Reflective

Who Looks After You?

“Who looks after you?” is a question I’m asked most weeks and I usually answer with a smile and a shrug but actually the truth is I’m looked after by everyone and no one.

Family first. I’m not alone as both boys are still living at home and I’m hugely grateful for that. I have my big brother, Nick, who’s doing lots of work around the house so he’s a regular visitor too. The three of them fulfill very different needs in me: Gabriel has a huge sense of justice and helps me to pick my way through my the thoughts that bombard my brain continually, whilst Harry allows me to say out loud my darker, more unthinkable thoughts with no judgement and tremendous humour. They find their dad’s deterioration hard to watch, of course, and so when I’m at work they tend to stay in their bedroom. Although I would prefer them to take a more active approach to Nigel’s care, I’m not keen on playing the ‘guilt’ card. Besides, what do I really know? Could be their laid back approach that’s keeping Nige sane… I mean, to have the three of us constantly watching him isn’t exactly conducive to that relaxed, calming environment we’ve strived so hard for in the past twelve or so months. There’s a price for that, by the way, for the normality we’ve upheld. It’s being charged to our personal lives – Harry’s all spent out, I’m on a low budget and Gabe’s actually managing to save. Between us we’ll even each other out. Through Gabe, there’s Lois. Our very own Little Blue Wolf. I’m not sure I’ve ever met a lovelier person. Honestly, for one so young, so vulnerable, she takes altruism to a whole new level. A week seldom goes by without a message on my phone from Lo, checking up on me and seeing how things are; offering to relieve Nigel’s boredom with impromptu visits… With her own illnesses to combat, I am both amazed and honoured to include her as part of our family, and that extends to her own family too. Then there’s Nick. He helps without knowing it, aside from the obvious help he’s giving with the garage of course. It takes a huge amount of courage to continue to embrace a broken family such as ours. After a week or two away, working or travelling, he bounces back up our steps, not knowing how we are, how Nige looks or sounds: how the cancer has progressed. I can tell by his face if there’s a difference (being with Nige constantly clouds my vision of progression) and that’s an enormous help too. Spiritually, Nick provides me with a constant link with my other self; the Barnes girl with the ‘Doc Martens and roll-up’ attitude who I know will be a huge help to me in the coming months and years. I feel protected when he’s near, without him doing or even saying anything. Which is perfect as he talks very little!

Never one to surround myself with friends, I have found myself quite overwhelmed by the few I do have: Marianne checks in like a warm arm around my shoulder, allowing me to speak or not speak, hearing the silences as well as the rants. She’s done this for me from the very beginning, choosing to ignore my request for isolation and giving me what I actually need; support, as well as the occasional coffee and cake outing. She’s smart and bright, sugar-coats nothing and wastes no words. We’re like two peas in a pod. Gemma gives me her naive perspective on things, paring it down to it’s core. She has a need to understand me, and I do too, so chatting with her often reveals things about me I never knew! She has thanked me over the years for all I have taught her, little understanding just how much I have learned from her. Though, of late, I think she’s realised. Michelle is a haven of fresh air and woodland walks, with the occasional bottle of wine thrown in. She symbolises a future of sorts, my future here, on the Hill, for though I’ve known her for the past five years, our friendship has only really grown since Nigel’s diagnosis. Since then we’ve walked miles of a morning with her dog, shared stories of our pasts and even completed a 26 mile Hike for Macmillan together.

There are more, of course, but these are the friends and family who take care of me without first having to ask. They all just shove their noses into my business, make me face uncomfortable truths and listen. I don’t know how I’d manage without them. The thing is, I don’t do a great job at managing with them either. Oh I think I exude strength and I know I have everybody’s admiration but I am unravelling. I can feel the facade cracking, the tears are constantly waiting to drop and in the darker hours drop, they do. No one can help me. Not with this bit. There are no words, you see. It’s all emotions; raw and terrifying. Now, I know some of you reading this will offer me help (and thank you) but, honestly, I’m right. This bit is for me. If I don’t have a part of myself that is unfixable then how do I know that I ever went on this journey? Where’s my scar? It’s for me to figure out and then to fix, when I’m ready. And I absolutely will. I just can’t tell you when.

So if I come across a little unhinged from time to time, that is just me looking for the best way to manage my raw emotions. It’s temporary (I hope…) and once all the pieces have fallen back into place, I’ll be fine. We will be fine.

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Diary, Reflective, Thought of the Day

Who are you and what have you done with Lisa?

 

In conversations with myself, I have formed many analogies. The analogy of an analogy is a familiar scenario that perfectly describes the indescribable, nay, ludicrous scenario you actually find yourself in. It somehow normalises the whole thing, making you feel less insane and on a par with the world around you.

“You remember Terms of Endearment, that tearjerker film of the 80s, where Debra Winger lay dying with loved ones stifling sobs? Or Guardians of the Galaxy with a young Peter Quill refusing to watch his mother pass away? Well, we were there; seated uncertainly around Nigel’s hospital bed, sharing stories, all raw emotion and tears. Disbelief and hopelessness building up within, filling every internal void. Then, as if the universe needed to take a pee, the pause button was pressed. Whilst on ‘pause’ we seem to have entered a different dimension, where things appear normal. Where Nige is well, working in the garden and sawing up wood for a winter he may not see and, instead it’s the family cat that’s taken on his illness; lying on his deathbed, fighting for every breathe… But we can’t appreciate any of this or capitalise on Nigel’s good health because we are too busy listening for the flush of the toilet, for the universe to return and for the play button to be hit once more.”

c9a408e98943f6db7d3d5856b7922ed2--eckhart-tolle-dark-cloudWhen I say life appears to be normal I mean that Nigel appears to be well… from deathbed to flowerbed in just a few weeks. The steroids have made him emotional of course, and the tumour is still wreaking havoc with his memory and vocabulary but in comparison to the Nigel on pause, this one is fucking dandy. But as we navigate through this other world, we still seem to be stuck eternally in the real one, paused or not. The only difference is that the bed covers have changed from being thin, blue hospital blankets to a deluxe feather quilt, the view is no longer a square courtyard but wild birds and flowers blending into the woods at the back of our house and the visitors aren’t crammed around the bed but coming and going, with room to move around each other. Everything else is the same though; same tears waiting to spill forth, same emotions coursing through our bodies and the exact same illness trying to steal the life of a man beloved to us all.

“It is taking every fibre of my being to resist curling up in an embryonic pose in the centre of the bed, with the quilt heavy on top of me and not move forever. To open the post box, retrieve the mail and open it. To care even the tiniest bit about my appearance. But I’m winning, I think. At least, I am at the moment. You need to do the same Harry, ‘always forward, never back.'”

So while we await the inevitable in one world, we have the opportunity to create many 3064d43c36ca1fea6f21a94628603697--black-watercolor-tattoo-watercolor-paintingsmore memories in this one. We’ve been given a golden ticket to a world where we still have the husband and father we so adore, with added quirks and oddities. But there is a cost; Eccles. In essence we have swapped one deathbed for another and, though terribly sad, I’m okay with that. Eccles, our lone cat, has dodged many bullets in his 16 years and has led a life of unparalleled decadence. Anyway, in cat years he’s 76 and by anyones reckoning, that’s a far more palatable life expectancy than 54.

That’s your lot. For now anyway.

 

 

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Poetry, Reflective

My First Brush

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.

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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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