Friday 21^st September 2018

It’s wonderful to have Fergus home. He’s in good spirits & we stay up late chatting & reminiscing about old times. We are full of hope that the surgery has been successful, and that the tumour will be reduced to such a small size that it won’t grow back for decades.

Of course, we know that the full results are the only way of getting any kind of certainty. But they are weeks away – about 4 weeks we’ve been told. Until then, our focus is getting Fergus a little better every day.

Thursday 20^th September 2018

It’s our wedding anniversary today. 10 years. As the tradition is tin, I resist the temptation to buy some foil & instead buy Fergus a huge lasagne tin, something he has often commented we are missing from our kitchen. He’s seen me coming across the car park today, and we giggle as we unwrap it & exchange congratulations.

Fergus announces that he wants to come home today. He’s not sleeping well in hospital, and just wants to rest & be near to us. He shares this with the registrar doing the rounds, who approves of the decision & sets the wheels in motion.

The occupational therapists go into full action mode, declaring that he must make soup in the kitchen before being allowed home. Avocados (amongst other things) are purchased & I’m invited to come and watch as Fergus prepares a chilled avocado-based twist on gazpacho. I think the OT was more thinking of heating up a tin of Heinz, but not to worry.

There is a flurry of activity, paperwork, and a trip up & down the stairs to see if Fergus can manage these. We are offered a free service where someone can come to our home & install hand rails where needed. As our rented house has no stair rail, this is a welcome surprise. I check it out with the landlord & it’s all arranged.

I surprise the girls by picking them up at the school gates & announce that we are going to hospital to bring Daddy home. They are off the scale super excited & it’s a carnival atmosphere into town.

When we arrive, Fergus is all packed up & ready to go, and we sit in the waiting area at the end of the ward, waiting for some painkillers & the discharge papers. And wait. And wait. And wait. Someone comes along and pins this on the wall.

The irony is lost on him completely.

His occupational therapist comes to say goodbye to me. We both shed a tear as she wishes us all the best. He’s young to be having this kind of surgery, and he has a family. She knows as well as I do what could be happening next. I thank her and the team for everything they’ve done for Fergus. He could not have been in better hands.

We arrive home at last. Kate has brought round some new pillows as Fergus needs lots of propping up. Evie takes them upstairs & puts the covers on without being asked. Wow. What a way to grow up overnight.

Wednesday 19^th September 2018

 I get a call early morning from his physiotherapist, who tells me that she’s seen Fergus walking like an old man & is going to sort him out today.

When I arrive at the hospital, Fergus is being marched up & down the ward, being told to stand up straight, swing your arms and stop walking like an old man! It works & kicks him into action pretty quickly, and he’s soon walking around independently and pushing to do more & more for himself. It’s a good sign.

The proprioception issues are improving, but still noticeable.

I do the round trip to school & get the girls, back to the hospital. It’s becoming a routine. I try not to think about how much money I’ve put into that parking metre this week.

Tuesday 18^th September 2018

I call my boss on the way to the hospital the next morning. Is it the first time we’ve spoken since he dropped me off in Leeds? I don’t remember, although I know we have exchanged a lot of texts. I update him on how the operation went & check he’s OK for me to be off work again this week. He is incredibly supportive, kind & of course is not expecting me back any time soon. I’m very lucky to have one, very major, less thing to worry about. I can put all my energy into supporting my family when they need me the most.

It’s with this thought in mind that I gently reverse into a hidden barrier in the car park. I’m really not cut out to be the only driver in the family.

Fergus is doing well, sitting up in bed & chatting. He’s a bit worried that he’s lost some sensation in his right hand and right lower leg & foot. Well, not sensation exactly, it’s more that he can’t place these body parts accurately. I watch as he tries to put on his slippers. The left foot slips in, the right foot hovers and makes several attempts to go into the slipper. We later learn that this is called proprioception. I make a mental note to make sure this goes into his medical notes.

It’s the registrar who does the rounds in the morning. He tells us that he believes about 70% of the tumour has been removed. He also tells us that, to his eyes, it looked mainly low grade with 2 small patches of higher grade tissue – he described them as ‘dots’ & said he was confident that the removed them, meaning they can be tested to get a full result. He orders Ferg’s drain to be taken out of his scull & makes a note of the proprioception issues.

I spend most of the morning at the hospital, trying to make things as easy as I can for Fergus. I buy him a cheese mix sandwich on soft bread as chewing is really uncomfortable for him. And a smoothie, to keep his strength up. He doesn’t have much appetite but it’s to be expected.

Then I have to go & pick Scarlett up early from school & take her to another part of the same hospital for her urgent referral regarding the lump on her neck. I’m feeling sick with anxiety but we chat & grab a Subway on the way, enjoying our ‘special Scarlett & Mummy time’ in the car. It’s only a short wait, thankfully, and we are in with a specialist consultant.

He spends several minutes examining the lump & announces that this is absolutely nothing at all to worry about. I double check with him – but the Dr was concerned, how do you know? He looks at me kindly and reminds me that he looks at early stage cancerous growths every day of his life, and he is 100% confident from the malleability of the tissue that it is absolutely nothing to worry about, and is simply a swelling in the gland which will eventually go away on its own. I finally believe him and we can leave to share the good news with family & friends.

I take Scarlett upstairs to see her Daddy, texting the news to family members on the way. He is, of course, delighted. But I sense something else I can’t quite place. A nurse arrives to remove the drain from his scull, and I ask Scarlett to wait outside for a few minutes as I’ve been warned that this can hurt. I can confirm that, from what I can see, having a long plastic tube pulled out of your head looks like a very, very unpleasant experience. I try to make small-talk to distract Fergus, who grips my arm and his teeth throughout. I’m astonished by how much tube they pull out (and reminded of Mary Poppins removing the hat stand from her bag).

Once the horror is over, Fergus whispers to me, is it really OK with Scarlett’s news? He thinks I am keeping something from him to protect him. I promise him that it’s the truth, and he visibly relaxes. I think we both only just realise how worried we’ve actually been about her.

Kate ferries Evie & Jemima (Scarlett’s sisters) into hospital again after school & they get to spend a lot more time with their dad. Kate offers to take them all home & make tea so I can stay a little later. I sit on a bench outside the ward, unable to make a decision. I suddenly feel overwhelmingly exhausted. Kate takes the girls home & I stay and hold Ferg’s hand. When I get home they are fed, changed & settled in bed. Thank you Kate.

Monday 17^th September 2018

 We’re all up early. Morning cuddles & kisses.   Long goodbyes. Kate takes over the morning routine in her gentle but firm manner & we take a cab into town. I don’t trust myself to drive today.

The taxi driver is chipper & asks what we are up to. Ferg’s response brings the mood down a bit. He tells us he will be praying for us today. It’s a kind gesture, and despite my staunch atheist beliefs, I am grateful for it.

There’s some kind of delay at the hospital. They don’t have a bed confirmed for Fergus. It’s concerning – surely we can’t be looking at re-scheduling? It didn’t occur to me that there was a chance it wouldn’t happen today.

Ferg is thirsty & it’s unclear what the plan is, so he can’t have a drink. I feel bad sipping my overpriced Costa Early Grey Tea. We wait. Others are called in for their surgery with Mr Corns before us. We were told we would be first. We wait some more.

Suddenly it’s action. OK, we are going ahead but not until at least 3 hours’ time. A sip of water for Fergus. Then we are called into a cubicle where we are to meet yet more of the team.

First up is the Neuro-oncology registrar. Basically, he’s a brain surgeon in training; not quite a consultant yet. He is going to be Mr Corns’ right hand man today. He repeats much of the information we’ve been told; it is reassuringly the same. He’s enthusiastic and tells us that they enjoy doing this operation – it doesn’t happen all that often & it’s quite challenging, so they are all looking forward to it. Helpfully, he draws a large arrow on Ferg’s face on the left hand side, just in front of the ear, pointing upwards. Surely the team will already know where the brain is?

Then we meet the anaesthetist. He’s a bit of a character & explains that he’ll be using a drug that is used in Australia in these operations that helps the patient to feel relaxed during the surgery. This should make the experience less stressful for Fergus. He explains that he’ll put Fergus to sleep, and the surgeons will open up his head. They will then clamp his head into a vice to ensure it remains absolutely still. Once this is all in place & the team are ready to go, Fergus will be woken up. The main thing, he explains, is to remember to stay still. If you try to move your head in the vice, it’s going to hurt. So, next time you hear my voice, think, “Stay still!”

He goes on to echo the registrar; the team all love doing this highly complex procedure. There’s just so much to it! It’s somewhere between highly reassuring and utterly terrifying to hear this. I decide to be reassured.

With the pre-operation chat complete, we are told we still have a long wait. I ask if we can go for a walk; permission granted, but absolutely nil by mouth for Fergus. We browse Waterstones, and Fergus buys a new game which is based on brain function, involving challenges to identify the object by touch alone. His physio team will approve of this! It’s good to hold hands & stretch our legs together. The time passes. We head back up the hill to the LGI.

We’re up.   We barely have time to muck about taking photos of Fergus in his goonie gown giving us the big thumbs up before we are off. Down corridors, through automatic doors. A big hug & kiss, a huge smile & he’s off. I feel cold to the core.

Putting one foot in front of the other is challenging. I’ve made a plan for the day. I should do it. I force myself into motion, walking through town to the gym to get changed, and then out for a long run. It’s a good way to pass a chunk of time, and the endorphins will reduce stress. It’s a warm day & I pass some half-empty wine bottles on the curb. Then I pass some homeless men, sound asleep across the pavement. It makes me smile. I run 5k along the canal & turn around. On the way back, the men are awake & staggering down the tow-path, shouting incomprehensibly at me. It’s a bit intimidating, but I reckon I can out-run them, given that they can’t walk in a straight line. I pass them without incident.

I shower super-fast as there’s no phone signal in the gym changing rooms. No messages, no missed calls. Food. I head to Little Tokyo and fill up on one of my favourite noodles soups. I’ve brought a book & can pass another long chunk of time like this. I feel sleepy. I think I’ve run too far for my current fitness level.

I decide to find somewhere with an armchair, perhaps I can even have a nap. I try the library, but it’s closed unexpectedly for the day. As I’m wondering what to do, the phone rings. It’s one of the Physiotherapists who has been with Fergus during the op. They have finished the main part of the operation & are now stapling him back up. I ask if it has been successful, and she says, “Mr Corns is happy that they have done as much as they can do for today.”

Fergus has asked to be put back to sleep for the final part of the op. They’ve told us he’ll be home from hospital faster if he stays awake, but the pain has been too much & he’s back under. That means it will be a while before he’s awake & before I can see him. However, I march up the hill & hole up in one of the cafes opposite the LGI, awaiting a further phone call. There are a lot of people I need to update & this passes yet another chunk of time.

I’m exhausted. Physically, emotionally. My eyes are swimming. I remember the recliner armchair in the waiting area at the hospital & decide to go back & ask if I can wait there. The nurses are lovely, they remember me, they know where Fergus is, and of course I can wait. I am brought a cup of tea and a biscuit and this small gesture almost moves me to tears. I close my eyes. A half-sleep descends. I needed this.

My phone. It’s a nurse who explains she is with Fergus who has just come round. The phone is passed over & he’s talking to me. Mouse, it’s done! I’m here. I’m OK. I’ve done it. He sounds like himself. He sounds normal. He calls me Mouse. He tells me he loves me. It’s only then that I realise how worried I’ve been. The relief that he’s OK is a stark contrast to the tightness in my belly that I’ve been carrying around all day. He’s going to come back to me.

I call the kids. They want to come straight away. Kate agrees to bring them in, but to hold off a little bit of time first.

Ward 26, bed 29, I find him easily enough. We hug and kiss and hold hands. He’s high as a kite. He is also a bit of a sight. There are tubes – a drain coming out of the back of his head, an oxygen tube under his nose. There is blood everywhere – he looks like someone has poured blood over his head, matting in his hair, spattering his face and shoulders, filing all the curves and grooves in his ears. And the staples. I don’t notice them at first at they are covered in some kind of surgical tape. He looks like you could unzip his scalp. I guess you probably could if you wanted to.

He feels sick. He feels cold. He cries and asks for his mum. He cracks jokes, “I need this like a hole in the head,” he quips. I add this to his facebook update & it’s sends a ripple of relief and laughter through our friendship group.

The girls arrive. I spend a moment explaining to them what Daddy looks like before they walk in. I think it pays off as they take it in their stride. They are loving, affectionate & exactly what he needs. Somehow, it seems to calm him seeing his little girls (not so little these days, I guess). They want to stay & stay, but we have to gently explain that they need to go back home. They beg me to come with them, but Daddy explains that he needs me, and they accept this. Thankfully, Auntie Kate has promised a bedtime song EACH, a treat that is tempting enough to back down without a fuss. I promise to come & kiss them goodnight when I get in.

It’s late when I leave. I want to make sure he is feeling safe and has everything he needs for the night. I take a taxi home. The driver assumes I’ve been working. I correct him, and once again this sobers the mood. I know that people don’t know what to say. I don’t know what to say.   It’s all very strange. He is genuinely gutted for me wishes me the best of luck. I appreciate his attitude.

The girls tucked in & fast asleep when I creep up the stairs. Beautiful faces, so peaceful and perfect. Kate checks that I’ve eaten. Shall we open a beer? We have a couple of glasses of wine. I collapse into bed, with Kate promising to be round first thing again so that I can be there when the Dr does the morning rounds. Like I said, she is pretty a special friend.

Sunday 16^th September 2018

 We are coming to the end of a weekend of family time. We’ve spent the last couple of days feeling more relaxed, playing board games and watching films together. I cling to Fergus. The girls cling to us, and to each other. We are all scared. We are all being brave. We find it hard to imagine next week.

The arrangements are made. My wonderful, generous friend Kate (or Auntie Kate to the girls) has been selected from a number of volunteers (thank you to everyone for all the kind offers of help) and is going to be at our house at 6am on Monday morning, enabling us to be at the hospital by 7am. She will be there for the girls when they get in from school & will be bringing the girls to the hospital as soon as it’s appropriate to do so. It’s a privilege to have a friend who is not only willing to do this, but who my daughters are completely happy and comfortable to be with. Someone they trust completely. She is amazing.

Ferg’s dad, Alan, is up from London & is staying with Ferg’s brother Kieran who lives just a few miles from us. We have a big Hadley family meet-up at a local pub that has an enormous garden. Kieran & Yeni have 3 young children, so it’s a good place for everyone to go as we can make as the 6 children can make as much noise and mess as they like without disturbing anyone.

I’m not feeling too good. I try to identify the feeling. It’s not like depression or sadness. It’s not even worry or stress. It’s fear. I’m utterly terrified of being alone in the world without my soul mate. I try to swallow it down, but it’s there in my throat all through the meal. It’s too big for me to process, so I have to find a way to work around it.

It’s still there now.

Thursday 13^th September 2018

Once again at LGI, meeting a number of people who form part of Fergus’s care team. They all know who he is & what he’s here for. It’s only now that I really start to acknowledge that this operation is kind of a big deal.

We spend a long time with the Physiotherapy team. They will be with Fergus during the operation, asking him to perform tasks that will enable them to be as precise as possible about any changes to Ferg’s physical capability. For example, they ask him to look away and put objects such as coins in his hand – which coin is that? They record baselines of reaction times & abilities so they know what to aim for post-operation.

We then have a look around the ward where he’ll be admitted, and the ward he’ll stay on afterwards. Everyone has head injuries of some kind, which shouldn’t really be a surprise, but somehow is to me. There are some very, very ill people on this ward.

We are then led down to the MRI scanning rooms once more, where Fergus now has to perform the physiotherapy tests while under the scanner, which creates a map of his brain function. This will be used to determine how close to each function this tumour is & will provide critical information to the surgeon before the operation begins about the likely outcome. Success will be measured as the % of tumour removed, the higher the better, and the scan will show what % is likely to be removable. I later learn that if the surgeon doesn’t believe they can get the majority of the tumour out, they won’t operate, as the risks outweigh the benefits.

We’re not finished in town yet either. Fergus has asked me to arrange a professional family photo-shoot & it’s scheduled for this evening. He wants some pictures before he has scar covering much of his scalp (and possibly some other long term impacts of the operation that no one wants to vocalise). We head to Primark & find bright coloured clothes that will ‘pop’ in the pictures. We find Harry Potter hoodies that the girls will love & arrive home laden with baggage.

My folks have arrived. They live about 1.5hr drive away & have come to see us before the operation. We all pile into the photographers together & are swept along by the experience. He’s very good & we enjoy posing & laughing along with his banter. There should be some good pictures. We finish the evening with a much needed family meal at the local Toby Carvery.

It’s a long day and we are both exhausted by the time get home. But it feels good to be able to soak up so much information, and we are both really impressed by the level of care that is being taken to prepare for this operation on Monday. I Google how much it would cost in the USA & once again, take a moment to appreciate the NHS.

Wednesday 12^th September 2018

 LGI again, this time in Mr Corns’ Clinic. I shake hands with the man who will be removing a section of my husband’s brain next week. He’s exactly how I imagine a brain surgeon ought to be. Fiercely intelligent; slightly dorky; and has a lively twinkle in his eye. I like him instantly.

He takes time to explain what the MRI scans show, and what this might mean. He explains the procedure, what he aims to do. All our questions are met with patience & are answered fully. He cares about his work, his patients & his outcomes. We will be in excellent hands.

Fergus has a growth in the brain that should not be there. That’s clear from the scan. It’s almost certainly a brain tumour, and probably grade 2 or grade 3. Not the best, not the worst. We have already learned that brain tumours are graded 1-4, with 1 & 2 classed as ‘benign’ and 3 & 4 classed as ‘malignant’, although this way of referring to the tumours is now falling out of use in the medical profession. We learn that what is actually far more important is to find out what type of tumour it is. There are hundreds of types, and they all behave differently. In fact, every tumour is individual and outcomes are hard to predict. There are so many factors at stake: location, size, genetic make-up, age & fitness of the patient, what stage it is detected at and many, many other things. The combinations of possibilities are endless.

For now, the focus needs to be on getting Fergus ready for the operation. We are to return the following day to meet up with some further members of the MDT (multi-disciplinary team) for a dizzying list of appointments.

I feel an enormous and overwhelming gratitude to the NHS and all the wonderful people who work so hard within it. I make a mental note to find a way to help the campaign to save our NHS. It’s a truly wonderful organisation.

As we leave the room, I shake Mr Corns’ hand once more. I ask him to please take great care of Fergus. He smiles warmly and promises me that he will.

Tuesday 11^th September 2018

 Fergus’s 44^th birthday. Happy Birthday Fergus. He’s in good spirits & we take the girls out to Red’s True BBQ for the evening, where we eat our own body-weight in red meat & oversized wings. We make every effort to make it feel as normal as we can for the girls & I think it pays off. Fergus is genuinely able to rise above the news, set it to one side & make the best of right here, right now. He’s taught me a lot of things in the 20 years we’ve been together yet I’m still learning from him every single day.

Monday 10^th September 2018

 Back in LGI, to the colposcopy department this time. An appointment for me, not Fergus, just for clarity. Fergus holds my hand while they take a biopsy from my cervix. I can’t stop crying. Surely our family can’t be unlucky enough to receive 3 cancer diagnosis in a week? Results will be in the post.

I spend the afternoon calling people, breaking the news of Ferg’s upcoming craniotomy. It feels awful to be wrecking people’s day like this. People who know & love Fergus are reduced to tears, one by one. It feels incredibly cruel and I feel an overwhelming sense of guilt. Despite this, I am touched by the warmth and love that is offered through the despair. I’m going to need these people.

I grieve for the future we planned together. Our carefully laid retirement plans crumble; I can see only a future of solitude. The house we are building together will be far too big for just me. I don’t want to live there alone. This isn’t what’s meant to happen.