Diary

Dear, well, you know who you are…

9

On my walk, on the morning of July the 10th, I spoke to Michelle of my fears for today. I reasoned with her as we trudged along the muddy track along the top of Pussell’s Wood that whatever the result, the only thing that will change is the amount of knowledge we hold. I concluded that I was expecting anything from, ‘You have a week to live…’ to ‘Oh my goodness, you’re a bleeding miracle!’ Though obviously I was hoping for something a little nearer to the latter.

A busy morning with the start of construction of the steps in the back garden and the continuation of the floor preparation in the garage. Then, of course, it was Nigel’s oncology appointment to discuss the MRI findings. Oh, I was not looking forward to this.

Parked quickly and easily, arrived promptly and had bloods taken swiftly. All good so far. Then, at just five minutes after our appointed time, we were summoned. Professor Beresford asked after Nige’s wellbeing,

“I’ve been alright overall. I’m getting these strange nervous attacks which have got more often since the MRI thing but other than that… Actually I do have a headache at the minute.”

Nodding, smiling and with four monitors staring at us from his desk, he replied,

“The headaches do corroborate what’s here on the scan I’m afraid…”

My tummy didn’t lurch like that initial diagnosis back in September, but just fell away a bit. My mouth went dry though. Nige just nodded and said,

“I thought so. Well, I thought something was going on.”

When we visited Dr Barua in Southmead (all of us, en masse), we collectively refused to look at the scan results. Instead, each of us choosing to have a different visual manifestation of the tumour that had, uninvited, attached itself to Nigel’s brain. No such luxury this time with the monitors seemingly encompassing the entire room. Eagerly, Prof Beresford sought to explain the scan. He compared it to the one taken just after the operation last October where we could see just a black chasm. The recent one however had a little extra something next to the same hole. The tumour apparently, back for it’s encore. Odd, I never saw it as a white, fluffy cloud. And where were the teeth? It would appear, and I’m paraphrasing a bit here, that the radiotherapy and chemotherapy thus far has proved fucking useless and the bastard tumour is back. The complete cunt.

*

What next, I hear you cry?

Well, something called PCV chemotherapy. We have a handout offering us a full explanation but the gist is:

There are six courses, each course takes 42 days (6 weeks) and consists of:

A blood test, followed by a trip to the Chemotherapy Day Unit for treatment. This is delivered via a drip, through a cannula. Then we start a 10 day course of procarbazine capsules. Thirty two days off before we begin again. It’s gruelling and a bit of a knock back but, hey, I think we both thought this was what we were getting with the last lot of chemo!

On our return home from this ‘punch in the stomach’ meeting, we were met by Nick, who was levelling the garage floor. I think he could tell by my face that things hadn’t gone to plan.

“It can take years some time to find the right treatment for these things Liz. Hang in there, I mean, so that didn’t work but this might!”

He’s right of course. We always knew that we were facing a full-scale war but we became complacent in the face of his improved health. With everyone commenting on how well Nige looked and how well he’d done, we forgot (briefly) that the problem was still there. As I said earlier, nothing changed except the amount of knowledge we now had. And that’s power.

Whenever Nige went upstairs I cried. Whenever I left the room, I cried. At 8 o’clock I took myself down to the van to apply my long awaited stickers. For a while I stopped crying and started planning. Not anything major, just where the gold stars and the silver stars needed to go…

As I reflected on the day I realised what was bothering me most. It wasn’t the return of the tumour – we half expected that. It wasn’t the thought of 6 months of gruelling chemotherapy – I can support Nige ten-fold with that. It wasn’t even the thought of having to rethink my job situation. No, it was seeing that bloody scan, putting a face to the name (finally) was surprisingly hard. It meant that whenever Nige gets a headache, for all eternity, I’ll see that fucking white cloud buggering up our life. With it’s metaphorical teeth.

 

 

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Diary

Dear, well you know who you are,

5

We’ve just celebrated Nigel’s 54th birthday. The boys really pushed the boat out on this one, knowing that I had to keep my budget low I shouldn’t wonder. Mum opted for a cash gift which will buy an expansion set for one of our favourite boardgames, Tokaido, in the near future. My gift arrived looking like someone had bled all over the packaging – a lot. We all decided it must be red paint and quickly moved on! So what have we been up to since Christmas Eve then?

Christmas was wonderful. Lots of games played, food shared and fun had. New Year was a tricky one – it is every year. Gabe went out but Harry and Ali stayed in. We raised a metaphorical glass at the top of the garden (even Nige managed the hike up there) and watched the numerous fireworks from Bathford to Odd Down. In the dark no one can see you cry, which I did, onto my sleeve. It’s all very well saying farewell to a shit year but when the one you’re welcoming in has such uncertainty attached to it, well, there’s no joy in that. Not one bit.

 

January 2017

We started the year with optimism. A trip to the cinema to watch Rogue One was a definite boost for Nige, who had an upset stomach and was anxious whether he’d get through it without running to the loo. He did but he was slightly overwhelmed at the digitally reproduced Princess Leia that appeared at the end of the film… Carrie Fisher’s death affected him hugely at the end of 2016.

A week after that we met the very delightful Verena. She’s the masseur I mentioned in My Person Advent. A friend of mine had so kindly bought Nige and I a Holistic Massage each. We had to wait at least a fortnight after the last Chemotherapy session (Christmas Day) as those particular toxins need to stay in Nigel’s system and the massage would expel them. It’s fair to say that on meeting Verena I loved her immediately. A genuinely kind soul who just wanted to give a couple she had never met before some much needed respite, a sort of warm, fuzzy hug with essential oils. As Nige waited in the room next door, I gently poured my heart out to her. Not entirely, I think; I automatically hold back but more than I had to anyone else. The massage was wonderful. Silent tears whilst having all the taut muscles in my back, arms and legs manipulated was extremely cathartic. After an hour we swapped. I smiled as I could hear Nige nattering on throughout his hour.

‘All my male clients do that. Well, apart from my boyfriend…’

Before we left, Verena had booked us in for another the following week – no charge. She even offered to visit us to massage Nigel’s legs when they become cramped. You see, Angels do exist but they’re not ethereal, they’re people, they’re in all of us.

On the 25th we started the 6 month Chemotherapy treatment. We were surprised to realise that it would be oral again. I had assumed we’d be coming in everyday for 5 days of the month to receive it through a drip or something. This was quite a nice revelation though. So 400mg for the next 5 days. Nige still has an upset stomach, loose bowels mainly, no vomit. I do too, I hasten to add but as I’m not doing Chemo, I’m coping marginally better with it!

 

February, 2017

Well, what a shitty month – literally. We can get through this one in just one paragraph I think. Nige continues to feel poorly – I’m putting it down to the Norovirus which is absolutely rife at the moment. Even Harry complained of a stomach ache. However, his turned out to be Appendicitis… I took him into hospital on a Saturday, at 2pm. He was having an Appendectomy by 6pm. In between I went back home to see how Nige was doing. He’d been sick a couple of times and hadn’t really eaten anything. Back at the hospital for when Harry came out of recovery at about 10pm. My little soldier, putting on such a brave face. The surgery had gone really well, but his appendix was a mess – gangrenous in fact. The infection had started moving around to his back and if we’d left it any longer we would’ve been dealing with peritonitis, which is a whole different ball game…  At least there’s a bit of luck on our side. By Monday he was back home, along with Ali. Happy days. Amongst all this was our next trip to Oncology and our next dose of Chemo. We asked about Nigel’s fatigue and stomach bug.

‘The fatigue and breathlessness is a side effect of the radiotherapy.’

‘But we finished that in December!’

‘It can take 3 months for the side effects to be felt so it’s perfectly normal for you to feel this way. With the bug you need to drink plenty and rest…’

I am continually reminding Nige of that last quote…

 

 

There, we’re up to speed. Well, almost. I’ll give you March another day. It’s already been up and down so be sure to tune in!

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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

My Personal Advent. Ho, Ho, Ho!

Saturday, 24th

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So Christmas Eve then, and we’re up at 6.30, Harry, Ali and I, staggered to the car in the cold and dark to get her to the bus station before 7.30. I’ll miss her you know, but if it were Harry in Sutton, I’d want him home for Christmas day too. I was back in bed by 8 and stayed there until gone 10. Nick rang (which woke me up) to say he was popping over with pressies. Enough time for a quick rush around…

Nick limped into the house, his sciatica’s playing up again. Apart from that though, he looked really well. I made coffee and Irish Barmbrack and we nattered on about 2016; the pros and cons. More cons to be fair. The news last night about Carrie Fisher’s heart attack upset Nige somewhat so the update this morning, telling us she was stable was a huge relief. We’ll have to keep our fingers crossed a little longer, I fear. World put to rights, Nick set off home with presents, hugs and my deepest love and respect for everything he’s done for us this year. He has been a 2016 pro.

I had to pop out to Morrisons again, can you believe it? Brandy butter was calling, along with stir-fry, muffins and a few other bits. I took the opportunity to nip into town too and buy an extra gift for Nige, Harry and Gabe to share… I left it in the boot of the car though, as I definitely could not get it into the house unseen. As we started to settle for the afternoon, I mentioned getting the turkey out of the freezer. Nige said,

‘I don’t remember putting it in the freezer!’

‘I’m sure you did… It’s not in the fridge…’

‘Perhaps it’s in one of the bags in the boot of the car… I’ll check!’

‘NO!! I mean it’s not in there… I’ve been through the bags in the boot…’

We came to the conclusion that the girl on the till put it in a carrier bag but we didn’t notice and so left it there… Great. I deflected another search of the boot by Nige, this time for the receipt, as we set off back to Morrisons to resolve the turkey issue. The girl on the Customers Service desk was brilliant. No quibble, she found out that we had, indeed, left our turkey on the till and told us to go and fetch a replacement, free of charge. Wonderful, what an excellent pair of turkey rustlers we turned out to be!

After dinner I took Gabe over to Winsley, to drop off and pick up presents to Lois. We sat in there for a while, chatting to Stew and Lo and then raced home for Nigel’s games night. We played Saboteur (Harry won), Timeline (Gabe won) and Twelve Days (Harry again). I think we’ll stick to turkeys…

Not an uneventful Christmas eve then, on parr with the last few months I suppose, events wise at least. So what will tomorrow bring? Well, I’m predicting presents, smiles, laughter, tears and love. Bucket loads of love because at the beginning, the middle and the end, it’s all that matters.

Happy Christmas to you all. Thank you for reading, for caring enough to read and for sharing the love that is bountiful within us all. 2017 looks like it’ll be a right bastard from where I am but I bet I can find the love there too… xxxx

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Diary

My Personal Advent. Ho, Ho, Ho!

Friday, 23rd

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Our final trip to Oncology and Nigel’s final radiotherapy session… Well that was the fastest 6 weeks ever! A later appointment meant we had a half hour lie in although Eccles tried his damnedest to put pay to that. He was so good yesterday, curling up and napping at the bottom of our bed. Not today though, it was the shower room for him! Temozolomide taken at 8am, up and dressed, paperwork sorted and out of the door before 9 in the hope that, as usual, an early arrival means an early finish. We were right too, we were done by 9.30. Well, we would have been. I’d given Nige two questions to ask the team;

‘We have an extra dose of Temozolomide (due to a missed dose), should we tag it on the end?’

‘Despite a recent prescription of Dexamethasone, we still only have enough to get us to the 9th of January. Is that right?’

I also brought in the blood form, not realising that it didn’t need doing again until two days before our January appointment. Anyway, it all worked out for the best. The doctor said ‘No’ to tagging the extra chemo dose onto the end and we were given more Dexamethasone with instructions to wean Nige back down to 2mg. They wanted to do a blood test to check his sugar levels but instead (as I had the form on me) they just ticked the relevant box and it can be done along with the rest in January. We just had a bit of a wait for the prescription. I saw Helen in the main waiting room. I used to work with her in Moorlands and we’ve always been quite close. Initially I didn’t know what to say – ‘How are you?’ always seems a bit pointed, given where we were… so I opted with a hearty, ‘Hello!’ She was surprised and happy to see me,

‘It’s so lovely to see you! Why are you here? Is it you?’ 

‘No, it’s Nige,’ pause,  ‘He has brain cancer… How about you?’

‘Oh I have Lymphoma Leukemia. I’ve had it for a few years and have to get regular check ups. Will Nige survive?’

‘Well, we haven’t been told a death date and, well, he’s pretty positive… But it’s stage 4, aggressive, so…’ Tears again.

‘There’s a chap on the canal who was diagnosed with the same thing, stage 4, and he decided not to give in. Started his own canal boat company and is still with us…’

Hope springs eternal, right? A smile, a nod and I’m bouncing out of the room with Nigel and his many meds.

Instead of going straight home, we called into Morrisons. Vegetables to buy as well as a few other bits and bobs. We started with a coffee and a croissant, not quite the celebration Nige deserved but it was passable. You know, Nige and I are compatible in everything except food shopping. Where I grab, push, pay and go, Nige loves to peruse, purchase, pack and ponder. There’s so much joy on his face as he checks the list and he positively frowns when I purposely ‘go off list’ like a naughty child! I’m amazed he’s never slapped me, to be honest!

As we had the shopping to do, I cancelled my coffee morning with Marianne and the girls at Velo Lounge. Rather splendidly, Marianne came to me later. We exchanged Christmas presents and nattered over tea and coffee. She’s having two Christmases, like us as Adam and Jon are all over the place. We didn’t have long as it turned out as I had to take Ali to work for 3pm. I did know, but I’d forgot… She finished at 5 too.

A chilled out evening then, in our (now) tidy house. There’s a few good things on telly, we are all full up from our perfect fry-up, courtesy of Nige and Eccles is silent, nose up his bum, fast asleep! Aha, what an incredibly uplifting 6 weeks. It’s been tiring, emotional and, at times, a little worrying but we got there, along with all the other wonderful couples we met along the way. Now we can kick back our heels, pour a drink and settle into Christmas.

 

 

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Diary

My Personal Advent. Ho, Ho, Ho!

Thursday, 22nd

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Let’s be clear, I write my advent at the end of the day and today I’ve ended it with a bottle of blackberry vodka. So I sit here now with Alan Partridge bopping away to Roachford and Eccles casting me reproachful glances. Everyone else is in bed.

A far more sedate beginning to the day; Eccles was asleep at the bottom of the bed, happy until 7, which is a reasonable time for his breakfast! Nige took his Temozolomide at half past and we left for Oncology at 10 past 8. All pretty standard. He really is counting down the hours now – last appointment tomorrow. He asked (again) about what happens next. I’m not sure what they say correlates with what he tells me, though I do know we have an appointment to discuss chemotherapy on 25th of January. Nigel’s confusion is that he thought we’d be starting chemotherapy on the 25th, not talking about it. We checked his medications; even with the prescription the other day, we only have enough steroids to take us to January the 9th. I can’t help but think they’re trying to tell us something… I’m also thinking blackberry vodka isn’t my friend…

Today we tackled the bathrooms – Nigel downstairs, me up. Although mine was the grubbiest, Nige did have the shower to do. He also managed to break the toilet cistern… Cue unnecessary anger! Bless him, it could’ve been anyone. Anyway, after an hour sat, calming down he fixed it, easy as pie. The rest of the house is okay really, a bit of tidying up is all it needs and that can be done tomorrow, after his final radiotherapy session.

It was Harry’s last shift before Christmas this evening. Although given that he’s in next Wednesday, that’s no real news I guess. But with Gabe now done too, it means I’ve only got Ali going to work tomorrow and then I’m done driving for a bit. Wonderful. Once he was home, I opened the aforementioned blackberry vodka, homemade by my mum.

‘This is better than last year’s! Not too strong either…’

Well, yes, it is and actually, it’s stronger than I thought too. So I’m signing off, with emotions piqued and hot flushes abound. G’night you lovely lot, until tomorrow.

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Diary

My Personal Advent. Ho, Ho, Ho!

Wednesday, 21st

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Eccles; 6.30. Me; 7 and Nige; 7.30… It’s a pattern of a sort I suppose. Radiotherapy was at 8.48, which is what we’ve been used to and now the schools have finished for Christmas, the traffic is much lighter. Unusually we had to wait for twenty minutes. Apparently LA3 had gone down earlier and was only just back up and running. There was a back log, obviously, to clear, which meant more people in the waiting room. Despite all that and knowing the reason we’re all there, the atmosphere was still as positive as ever. Seriously, there are those on my Facebook page who’d learn a lot by a visit or two to Oncology!

We were home a little later then, but in plenty of time for me to get ready for my coffee with Gem at The Holburne Museum. It was lovely to see her; sat by a purple sculpture of a brain (of course) with a green tea and a smile. I bought a hot chocolate and we exchanged gifts. I had a couple of extra ones, which was truly lovely, from Sue (my head teacher) and from Jayne (my Cedar cohort). All very festive, thank you guys! So Gem and I nattered on about Nige, me, work, life. We laughed, we cried – well Gem cried more than me – and then we wandered around the gift shop. It all felt very normal, although Gem doesn’t usually cry until a couple of bottles of wine have been sunk… We parted with a hug and each others best wishes. Perfect.

As soon as I got home I decided to put up some outdoor lights over the front window. They’re the lanterns from the courtyard and I’d been toying with this for a few days. It took less than half an hour and they look beautiful. I’m so pleased, we were beginning to look a bit lack-lustre up against numbers 5 and 6! Although number 4 still looks like a hovel, with a little pile of black ‘dog poo’ bags next to the dustbin. Yeah, it baffles me too… At some point I fell asleep on the sofa, oh hang on, that would have been about 5.30 because Pointless was on and Nige dozed off next to me for 10 minutes or so. I yawned through a phone call from mum afterwards – that’ll teach me. It was obviously ‘mums night’ as Norah rang Nige too. I love watching his face as he listens, or tries to listen, to what she’s saying. Tonight I listened as he told her exactly how he was feeling, how anxious he felt about what was to happen to him next. Obviously I couldn’t hear her response but the fact that after just a minute or so he asked,

‘What, Gareth? Oh… right…’

told me that the conversation had predictably moved onto Gareth or Millie or Lawrence or ANYONE. Sadly, Nige just accepts this state of affairs, pulling a bored face at me as he tries to process all the unnecessary information she’s giving him. I want to grab the phone and tell her to,

‘Shut up and listen to him!’

After all, she rang him, right? I think I may have to have a chat with her first next time she rings, try to politely explain that her son really needs for her to focus on him when she calls and to make sure she keeps sentences short and relevant.

Everyone finished at different times tonight; Ali at 7.30, Gabe at 9 and Harry at 10. Well, that was the plan. I messaged Gabe at 9 and he replied,

‘I’ll be out at half past :)’

So I headed to the fountain at 20 to 10. I sat and waited and waited, time was ticking by and Harry needed fetching at 10. At 5 to 10 I set off to Morrison’s, keeping an eye out for Gabe en route. Harry was out on time and he tried to ring Gabe – no answer. I retraced the route back to the fountain and there he was, flapping about in the middle of the road! That quirky lad. He’d rung my phone (which I’d left at home) and Nige told him I’d probably gone on to get Harry. What a palaver, eh! Still, all came good in the end and the joy of seeing my new outside lights on our return was, sadly, quite exciting!

 

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