Diary

Our Christmas Tale

Wednesday, 13th December

In between some of the most vivid dreams and super sleep, I was helping Nige to the loo most of the night. He’s deteriorating I think though I’m not sure what the answer is. It feels very like last time, in July, but his speech isn’t as bad. Back then it was a swelling over the tumour and once the steroids kicked in, there was a massive improvement. So what, do I increase the steroids? The very medication that’s left his thigh muscles so ineffective? The permanent exhaustion is absolutely a symptom of the spreading of the tumour – there’s nothing I can do about that. Hmm. Anyway, on with the day.

Our Nick came round this morning. Not too early as I didn’t wake up until almost 11! I made him a coffee and we chatted about Nige, mum, Christmas and all that. I left him taping and filling in the garage and went off to find an oil filled radiator. I tried Homebase but realised that Screwfix was just opposite and had better deals. One radiator bought, back in the van, home, assemble said radiator… notice huge dent in the bottom, re-pack, back in the van, back to Screwfix, successfully exchanged and home. Some things are just easier than others and in stark contrast to be life right now, the radiator saga was as easy as pie.

I rushed upstairs to Nige – he was snoring away. I decided to hoover the front room and tidy up, in case Nige came down. He didn’t. Actually, it’s now 11.25pm and he’s been in bed since 11.10pm yesterday… This is a first (since July). Another first is me having to feed him. And tomorrow I’m going to have to master the art of giving a bed-bath.

So with a huge sorrow, heavy heart and wet cheeks I’m ending the day. I’m going to pour myself something alcoholic and give myself some sage advice… Tomorrow’s a new day. I’m fine, honestly, I’m just how you’d expect me to be, right? Cheers.

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Diary

Our Christmas Tale

Tuesday, 12th December

Hmm, the morning was pretty much like yesterday only a little messier. Nige’s balance isn’t great at all and I couldn’t get him to the loo quick enough… No drama though, just a clean up. Thankfully he’d eaten his breakfast and taken his meds before so he could just snuggle down into a clean bed and fall asleep.

Later in the morning, the District Nurse from yesterday returned. She was a little concerned about Nigel’s blood sugar levels and wanted to do it again. I took her upstairs, Nige barely stirred as she pricked the end of his finger, took a drop of blood and tested it: a far better reading this time, apparently. I took the opportunity of Nigel’s sleepiness and both the boys presence, to nip into town. I needed to return a DVD to Amazon and I had a brainwave for a gift for the aforementioned boys. I wasn’t long, probably less than an hour. There’s a small cloud of guilt that follows me everywhere when I’m out of the house. It’s soul purpose is to remind me where I should be but it’s Christmas in 2 weeks and shit needs doing! Silly little cloud.

By the time I got home, Nige was ready for lunch. Harry and I tried to help him down the stairs. In the end, he did it on his bottom! Not the most gracious, I know, but certainly the safest way to descend the stairs. He stayed downstairs until bedtime, at about 11.Life feels normal when Nige is on the sofa beside me, we’re like Phil and Holly! I mean, for most of the day he was asleep but at least we could all connect. Gabe worked tonight, so it was just the three of us: Walking Dead time! It was the mid-season finale too (which Nige reminded me of) so there was tension galore. In the middle of all that, Marianne popped in on her way home from her work Christmas do. I love it when people pop in, it’s confirmation that not only are they thinking of you but that you’re worth the effort of parking up and walking up to the front door. And with 22 steps up to ours, that’s quite a commitment! Whilst Harry and Nige watched The Walking Dead, Marianne and I stood in the bathroom (I stood in the bath), admiring my beautiful Christmas mirror she gave me.

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Diary

Our Christmas Tale

Monday, 11th December

Oh well, that was a better start to the day! Cat fed at 7, back to bed and not awake again until 8, with Nige. Super. I brought up his porridge and tablets (with added Co-Codamol) and then left him to sleep a bit more. I grabbed a sneaky extra lie-in downstairs too. Harry woke me up when he came downstairs. My first Christmas present arrived in the post and then, at about 11, Gabe helped Nige downstairs!

“Hey, you! Do you fancy some toast?”

“I think so.”

So he sat on the sofa, ate his marmalade on toast and drank a mug of chai. He looked better; happier. Second lot of meds and another sleep. On the sofa.

When the District Nurse arrived Nige was still asleep. We woke him enough to do his blood sugar level and then let him doze back off. She asked if we needed anything. I mentioned something to help him walk. Not to the bathroom because a frame wouldn’t fit through all the different doorways, but definitely in the kitchen. I think it’d help him feel part us all while we’re in there. So me then, as no one else cooks! While she was here, Nick the Electrician turned up. I pretty much left him to it – he knows what’s what. He wasn’t here long anyway. In barely an hour the garage was all electrified! Wow, now that’s been a long coming… Ann, from Dorothy House, dropped by too. Nige was still asleep so she didn’t stop for long, just checked the TEP form and asked after us all. Nige awoke a little after she left and I took that opportunity to nip out.

Gabe drove to the Assembly Rooms for his piano lesson and I went on to Lidl’s. I don’t know what I thought I’d find there, all I bought was a couple of Himalayan Salt cellars. On my way home I called into Homebase and Sainsbury’s for kindling and alcohol, respectively. It’s so cold, bitter in fact, I couldn’t wait to get back home. Nige was still awake though a bit shaky on his feet. He shuffles, which means he stumbles a lot and because he has a distended stomach, his balance is thrown off. But by tea time he was steadier.

I cooked a roast dinner and we all sat at the table to eat. Harry and Gabe made pudding by heating up steamed puddings and microwaving custard. To be fair, it looked bloody lovely! Nige certainly enjoyed it. The rest of the evening was spent watching TV together. So much nicer than last night, he even cuddled me as we watched. This here is what memories are made of.

Snuggle up to your loved ones. Never let them go. Always let them know they’re loved. It’s really not hard.

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Diary

Our Christmas Tale

Sunday, 10th December

Oh dear me, today didn’t start brilliantly. Nige needed the loo at something like 5am but he couldn’t successfully get out of bed. Once I’d helped him to achieve his ablutions and snuggled myself back into bed, the cat began to holler… Up I got, down I went to scoop him up to put him in the shower room,

“You are way too early Eccles.”

“Purrr…”

“Yes, I know you’re beautiful and gorgeous and cold and you think it’s morning but no. 6am is too, TOO early!”

Just 5 minutes later, Nige wakes,

“I need to get up.”

“No, not yet love. It’s only 6…”

“Is it? I want my breakfast…”

“I’ll do it in an hour. Is that okay?”

“But I want to get it out of the way.”

Aarrgh, the frustration! I had to get up, before he stumbled out of bed and hurt himself. I decided to feed Eccles, feed Nige, do his meds and crawl back into bed myself – good plan and it worked.

The rest of the day was much the same as that. Nige sat downstairs for a while, ate a simple lunch and dozed off on the sofa. We had a few trips to the shower room loo but whilst Gabe was having a shower, we had to go upstairs. Harry had to help as Nige was already exhausted and we hadn’t even gone up the stairs. He decided not to come back down, choosing the bed over the sofa. Bless him, he is extraordinarily shattered. The doctor and Ann from Dorothy House warned me just how overwhelming the exhaustion can be. It’s brought on by the progression of the tumour. I guess it’s logical – the bigger it gets, the tireder you get until you stop. The end.

So this afternoon I’ve been up and down the stairs in between watching films. I forgot to do a roast dinner – well, I forgot Gabe had work at 6 and needed to eat by 5 and so, at half 4, he cooked himself something beige. I made a Cottage Pie for about 7pm. Washing up done, Gabe at work, Harry out, Nige in bed. I’m alone.

How can I do this? I don’t want to be alone… I’m no good on my own.

 

 

 

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Diary

Our Christmas Tale

Saturday, 9th December

Wow, I think I actually had the best nights sleep in about 5 months. Even Eccles meowing at 6.40am didn’t phase me; I just plucked him up and put him in the shower room. Nige awoke an hour later, wanting breakfast and was happy to have it in bed. Basically this morning was the same as all the others, I’m just trying to describe it differently… After Nige had eaten and the cat had eaten, I took up my usual place on the sofa, under the Snug Bug and had my lie-in.

Two things woke me up; first it was the Amazon delivery man. I didn’t open the parcel – too tired. Then, an hour later, Nick the Electrician turned up. So exciting! He did the final fix in the garage and then came up for the outside light. Which, coincidentally, was what my Amazon delivery was. Whilst he was out in the bitter cold, with his assistant, Beth, I was watching Blackadder’s Christmas Carol and gently sorting the house out. Next up: Scrooged – oh how I love Bill Murray!

We saw the lovely Lois today. She braved the arctic conditions of Winsley and drove down the hill to us, on the other hill… It’s been a while since she last came and I’ve been a little worried about her but she looked really well and sounded even better. Nige managed to get out of bed just before she left too which was wonderful – Lois always makes Nige smile!

With the majority of the electrics done (just waiting for the final connection on Monday) I proceeded with sorting out the under-stairs cupboard. I was just getting into the swing of it all when Marianne turned up. Ooo, tea break! We had a good natter and I showed her the bathroom, which she liked, of course. She asked if I wanted a mirror for it,

“Oh yes please!”

The only one I could think of was a rather sweet French looking one I’d seen in her spare room a week or so back. She couldn’t possibly mean that one, right? She did! How charming and wonderful she is. I gave her a lift home and came back with my reflective Christmas gift.

After taking Gabe driving into town, finishing the under-stairs cupboard, hallway, utility room and sorting out dinner I hung my new mirror. It’s heavy so I used three heavy duty hook things. It looks perfect! This evening was just Nige, Harry and myself again so we watched another 2 episodes of The Punisher and I had a few glasses of red. What a busy day! What a busy, satisfying day…

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Diary

Our Christmas Tale

Friday, 8th December

I tried to grab a lie-in today but Eccles (yep, him again!) meowed his way around the house until I surfaced. Nige opted to stay in bed again so I took breakfast to him. Then I fed Eccles, and thought I’d catch some extra zzs. But no. I clearly hadn’t mashed his food up small enough for,

“MEOWMEOWMEOWWW!!”

I managed to fall asleep on the sofa after that… Until about half 10!

Harry woke me up and made a cup of tea. I mentioned to him last night about him driving me to school so I could hand in my sick note – he was ready. Whilst I was upstairs, getting ready, Harry received some welcome news. Nothing of any concern to anyone else but, man, being able to shed that particularly worry put a tiny smile on both our faces and visibly lightened the load of life.

We had a great drive to Roundhill Primary, where I showed Harry the mural Nige and I painted together and the library. I can’t believe how much the school’s changed since his time there; carpets, colour, library,

“It feels like school now and not a hospital!”

We saw Gem, had a hug and shared our news, then left for home. Aside from one dodgy moment involving a lane change, the drive was perfect.

At home Nige was still in bed. I made him lunch which he ate half of, with his eyes closed, more asleep than awake. I tucked him up and set out again with Harry to do the food shopping. Nothing exciting about that, I’m afraid. Oh, we did buy Eccles a Santa outfit but when I dressed him up in it, he literally stepped out of it in disgust! Wait until it gets colder – he’ll be begging to wear it then…

Nige got up in time for dinner – pie and chips. He looked much better for all that sleep so it must help. We spent a pleasant evening with Harry watching TV on the sofa, eating Pringles and sweets, drinking gin. You can decide who consumed what. Gabe went out (that was his driving practice for the day) so a sleepless night beckons!

 

 

 

 

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Diary

Our Christmas Tale

Thursday, 7th December

Well, I seem to have cracked the ‘keeping Nige in bed’ thing. He was asleep when I got up. I had time to sort myself out and then heard a quiet voice calling me from the landing. It took me a while to hear him at all but I did get the gist, he wanted his breakfast brought upstairs. Yes! I think this was due to me being off today so it would appear that he likes to be up each morning to see me out of the door. Like he always has done.

I dozed off for a while on the sofa, whilst waiting for Nick or the doctor – whoever could get here first. Gabe got up (driving lesson) and made me a coffee. He started to make me a coffee… He put the kettle on anyway! At lunchtime, of course, Nige woke up. As I helped him downstairs, the doctor arrived – she couldn’t have timed it better actually. We discussed how he was feeling.

“Are you in pain Nigel?’

“No, not really.”

“Do you feel lonely?”

His eyes filled,

“I think so.

So aside from depression (which I suspected), she also diagnosed oral thrush. Apparently it’s a side-effect of steroids. Both mean more tablets… But that’s the side-effect of needing medication! Life is a series of battles and, in the main, we win. It’s the war we’ve lost; right now it’s all about honour. As I walked the doctor out, we briefly mentioned the TEP (Treatment Escalation Plan). I told her to use her common sense, we’d all been through this before, at the hospital, on his death-bed (the first time) and for that reason, our primary objective is for Nige to be at home, with us, until the end. Or for as long as possible. She also signed me off until the end of term. I’m a bit gutted about that, to be honest. I was so proud of myself and really felt accomplished; it all feels a little futile now. The other side of me is massively relieved. It’s upsetting enough to be caring for the light of your life as his brain becomes lost but to see him weep because he’s lonely is simply heartbreaking. Home is where I’m needed, by his side is where I want to be.

Nick came today, to finish off the plaster-boarding. We didn’t get to chat much as first I was with the doctor and then Gabe wanted to go out for a drive. Luckily I had things I needed to do so the drive wasn’t just for the sake of it. I had him driving through town, to Gay Street, around Queen’s Square, back up Gay Street (we couldn’t park). I managed to guide him into a small space near Charlotte Street whilst I popped over to Darcy’s Newsagents to post my parcel. From there, we negotiated lights and junctions before finally finding somewhere to park at Pulteney Practice, so I could pick up Nigel’s prescription, TEP and my sick note. By the time we got home, Nick had finished and Nige was looking a little more like his usual self.

Another emotional day in the Lee household but at least we broke the Groundhog Day!

 

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