Or, more accurately in Fergus’s case, he tried to make them send him to rehab, but they said no, no, no – there’s a 3 week waiting list.  Haven’t you heard of austerity measures?

It was clear from just a day or 2 after the operation that the best route for Ferg’s recovery would be a specialist neuro-rehabilitation centre.  Handily, there is one in Chapel Allerton (a much more convenient location for me to visit than LGI), where ideally Fergus would have been transferred a couple of weeks ago.  In this centre, he would continue to be an in-patient, but would receive specialist high level physiotherapy 7 days a week (instead of 4-5 in LGI) with more specialist equipment.  The referral was made, but we were warned that there may be a wait.

When we first heard that the wait time was 3 weeks, we thought that Fergus would clearly by home by then & put this to one side.  The team at LGI have been amazing & Fergus has made progress every day under their care.  However, as we go into week 3 of life on ward L25, the prospect of getting to the front of the queue suddently seems to be a possibility.  The team at Chapel Allerton called the LGI team today to check if Fergus still wants to remain on the list.  They may have a bed this week.  But then again, they may not.

We also had a visit from one of the specialist nurse team members.  Not our usual contact, but we have met her before during one of Ferg’s many A&E seizure related adventures.  Looking back on the converation now, I’m pretty sure she was dispatched to try to add weight to the persuasions of the physio team that Fergus really should stay in hospital and not push too hard to go home.  She definitley did not want Fergus going home without going via Chapel Allerton, as the high level physio is what he needs to get the best possible outcome.

So, our horizons are shifting again slightly.  It seems that high level physio is now emerging as a necessity, not a nice to have.  I’m not quite sure why it’s taken me so long to work this out, but this evening I realised that if we can’t get into Chapel Allerton in a reasonable timeframe, we do have my work-related healthcare scheme that I am pretty sure would cover 75% of the cost of this.  It genuinely saddens me to use private services as I am a massive advocate of the NHS, but drastic times call for drastic measures.  So, tomorrow’s life wife admin challenge is now to dust of the healthcare scheme terms & conditions, get a referral to a private clinic and see what can be done.  I’m on it!

Where Ferg’s head has been zipped back up

Recovery from brain surgery, I am told, is not linear.  It undulates, teasing you with good days where great leaps forwards are made; only to punch you in the belly the following day with debilitating fatigue and lack of progress.

Life has become a series of physitherapy challenges for Fergus, where his day to day satisfaction directly correlates to the progress made by his right hip, leg & foot as he wrestles to get them to do what he wants them to do.  The frustration of having to remain in hospital to access the physiotherapy team is tangible.  Room-mates come and go, discharge papers in hand, and a new set of post-operative men are wheeled in.  Ferg’s the lifer in the corner, calling the shots on the important decisions on the ward, such as windows open or closed, lights on full or dimmed and the acceptable volume of other people’s TV’s (it’s zero, that’s what headphones are for).

At least we have a wheelchair now.  It’s been good for all of us to be able to leave the grounds of the hospital for an hour or two; eating together in a local restaurant has been the absolute highlight of the weekend.  Strangely exhausting though.  Fergus is finding that the brighness, the music, the chatter of other people etc. is a sensory overload.  For the rest of us, it’s the journeying to and from the hospital, the pushing of the wheelchair and the sheer effort involved in doing simple things together that is tiring us out.

We are all so desperate to have him home.  Yet we have to balance this with making sure that he can access the right level of care; he has to have the best possible chance of regaining full mobility.  Although a timescale cannot be given, the physio team are refusing stoically to put a ceiling on what Fergus can achieve physically.  It would be far easier for them to send him home with a wheelchair and a walking frame & leave him with permanent disabilities, but the team lead by the wonderful Seonaid would not do that.  They want him to make a full recovery, however long it takes, and for that I applaud them.

Fergus is an enigma.  Everything I have read about brain tumours categorisies them into the classic WHO (World Heath Organisation) 4 bands:  1 & 2 are defined as slow growing, benign (for now) tumours – not cureable, but treatment has a good chance of seeing them off for a few years.  Grades 3 & 4 are much more serious; fast growing, immediately life threatening, invasive, cancerous tumours.  The stuff of nightmares.

So what does a fast growing, grade 2 tumour mean?  How should you feel if your trusted surgeon is shocked that the histology shows grade 2?  Is it the bad end of the grades 1-2?  Or the good end of the grades 3-4?  Is it a mis-diagnosis?  Is it a tumour transforming from grade 2 to 3?  Is it an unknown quantity?  What does this mean?

Fergus’s treatment plan is reflective of this list of questions.  The plan is to make a plan in 8 weeks’ time.  Mr Thompson (filling in for Mr Corns in clinic last Wednesday) explained to us that the MDT (multi-disciplinary team) will not make a treatment plan for a tumour that they cannot predict.  As Fergus’s tumour has behaved so unexpectedly, the plan is to assess the situation 8 weeks on from the last scan (this takes us to 20th March 2019) and then decide what to do.  Rapid regrowth will mean treatment (radiotherapy, cheomotherapy).  Miniaml regrowth will mean watch & wait.  There are a million shades of grey inbetween.

Uncertainty is the only thing I can be sure of.  I’m doing my best to get used to it.

“We have no routine at the moment,” declated Scarlett* the other day.  “We don’t know when we are going to eat.”

It’s a fair point.  The first week of Ferg’s stay in hosptial has been quite chaotic.  Looking back on it, I can barely remember some days & have no idea how I arrived here at today.

However, Scarlett’s comment made me realise that the children really do need some kind of structure.  With this in mind, we’ve agreed to try out a new plan for the week.

It goes a little somthing like this:

6:15am – Alarm clock, breakfast, school run etc

7:30am – Run or swim or do something active (or sometimes go back to bed for an hour)

9am – Chores:  Life Wife admin (currently mainly consisting of being on hold to the DWP trying to claim Employment Support Allowance for Fergus); laundry; shopping; making decisions about the house rennovation; updating the alarmingly large rennovation cost spreadsheet; sorting out Ferg’s fit notes; sorting out Ferg’s repeat prescriptions; food shopping; making healthy food to take into hospital; organising a meal for the evening; I could go on, the list is long

11:00am – Go to LGI, lunch with Fergus.  Often there are other visitors to meet too.  It was great to see James today who made the round trip from London in a day (thank you).

2.30pm – Set off home in time for the girls to get in at 3:15; make them a snack, ensure guinea pigs are fed.

4:15pm – Set off to hospital, picking up anything Fergus needs en route

5pm – 6.30pm – Family time – take Fergus in wheelchair to Costa coffee (inside the hospital), play a mini-board game, return him to the ward

7pm – arrive home, have tea

8pm – girls read, I play the piano (bliss)

9pm – lights off for the girls, bit of time for me, write the blog & then bed

Repeat.

And if that’s not exciting enough, we are planning another ‘breakout’ for Friday night.  It’s not excactly a night on the tiles, but we are going to collect Fergus after school finishes, borrow a wheelchair & take him out of the hospital for a family meal.

It’s not quite the family life we all know and love, but life’s what you make it & there is real pleasure to be had in this new routine.  There’s something very comforting about repetition; bringing normaliy to the abnormal place we find ourselves in.  And importantly, Scarlett is now clear on her no. 1 priority – knowing when she is going to eat (I wonder where she gets that from?)

* Scarlett is one of my daughters, aged 13

What’s the biggest challenge you faced when you were 13?  There’ll be exceptions of course, some teeneagers go through hell.  But for most of us, waking up with a huge zit on your nose or working out how to talk to that girl/boy without experiencing some excruciatingly embarrassing episode was about as tough as it got.  I most certainly wasn’t forced to confront my parents’ mortality.  In fact, I still haven’t confronted my parents’ mortality – who does until they have to?

Our 13 year old triplet daughters have shown remarkable resilience in the face of Fergus’s illness.  After the initial diagnosis, there was a huge dip from all of us in our ability to process information; to complete daily tasks; and to keep our tempers.  But by sticking together and finding ways to express our love for each other, we got through.  Bouyed by the amazing news that Ferg only had a grade 2 tumour, each of us latched onto the fact that the tumour might not transform for many years to come.  We went back to our ‘new normal’.  We adjusted horizons.  We came to terms with it.  Or at least, we had started to.

None of us expected the very first ‘watch & wait’ scan to show such a dramatic change in the tumour.  We were not prepared for the news that Fergus would be undergoing major surgery again so soon.  We were certainly not prepared to hear that the tumour is behaving as though it has transformed to a higher grade.  We were absolutly not preapred to start adjusting our newly-lowered horizons down any further.

So it’s not surpising that a chink in the resilience showed up tonight.  I’m not going to blog about what was said.  It’s one thing for me to share my innermost insecurities publically online, but quite another to share the turbulent torment of teenage triplets.  Without their permission.

Suffice to say, they are dealing with a lot.  I’m just glad that they let me in a little bit tonight.  It’s the first time I’ve felt the guard come down, and it was good to gimpse a little of what is really going on inside.  Although painful to see, I know that when I tucked them in tonight, they felt safer for having confided a little of what they feel in me, and to receive the reassurance that it’s OK to not be OK right now.  After all, who would be?

I’m not normally a very sociable person.  In fact, a typical week for me would see me interacting with my immediate family, my work colleagues and the person who delivers the grocery shop.  That’s it.  I work hard & commute most days; the time remaining in the evenings is barely enough to catch up with the chilldren, turn-around tomorrow’s packed lunch & get a good 40 mins of piano practise in.

In fact, it goes further than that.  In recent years I’ve actively not socialised.  I’m not really sure why.  An episode of depression that overshadowed my early 20’s made a sudden re-appearance a few years ago.  Although its magnitude is dwarfed by the debilitating experience I had in my younger years, it has still knawed away at my confidence.  I find that I have retreated into a comfortable solitude where just a handful of people have the persevernce to put up with me.  Coupled with the natural shift in focus that family life brings, it’s fair to say that I have a lot of freinds who I’ve not seen in a while.  A long while.

Perhaps this is why I have been moved so very much this week by the kindness and generosity that has been shown to me.

I’ve probably had more text/email/messanger/social media traffic this week than the last year in total.  I know that I have not had time to reply to everyone; but please do not let this put you off.  I have been touched by the depth of feeling in the messages of support that I have received, and I know that Fergus feels the same.  Even if I have not replied to you, please be assured that your messages are appreciated.  I am finding strength in your words, so thank you.

On a more practical level, I cannot begin to find the words to express my gratitude for the efforts that have been made.  Friends from near and far have thrown aside day-to-day responsibilities to take on tasks that I cannot manage.  The list is long, and I cannot hope to list everything here, but without this support there is absolutely no way I could have managed to look after 3 children, a husband having a craniotomy and the pinnacle of activity in a building project.  It’s been a little bit like living in a combination of Supernanny, 24 Hours in A&E and DIY SOS.  Luckly, I’ve got a Jo Frost, a team at LGI and a Nick Knowles – you know who you are!

It won’t stop here though.  I am going to need to learn to be a bit braver and find the courage to take more of you up on the offers of help that have been pouring in.  Over the coming weeks, months, and (hopefully) years, life may not always be simple.  Any period of relative stability is likely to be flanked by periods of intense cancer treatments; planning will be tricky & we will need to be adaptable.  There will be times when I need to drop everything & be with Fergus.  There will be times when I need the children to be ferried around as I cannot be there.  Perhaps we’ll be lucky enough to be able to take our long-overdue honeymoon to New York that we’ve put off for 10 years now.  Perhaps I’ll just need someone to drink wine & cry with.

So many of you have offerd to help me and Fergus with the challenges that are to come.  I’m overwhelmed by the influx of human traffic into my life this week, and for that I say thank you.

We ‘escaped’ Fergus for lunch today

Pizza Express Lunch (L-R Scarlett, Janet, Evie, Ferus, Jemima)