Diary

4 Days on MAU Ward

FRIDAY

Strapped into a fold down seat in the back of an ambulance, watching wide-eyed as the two paramedics busy themselves hooking Nige up to an IV, fastening electrodes to his torso – front and back, recording statistics, calling the RUH to warn them of our impending arrival. The Bristolian paramedic driving the unfamiliar route, blue lighting our journey to reduce the ETA. All the while my hand resting on Nige’s head and I’m uttering words of what I hope are reassurance. On arrival I’m left alone whilst the team pass on information to the doctors and nurses in A&E, make him comfortable and stable. Then I’m taken to him. It’s all a little overwhelming and I can’t seem to stop crying.

Four times, to four different people I recounted the morning’s event. Four times, from four different people I received a sympathetic apology for Nigel’s brain cancer and four times, to each apologetic professional, I said, ‘Thank you.’ The fifth person I met was the Macmillan nurse, and so very thankful was I, with her matter-of-fact questions and warm, knowing smile. Brain cancer sparks a real interest in people, especially young doctors and consultants and that’s as it should be – it’s an exceptional area of medicine – but I wasn’t in the mood for going back to page one of our journey, and the Macmillan nurse was on the same page as us.

From there we were sent for CT scans and X-rays of his chest and back. The nurse recognised me;

I remember you, don’t I?

Yes, we saw you right at the beginning, on our first visit to A&E 6 months ago…

I don’t know why but as I waited in the CT area I was overwhelmed with grief. This is where it all began really, this journey of ours. Here, I waited and waited so we could rule out anything serious. I never thought we’d be ruling it in. Then the X-rays. I remembered being here too. More tears. Never have I felt so alone. I messaged Sandra, she messaged back. Ali too had sent a chirpy text to say Harry and Gabe were okay, bringing me back to my senses and reminding me of how lucky I am in so many ways. When they’d finished and we were finally heading to MAU ward, I found an extra reserve of inner strength. The kindness of everyone we came into contact with lent a feeling of security and Nige was becoming more and more chatty as the fluids rehydrated him. On the ward the nurses re-sited the cannula initially put in by the paramedic. He ate a small amount of vegetable soup, followed by ice-cream and by the time I had to leave we’d had a good hour or two of laughter and hugs and chit chat and love.

Having arrived in an ambulance, it dawned on me that I had no car. So, unable to conjure a lift from anyone and missing the bus, Ali and I strolled home. We talked, we laughed, I probably cried a bit, I definitely got blisters on my feet; we conquered. In fact we both conquered a lot on that day.

 

SATURDAY

Come on Gabe!

What’s the hurry? He’s not going anywhere…

Desi, the nurse on duty, rang to say Nigel was moving to Parry Ward. I was a little anxious about my ability to find it but shit, I’ve dealt with worse. Gabe had a shift at the pub so I dropped him in town on my way. On arrival my phone rang again – well Nigel’s phone actually.

He’s not moved yet but we’re hoping…

Don’t worry, I’m in the Atrium. I’ll be at his side in 2 minutes.

Nige was sat on the commode when I got to his bed – charming! A stool sample was needed and anyway, they don’t want him walking far yet. I asked after Bob and Chris (the two men opposite). Nige wasn’t impressed with Bob’s shouting throughout the night. I think it’s hilarious but then I don’t have to endure it for long. Chris is still wandering about, terrifying me as he tears up tissue, drops it on the floor and then tries to pick it all up. Today though he was putting his torn tissue onto Bob’s bed! His son and daughter came in again, they’re understandably worried but I feel sorry for Chris as he is able to get about – slowly – but his daughter wants him to stay in bed or in his chair. Whilst they went for coffee, he took himself off again, to the women’s ward around the corner! When they returned they saw their dad sat down again in his chair. Laughing, Desi and I told them how he was always wandering off to the other ward to see the ladies and I could see them both relaxing as they smiled. For the first time their conversation with their dad was a little less strained. Clive, in the bed next to Nige, was visited by his children too. It was very sad though, both sons cut very forlorn figures as the doctor discussed palliative options with them in hushed tones. Clive hadn’t regained consciousness the whole time I’d been there. He was in a great deal of distress and moaned and cried whenever the nurse tried to take his blood pressure. After they’d left and the nurses had decided to stop trying to do obs on him, Clive’s breathing settled and he looked less like he was at death’s door. I wish I could’ve spoken to his children too. I wanted to tell them he wasn’t distressed anymore.

We have an MRI scan tomorrow morning, at 8.50. The appointment was made months ago but as we’re here…

 

SUNDAY

 

Happy Mother’s Day! Such an early start for me, I was at the hospital by 8.30am, yawning and in need of a coffee. The clocks went forward last night so actually I was there by 7.30… The things we do for love! Just ten minutes after I arrived we were told that the scan had been cancelled. Apparently this was due to the diarrhoea Nige still had. I asked about the stool samples too – we need another three for comparison. We didn’t waste the early start though as I managed to get Nige in the shower. I took off all the sticky pads they put on him in the ambulance and helped him to have a shave and wash his bits. Honestly, it felt great to be of use and just the proactivity of it all lifted my spirits. Back in his newly made bed we learnt that he and Chris (the only two left on their ward) were to move round the corner. More women than men meant that they needed more space so I helped wheel all the relevant lockers, tables and beds round to their new destinations. Chris was so much more settled in his new place – I think it’s because the sun was streaming through the window, making everything feel brighter. Nigel’s new neighbour (other than Chris) was Bruce, who introduced himself by saying,

Oh, we have a lovely lady!

That’s my wife!

Well, that’s no good to me is it?

No, but it’s good for me!

Men! I left them to it at lunchtime so I could have lunch at home and maybe catch up on a few zees.

At teatime I returned to the hospital with Harry. Gabe was busy cleaning and then had to go to work – he’s promised to come with me tomorrow. Nige loved seeing Harry. He proudly told Chris that ‘this is my son’ and Harry must’ve felt the relief of seeing his dad looking so much better than when he last saw him, strapped to a seat, being carried down the steps to a waiting ambulance. You forget – I forget – sometimes what everyone else is going through, it’s good to have a reminder. So for a few hours Harry and I chatted about nothing in particular with Nige. We laughed at his observations, notably of the orderly serving dinner,

You know Trump don’t you Lise?

Well, yeah, of course I know Trump!

Well, she’s got his ‘air…

She did too. Uncanny actually.

We left him to finish his egg sandwich and yogurt. He promised he wouldn’t but he’d try and eat half. Harry bought me a Mother’s Day Schwartz Burger for dinner. I ate all of it.

 

MONDAY

Another morning of hurrying Gabe along. I know we don’t have to be there for 11 but I do like being prompt. Anyway, Nige messaged me at 9.30 to say he was moving to a new ward and would probably be staying another night. However, as before he hadn’t moved anywhere by the time we got there and I’m pretty sure he won’t. They really want him in his own room due to his low immune system but there isn’t one. Besides, Nige would miss Chris too much now – they’ve struck up quite a friendship. As with Harry, Nige announced to the ward in general that here was his other son, Gabe. I love it when he does that. It makes me feel like we’re a proper unit; tight and unbeatable. For an hour or so we chatted as Gabe played with the bed and Nige laughed at him. It’s been a good many months since he’s looked this well to be honest. The interaction has done marvels too – I’m not sure he should come home! We left him eating his lunch though I’ll be back in a couple of hours.

At about 2pm Nige messaged me to say he was allowed to come home!

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Eight scans?! I had to get Ali to re-read that particular text as I drove her to work. Yep, eight scans that he’d been told would be done next month.

So after dropping Ali at work for 4.30, I parked up and skipped in to see him for the last time – hopefully. Elena (the nurse) assured me that his medications were being dispensed and hopefully we can go home at 7. I told her that Ali finishes work in Medical Records at 7.30 so we worked to that deadline. Chris’ son and daughter came in again. I’d helped him with his phone earlier and he was so grateful.

Your daughter’s sorting out my phone!

She’s not my…

Shhhh…!

Let’s be honest, it’s not the first time it’s happened and as I get older, I’m less inclined to correct people.

At 7.15 we made a tearful departure from MAU ward. Tearful because we’ll both miss Chris; a gentle man recently diagnosed with Parkinson’s and who bears an uncanny resemblance to my lovely dad. As Nige sniffed his way along the corridors to the car park I told him we could always come back in tomorrow to see him. Unsurprisingly he said no.

Back home and back to normal. Nige upstairs, me down. The boys busy with whatever they’re busy with. I’m wondering still if he’s better off here or there…

*

Here. Always he’s better off here, with me at his beckoned call. Though if any of you want to visit, he’s always up for a chat!

 

 

 

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Diary

Dear, well you know who you are,

6

 

They say ‘what doesn’t kill you, makes you stronger’ and so I guess I’m heading towards Boudicca status! We’ve had an eventful month, the beginning of which was the highlight… After that, well read on and I’ll catch you up.

As I mentioned before, Nige has had a horrible stomach bug which, due to his compromised immune system, he just can’t shift. The weekend of his birthday we had friends over for a ‘Really Nasty Horse Racing Game’ evening. Right up until they arrived I wondered if I should’ve postponed the event, Nige was so not feeling it but to all of our amazement, he was fine. We didn’t keep him up too late (fatigue still has him in its grip) but he smiled a lot and loved chatting to Bex and Liam about their upcoming French adventure. From that night he picked up a bit and a week later he left the house for the first time in weeks. The spring sunshine helped and the fact that he wanted to get his photo for Harry and Ali’s Nature Challenge! He still had an upset stomach but the anti-sickness tablets kept the nausea at bay. The following weekend we visited Nick and popped in to see mum and dad on our way home – that would’ve been unthinkable 10 days earlier due to him needing to go to the loo constantly. He even had a bite to eat at mum’s, which was a massive improvement on the previous week.

With all this improvement I decided to try popping into work for a couple of hours on Tuesday. I’d had a meeting with Sue and saw a few of my class in the playground and thought, yeah, I can do this! So the following Tuesday I braved it and went in. I don’t know what I was worried about, the kids haven’t changed at all (apart from getting taller) and it felt like I’d never been away. Happy days. When I got home, Nige had been a bit sick. He didn’t look great but I still wondered whether it was a little psychosomatic, it being the first time I’d gone back to work in several months. I asked if he was alright with me leaving him for a couple of hours a week and he said it was fine, so I thought I’d try going in again next week and see how he manages. However, things took an unexpected turn.

On the Tuesday I worked, Nige started his 3rd month of chemotherapy. Generally he’d been doing really well but I think it’s a struggle alongside this stomach bug and the fatigue. On Friday, 24th March, I could hear him being sick in the bathroom so I got up and went downstairs to sort out the cat, make a coffee and breakfast, expecting Nige to go back to bed. But he came downstairs to get his Ondansetron and Omeprazole. When I came into the kitchen, he was at the sink with his tablets, running water into a glass. He put the tablets into his mouth, shaking a little as he was cold. As he took his drink I could see the terror in his eyes; the water wouldn’t go in, the tablets were unyielding and as he turned to me, in horror, I watched as his arms shot out straight, his whole body went rigid and he collapsed to the floor, as straight as a ram-rod. He was unresponsive as I knelt beside him, tried to clear his mouth and put him into the recovery position, his breathing was loud and growling and his entire body was rigid and tight. I screamed for help and in moments Harry and Ali were by my side. Ali rang 999, Harry kept talking to Nige and I explained what was going on to the operator, who was wonderful. The ambulance got to us super quick and Gabe let them all in. From there I let them take over. They talked about it being a seizure due to septic shock and never have I been so terrified. In fact I spent the entire day that way as we first raced through town to A & E, then had to endure hours of tests and different doctors offering their opinions. One even asked about Nigel’s thoughts on resuscitation.

“I see you have Multiforme Glioblastoma. I’m really sorry you have to go through that (!) It would be good for you to think about the right to resuscitation.

“I’m sorry what is that?”

“Well, in the event of you needing to be brought back we can resuscitate but most people have a lower quality of life after that so, I know it’s not a very nice subject and it isn’t an issue now but may be in the future…”

However Nige didn’t hear the last sentence as he was processing the initial answer to his question so when the doctor went he wanted to talk about it to me.

“We have to talk about that thing then. That serious thing.”

“No lovely, we really don’t. Right now we need to get you through this. Then, when we’re home and relaxed, then we can discuss that.”

Honestly, I despair with these ‘professionals’ sometimes.

By the time I left at 7pm Nige was on MAU (Medical Assessment Unit) and was looking a little brighter for all the fluids he’d received via IV. Chest and back X-rays were done, CT scan of his head was done, stool samples were required… I left there certain that this was a seizure due to chronic dehydration, I knew that there was no connection to the cancer and I was absolutely positive that with Harry and Gabe, we’d get through this.

And so, because we missed the bus, Ali chatted, I cried, we strolled home together.

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Diary, Reflective

Dear, well you know who you are,

4

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.

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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 ;^)

 

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Reflective

Dear, well, you know who you are,

3

 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?

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*

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.

 

 

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Friday, 7th October, 2016

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Louis XIV Legs

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.

 

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‘A picture speaks a thousand words…’

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

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“I fuckin’ hate it ‘ere, it’s like fuckin’ Groundhog Day!”

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

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Strolling along. As you do.

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!

 

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All our love (for now), Nigel and Lisa xxx

 

Reflective

Words and Pictures Make Life Complete

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Reflective

Dear, well, you know who you are,

2

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.

 

 

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Reflective

Dear, well, you know who you are,

1

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.

 

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Fishing with my big brother, mid ’70s

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