The day after completing the Yorshire 3 Peaks, probably best not to wear a plastic skirt on the hottest day of the year, drink enough beer not to feel the blisters any more and dance all night with a mop.

Also, probably best not to get dropped off by the taxi at the Conservative Club instead of the Constitutional Club in Farsley and have to parade through a small town dressed in drag.

At least I had the sense to leave the heels at home.

Fun times.

 

I’m overwhelmed with gratitude, exhaustion, aches, pains and pride:  what a 24 hours!

To our support team Teri and Ru,  whose alarms clocks went off at 3am and who were first to arrive and last to leave; always there for us between mountains providing water, blister plasters, high energy snacks and moral support; not to mention checking everyone in and out and keeping us all safe.

To Charlotte and Peter, who arrived and set off an hour early (yes, even before the support team actually!), showing enormous determination and commitment to the challenge.

To Sarah whose toenail will take months to recover.

To Dan whose chaffing may never recover!

To Rachel, who had such a short night of sleep and still kept up with the super-fast men to finish as first woman.

To the super-fast men – hats off to both the impressive speed and the amount of fundraising you have done.

The the young whippersnappers, who had such a promising start and were scuppered by one wrong turn, having to be rescued from Ingleton after coming down Ingleborough the wrong way!

To Dave, who finished the challenge despite his boots breaking, going back to the start for new footwear, and starting again!

To Nicola, who was hampered by Horatio the Husky (he wasn’t keen on scrambling).

To Karen, Cassie, Laura and Rania who persevered through some map reading challenges to get back safely in the end.

To Harriet, without whose enouragement and pace-setting I firmly believe I would still be hobbling over the last 4 miles even now (#smashedthetwelvehours).

To those who couldn’t take part, but have provided moral support, generous dontations and fundraising efforts.

To Karen, whose tireless efforts in organising this event, fundraising and roping in every family member to help, made the event possible in the first place.

To everyone for their donations, for being so incredibly generous in sponsoring us and smashing our £1,500 target, rasing an amazing £3,106 and counting – it is still going up every hour.  Click here to keep sponsoring us!

From the bottom of my heart, to all of you, I would like to say an enormous and sincere thank you.

In just 3 days’ time, I’ll be setting off at 5am to join group of 24 colleagues in the little North Yorkshire village of Horton in Ribblesdale to attempt the Yorkshire 3 Peaks Challenge.  It’s over 23 miles of walking, with 5,200 feet of ascent (and therefore descent, one imagines) with a target completion time of 12 hours.

I’ve done the challenge before:  however, I was younger, fitter and at least 2 stone lighter – and it was still really hard work!  So it’s going to make for a gruelling day out.  What’s more, the forecast is hot and sunny – which sounds ideal, but will mean carrying a lot of water and layers uphill in order to stay safe.

It’s such a big commitment:  all of us have spent time preparing for the day and are effectively giving up our own time and money to make this event happen.  When I consider that my colleagues are prepared to go to such lengths to raise money for our chosen charity, it can move me to tears.  (But then again, I cry at X Factor most weeks so it doesn’t take much).

With that in mind, this post is a blatent sponsorhip request.  Anything you can give will go towards research that has the best chance of finding a cure for Ferg’s brain tumour:  if not in time for him, then for someone else in the future.  Please give generously.

Click here to sponsor us now.

I’ve been reading a book about grief.  That may sound terribly morbid, but really it’s a completely rational thing to do.  I’m grieving now, and have been since 5th September 2018 – D-Day (diagnosis day).  I’m grieving for the future we planned together.  I’m grieving for all our hopes and dreams.  Anticipatory grief seeps into every plan we try to make.

I read that grief can rob you of your future, but it can never take away your past.  Your memories of being together, the words you say to each  other, the things you laugh and cry about together:  they shape who you are, and what you become.  Your relationship becomes about the impact that those memories have  on you, and on your future.

With that in mind, I’m so glad now that I decided to seize the moment and book a spur of the moment trip to Budapest.  Things will never be quite the same.  The need for Fergus to rest, the short distances he can walk and the long daytime sleeps he needs make for a much slower paced holiday than we’re used to.  But just to be together, no work, no stress, just the two of us, remembering old times and exploring a beautiful city together.  It was magical.

Thank you “Auntie” Kate for making it possible, and taking over full time mum & dad duties for a week.  You are a diamond.

 

I almost relaxed there for a minute.

It was a perfectly normal morning.  I got my usual train, ate my usual breakfast, and read my usual emails.  I arrived the usual 10 minutes later than the timetable suggests and went straight into the usual round of back to back meetings.

My work phone rang during a meeting, as usual.  I red buttoned the calls, as usual.  It rang again, as usual.  And again.  And again.  Unusual.  I realise the number is Fergus.  Very unusual.  I curse the new phone, wondering why his name isn’t being displayed when he calls, and call him back.

I can tell even before he speaks that he’s post-dictal.  The pause is too long.  “Are you OK?” I ask, “Have you had a seizure?”

“I don’t know.  I’m in an ambulance,” he finally says.

Relief that he’s not alone is quickly swallowed up by fear of what might have happened.

The phone is passed over to the ambulance crew.  A calm, professional voice reassures me that Fergus is in safe hands.  He’s gathered that Ferg has a brain tumour and he listens carefully as I relay the key information.  Astrocytoma glioma in the left parietal lobe.  Lorazipam 1500mg b.d.  History of multiple focal seizures which can only be brought under control by lorazipam.  Do not give clobazom.  De-bulking surgery September 2018 and January 2019.  Does he have any other medical conditions?  Well, there’s the asthma.  It always sounds silly when you add that on at the end.

Fergus was found by our neighbours lying outside the front door.  He was very confused, by all accounts, and insisted he didn’t need an ambulance.  They called one anyway.  He has a nasty bump on his head and of course it was perfectly possible that his confusion was as a result of the fall.  The paramedic informed me that the incident was unwitnessed, so they cannot assume it was a seizure.  I can tell from the short exchange that I’ve had with Fergus that he’s had a seizure, but I take his point.

So, I power walk back to the station, taking an unusual route back to Leeds on the fast train.  An offer of help from another neighbour pops up on my text messages, and I call her to make after school arrangements for the girls.  She’s incredibly kind and has been taking our girls to school 2 days a week since Jemima broke her kneecap, so the girls will be in very safe hands.  A third neighbour offers to bring food round for the girls after school.  I politely decline, but, remembering that she has a key, ask instead if she can pop round and check if the house is locked up or if anything is left on – who knows what Ferg was doing before this happened?  I feel like I’m in a soap opera.  Neighbours, of course.  Everybody needs good neighbours.  I am incredibly lucky – thanks guys if you are reading.

Just over an hour after the call with the paramedic, I’m at Ferg’s bedside in A&E.  He looks like a lost child, wrapped in a blanket with a cut just over his right eyebrow, swollen and sore.  I’m filled with love and compassion; I just want to make it all go away for him.  We hug and hug, there’s no need to speak.  We just understand each other.

So what happened?

We try to piece together his morning.  He remembers getting the girls off to school.  He went back to bed.  When he woke up, he put a veggie burger in the oven.  When timer went off, he couldn’t remember what to do with it.  He knew something was wrong, and decided to sit down and write a list.  We found the list later.  It says,”To To T”.  Noticing that this isn’t working, he remembers wracking his brain to try to remember what to do.  He remembers knowing that this means he’s having a seizure, but he can’t remember what he’s meant to do.  He can’t remember how to use a phone.  We later find that he has the ‘buzzer’ (a personal alarm linked to a call centre that he can use to call for aid) in his pocket – he has no memory of picking this up, but clearly he’s almost remembered to use it but not quite managed it.  The last thing Ferg can remember is grabbing his bag and going outside in the hope that he will see someone who can help him.  It’s a good plan.  Some one does find him and help him.  I wonder how long he’d been there for.

How terrifying it must be to have a completely blank period like that.  To experience being conscious but completely out of control; and to wake up so confused.  And to fear what this means.  What’s happening in your head to make you feel like this?

We both know it’s not a good sign.  But Fergus thinks he was a couple of hours late taking his anti-seizure meds this morning, so that’s probably what’s wrong.  Isn’t it?

In any case, we are dealt with promptly and with compassion in A&E.  Never have I had any cause to complain about the treatment Fergus has had from the NHS.  I won’t have a bad word said about the work our medical teams in the UK do.  It’s inspirational.  Mr Corns is consulted and he makes that call that Ferg’s scan can stay in the diary for 12 weeks as planned.

It’s only 3 weeks away now, after all.

It’s going to be fine.  It’s going to show the tumour is stable.

It just is.

So, once again life returns to routine.

A different routine, but one with many familiar features.  I’m back to full time work, catching the same trains to and from Manchester each day.  I make healthy lunches to take with me and eat unhealthy snacks every evening.  The children get lifts or taxis to school and back as Jemima’s patella bone continues to heal.  Fergus takes taxis to physiotherapy and occuptional therapy appointments 2-3 times a week for himself, and every fortnight he gets a taxi to take Jemima to her physiotherapy and back.  I finally got round to selling our second car.  It’s all a lot calmer than the last 6 months have been.

We are back in our home.  I’ve almost finished unpacking.  There’s still a few things that need to be done to finish off the decorating, but it’s at a stage now where ‘it’ll do’.  Left to my own devices, these last jobs will never be done.  I’ve run out of steam.  Instead, I just jot them down on a list that one of our wonderful neighbours, a joiner, has agreed to complete for me for an hourly rate.  As for the garden, I’m hoping Alan Titchmarsh will turn up and rescue the situation.  It looks like a scene from a World War 2 film.

Fergus is doing incredibly well.  He remain seizure free (15 weeks) and the imact of this on his mental health is marked.  Sometimes, he seems almost normal.  His mobility issues are ever present, and his forgetfullness is off the scale; we operate daily life through a series of alarms and reminders set on his phone, backed up by me calling and texting to check he’s not switched the alarm off without actually going to the appointment/taking the tablet etc.  However, he’s much more ‘himself’ now than I’ve seen him since his first operation, back on 17th September last year.  I remember going for a run on the 16th with him – we ran to New Pudsey train station to retreive my car, where it had been abandoned for over a week (since I got a lift home from Manchester on the day he was diagnosed).  It was a tough, uphill run, and Fergus just pushed and pushed himself up the hill, knowing it would be his last chance to exercise for a long time.  That’s the last time I can remember seeing him as optomistic as he is today.

In fact, in a burst of wild optomism, I have booked us a short city break to Budapest before his next scan is due.  We are going Monday to Friday, staying in a very central hotel where we can get a ‘hop on hop off’ bus to all the major sights from just outside the door.  A car transfer is booked to and from the airport, like old people.  Our days of packing a backpack and picking a place to stay on arrival are very much over.  But I’ve realised something very important recently about that.

Our plans are gone.  I’ve spent time mourning for the future we planned together.  But it’s gone now.  Our future is uncertain at best.

But right here, today, now, we are together.  We have our children, our family home and each other to love and care for.  So I’m learning to put aside both the past and the future, and find moments of joy in just living today.

Everywhere I go people tell me it’s all going to be ok. I just have to get used to how things are now. Get used to a new kind of normal. ‘The new normal’ is the buzzword of the support network for brain tumours. I’m pretty sure it applies to others who find themselves in dire situations: dealing with bereavement; a terminal diagnosis; or any other type of extremely shit news.

The problem, however, is that I don’t want to get used to it. I don’t want or need a new normal. I was perfectly happy with the old normal. In fact, after a couple of years spent languishing in all kinds of self indulgent nonsense believing that my life was just somehow harder than other people’s, I was finally free from an episode of depression and felt almost euphoric relief in how high the sky really does reach if you let it.

Life, for the first time in years, was bloody amazing. I have a loving family who make me laugh every single day. I have a great job with a supportive and caring team who I can make laugh every day (at me, not with me). I have close friends who are there for me every single day. I am still every bit as head over heels in love with my husband as I was when I was 20. I am learning the piano & have found enormous happiness in playing (however badly). My children are doing so well at school that it’s almost embarrassing at parents’ evening.

The old normal was everything I ever needed.

I was happy.

The new normal, however, is a bag of shite.

In the new normal, I have to run myself ragged.

I am the only breadwinner – pipedreams of Fergus moving to full time work & me dropping down to part-time have had to be set aside in favour of supporting all 5 of us financially on my own.

It’s not just financially either; it’s the day-to-day tasks that are so relentless. Fergus & I had very clear roles before; in the new normal, many of Fergus’s roles have silently passed to me, quietly pulling on my patience levels and draining away any little luxuries of free time I try to grasp.

In the new normal I miss him. I miss him every day. I’m left alone for long periods of time while he sleeps, tending to the needs of our children, cooking, driving children to hobbies, running errands. All things that used to fall seamlessly into place in the old normal.

In the new normal, I then have to find more strength to emotionally support 3 teenagers who project their anxieties over their father’s mortality into every little thing, creating war from peace and ensuring there is never a quiet moment.

And this is the good part. What comes next is continuing to do all of the above while simultaneously being left helpless at the sidelines; both capably running a household & full time job; with the juxtaposition of helplessly watching my best friend & husband deteriorate into oblivion as a cruel & relentless illness takes its hold.

But yeah, I’m sure it’ll be fine once I’ve got used to the new normal.

So, what next?

A 12 week reprive, subject to no seizures.  A stable state, for now.

A new house, just like our old one, but different.

A new normal, just like our old one, but different.

I’m trying to settle in.  I think I’m getting there.  I’ve worked out which light switches are which and mastered most of the kitchen appliances.  There are still quite a few boxes strewn around and I’m not sure where some things should live now.  But it feels like our house again.  Just a bit different.

I’m trying to get used to the news.  Obviously, I am pleased.  Of course I am pleased.  To be supporting Fergus to face radiotherapy & chemotherapy now would be our family’s biggest challenge yet.  But the reality of never getting an all-clear, the looming reality of where we are going, is always there.  It’s not gone away.  It’s just not here yet.

How far ahead do you dare to plan?  Can you really live your life in 12 week chunks?  Never having the confidence to book a holiday incase Fergus is having further treatment?  Yet that is where I find myself.  There is something in the manner of Mr Corns that makes me understand that he is not satisfied that ths tumour is going to be stable for long.  Or is that just in my imagination?

Either way, it’s unsettling when you are trying to settle in.