“I’ve been sat around long enough, seething quietly at the lack of familial fucks coming from Nottingham. It doesn’t bother Nige but it does me. For a while I didn’t think he’d see this birthday and so it follows that I’m trepidatious about the many happy returns thing.”
Small and peculiar, I was never one to demand centre stage.
Introvert and singular, even I failed to notice me age.
At the troublesome age of fourteen I obviously sought a gaze or two. The clothes became peculiar and singular, while I remained small and introvert. I should have been a worry for all concerned yet no one noticed me at all.
In a small town, as introverted as myself, I carved a non-name for myself. My outgoing confidence betrayed my inward awkwardness. My two large brothers protected my ice maiden cool. But that couldn’t last forever.
Pubs, pubs and more pubs. What else is a girl to do? I smoked and drank like a man, dressed like a wood nymph, froze people out. Until I met the dad of a man who was a friend of a friend. I liked that friend. I thought he was cool.
A drunken night, no words exchanged just gazes. “You confuse me,” said my friend. “You have no idea what you do to men.” Hmm, and I downed my pint and rolled another. Cold and indifferent, I shrugged. The dad of the friend (who I thought was cool), said,
“Your face is exquisite. I would like to photograph you.”
“All right,” said I and got into his car.
We head out of town, this dad and I, the friend (his son) in the back with me.
We pull up to a barn, a converted barn and I’m not as impressed as I should be.
I remember little else, I was pretty drunk I guess, though I do recall the light switch.
It was on the wrong side of the wall and it mattered to me. Much more than what could’ve happened next.
I woke up the next day, in my bed in my house with my mum making breakfast downstairs.
My recollection was vague but I knew I’d been good, my friend had been there the whole time. For months subsequent I asked this chap, “Are the pictures done then, are they okay?” He just smiled and looked kind of sheepish.
Finally I asked and he said, “Lisa, they are the pictures of a quiet beauty taken by a lecherous, drunken old bastard.” He stopped short of adding, “Who, if I hadn’t have been there, would’ve taken full advantage of your own insobriety.”
That friend of mine remained confused about me but I became wiser that night.
For dirty old men are there throughout life but to get into one’s car is not right.
It’s beginning to look a lot like Christmas! Well, it does in our house… I blame the manifestation of twinkly lights and all things festive on the absence of outdoor influences. Usually we’re rushing around with work and moaning about the traffic in town that comes with the Christmas Market and influx of tourists. But due to Nigel’s condition, we are housebound! The need to brighten the days is tangible and what better way than with well placed lights and tinsel.
When last we spoke, radiotherapy was due to start alongside oral chemotherapy. This kicked off with an appointment with a delightful pharmacist, who tied herself in knots trying to explain the timings and dosages of the various medications. It went a little like this;
“So this is the Temozolomide. It comes in two sizes, 140mg and 5mg. Each day you’ll need to take one 140mg and two 5mg, totalling 150mg. They need to be taken one to three hours before your radiotherapy and two hours after food or one hour before.” I take two larges boxes filled with individually wrapped capsules. “Now many people feel nauseous when they first take Temozolomide so there’s these; Ondansetron.” Two more boxes… “You need to take one of these thirty to sixty minutes before the Temozolomide. After six or seven days you may be fine to stop them. I’ll give you these, Metoclopramide Hydrochloride. You can take one, three times a day if you do feel nauseous once you’ve come off of the Ondansetron.” A small, white tub is produced from the bottomless bag, “In this tub we have the antibiotics, Co Trimoxazole. You need one, twice a day on Monday, Wednesday and Friday…”
“We do continue with the steroids don’t we?”
“Oh. I’ll check that.”
“It says on the prescription ‘ongoing’ so…”
“Then yes, continue with those. After food.” Nige looked at me, panic on his face, and asked, “Have you got all that?” Believe it or not, I completely followed everything the pharmacist said, “Yep. I just need to get it down in my diary, down to the minute!”
We left with a huge carrier bag full of six weeks worth of medication, eager to start and so to end this part of the journey.
From our first appointment, on Monday the 14th of November, the camaraderie of the ‘Radiotherapy Waiting Room’ was truly enlightening. Filled mainly with men undergoing treatment for prostate cancer, their wives sat stoically, nattering about the small stuff and listening intently to each other’s tales of traffic madness, unruly grand children and favourite dishes. I’m cursed with disinterest in such people generally, but by Wednesday I caught on to the point of the pointless banter and by Friday I was chatting shit with the best of them.
We have now finished our third week: half way through. Here follows a brief rundown of what we’ve noticed so far:
- Nigel’s head is bigger. Seriously, he looks like he’s storing nuts for Winter…
- He’s lost the ability to taste certain – most – foods. We’ve spoken to the dietician about this and have plenty of tips.
- His skin is a little spotty.
- Tiredness. Like, really tired! Not all the time and not necessarily at night. He generally has a sleep when we get back from the hospital, mid-morning.
- His sex drive has returned – yay!
So it’s not all doom and gloom ;^)
I have been seduced by the sheer loveliness of Macmillan. The day we left Southmead with the crushing confirmation of Nigel’s condition was certainly one we’d sooner forget. We saw, that day, the little light we’d kept our eye fixed on cruelly snuffed out, yet just one hour after getting home, a phone call provided the strike that lit a tiny flame of relief.
A kind voice told me warmly that he was phoning from Macmillan and that Lois Baldry had fast-tracked forms for us. All he needed, he said, was Nigel’s National Insurance number. Just like that. Just days later another softly spoken gent rang me for our account details – I realise how peculiar all this sounds, fraudulent even but honestly, security questions were asked! Money was paid into our fast-dwindling account pronto. And I, we, felt overwhelmingly supported and loved.
It didn’t end there, although I expected it to. Through the post I received confirmation of our PIP claim with a covering letter from Macmillan explaining why we were entitled to this help. They also sent information on a ‘new style ESA’ benefit that we’re entitled to, with a number to call and what can only be called a script to follow when speaking to the ‘telephony operator’. It took two attempts but I did get exactly what I needed.
‘Yes, Macmillan said you’d say that but, apparently, in our case you’re wrong…’
We also paid a visit to the Bath Citizens Advice Bureau. Thanks to Macmillan I already knew that we wouldn’t qualify for anything means tested so I didn’t bother taking a ton of paperwork with us. I did, however, take the ‘new style ESA’ form together with the details of the PIP thing we were getting. A lovely chap on reception told us we would be in room 1 and gave us a card with the number 1 on it… There was no one else in reception. At 10.30, on the dot, we were met by Steve who took us, not to room 1 (the reception guy rather awkwardly took our card) but, down some steps to another room – the Macmillan room. Yep, we had our own Macmillan Citizens Advice dude!
The help we received in just one hour was so positive. Steve even filled the form out for me, as he was fascinated by the new layout. In between giving us monetary advice, he talked about his own cancer experience.
‘I treated it like a big adventure!’
On describing his radiotherapy treatment, he explained to Nige how tired he’d feel – ‘Not straight a way but it will catch up with you so rest after your first treatment.’ I think that made a lot of difference to Nige. To talk to a guy, similar in age, about what he was about to go through was a big thing. An important thing. A thing so great, we decided to go for breakfast once we’d said our farewells, all smiles and hand-holding.
So, already I have reason to love Macmillan and what they do. The fact that on that crappy Wednesday a Macmillan volunteer decided to ring me and shine a light into our grim world with his practical problem-solving voice. I know it won’t burn forever but it does signify hope, doesn’t it? And anyway, it’s not necessarily how long a light burns for but how brightly… Right?
Our next step, after these few days of inactivity, is to prepare for and start the radiotherapy. Nige will also be having oral chemotherapy so I’m expecting, well, I’m not sure really. They give you a whole list of things to expect but, honestly, it’s a bit shit. A ‘shit list’. And I’m hoping for more of a ‘little bit unpleasant list’ and will settle for nothing else.
Friday, 7th October, 2016
10:30am – I have to say I was a little reluctant to take snapshots of my man before his operation (that old notion of tempting fate and other dark thoughts besides ran through my head) but then he was given these surgical stockings to put on… Yep, I hold my hands up, I barely contained my giggles.
6:00pm – Just 7½ hours after leaving my side, I’m back by his. I was greeted by a, “Hello gorgeous!” well, “‘Ello gawjuss!” to be more precise. It’s truly astonishing, isn’t it, that less than an hour after major brain surgery you can charm your wife and eat a roast dinner?
Sunday, 9th October, 2016
I arrive on Sunday just in time to see Nige moved from the ward, into a private room. Although he is happier, I think happy would be stretching it a bit. He had his bandage removed by a very lovely nurse called Tracey, who was more than a match for his surliness!
Sunday, 16th October, 2016
So, home from hospital on Monday, staples out the following Friday, out enjoying Victoria Park on Sunday. The power of positive thinking and a brisk, October day. We’re winning!
All our love (for now), Nigel and Lisa xxx
Up until the first appointment with Dr Barua at Southmead on September the 27th, Nige had been adamant that all in Nottingham need not be told of his illness. It’s astounding to me that this was such an easy wish to comply with, that our connection with family there was so vague we could go for weeks and not be asked a single thing about our health or wellbeing. Not a phone call, text message, birthday cards… There was, of course, a slim chance his mum would phone and then I would need to explain (at this point Nige didn’t answer any phone) but in all those weeks, that never happened. On being told on the 27th, that the tumour appeared to be a particularly aggressive cancerous one on the frontal lobe of the brain and incredibly difficult to remove, we were advised that this was a ‘life changing diagnosis’ and so, together, we decided Nottingham needed to know.
I made the initial phone call alone. There really was only one person to talk to, that we most trusted to sympathetically share the news with his mum, and that was Sandra, Nigel’s younger sister. She did an admirable job, consoling, listening and, by the end, releasing all her tears and sadness for me to share in. Of all my dealings with the family over the last 27 years, this was the most connected I’d ever felt. Bizarre, that.
The next evening I rang Nigel’s mum. I knew she’d been told and I imagined all the questions she would have that Sandra couldn’t have answered. In complete contrast to the previous night, this was a measured, calm exchange of words. I purposely didn’t use the word cold because the implication of that is of an uncaring nature and I don’t believe that to be the case at all. I have a very frank and honest relationship with my mother-in-law, as I have said before, I waste no needless platitudes or compassion on the unworthy. She is a soul, however, who deserves the compassion of others yet seldom knows how to deal with it – I get that completely, in that respect I think we’re similar. But in just about every other, we are not. After that first call she rang often. It wasn’t until her third call that she asked how her grandsons were coping.
By this point we were very open to visitors. Gabriel had spoken to his dad about the full implications of his condition, about how to accept it in order to fight it and about the strength to be got from human interaction. I proudly listened, silently sobbed and completely agreed with all he said and as a result, we cried openly and accepted the hugging arms of all who crossed our threshold, from close friends and family to work colleagues and bosses. We welcomed it all. To this date though (a fortnight post-op) we haven’t had the pleasure of a visit from the Midlands.
The morning after Nigel’s very successful operation we descended en masse with a tub of his Rhubarb and Custard sweets. He was up and shuffling about, bound in a rather fetching head bandage and with his Louis XIV stockings to prevent thrombosis or something. His language was foul though; every other word being ‘fuck’ or ‘fucking’ and his choice adjective to describe those he disliked being ‘cunt’. The boys and Ali have learnt a lot about his hatred for ‘Brexit loving Tory cunts’ in the past month! Initially funny, then a little tiresome, I took this phase for just that; a phase. Nige had had his head opened and his brain manipulated. He’d gone into the theatre with the most fantastic attitude and stayed chatting to his team for the majority of the six hours it took to remove the tumour. Now if that isn’t a reason for profanities I don’t know what is… Shit, I half expected him to be speaking only German, foul is, at least, a language I understand.
“My mind is just completely open. A gaping skull. I see & think about everything, not just the now but the whole future.”
“So when we talk to you about ‘next steps’ you can’t grasp that concept?”
“No, I see it all in it’s entirety.”
After just three days – three days! – in hospital, I took a very relieved husband back home to his family. Harrison and Ali had cooked a special chicken dish for his home-coming and we sat together to eat. That was on Monday the 10th of October. We eat together most of the time these days. We play more board games, have more conversations and know each other far better than before.
So in conclusion to this part of our journey, I can only say Nigel’s strength, his optimism and his energy have completely overwhelmed me. Only in the darkest hours of night do I allow myself to think of a grim future without him, the tears soak the pillow and my heart breaks. But when morning comes again, and he’s there by my side with a coffee in hand and his full itinerary for the day ahead, the future’s bright. Every fucking day I marvel at his recovery. I am left in complete wonder at how his thoughts are knitting back together, how he just manages to make every day one of purpose is beyond me. But he does it, he does it with bells on, that beautiful man of mine.
When the love of your life is touched by cancer – not touched, smashed – by cancer, the response of those who know you best is telling. From the precious few who have chosen you to the mish-mash many who are yours by right, the reactions are somewhat varied and absolutely no general rule can be applied.
And so it was, that on September the 12th, I entered the Twilight Zone: A world where everything still appeared to be the same but that me and mine saw differently. It’s nigh on impossible to explain; that slack-jaw moment in time where realities collide and you see a whole future of hospital corridors, white jackets and stethoscopes stretching out in front of you. Understanding is everything, I’m told. Yet too much clarity, in my opinion, is terrifying.
On arriving home, the diagnosis is shared with the children. Although adults now, they are still children within the home and so the imparting of such ridiculous and heart-crushing news brought with it tears and hugs. Where one was filled with a disbelief buoyed with inner strength, the other stayed calm and collected with a glowing inner optimism. Both managed to fill the gaps within my own self as we resolutely stood together, prepared to face down all that was to come. It is little wonder, then, that I craved to keep my world within these walls for as long as possible. Everyone at arms length or, as it, turned out, at the end of a text message. With the exception of my mum (who doesn’t have a mobile), all communication with those we love was conducted via texts, WhatsApp or emails and afforded us all with breathing space to compose our reactions, our emotions. Thank goodness for Marianne! My oldest friend who instinctively visited and gave her arms to comfort me, her words to ground us and her tears to join ours. I never knew how powerful human interaction at such a time can be; how essential it is, in fact, to be in contact with others who do have a mutual interest in the one you care so deeply about. In just that time alone, on my 47th birthday, Marianne made me realise that the world still existed, spinning continually, witnessing all manner of scenarios, scenarios that, quite frankly, eclipse our own.
“Time to pull up your big-girl pants and get on with it!”
Over the following weeks I was praised by all who met me on my courage and strength. Friends who never expected to see me in this situation were amazed at my ability to show humour, patience and compassion. For me though, it was no surprise. I have forever been a practical soul, darkly funny with a massive capacity for compassion. What I have never been is wasteful. By that I mean I don’t waste my compassion on those unworthy – and I do have very high and exacting standards. Maybe that’s where the amazement from friends came from. Maybe they have just never been worthy of my softer side…
The awake craniotomy surgery was scheduled for October the 7th. Just me and my man for this part of the journey. He left my side at half 10 and walked to the theatre with his team. I loitered in and around Southmead, intermittently placing myself on seats situated around the Atrium and watched patients and visitors in various states come and go. I finished a book I’d been given by a friend and only when it was almost time for the surgery to be done did I make my way back to Gate 20. I sat with others in the waiting room; a middle aged couple talking continually on their phones and a heavy-set bloke who was clearly disgruntled. I guess we all had a story but no one wanted to share. Not me anyway. On seeing Dr Barua, no suit this time but in his scrubs, I was suddenly aware of my solitude. Whatever he has to tell me, I’m to hear it alone. The gravity of that thought didn’t pull me down quite as much as you’d think. I knew that to have anyone stay with me for the nine hour day (six of which was just me) was an absolute farce and so it followed that of course I was to receive whatever news was to come alone. I was okay with that. At just after 5pm he told me the surgery went “really well”. At about 6pm I was by my man’s side, talking and kissing and eventually feeding him a roast dinner. By 9pm I was home with the boys, talking and hugging and eventually sleeping. But somewhere in-between that something beautiful happened. Not to you well-adjusted lot, I’m sure, but to me it was beautiful: my big brother rang me.
As I left Dr Barua, my heart singing and pounding, my feet aching and flying as a descended the stairway, my phone rang.
“Hello Liz, how’d it go?”
Oh the joy to be able to share the news so quickly and to such a willing correspondent, I can’t begin to tell you my relief. The whole day I’d not spoken, except to answer medical questions or to confirm dates or times. And there it was, just five words to bring me back to the world of people. But that wasn’t all that phone call meant to me. You see Nick had no idea what the outcome would be. He couldn’t have known it was a success, it could’ve gone as bad as a brain operation could go – he could have got a hysterical, bereft little sister howling down the phone at him. I’ll let that just sink in for a while.
I think that phone call he made to me at that precise time was the most brilliant thing he has done for me to date. And that’s something.