Diary

Well, Come On Then…

All was quiet on New Years day because both boys (one in, one out) were nursing hangovers and Nige was sleeping off his nocturnal activities. Whilst we awaited Gabriel’s ‘walk of shame’ home, Harry and I launched ourselves at the Lego! I tackled the Hogwarts Express, the reason I wanted it down from the loft in the first place, and Harry embarked on a far more complicated space thingy from Star Wars… Somewhere in between cursing and silent celebrating (only Lego users will understand this) I produced a New Year dinner. Sure, we had to sit on the sofa and eat off our laps but we’re adults so we endured it like heroes. Dinner ate, pots done, back to Lego.

2nd (Tuesday) Given how rough Sunday night was, I was surprised at how much better Nige was last night. Still, the District Nurse has referred me to the Hospice at Home team at Dorothy House because, I think, of my refusal to allow Nige to go into Dorothy House for respite care. I’ve said on here before that my time with him is limited already, I’m not interested in limiting it even more. Anyway, I conceded to having a carer stay in the house over night to help Nige, thus enabling me to sleep, especially as I feel a bit of a cold coming on… The idea of catheterisation came up again. Oh I don’t know. It’s so undignified, isn’t it, having a bag strapped to your leg and a pipe up your whatsit… But then so is having your 5 foot nothing wife unceremoniously hurl you onto the commode and back, or, worse, pissing the bed. None of this is dignified in the conventional sense anymore. So it has to come down to safety – Nigel’s and mine…

3rd (Wednesday) Another alright night and my cold seems to have come to nothing. Hospice at Home rang,

“Hello, is that Lisa? You’ve been referred to us by Sally and we have you down for tonight!”

“Oh wow, really? I’m not sure how it all works but…”

“Well, Jenny will come round at 10 and stay until 7 in the morning.”

I wasn’t sure what the set up would be – would she sit in the bedroom with us, or am I expected to sleep somewhere else?? All these doubts almost made me say, “Thanks, but no thanks.” but I didn’t! I thought, ‘Give it a go, work with it!’

Just before 10 Jenny arrived. We had a chat and I introduced her to Nige and Gabe. She asked me how ‘it’ had all started and I told her. It was rather lovely to talk to a stranger who knew as much as, if not more than, me about this shitty brain tumour stuff. And not the medical bit either; I’ve had my fill of that. I used her time here to sort out the kitchen, clean the sink etc and went up to bed at my usual 12, half past. There I stayed until about 5.30am, when I gave Nige his Oremorph. Then, again, at about 6 when he needed to pee.

“Oh I wonder if Jenny can help with that…”

And up the stairs she came, like a Fairy Godmother. But then I learnt that they’re not allowed to lift. Well, that’s sort of the thing I need most help with… and if I’d slept elsewhere would she have woken me up? Hmmm, I was a bit baffled though I did understand her position. I was grateful for her support anyway – every little helps, right?

4th (Thursday) Mum and dad came this morning. They actually woke me up from my mid-morning nap on the sofa. We had a lovely morning, chatted more than usual and they went in to see Nige, which was great. After they’d left, Amanda and Rachel (Nurses) turned up. They were full on, trying to sort out carers, medications… me. They’d also brought with them a catheter but I wasn’t ready.

“But it will make your life so much easier Lisa.”

“I get that, I do, but the only time he leaves the bed is to pee. I don’t want to take that away yet…”

“Oh bless you, you’re still thinking of him first!”

We talked about the safety issues with me moving him so often and I was left with an awful lot to think about,

“Let me chat to Harry and Gabe, see how they feel.”

After they’d bathed Nige they checked the ‘Just In Case’ box. Marianne and Jane had arrived by then – such a busy day! We hadn’t seen Jane for a while so it was extra special when she went upstairs to see Nige. We chatted over tea, the three of us, whilst Nige slept; they both stayed for a good couple of hours. The rest of the day was pretty chilled, but that’s what having company does, it sets you up to deal with everything else.

5th (Friday) We had another uninterrupted night, waking up at 7. I gave Nige a dose of Oremorph before going downstairs to sort out his breakfast and meds. I happily and methodically moved from one little job to another, even transferring Nige back to bed from the commode with uncharacteristic grace. Halfway through the morning Hospice at Home rang,

“Hello Lisa. Your down to have a night carer again tonight… Is that something you still want?”

“Oh, hi! Um, actually he’s been really settled the last couple of nights so I’ll give it a miss if that’s okay.”

“That’s lovely Lisa. We’ll ring you again next week.”

The shower bits arrived today so I waited for them in the studio. Whilst down there, Anna (my favourite District Nurse) turned up. She helped me with my delivery actually as we nattered on about this and that. We were awaiting some meds so she arranged to bring them later, with Sally. I had wanted to do the food shopping – not for the shopping bit but just to get out – but Gabe didn’t get home until later so I’ll have to do that tomorrow. I did win the table on eBay though and so a quick trip to pick it up from Corsham at about half 7 got me out. Then an impromptu (always the best) visit from Michelle just as I got back gave me the perfect excuse for a glass of wine.

So, a busy day then, with lots happening to distract and engage me. And Sally and Anna returned with the meds we need. Nige was catheterised too.

 

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Diary

Well, Come On Then…

That bit between Christmas and New Year is a funny old time. It’s just 6 days but it feels longer some how – it always has. I think it’s because you go ‘off grid’; you have no clue what day it is, just a vague idea of the date. Now we have a myriad of ways to watch TV, you can’t even rely on your planned Radio Times viewing to get your bearings! So it is, I will fill you in on our ‘Bit Between New Year Tale.’ It won’t be chronologically correct, I’m sure, but you don’t know that. Well, you didn’t know that; you do now…

Boxing Day (Tuesday) I like Boxing Day. The dust has settled and the silence is blissful – aside from the actual date, it’s got a much more ‘new year, new beginning’ feel to it. Marianne visited for a coffee – hazelnut latte – and a chat. We compared Christmas Days; not much between them to be fair as Mike was ill in bed all day too! Anyway, I mentioned New Year and she might pop round. I’m dreading being on my own, for I’m sure the boys will be at some party somewhere, and I’m pretty sure Nige’ll be asleep cometh the hour.

27th (Wednesday) Well, the vinyl floor for the studio turned up today. I had to check my phone to check the date, nope, it’s not the 2nd of January… No matter, I was chuffed to bits. Despite having had 2 glasses of wine, I threw myself into laying the floor. Hmm, surprisingly easy actually. Needs a trim but I’m sure Nick will do that when he comes over to do the skirting.

28th (Thursday) Lovely to see Nick today. He came in to fit the skirting board in the studio. What a difference it made! I filled the holes in this evening and will need to paint it at some point. That’s if I can stop Gabe filling the room first…

29th (Friday) I had a lovely, unexpected visit from Sue today. She came laden with wine and gifts and open arms. I wept on her shoulder, as I filled her in on what’s been going on here. She stayed for quite a while talking about her Christmas with her poorly aunt, work and life in general. I consider myself incredibly fortunate to have a boss who is so understanding and genuinely concerned for my welfare. It makes this enforced leave of absence of mine so much easier to deal with. Man, I miss work.

This afternoon I dismantled the huge oak table, ready to go down to the studio. I eventually got Gabe to help and between us and Harry we managed to get it down and put back together. Gabe’s unsure about the size but I think it looks great. Anyway, it was always meant to go down there so that’s where it’s staying!

This evening Michelle popped in for a glass or two. Her Paul had fallen asleep so, as we both had sleeping husbands, she decided to call round. It’s lovely when people call round unexpectedly, so much better than when it’s planned. It’s like finding a fiver in your jacket pocket.

30th (Saturday) Matt and Gem came round this morning, primarily to help me order the stuff for the shower room, but it’s always lovely to see them both. We had a lovely chat in between sorting out Nige and helping the nurse with his bed bath – nice to share my day with others really. After they’d gone I set about ordering all I needed for a rather splendid shower room. That’s another job done. Gabe carried on moving his music stuff down to the studio. It’s looking wonderful.

This evening we had an unsettling exchange with Nige. None of us really knew what was behind it but I’m guessing it was borne from frustration, boredom and fear. It started, I think, because I was a little less graceful than usual getting him on the commode. This was due to my fragile back that just can’t hover, waiting for him to be ready anymore. I may have muttered an obscenity too, just to help with the motivation. Anyway, Nige felt like he was too much trouble for us,

“Why don’t you just fucking get on with your shower [life]” 

and more of the same… We all felt that this was it. That this was Nigel’s exit cry. As I held his hand (once successfully calming him down and getting him back into bed) he said,

“You need to keep in touch.”

“I will. Of course I will.”

I’ll not elaborate – it’s not an easy night to recollect honestly. The upshot though was a confused Harry and an upset Gabe. Me, well, I get it: he’s isolated, lonely and scared. I feel the same way.

New Years Eve (Sunday) Food shop! Normally I loathe this but today I nailed it. I think the sense of freedom helped. That and the need for food in the house to survive. I was home by 3. Harry was giving Nige a dose of Oremorph having already, along with Gabe, helped him to the loo. I’m so incredibly proud of them both, our little soldiers.

Neither of the boys had plans for this evening – we don’t make plans anymore. In fact, I was the first one to have the evening planned with a scheduled visit from the Twilight Nurses (!) and Marianne. We’d anticipated my loneliness on this over-hyped night and she thoughtfully offered to keep me company. Besides, Mike was poorly too so there was little point both of us sat twiddling our thumbs in different houses! Then Harry formed a planned that involved me as a driver… I took him over to Southdown at about 8, the very time Marianne was arriving at mine. Gabe played host until I returned and stayed in until about 10, half past. Then he too disappeared into the night of revelry. As Maz and I drank our Babyshams, picked at pistachios and nattered on, Nige was audible over the monitor. Only once or twice did I have to go up to help him to the loo. Maz left just before midnight, so she could see New Year in with her man – and rightly so.

I went to bed just after midnight so this should be labelled New Years Day (Monday). There. Nige woke for the loo at 2am. I lifted him, he sat, did nothing, I lifted him back. 2.30am he sat himself up. I asked if he needed the loo,

“No, I’m fine. I’m fine.”

“But you’re sat up lovely. What do you want?”

“Nothing. I’m fine…”

“Do you need a wee?”

“No. I’m. FINE!”

“Do you have a headache?”

“I think so.”

So I gave him a dose of Oremorph and went to lie him back down to sleep. He then pee’d all over me, soaking the mattress and sheet at the same time. By and large I kept my cool,

“Oh for God’s sake Nige! When I ask you if you need to wee and you do, please say ‘yes’. You know I am happy to help you…”

“I know, I know. I hear what you’re saying.”

“I don’t think you do Nige. I think you think you can do this alone but honestly, to keep us both safe you need to listen and accept my help. Do you understand that?”

“Yes.”

I cleaned up as much as I could: First I put him back on the loo (commode), so I could lift the mattress up to get the counterpane off the bed. Next the carpet, followed by a towel over the wet bit of the bed (no clean sheet as it was in the tumble drier). I then, somewhat grumpily, lifted Nige back into bed, cleaned him up and settled back down. 3.30am I awoke to Nige saying,

“I need my tap.”

I asked if he wanted the loo (of course) and he repeated that he wanted his tap and then asked,

“What do I mean; tap?”

“I don’t know… Do you want a wee maybe?”

“Yes.”

Up again, lift him to the loo,

“What are you doing?”

“You said you wanted the loo!”

“Nooo! That’s not right…”

“Well, to be fair you said that last time and then pee’d on me so… if you don’t mind…”

“For fucks sake!”

He sat there for a while,

“Have you finished?”

“Yeah.”

I lifted him back, sat him on the bed. There was nothing in the commode. And then, you guessed it, he pee’d all over me again!

“You said you’d been Nige!” Deep breathe, “Never mind… Come on.” Big hug.

I was up a few more times after that but they were pretty uneventful, aside from adding to my already singing lower back… At 7 I got up, fed the cat and tried to stay downstairs. Nige was still quite unsettled though so I curled up in the tiny space remaining in bed and went back to sleep.

You see, I told you New Year was always shit.

 

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Diary

Our Christmas Tale

Christmas Day

Just like any other day, remember that… Nige awoke at 3 again, with a headache and the need to wee. Both these things are in my remit to sort out – easy stuff. Unless, of course, he decides, whilst I’m preparing his Co-Codamol, to try and get into bed.

“Oh Nigel, what have I told you? Please wait for me to help you, it just makes it so much harder…”

It does. He’s half on, half off the bed but the angle is such that I can’t easily move him to where he needs to be. Add to that the exhaustion he’s feeling, having exerted himself, solo, leaving him with no energy to help me in any way! I’m nothing, if not tenacious though, so by 10 past 3 it’s mission accomplished.

Just after 7 and it’s time for breakfast, meds and another dose of Co-Codamol. He’s really not eating much – I’ll mention it to Sally later. I was downstairs by half past, listening to him snoozing over the monitor and watching Maigret with a very potent espresso.

***

I had to wake the boys up at about half 10. Gabe made it downstairs first, found his meagre stocking and put the kettle on for tea. I went back upstairs to give Harry another gentle nudge: tea did it! And a bacon sandwich. This day has been long anticipated, I think, and we have all inwardly felt it needed to be gentle and non-Christmassy. I mean we have never done the whole paper hats, karaoke and party blowers, we’re more your unfussy Christmas dinner, old vinyl on the record player and board games type of family but even that, even that felt just too celebratory whilst Nige lay upstairs, oblivious to the day.

Mum and dad got here at about 3, perfect as dinner was ready to be served up. It all seemed to go well. If I’m honest, I struggled with the normality they brought to the house – the very reason I invited them! But, yeah, it left me feeling conflicted. Thankfully the boys were fabulous, chatting openly, listening, entertaining; masking my own awkwardness… A few times a took myself up to sit with Nige and not just because I thought he needed the company.

After mum and dad left, it was just us three again with our wonderful man, in our bizarre life that has become scarily normal. It’s like those hideous slippers that are likely to kill you as you negotiate the stairs but are just too bloody comfortable to get rid of. And no one else understands why you’re alright with them…

Next is New Year. I really fucking hate New Year.

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Diary

Our Christmas Tale

Sunday, 24th December

3.20 loo stop this morning. I was, surprisingly, quite with it though my legs didn’t know and so I stumbled about for a bit before I made it to Nigel’s side. I emptied the commode and saw Gabe’s door still open (my way of knowing when he’s home) which alarmed me slightly as he said he wasn’t going to be late… I was about to text him when I heard him walk across the landing and close his door. There. He must’ve been downstairs. I climbed back into bed, content with all. After that, I’m not sure how long we slept, I was definitely up before 8 though. Breakfast was a repeat of yesterday with an added,

“You’re forcing me to eat!”

Damn right: no food, no steroids; no steroids, no voice: no voice, no anything. We can all ‘be’ Nige’s legs but, with the best will in the world, we cannot be his voice.

I briefly napped before waking up Gabe. He wanted to go over to Lois’ and drop off her presents but had to wrap them first. Oh man, honestly, how can he be so bad at wrapping presents?! I was having palpitations at his sheer lack of ability! Well, I had to help… just to avoid a heart attack. He drove over to Winsley, stayed for just 5 or 10 minutes and then we headed back. Nige was okay – Harry just had to do him some Co-Codamol – but other than that, fine. At about half 12 the two lovely nurses turned up again. They were a lot quicker bathing Nige this time and he was a little less anxious. I busied myself with the washing as, at this rate, Nige won’t have any clean underwear by New Year!

Nick and Shelley got here at about 1. It’s always so lovely to see them both. I see Nick quite a bit but Shell’s usually working or shattered so we don’t get to catch up often. She’s one of life’s carers, you know? It’s in her bones to care deeply about people, in the same way it isn’t in mine. She’s a genuinely, thoughtful bean, that one. Coffee in hand, there was no hesitation in her going upstairs to see Nige, and, though she must have been a little taken aback (most who know him are) she really didn’t let it show; carrying on chatting away to him, making him smile. Making me smile. What a perfect way to wile away a couple of hours; with these two lovelies.

The rest of my Christmas Eve was full of tidying and sorting. It’s not quite there but it’ll do. It’s all a bit half-arsed really, I mean I’m not sure I see the point if I can’t properly share the day with the person who, for the past 28 Christmases, has shared the planning, the excitement and the joy of Christmas with me. It’s not normal, is it, for the boys and I to be sitting eating our Christmas dinner whilst Nige sleeps upstairs on his own? These are just a fraction of the ramblings of sadness that are doing a grand job of invading my ‘joy to the World’ cortex but the words aren’t forming any coherent sentences so I’ll spare you!

Merry Christmas then. Remember, it’s got nothing to do with presents but everything to do with the present 

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Diary

Our Christmas Tale

Saturday, 23rd December

Oh my goodness, I was physically exhausted this morning. Nige woke me at 3.15am for a pee. It went rather smoothly actually, due, in part, to my ‘I’m bloody well getting you upright mister’ attitude. Honestly, I have no idea where that inner strength came from… I was hanging, eyes barely open and every bone in my body ached. We woke again at about 7, I think. I recall trying to convince Nige that he wasn’t ready for breakfast and trying to catch an extra half hour under the quilt.

“You’re hungry, aren’t you? I’ll get your breakfast.”

Crunchy Nut Cornflakes today – much more successful than porridge, I think. Aside from my aches and pains, this morning went well actually. It certainly ranks as one of the better ones over the past week. By half 7 I was sound asleep under the Snug Bug on the sofa, cat curled up on my feet, the sound of Nige gently breathing over the monitor.

At about 12 – half past – the two district nurses arrived. Nige was half asleep but able to say hello. I managed to find all they needed and then left them to bath him in peace. I even turned off the monitor! When I went up to see how they were getting on they were finishing, tidying things away.

“He’s had enough of us now!”

He had too, absolutely shattered he was. As I gave him a quick trio of kisses he smelt clean and fresh. Mmm, it’d been a while since he last washed and that must have horrified him. He slept easily until half 2. I helped him to the commode and whilst he did his stuff, I put the back rest up. We’d not had much success with this bloody thing so I determined to get it right! We managed, Nige and I, to get his bottom in the right place and I placed his legs up onto the bed in front of him: perfect! He dozed like that and I went downstairs and rustled him up a one egg omelette and a dose of Co-Codamol. I fed him about half,

“I don’t mind so much if you don’t eat dinner now you’ve eaten that!”

I picked Gabe up from Victoria Park at half 3, after I bought some more logs. I bought a LED Weeping Willow Tree too, for the back garden. It was originally £100, reduced to £80. I’d been umming and ahhing about buying it for a couple of days and today thought,

“Bugger it! I’ll buy it from the van fund…”

At the till the logs came to a tenner and the tree – wait for it – was £25! I left the shop sharpish, grinning from ear to ear. As Nige slept upstair, I assembled my incredible bargain and carried it up to the gravelled patio outside our bedroom window. I went up to our room and plugged it in – stunning. I tried to show Nige, I think he smiled. He did smile. Anyway, I smiled so that’s halfway there.

At dinner time we realised, the boys and I, that we actually have little food in the house. So off I go again! I told you I’m shit at food shopping. Nige would never have allowed us to run out of food just one day into the Christmas break! Exhausted, I ended the day in a hot bath with Radox Muscle Soak and a Opihr Gin with Ginger Ale. Not a bad way to end a Saturday.

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Diary

Our Christmas Tale

Friday, 22nd December

5am and Nige is moaning in pain. It doesn’t matter how many mornings start this way, I still find it distressing. I managed to get him onto the commode but his limbs are super-unresponsive at that time of the morning so I really am doing all the lifting. After 5 minutes or so he was done and I (somehow) got him back into bed. He hadn’t been to the toilet which meant I’d have to do that all again… and I did, at 6am! Time enough for me to tuck myself back under the quilt. At 7 Nige woke up again.

“It’s going to be dreadful! I need my thing.”

“What thing love? Breakfast?”

“No. My thing…”

“Do you need the loo?”

“Yes.”

So I went to his side of the bed and pulled back the quilt,

“What are doing?”

“Well, you said you wanted the loo!”

“No! Not that, my – oh I don’t know.”

I laughed it off and got back into bed.

“What are you doing now?”

“Oh my God Nige! What do you want, breakfast?”

“Yes!”

Grrrr….

Lots of visitors today, with helpful stuff, practical stuff and thoughtful stuff. I sobbed my way through the kindness, slightly overwhelmed. First up was Karen, the Occupational Therapist from Dorothy House. She brought a bed bar, slide sheets and a handling belt and showed Harry and I how to use them. As we went upstairs, Harry was guiding his dad to the toilet. Whilst he was in there, Karen fitted the bed bar. Then Sally, the District Nurse turned up. Poor Nige, quite an audience gathering. But it was great; both saw first hand the trouble we have moving him so they had a far better idea of our needs. After showing us the rest of the equipment we went downstairs. They offered me respite, not Nige going into Dorothy House but they’s send a carer to sit with him anytime, whilst I get a break. I have a District Nurse coming in to bathe Nige a couple of times a week – yes please! They were so helpful and supportive, I truly felt overwhelmed by their kindness.

Later in the day, as I was lifting my gorgeous man for the umpteenth time, Brent, from up the road called in. Gabe answered the door. I heard him thank Brent and when I came downstairs there was a bottle of Cava on the table. Such a lovely thought and, again, I felt so humble to think that Nige and I are in his thoughts.

The postman delivered a happy little surprise too! A gift addressed to ‘The Lee Family’. An old work mate of Nige’s, Phil, had sent it to us. One for Nige to open on Christmas day, I think. I gave a a little something to Michelle too – the Santa outfit we bought for Eccles. It doesn’t fit him and her daughter is getting a small sausage dog so it’ll be perfect. I dropped it round and stopped for a quick glass of festive red. More tears. Oh dear.

Both boys worked tonight. Nige wouldn’t eat a dinner so I did his tablets and helped him onto the commode. It was a struggle, my back is starting to smart a bit. As I was about to go downstairs to finish my dinner, he said,

“You don’t talk to me. It’s like you can’t be bothered…”

Wow. Such powerful words.

“It’s not that I can’t be bothered lovely, it’s that I’m tired. Let me eat me dinner and I’ll come back up.”

And I did, and it was lovely. I’d got so caught up with the illness, I started to forget the man. Of course he’s lonely. So am I! Oh the irony xxx

PS He opened his gift from Phil. We’ll definitely be watching that over the next day or so x

 

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Our Christmas Tale

Thursday, 21st December

Up at 5.20 so, as Gabe helped yesterday, I woke Harry up. Just the normal toilet run and back to bed. This time I got back in too and grabbed another hours sleep. Eccles decided he needed feeding roughly 10 minutes before Nige decided the same. So up I got at half 6 to sort out my fellas. For Eccles, a rather unappetising Gourmet Fishy Pate for the senior feline and for Nige, a glass of dissolved Co-Codamol, 3 Dexamethasone, 1 huge Kepra, an Omeprazole and a bowl of porridge. Guess which one he moaned about?

“It’s too thick!”

“Well, it was lovely when I bought it up, love. But it’s taken you a while to sit up so…”

I never have been able to take criticism.

Once Harry was up I set out to buy a baby monitor. It was quite clear yesterday that Nige gets extremely anxious when he thinks no one is about. He’s very quiet, can’t get himself out of bed safely and, above all, feels vulnerable. So I decided a baby monitor would be the ideal solution. Whilst I braved the Bath traffic (4 days before Christmas), Harry waited for the anticipated delivery of the commode, not that I knew when or if it was coming today but, well, better to be prepared I thought. I called into Tesco on my way back too – that’ll save me a trip out later. As I parked up outside the house, there was a Sirona Care van in my space. Yay, commode!

I set up the monitors and Harry bought up the commode. I explained it all to Nige,

“You don’t need to do anything lovely, I can hear you from wherever I am. So you don’t need to shout anyone.”

It was quite soon after that that he needed the loo. Gabe was with me.

“Okay Nige, we’re going to use the commode.”

Gabe helped me lift him out of bed, but he was quite distressed,

“No, please, please not there. Take me to the toilet… Please…”

Reluctantly, and a little annoyed, I acquiesced. Once he was safely on the loo though, I explained things again, clearer I hope,

“Nige, this isn’t happening again okay? It’s not safe for us to keep doing this – that’s why we have the commode. This way takes at least 2 of us, I can’t move from your side in case you fall off and the door has to be open. The commode has arms to keep you safe, it’s right by the bed and I can get you on it on my own. I can’t keep lifting you Nige, I’m going to damage my back! So, next time we’ll give it a go okay?”

Harry suggested wheeling him back to the bedroom on the commode, genius as Nige needed another wee ‘en route’ so had to use it. Success. In fact the next time he needed the loo he said,

“So I go on here do I?”

With the monitor allowing me to be where I need to be quickly and the commode allowing Nige to be where he needs quickly, our day dramatically improved. Many more toilet breaks, successful and safe. Bliss. And Nige was much more relaxed too.

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