It very much feels as though we are ‘in the system’ now.

We spent the majority of the day at Jimmy’s last Thursday; we passed through the appointments smoothly enough.  I can’t fault the collegues.  We’ve been shown politeness, professionalism, compassion, humour and just enough personality to hint at a softer side, whilst never becoming too attached and risking the repeated hearbreak of the inevitable.  After all, what to us is a once-in-a-lifetime crisis is, for an oncology department worker, a normal day in the office.

Radiotherapy is at basement minus 2 level of the PFI funded Bexley Wing of Jimmy’s.  (PFI in layman’s terms means that the profits made from its construction effectively constitute an unprosicutable financial crime.  But we’ll leave John Major’s visionary early adoption of NHS privatisation ideals for another time).  I assumed a dark and dingy waiting room, so I was pleasantly surprised to find a spacious, light and (reasonably) comfortable courtyard space; soft seating and a very welcome absence of the blaring daytime TV that accompanies so many appointments.

Slighly more offputting is the presence of so many other, painfully, tortuously, visibly ill people.  There must be thousands of cancer patients in the UK at any one time.  But if you saw them all in a room together, you’d think twice about taking the treatment.  Especially when it’s not even a cure for your cancer.  Shouldn’t we be out swimming with dolphins while we still can?

Our first stop is with Dr Michael Flatley.  I’m warming to the guy, he’s got a natural, open style and he takes great care to answer our questions fully.  I find myself wondering how long these professionals are allocated per patient compared with how long they actually need.  In any case, any pressure he feels to move us along is completely suppressed and I leave feeling we are in good hands.  We’ve learned that the success of the therapy will be determined by post-treatment scans, typically 3 months after the treatment finishes and 6 monthly thereafter.  We discuss the option of more frequent scans given the erratic behaviour of Fergus’s tumour to date, and are reassured to hear that a 3-monthly scanning cycle can be arranged, no problem.

We (we?  Fergus?  Treatment?) start(s) on March 3rd – a Tuesday.  I was expecting a Monday.  But it’s a Tuesday.  On day 1, we’ll be given the full schedule.  It’s looking like early morning appointments, but we’ll find out for sure on the 3rd.

Next stop is the radiotherapy mask.  Not as time consuming or complex as I imagined.  The mesh framework is submerged in a warm bath and, once pliable, carefully placed over Fergus’s face, held and moulded into place by several technicians, and finally cooled with ice packs.  Marks are drawn at key places to indicate the mid-points, and we’re done.

After a long wait, the final appointment for the day is the CT scan, during which Fergus gets to wear ’the mask’ for the first time.  It squashes his nose apparently.  Well, I’m not surprised, it’s definitely an outlier as far as nose sizes are concerned.  I hope it’s not going to become unbearable after 6 weeks.  I offer to take him back to get another mask made, but we’re done, heading home and for Fergus, to bed.  He sleeps a good 2 hours every afternoon, as well as all night.  And we are to expect further fatigue.

And so it is.  Just like we knew it would be, eventually.  I just thought we’d have more time.

 

 

 

TL;DR: Fergus is having radiotherapy.

As things turned out, there wasn’t a lot of decision making to do in the end. I made the phone call to start the ball rolling on Fergus’s radiotherapy treatment while we were still in the grounds of LGI after seeing Mr Corns on Wednesday. It was, as they say, a no brainer. Or, more precisely, a decision which can easily be made by someone with an egg shaped cavity in their brain.

Having all the information was important for both of us, so I’m very grateful that we were able to see Mr Corns again and that he took the time to answer all our questions honestly and carefully. He explained to us that the decision not to operate is not necessarily based fully in science, but is also hugely influenced by experience. There are a number of different factors involved; there’s not necessarily a right or wrong way to go, but, for me and Fergus, hearing how these factors have been considered and have culminated in the recommendation to proceed with radiotherapy has helped everything to fall into place and helped us to accept the next steps.

An FMRI scan (which shows where different functions of the brain are located) will only give a general guide to the surgeon as to where the limits of the tumour resection will lie; more accurate than that are the tests carried out during the awake craniotomy, where small parts of the brain are ‘tasered’ and functions are checked by a team of therapists (physio, speech etc); however, even this is no match for seeing how the patient is when they wake up.

In Fergus’s January 2019 operation, Mr Corns discussed with Fergus his appetite for risk, and agreed in advance that the approach he would take would be to remove as much tumour as possible, risking a slower recovery, skirting the boundaries of surgical possibility while aiming, obviously, for no permanent damage to function. I think it’s fair to say that Mr Corns got the balance absolutely right. What I learned on Wednesday, though, is that Fergus was much worse when he came around compared with the in-operation tests. Understandably, Mr Corns is really concerned about Fergus’s quality of life; decisions to remove a mere millimetre of tissue can be completely life-changing. Paralysis, loss of speech, severe memory issues or even complete vegetative state are all very real possibilities with any brain surgery.

To make matters more complex, Fergus’s tumour is diffuse; it does not have neatly defined edges that can be cut away from healthy tissue. It has tendrils that curl into the healthy brain tissue, weaving its way into areas of the brain that perform essential functions. We learned from Mr Corns that it was possible, at the end of the last operation, to see these tendrils descending into the brain tissue at the bottom of the cavity, and that the resection stopped when it became impossible to separate healthy tissue from tumour tissue with surgery. This is the area where the tumour is recurring, and there is no reason to believe that this separation of the tumour from the healthy tissue would be any easier now. An FMRI simply won’t give the detail needed to understand this.

Mr Corns also went on to explain that he’s now quite familiar with the inside of Fergus’s head. He’s now done what is effectively the same operation twice; both times he has not been able to get the desired result of a long period of tumour stability. From experience, he does not expect a third attempt to yield any better results. Furthermore, Fergus has been pretty lucky so far. He bounced back quickly from the fist surgery; had a much slower recovery the second time around but is living a fulfilling life; the third time he may not recover so well.

“Our job is to keep you alive, and to keep you well, for as long as possible,” he said to Fergus, not for the first time. Given the circumstances, what more can you ask for?

Mr Corns was interested in what the oncology specialists had recommended, and asked us who we’d seen at Jimmy’s. “Was it Flatley?” he asked, with a grin that brought to mind some med-school mischief. “Little bald fella?” That’s him – he was genuinely about as tall as Ferg’s legs. We discussed the recommended radiotherapy, and Fergus’s concerns about using this bullet, which can only be fired once, so soon. Mr Corns was in complete agreement with his colleague that this is the right time to fire it though; explaining that firing at a smaller target was likely to yield better results than waiting for it to grow. He also mentioned that sometimes people do go on to have a second round of radiotherapy if enough time passes (i.e. they live long enough or the tumour grows slowly enough) for the brain to recover. Plus, the option of further surgery in the future is still in the arsenal. It’s not the last bullet.

However, he disagreed flatly with Flatley on the question of a biopsy. Having sent 2 significantly sized and hand picked samples to the pathologists for analysis; and having received 2 sets of results that no one fully believes, there’s absolutely no point in sending a further tiny, random sample, not to mention the risk of taking said sample from an area of the brain where the tissue is so close to essential functions. No possible result can change his hypothetical diagnosis of a hybrid (mixed grade) tumour. If it tests as a grade 2 but behaves like a grade 3, it’s likely to be a hybrid. If it tests as a grade 3, we know it contains grade 2 as well, so it’s a hybrid. If it tests a grade 4, we don’t want to know. Conclusion, it’s a hybrid.

So, we’re booked in for next Thursday 13^th for Fergus to complete the consent forms, undergo the CT scan needed and to have the radiotherapy mask made; treatment is likely to start in early March.

I’ll keep you posted.

 

 

 

 

 

 

OK, so how much do you really want to know?

For those looking for a ‘happily ever after’ story, it may be better to stop reading now. This is not one of those stories.

For friends and relatives struggling to come to terms with what’s happening, I apologise if this is not what you want to read. But things are getting very real now. It’s not too late to stop reading.

Yesterday was another of those milestone days; the ones I’ll remember if I choose to relive this landslide into despair at some future date. It was the day when I found out the difference between the concept that Fergus may need radiotherapy at some point in the future; and the reality that the future is here already, and radiotherapy is now the recommended treatment.

In yet another comedy of errors, I managed to pick up food poisoning on Sunday after eating a roast chicken dinner (“I told Daddy that chicken was pink in the middle,” – thanks Jemima, next time can you tell me?). Luckily, I was the only one affected, but it was a most unpleasant 12 hours spent emptying my stomach by any means possible, followed by 12 hours of gurgling and rehydration sachets. So I was running on empty as we approached a new location – the Neuro-Oncology Outpatients wing of Jimmy’s, on the other side of Leeds.

There we met one of a team of oncology specialists called Michael (I have no memory of his surname) who spent some time getting to know both of us. We talked about the treatment that Fergus has undergone to date, and the results of the latest MRI scan. He then went on to explain that the multi-disciplinary team had discussed Fergus’s case, and the recommendation is that he proceeds with 6 weeks of high-dose radiotherapy treatment. The aim of the treatment is to slow down the growth of the tumour. There is a 70%-80% chance of the growth being slowed. How much it slows it down by is impossible to say, the treatment has very mixed results. There is no hope of shrinking or removing the tumorous tissue. But if you are reading this, you already knew that, right?

The treatment will mean going into Jimmy’s every day, Monday – Friday, for 6 weeks consecutively. The treatment itself takes just 10 minutes to administer, but getting across Leeds, parking, walking in, waiting, getting in/out of the giant doughnut shaped machine etc. will mean it no doubt takes half the day. Fergus can expect to experience hair loss; sore, sun-burn like patches on his skin; extreme fatigue; sickness; and loss of appetite. But we do get free parking.

The team also think that it is worth taking another biopsy to test the grade of the newly grown tumour tissue. Once again, this diffuse astrocytoma glioma (or tumour, as you may prefer to call it) is not behaving in a way that a grade 2 tumour should behave. There’s a reason why I can’t find any articles relating to fast-growing, low-grade tumours. They don’t exist. A defining feature of a low-grade tumour is that it is slow growing. Another feature is that it typically won’t show areas of enhancement on the scans. This tumour does both. Hence, a biopsy is an option. It won’t change the treatment plan, but it will give us a better idea of what to expect next.

But how much do you really want to know?

Before deciding on a course of action, we are going to see Mr Corns again tomorrow. Fergus has some questions about why surgery is not a viable option. In all honesty, I really do think that if surgery was at all possible, Mr Corns would have said so, but I also understand that Fergus needs to hear all the answers to his questions before he commits to a course of treatment. It’s his tumour, after all. The main reason for not operating is that the tumour is very close to where Fergus’s right foot and hand movement are located in the brain; the risk of leaving him with permanent disabilities is going to be very high. However, Fergus wants to ask for an FMRI scan (functional MRI scan) that will show if this particular brain function has moved further away. His brain has, in the past, shown itself to have a high level of plasticity, meaning it works quickly to move function away from the damaged part of the brain. Is there a chance that surgery is viable after all, because the function has moved away from the tumour site? Could the inevitable radiotherapy be delayed by a year? Or could further resection of the tumour followed by radiotherapy of the tumour site give him longer to live?

Speaking of prognosis, this is another topic we touched upon. In a macabre twist on Texas Holdem, there was a slight face-off between doctor and patient.

How long can I expect the radiotherapy to hold the tumour off for?

What have you already read?

Well, I’ve read lots of averages, but what’s the likely outcome?

Have you got any numbers in mind?

How much to do you really want to know?

Fergus went first in the end, giving a figure of 3-5 years from diagnosis, of which 1.5 have now passed. The doctor acknowledged that this was probably about right, but was quick to point out that some people live much longer. It’s funny how people rarely point out that therefore some people must live a much shorter time. I’m not trying to be pessimistic, it’s just how maths works.

So, a lot of information to take on, with more to come tomorrow. It’s no wonder my colleagues sent me home from work today. I’m not sure why I went in to be honest; I can’t work out if it’s better to try to keep going as normal or not. If I stop, I’ll have to think about all this and really take it in.

And that’s just too much information.

Today, we hit a hairpin bend in the road.  It wasn’t completely unexpected, but it aslo wasn’t somthing you can every really prepare for.  It’s been a very long day.

It began well enough.  I’d booked the day off as holiday and Fergus got up & saw the girls off to school while I had a 3 hour lie-in until 8:20 (I know, what a luxury).  Which was a very good thing as we both drank far too much wine last night & I’m not sure I would have been upto the job.  Then while Fergus slept his hangover off, I used all my nervous energy doing the stack of ironing that I’ve been avoiding for some time.  Eventually we were both awake long enough to have a leisurely lunch at a local restaurant; followed by the short trip into town to the nero-oncology outpatient department of LGI, an all too familiar journey.

I knew from his tone of voice, even as he called out Ferg’s name in the waiting area, that Mr Corns was preparing us for bad news.  Plus, he always has one of the specialist nurses with him when there’s follow-up appointments to make, and Leanne (substituting for our usual nurse, Gill) followed us into the room.  Oh dear.  Not a good sign.

Despite Fergus having no seizures since May and making steady progress with all his many theraipes (physiotherapy, occupational therapy, psychotherapy) the tumour is starting to grow.  It’s a small growth, it’s not going crazy like it did after the first operation, but there’s a change.  The volcano is active.

We have an appointment for 3rd February to see a neruo-oncologist who will advise on the best form of treatment.  It’s likely to be radiotherapy, but it could be that they advise chemotherapy or possibly even no treatment at all.  You can only ever have one round of radiotherapy for a brain tumour.  It’s your backup plan, the ace to be played when you’re backed into a corner with no other options, but once it’s gone it’s gone.  I hoped we’d have much, much longer before we had to play that card.

I spent the journey home rehearsing how I might break this to the girls.  However, as Ferg headed straigtht back to bed (he is still sleeping 2-3 hours a day every afternoon) and the girls were frantic with after-school activites and chores, I decided to wait until their French tutor had finished their lesson.  Just as she was packing up and leaving, Fergus came downstairs, cannoning off the walls along the way, in a postictal state.  For those of you not living with someone who has seizures, that means he was wobbly, confused and unable to talk properly.  He’d clearly had a seizure.

It’s been a long time since the girls have witnessed a seizure, and I’m not sure they have ever seen him postictal; Jemima and Evie seemed very afriad and were tearful.  Scarlett went into ‘mum’ mode – super helpful and grown up.  We all have our ways of coping.  After the morbid comedy of trying to get Fergus to believe me that there isn’t a toilet in the kitchen and he really should trust me that I know the way to the downstairs loo, and yes he really does need some help standing up, I managed to get him to lie on the sofa out of harm’s way, where he slowly returned to a more and more lucid state.  Thankfully, he didn’t have multiple seizures that require A&E admission and a strong dose of sedatives to stop:  the anti-seizure medication that he’s on seems to have put an end to those fun days out.

So, it wasn’t until about 8:30pm that I managed to talk the girls through the latest news.  It broke my heart to see them going through this pain.  No one should have to hear their little girls sob, “I don’t want a future without Daddy in it,” or  “I can’t think about the future.”  I don’t want to share too much on a public forum without their permission; suffice to say they are hugely shaken and upset and yet incredibly strong.

So, a change of direction.  There’s no map of this road, no sat nav to help you predict what might happen.  You have to just take it one day at a time, and accept the challenges it throws up.  We’re lucky to be in the care of specialists, lucky we still have an NHS, lucky to be in Leeds with such a great centre of excellence for nero-oncology.  It may be a turn we didn’t want to take, but Fergus is in good hands; it’s not the end of the road either.

 

 

Tomorrow it will be 1 year since Fergus’s second craniotomy operation.  It’s also scan day.  Following the initial de-bulking operation in September 2018, the tumour showed immediate and rapid re-growth.  This time last year I was expecting to be told that my husband had just months to live.  We’ve been lucky; despite some loss of sensation and proprioception in his right foot and leg, the operation has been a resounding success.  The tumour has been reduced to an absolute minimum (it’s impossible to remove fully due to its diffuse nature) and has been stable at every scan since.

Anyone who has had the experience of ‘living under the volcano’ will know that all brain tumours are different.  We pour over the statistics, searching for the answer to the unspeakable question, “How long have we got?”  How long until our lives crumble around us once again?  How long until the end of our happy family life as we know it?  The average lifespan of a person diagnosed with a grade 2 astrocytoma glioma is 5 years from diagnosis.  Does that me we now have 3 years and 9 months to go?  Of course, the statistics cannot answer any of these questions.  The answer does not lie in the mean, median or mode; the outliers or the averages.  It is simply unknown.

Until the last couple of days I’ve been feeling optimistic and positive, sure that the scan will be stable again.  But now I’m not so sure.  I know that the days, hours and minutes from the scan being taken (Friday evening) to the results (Wednesday afternoon) will be some of the most challenging for both me and Fergus.  I know that we won’t sleep well.  I know we won’t concentrate well.  I know we’ll probably drink too much wine.  I just hope we can find a space to enjoy our time together; I know from experience that living with the ambiguity is far better than hearing that the tumour is growing.  Is that what I’m expecting?  I don’t know, but after all, it’s been a year, it wouldn’t surprise me.

The results are in: the tumour is stable.

This is as good as it gets: 3 more months of love and laughter to enjoy. Long may the happy chaos of family life with the Hadleys continue.

A word of caution, the radiographer’s report is not in yet, but Aslan (Mr Corns) showed us all the scan pictures and there is no visible change; it’s highly unlikely but a radiographer may spot something he’s missed, in which case we’ll get a call next week. I’m not expecting one.

Other things that came up today: it’s more likely that the levetiracetam is causing Ferg’s tiredness than the post surgery recovery. However, reducing the dose is highly likely to trigger seizures. Ferg has already asked his neurologist about this and reducing the dose isn’t recommended.

So Ferg will have to continue his Mediterranean style siesta lifestyle for now.

I also asked Mr Corns about the fact that I cannot find any information anywhere about low grade, fast growing brain tumours. Basically, that’s because they probably don’t exist. The most likely explanation for the rapid recurrence of the tumour last year is that there were higher grade sections in the tumour that weren’t picked up in the sampling process. I kind of knew that already but it was useful to understand his opinion. I trust him. He’s cut out chunks of my husband’s brain and returned him to me safely. Twice. So it was also a relief to hear that we’re staying in high grade clinic under Mr Corns for now. Good old Aslan.

Next scan early January.

Here’s to a Merry Christmas.

“I wasn’t afraid,” said Pooh, said he,
“I’m never afraid with you.”

From Us Two, by AA Milne

(which we had as a reading at our wedding)

I’m not afraid.

Fergus has been doing well.

He’s only had 1 seizure.

He’s been progressing against his pysiotherapy and occupational therapy goals.

He’s only had a few headaches.  Everyone has a few headaches, right?

He’s only fallen off one bar-stool.  And mixed up a few words.  This is without drinking, just to be clear.

There’s no reason to assume the worst.

So why am I only getting 5 hours of sleep a night, according to my fitbit app?

Why do I find myself drifting away from converations and staring at the rain on the window pane?

Why I am waking with an aching jaw from knashing my teeth in the night?

I find myself wringing my hands, rubbing my face, unable to settle on one task.

Fergus tells me I’ve been shouting in my sleep.  I dream that he’s been captured by a psychopathic serial killer.  I wake and remember that he has.

You see Fergus, it’s true that I’m never afraid with you.  But if I think of being without you?

I’m utterly terrified.

(Results tomorrow).

 

The passage of time is a strange phenomon.  There are many debates about the true nature of time, both physical and metaphysical; we are invited to explore the possibility that time is non-linear, with past and future being merely illusions.

Whilst I can’t add much to these debates (I can barely undestand them), I can observe that we humans have developed a robust propensity to record the passing of time through a series of anniversaries.  For young children, this creates an illusion of an inordinately long time to wait for special occasions – after all, next Christmas can be half a lifetime away for a 2 year old.  However, by the most of us have reached 40, this has morphed into an ever-accelerating spin of occassions, whirring constantly and bringing with it a sense of increasing disbelief that so many years have passed.

We have a pretty intesnse period of these occasions every summer.  First it’s my birthday in July, then the girls’ birthdays in August, Fergus’s in September and finally our wedding anniversary, a litte later in September.  And this year we have a new anniversary – Ferg’s Tumour-versary on the 5th September.

On the whole, it’s been an amazing summer.  The stable scan result left us feeling elated, and we floated through July and August, celebrating in style, and spending a wonderful and relaxing 2 weeks in Cornwall, staying on Ferg’s family’s smallholding.  We’ve really made the most of it, laughing and playing together and generally enjoying life.

But something changed, just very subtlely, when we got home.  There was a letter, just like there was post-holiday last year, from the hospital.  Only this year I already knew what it would say before Ferg opened it.  It was his next MRI scan, sceduled for 26th September.  And a couple of days later, we had the 1 year since diagnosis day.

This culminated last night in a rather sad end to Ferg’s 45th birthday.  Despite having a lovely day together and a fun meal out with our girls, it’s just proved too difficult to ignore the anniversary-based reminders of what’s really going on in our lives.  People with Ferg’s diagnois genearlly live about 5 years from the date they are diagnosed.  Does that now mean that we are counting down?  Do we only have 4 years left together?  Shoud we be doing something to prepare our children for this eventuality?  Or is it better to remain optimisic and hopeful, pushing the statistics aside?  Maybe we’ll grow old together and laugh at all the fuss we made back when we first found out about the tumour.

I don’t know the answers to any of these questions.  All I can do is to be there for Fergus when he wants to talk, be strong for my daughters and look after my own health, so that I can continue to care for the people I love the most.

Happy Birthday Fergus, and many, many, many happy returns.

 

I can remember it like it was yesterday.  Fergus, dressed in a brand new suit, rehearsing, checking the bus route, researching the company.  He’d put so much into it.  After graduating with a degree in History, he’d spent a year converting his considerable intellect into something more…employable.

I’d been working as a buying assistant at Asda, supporting us both, living in a shared room in a shared house (incidentally, for those who don’t know the story, this is how we met Auntie Kate – it was her house).  Fergus was re-training as a web developer riding on the crest of an emerging wave, surfing his way to new found wealth, when the internet bubble burst, leaving us in a gnarly predicament.  Finally, after so many failed attempts, Fergus had a job interview.

Fergus had posted 120 speculative letters before getting to this point.  When I say ‘posted’, I mean put a stamp on an envelope and put in a post box, not some kind of social media reference.  He got 2 replies; and 1 interview.  To my delight (and relief) he got the job.

It was a real turning point for us.  Until then, we’d been students, part-time bar workers, and general layabouts.  We’d spent our Summers experimenting with life, hitching up to John O’Groats (and sending postcards to people, pretending we’d got married), then all the way down to Glastonbury, setting up camp before the festival began, and leaving long after it finished.  Suddenly, my admin job was turning into something that would later resemble a career, and Fergus had his first ‘proper’ job.  We were growing up.  Gulp.

After the inital shock of being accountable for getting up, dressed and out of the house at a reasonable time, Fergus took well to the world of work.  As it turned out, he liked the job.  The freedom, the stretching nature of computer progamming, and the balance between left and right brain suited him.  I was settling into the corporate world in a way that I never imagined I would, and suddenly, we had money in our pockets, and the weekends were free of shop or bar work.  Things were looking up.

I don’t think anyone expected that we’d both stay in those roles for so long.  After 17 years’ service, I made the difficult decision to leave Asda 3 years ago now, having learned literally everything I know about retail, business, buying and (importantly, possibly even famously) Excel, from my colleagues there.  I’ll always be grateful to those who took time out of their day jobs to share with me their knowledge and experience;  I’d be nothing without you guys.

Fergus never did quite get to that decision.  Today, it was made for him.

Fergus was dismissed today on health grounds.  It’s probably a fair dismissal; after almost a year, with no predictable timetable for even a phased return, how can a small family company do anything else?  I’m not angry, it’s a difficult situation for everyone.  But I am sad.

I’m sad because Fergus is sad.  And I’m sad on his behalf.  2001 to 2019 of working with the same people, being part of a fledging company that’s been through its ups and downs, and supported us through some rollercoaster years too, it just feels as though there is a big difference between being employed and not employed.  It’s not as though anything has really changed on a day to day basis.  Fergus hasn’t been to work since last September, and hasn’t been paid since last September.  So what’s the difference?

I’ve been searching for the answer all day, and then, just as he went up to bed, Fergus hit the nail on the head.  Identity in the modern world is deeply ingrained with how we spend our days.  It’s our frame of reference; our socially acceptable way of passing judgement over one another, of working out where we stand in the pecking order.  As a man, and in particular as a man with a family, he’ll be asked soon enough,

“What do you do?”

And, as a man who can no longer work, what exactly are you supposed to say to that?

 

 

There’s 3 little words I’ve been longing to hear.

Tumour.

Is.

Stable.

GET IN!!!!!!!!!!!!!!