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. 

Chemo Go Chemo Go Chemo Go… July 2018

The chemo regime begins for me, with the insertion of a Portacath.  A cunning device that will sit below my skin so that intravenous chemo can be piped directly in rather than through a canular which tend to be a problem with me and my tiny deep veins.  The appointment is for 7.30 am which horrifies me as I’m not an early riser but needs must.  David and I arrive about 10 minutes late and I wait, nodding off gently for about 40 mins.  Then they come to do the pre-procedure questionnaire.  They check my name, date of birth then ask me to wait a minute.  They return, apologising profusely.  It seems we were not 10 mins late, rather 24 hours early.  They are too busy to squeeze me in so we agree to return the next day.  I feel, foolishly  I’ve gained a reprieve. To add to this boon, that night England win a penalty shoot out to proceed to the quarter finals – could this be a good sign?

The following day there is no dodging it and we return to the hospital where, despite the early hour the mood is chirpy with chatter of the England win.  I find myself becoming very tearful.  This worsens as I am taken in to the bay,  I have no idea why.  It’s not a difficult, dangerous or painful procedure.  it will last only 30 mins, under local anaesthetic and they are explaining everything to me as it happens.  I try to keep breathing, nice and calmly, deep breaths.  I’ve done this so many times in scans, when the panic starts to rise.  But the tears still come.  This is not about this procedure, this is what it represents and I am overwhelmed by it, overwhelmed by my fear.  Afterwards I wait and they make me a strong sweet tea.  I am shaking uncontrollably but it subsides gradually as the tea kicks in.  I am very relieved to call David to say he can come and get me, I want to go home.  I can’t delay any longer, I’ve avoided it for 15 years but on Friday I will start chemo.

On Friday we head to the Colney Centre, where we’ve been quite often for appointments with Dr. P.  This time though, we won’t be going through the doors to the consulting rooms, today we will go left into the Weybourne Centre, were chemo is administered. When we’re told to take a seat, we grab the two closest to the doors of admittance, like over eager students on the first day of term.  I am weeping, I hope discreetly.  The chap next to David strikes up a conversation.  He is here for his 19th cycle he explains cheerily, he’s now on it for life, as it were.  I feel faintly ridiculous but still can’t get a grip on the waterworks.  Then all of a sudden, I am called, my time has come.  We go through, they are more than happy to let David in with me.

It’s bright and airy inside and we are shown to two really comfy chairs.  They check my Portacath and establish it has settled enough to be used. There’s a bit of pain when they try it the first time, unsuccessfully.  Less so on the second.  And then it’s in.  The source of so much terror for me, drips in, over the next half hour and it’s too late now.  I’m doing this, the treatment of last resort is underway.  While it drips slowly through I observe the man opposite.  He’s not very old, emaciated but he looks happy, chatting with friends and family.  And he’s eating!  Working his way through a sandwich and crisps and I realise I’m ravenous.  As if by magic a Macmillan volunteer pop up offering a sandwich and yes I do want it, I want it very much!  The next step is 5 tiny tablets then we can go home with the third element of the combination therapy to be taken in tablet form for the next 10 days.  I feel suddenly optimistic.  Perhaps I can do this after all.

 

 

 

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.