Ferg cannot walk.  In fact, Ferg cannot stand without support.  On the face of it, this seems like alarming news, but the physio team seem completely confident that this can all be re-learned.  However, it does take time.

It’s with this in mind that Seonaid (awesome physio) gently broke the news to me this morning that Fergus will not be coming home before the weekend.  This is obviously really disappointing, but his care needs are so high at the moment that I don’t think we could manage at home.  More importantly, the physio team who work with post-op cranitotomy patients day-in day-out are on Ward 25 LGI, available for daily taylored physio sessions, so this is without doubt the best place for him to stay.  For now.

On a more positive note, the MRI scan that Fergus had yesterday is showing a great result.  There is no visible tumour left; the best result possible.  Before we get carried away though, please bear in mind that diffuse anaplastic astrocytomas are impossible to fully remove; cells will remain behind, and will grow back.  And judging by the last 3 monthly scan result, they grow back fast.  In fact, one of the regirstras has explained to Fergus that they already know that there was a vein that they were unable to remove (due to risk of neurological damange) that is hosting some abnormal cells, and that they are planning radio therapy to tackle this.  The full treatment plan has not yet been agreed by the MDT (mulit-disciplinary team), but this is a clear indication that surgery is unlikely to be the end of the road.

It’s likely that preliminary histology results will be available in time for Mr Corns’ clinic next Wednesday.  Basically, that means we are likely to find out the grading of the tumour.  Grade 2 would be amazing news, but highly unlikley given the speed of the growth.  In fact, it would not be believeable.  Grade 3 is what I am expecting (because that is what Mr Corns is expecting.  Despite devouring books on the subject, I’m still guessing he knows a little bit more than me).  It would mean radiotherapy & possibly chemothrapy, attempting to give Fergus the longest possible ‘progression free period’ to try to give him a few more years.  He could still see his little girls grow up.  Grade 4 would be devastating and would mean radiotheraphy, chemotherapy and a much shorter ‘progression free period’.

For now though, let’s focus on getting him back on his feet (literally).

 

It’s probably fair to say that Mr Corns has taken on a mythical, almost divine quality in my mind.  I’m insanely grateful that anyone has devoted their life & career to reserching & developing the techniques that could extend my husband’s life.  Plus, having litereally taken the lid of Fergus’s head on 2 occassions now, and delivered him back intact, it’s hard not to be in awe of the guy.

He’s written some intersting articles (15 that are peer reviewed & published) including what looks to be a fascinating paper on the death of King Henry II of France, examining the evidence & applying modern practice to determine the probable cause of death (spoiler alert – it was a craniofacial trauma involving the right eye and he died from periorbital cellulitis caused by a retained foreign body in the wound, complicated by a left interhemispheric empyema preceded by a traumatic interhemispheric haematoma).  There’s also a paper examining the safety & effectiveness of the mutli-disciplianry team; the environment in which he works every day.

I’m reassured by this on 2 counts.  Firstly, he clearly loves his work and has the curiosity combined wiht the initiative to take on some obscure & challenging research.  Secondly, he is questioning the methodology under which he works, taking an evidnece based, objective, peer-reviewed and rational approach to understanding if the methods being used are effective.

By chance, Kate & the girls were able to meet Mr Corns breifly as he popped into check on Fergus on Monday night.  It was interesting to see how they all reacted.  “He’s so young!” mouthed Kate from accross the bed.  The girls became rigid with shyness, pulled up the hoods on their hoodies & giggled to each other, eventually concluding (after he’d left) that he ‘looks like a lion’.

To be fair to the guy, it was rather late at night & he’d just done a 12 hour shift of brain surgery, but the girls do have a point.  His red hair, so neatly combed for his official photos, is generally far more wild & free.  Framing his face, he completes the look with much lengthier facial hair than this formal photo suggests, creating a convincing mane.  Combined with his divine status in our family, we have concluded that from here onwards, he shall be known as Aslan.

The reserch group that Mr Corns is involved with:

https://www.neural.leeds.ac.uk/groups/ra_neuro_onc.php

His academic papers:

http://www.leedsneurosurgery.com/consultants/corns/

Something very unusual happened to me today. It may sound quite ordinary to you, but whenever anyone asks me for directions, I’m almost always at a loss as to how to help them. The ‘mental map’ and sense of direction that Fergus takes for granted are entirely missing from my capabilities. However, today I was asked by 2 sets of wondering patients for directions around LGI. Despite the complexity of this sprawling village-like mass of ancient & modern buildings; complete with a dizzying array of walkways and connecting corridors on different levels, I found I knew exactly where they needed to be & how to help them get there.

I could, if requested, also give advice on where to park, the maximum stay at each neighbouring car-park, which ones are cheaper after 6pm & which can be navigated with a roof box on (not many). I have a detailed knowledge of the sandwich shops, cafés, and convenience stores in the local area, & importantly, where to get the best caramel shortbread.

I even know the way in through a secret door marked as ‘fire door only – alarmed’ (it’s not) that cuts out a good 15mins of trekking around the outside of the building from my chosen car park to an official entrance. So if you hear of a mass evacuation of the hospital due to a fire alarm incident, this was nothing to do with me.

I’ve paid 3 visits to LGI today.

Auntie ‘Nightingale’ Kate arrived at 7am to allow me to get out early & make sure I could be there when the doctors do the rounds this morning. I didn’t learn a huge amount, but I’m glad I was there. Mr Corns was not on the rounds, but he did visit Fergus quite late last night & I was able to ask him how he thought the operation went. He said he was very happy with how it had gone. Last time around, he had to stop before removing a visibly large portion of the tumour as it was going to cause permanent disabilities. This time, however, he was able to remove as much as he could see (using computer guided imagery as well as his eyes) without causing deficit. He cautioned that it is the MRI that will really show us how successful the operation has been, and of course, the all important histology results that are to follow.

It’s really positive news that the surgery has gone so well, but I know from my research that even a single tumour cell of an anaplastic astrocytoma will eventually lead to recurrence of the tumour. The question is how long it can be kept at bay for.

I wasn’t too popular with the Sister on the ward being there out of visiting hours, so I returned home & spent a couple of hours doing some long overdue life admin (or wife admin, as I call it).

Back again to Fergus at lunchtime, and a visit from our nephew Amos, aged 1. With his mum & dad of course, but it’s Amos who is the apple of Fergus’s eye during the visit. He’s always been such a natural with young children; they just flock to him. When our girls were born, Sister Shepherd at Jimmuy’s Transitional Care Unit declared that Fergus should be cloned, and all fathers should be modelled on him. I couldn’t agree more.

Ferg had some work to do with the physios in the afternoon, so I went home again & managed to get an hour or so of sleep (very, very deep sleep – much needed) before returning once again with the girls in tow.

We learned that Fergus has been out of bed & walked a few steps, supported (physically) by the physio team. He’s such a tall man it takes 4 of them to brace him as he tries to re-gain control of his right leg. Unfortunately, the leg is really not behaving & Fergus is going to have to work really hard at the physio this time in order to get back on his feet (no pun intended). The team seem optimistic that they will be able to get him walking again so there is no need to raise the red flag just yet. My heart goes out to Fergus seeing him stuck in bed, but I know that his determination to get up & about will mean he does everything he can with the physio team to help himself.

He’s also been moved further along the ward, out of the ‘high observation’ zone down the corridor to the bed next-door to last time. He’s in Ward L25 Bed 23, visiting is 12-3 or 5-8 and I’m sure he’d love to see any of you.

It was lovely to see the girls having a proper cuddle & spend some relaxed time with Fergus this evening. We stayed long past the end of visiting time and I’m concerned about how exhausted the girls will be tomorrow, but it was worth it to see them grooming their Daddy, helping him to ‘wash’ his hair of dried blood & making him as comfortable as they can. They are going through so much. It breaks my heart.

 

Here he is! Ferg is doing incredibly well post surgery. He managed to stay awake while they (literally) screwed his head back on. Well, his ‘bone flap’. This means that the after affects of anaesthetic are already wearing off & he’s much less confused than last time around.

He’s had a meal & lots of drinks & is doing great. He has some pretty major propreoception issues but nothing unexpected. Fingers crossed the physios will be able to help him overcome these again.

His major concern is how well did the surgery go. We should get some answers to that in about 3-4 days.

For now I’m just relieved that he has emerged from surgery as the real Fergus, complete with bad jokes and a stubborn unwillingness to accept help of any kind. I wouldn’t have him any other way.

The MDT is the multi-disciplinary team; Fergus has an enormous team supporting him here at LGI. I’ve had a flurry of calls from people as I sit here on Ward 25 in the all too familiar waiting area.

The first was from Laura – see the post ‘he’s out’. I then had a call from Mr Corns’ registrar who told me that Fergus has done really, really well & that they are confident he’s been left with no neurological defects. (Phew)

The lovely Occupational Therapist, Neave, called to tell me she’s just seen Ferg’s name on her list. She said her heart sunk when she saw his name & she’s going to come & see me on the ward tomorrow. She was a huge source of support for us last time around & it will be good to see her again.

Finally, the recovery ward have just called to say Ferg will be on ward 25, bed 5 in about 20 minutes.

Can’t wait to see him!

The physio Laura just called. He’s out, stayed awake to be sewn up this time so I should be able to see him in an hour or so. Mr Corns has said he’s pleased with the amount of resection they got but won’t know until the MRI scan how it’s gone.

Goofing around as usual. He’s in there now.