from Continental Europe, like so many others who have cared for me during my spells in hospital.  Once again, I wonder what will happen after  Brexit and why this country has chosen to send out such an inhospitable message…

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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.

Hello constipation! – Oct 2018

Once the worst of the vomiting from this second round subsides I no sooner start to relax when I discover another delight of chemotherapy, one that had been alluded to in the various ‘side effects’ literature but I had not previously had the pleasure to encounter.  Hello constipation!  And who knew how uncomfortable a condition that could be?  I suppose I had got away lightly in the first round as I had been having the marvellous smoothies.  Also, I had taken some Senna tablets, in fact I asked the specialist nurse if it was okay for me to do so and she had replied, “yes, in fact I’d recommend it”, though at no point had done so….  If I sound a bit grumbly at this point, I apologise.  I do understand the huge pressure the NHS is under, I understand the chronic underfunding they are battling against and I know how hard the individual staff are working.  I suppose my gripe is I would have found it very helpful to have a short chat with someone about some of these likely side effects and options to minimise their effects or at least be prepared when they occur?  For the 30 minutes or so the chemo is dripped in a nurse sits with you, perhaps this could be a good time to discuss some of these issues, talk about remedies, warning signs, how to help yourself prevent the worst onslaughts?

In fairness the hospital has a Big C centre that I could be visiting and I’m sure I’d get lots of answers and advice there but I’m only ever at the hospital for my chemo treatment and somehow I’ve not felt up to wandering over there to ask questions that I don’t know I need to ask.  Anyway, in the event, once I am at the stage where the cramp in my stomach has left me so snappy that the family can bear me no longer, David calls our GP, the ever-wonderful Dr Duthie, who immediately prescribes some sachets for David to collect for me and books me in to come in for a visit.

The sachets themselves are for regular aid for mild constipation or in high dosage for the charmingly described “faecal impaction”.  And guess which camp I’m in!  I start the treatment – nothing.  I take the second dose that night – still nothing shifting.  And on the third try….  Hallelujah!  Houston, we have lift off!  The relief, the sweet relief tempered slightly by a minor new problem.  Whereas previously I was desperate to fart in order to release some air, now I am petrified of farting, lest more than air escape me…  But after a settling period I feel so, so much better. 

At the GP appointment we talk through my experiences thus far with Dr Duthie.  He suggests some measures to help alleviate the worst of the side effects.  For the next round, he advises I start to take the anti-sickness pill Ondansetron, a day in advance of the infusion of chemo to help prevent the vomiting from starting.  In addition he will let the District Nurse know that I may need an anti-sickness injection over the weekend, hopefully to avoid any need for me to be driven to Norwich, vomiting into a bowl.  As Ondansetron is itself a notorious constipator, I should have a sachet of the bowel livener a day while I take it.  I feel immensely cheered by this meeting with its actual plan of action.  That feeling of taking back some control, however illusory, for me is the best medicine. 

Back on Track – Sep 2018

On the third Friday I return again. I’m keen and eager to receive it which seems sort of crazy as it’s likely to make me feel pretty grotty.  Perhaps that’s the master plan behind the delays.  Get your patients desperate for the goods…

David has gone away for a long weekend with the kids.  We felt the kids would benefit from a short break abroad during their school holiday, even if I couldn’t go.  While they’d be gone my original plan had been to travel to a friend’s 50th party with my friend, Katie. The chemo delays have made that impossible.  I’m slowly starting to learn that making anything but the most last-minute plans is pretty futile when you’re in this sort of regime.  Instead, my friend Katie is travelling to Norfolk to look after me for the weekend.  She’ll arrive this evening.  Meanwhile my friend Debbie is bringing me in today for treatment and has agreed to take notes as I struggle to remember these medical conversations the moment they are over.

Hannah, my new specialist nurse is here so I have a face to put to the voice, which seems very reassuring.  I’ve sort of lost any real expectation of actually getting the treatment but we go through the motions.  They take my blood from the Portacath and go off to check the results.  When they reappear they have good news.  My white count has leapt up to a positively bouncy 3! I’m good to go but before they start Dr P wants to have a quick chat. 

Dr P arrives with her usual warmth and energy.  She’s sorry about the delays I’ve had.  When she discussed the treatment with me initially and explained the treatment has horrible side effects, this was the side effect they meant.  PCV has a very severe impact on the white blood count.  There is nothing I can do about this, it is what the treatment does and why they rarely expect the treatment to last more than four cycles.  In fact, of around 150 patients Dr P has treated with this chemo, only one has ever made it through all six cycles and he was a young man of twenty. 

This sort of throws up more questions than answers – why do they even bother to talk about six cycles if they know they won’t be tolerated?  Hey ho, at least it’s not me being a useless weakling.  And though the competitive part of me wants to say, “Bring it on!  Sod the white count, if the 20-year-old can take it, so can I!” I’m not unhappy at the prospect of only having to do this four times. 

Dr P is also reducing the dose by 20% and I get a new medical procedure to contend with.  Apparently the blood count drops to its lowest between days five and ten of the cycle so they instruct me in how to inject myself with a drug that with trigger my bone marrow to produce more white cells.  Now I truly feel hardcore and I leave hospital, clutching the sharps bin I have been given with pride.

Katie arrives and we have a lovely time catching up. I am sorely tempted to have some wine with Katie but I know its not a good idea so I resist.  Just as well, a couple of hours later I feel a familiar queasy feeling.  I head off to bed and take a bucket in case.  Within another hour I am being horribly sick.  By the morning I am unable to keep even water down.  If I lie down and don’t move I can keep it under a bit of control but there is a problem – someone is coming to view the house and it’s really too late to put them off.  Katie gallantly steps into the breach and takes care of it.  She does a brilliant job showing them around while they politely ignore the elephant in the room, me on the sofa, green faced with a bucket at my side. (Unsurprisingly they don’t put in an offer).

There is another viewing booked for the afternoon but I cancel it.  I’m still throwing up and I’m supposed to take my tablet chemo today.  I call the emergency Oncology number who tell me to call 111 and organise an anti-sickness injection. I do this and I’m told someone will call me back.  I’m quite surprised when quite rapidly they do.  But they ask if we can get to Norwich for the injection.  Katie heroically agrees and before long she is whisking me up there, me with a bowl to throw up in.  When we get there I am asked if I’m the chemo lady and would I like to wait I want in the ‘clean room’?  I’m a bit confused, I sort of assumed a surgery would all be pretty clean.  But it transpires this is a space separate from all the other patients, mostly young children, presumably some with infectious bugs and I am touched by their thoughtfulness.  I get the injection and am told that if the vomiting doesn’t stop I will have to go into hospital.  As I leave the receptionist thanks me for making it up the clinic which confuses me, I hadn’t realised there was a choice on offer. 

Thankfully, the injection works well enough for me to get the vomiting under control and be able to take my chemo. Katie has to leave early the next morning but has organised a rota of my local friends to babysit me until David and the kids return in the early hours of Monday morning.  For the next 24 hours I mostly sleep but am gratefully aware of the presence of my nursing team, topping up water and fluffing my duvet.  I think the worst of this round is over.

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.