Results day.
The anxiety of the wait became unbearable last night. We drank too much wine at our brand new breakfast bar in our brand new kitchen, surrounded by brand new appliances. Ferg told me where to find the plans he’s made for his own funeral.
I couldn’t settle this morning. I’m still unpacking boxes, but find that I’m simply moving things around the house, incapable of deciding where everything should go. Instead, I labouriously clean every single jar of herbs & spices that I own. I add a label to the lid so I can identify them from above in their new home – a brand new kitchen drawer. I own a lot of herbs & spices. For a while, my mind is calm.
The sun is shining on the drive into LGI. Spring flowers line the streets; sunglasses appear; the day smiles.
“It’s going to be good news, isn’t it?” asks Fergus.
“Yes,” I reply. “It’s going to be good news.”
Now that it’s here, I understand that deep down that is what I truely believe – that it is going to be good news. How can you believe anything else?
As we take a seat in the waiting area, I notice the music playing is D:Ream’s “Things Can Only Get Better.” Seriously – in a neuro-oncology clinic waiting room?
We go through the anxiety cycle of chatting, holding hands, sitting in silence, giggling together at silly jokes, more silence. Repeat. And again. Clinic is running late; this is not unexpected, but today the agony feels physical. A chemical cocktail coursing through my body brings a metalic taste between my teeth; my pulse-points are pounding; a hollow opens inside my stomach. I need to get this over. Now.
I hear Mr Corn’s voice behind me – he’s calling in another patient. We are in for the long haul here; each appointment is at least 30 minutes. We muse over what awful news he’s been breaking to be running so late so soon into the session. Whether he’s desensitised to the trauma of it all, or if he’s moved by each & every case. It doesn’t help.
Finally, it’s us. There’s a spring in Mr Corn’s step as he shakes hands with Fergus – is this a good sign? He makes a quip about Ferg’s height as he leads us into the room, and Gill (our wonderful Clinical Nurse Specialist) is beaming at me – another good sign?
It’s been a while since we last met up – we recap where we are up to, and talk in particular about Ferg’s right leg & how it is still a long way off ‘normal’. We remember that last time we met, Fergus could not stand or take a single step, so Mr Corns is delighted to see him make the short distance from the chair to the room using his walking pole. The decision to remove or not remove just a milimetre of tissue is the difference between walking again or wheelchair-bound. It could also be the difference between your patient seeing their children grown up or not. The responsibility weighs heavily; this guy cares about his patients’ outcomes; he is checking to see if he made the right decisions in surgery.
Finally, we come to the point.
“Well, I’m pleased with your latest scan,” Mr Corns announces. I lost a moment after that. Like in a film where the volume goes down while the main character reels in shock. When I surface again, we are going through segments of Ferg’s brain, looking at ‘before & after’ style snapshopts taken (i) just after surgery and (ii) 3 days ago. He shows us that the white clusters of tumourous cells are are very similar in size and mass in both pictures. He shows us that there are still no areas that light up with the dye – areas of enhancement. This is very good news. The areas of enhancement are the real bad-boys – the parts where blood is passing through the blood/brain barrier. Where the tumour is really taking hold, eventually forming it’s own blood supply and behaving like an organ in it’s own right.
I realise that I am crying.
We can see the cavity on the shots. The gap where the main bulk of the tumour used to be. It’s pretty big.
However, the tumourous area is still signficant in size – bigger than either of us realised. Mr Corns explains that these areas are a combination of healthy cells & tumour cells, all matted together, impossible to separate. The diffuse nature of the tumour means these can never be removed safely. It is from these areas that the tumour will recur.
We take a closer look at the area that controls Ferg’s clumsy right foot. It is a mass of white matter: tumour cells have invaded the healthy area. The improvements that Fergus is seeing are caused by his brain moving this function out of this area & into a new home in his brain. This area isn’t a good home any more.
“For now,” stresses Mr Corns. “The tumour is stable, for now. It’s early days, only 8 weeks after surgery. This tumour needs close monitoring.” He informs Fergus that he’d like to ‘keep hold of you’ rather than making a referral to the low grade clinic. He expresses concern that they may not be able to, “look after you as well as I would like them to.” That suits us. Rightly or wrongly, we have total confidence in this surgeon and I feel releived that we don’t have to get to know a new medical team.
So, radiotherapy is postponed. For now. We are back to ‘watch & wait’ with the next scan due in 3 months. We have strict instructions to get in touch if anything at all seems amiss during that time. A seizure, for example, would be a warning sign. Fergus is on an eyebrow raising dose of levetiracetam (Mr Corns’ eyebrows that is – who surely sees a lot of doses) so a seizure that gets past that is one hell of a seizure. It seems that Fergus’s seizures are well know for their ferocious nature at LGI – I’m surprised to hear Mr Corns referring to the severity of them, although he has never seen one. We are, however, on speaking terms with most of his registras due to our frequent trips to A&E, so I guess word spreads.
(Incidentally, when I call for a taxi now, the automated voice now asks me to press 1 if I need a taxi from A&E at LGI. This has overtaken my home address as the primary point that I need to be picked up from).
I try again to express my gratitude to Mr Corns for all that he has done for Fergus. It never seems to come out quite right, but I am sure he gets the sentiment. I shake hands and offer a simple, “Thank you.”
So how do we feel after all that?
Emotionally drained.
Exhausted.
Happy.
Cautiously optimistic.
As far as having a brain tumour goes, I think this is a good as it gets.
Triplets, Travels & Now A Tumour 