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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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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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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Diary

My Personal Advent. Ho, Ho, Ho!

Tuesday, 20th

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Despite it being a later appointment, it was a bloody early start. 6am to be precise… Not even Eccles had uttered a word. Because we weren’t in until 10.18, the Temozolomide needed taking at 9, so Nige wanted breakfast at 7, or just before. Otherwise he’d have to wait until 11, hence my early, rude awakening. I kept the cat happy with Dreamies and Nige happy with a couple of Weetabix, then back to bed until 9.

It was strange being in Oncology at that time. The only familiar face we saw was Rose’s husband and he was on his way out. We got in dead on time and also topped up on Dexamethasone, Paracetamol and eye drops at the pharmacy. We went straight to town afterwards, to sort out bank accounts and stuff. Without going into details, it was; park on Walcot Street 🙂 , Waitrose Cafe 😦 , TSB :/ , Nationwide 😐 , HSBC 🙂 , TSB 🙂 , Lush 🙂 , Clarks 🙂 and then home 🙂 . I find the Emojis a far quicker way of conveying the success or failure of our errands.

We were only really home for a couple of hours – not long at all. Then it was my 10 minute yoga whatsit and off to take Ali to work. Nige came with us as we did the – wait for it – Christmas food shopping on our way home… Oh my goodness. I’ve avoided it for years you know. Of all the chores I’ve taken on, this one has to be the worse. The only positive thing was that, due to Nige’s diligent stamp saving and coupon collecting, our £171 bill actually cost us £50 something! Not too shabby eh?

Nick rang this evening. He’s hoping to come round sometime this week to drop off his presents. I love nattering to him, so straight forward and uncomplicated. We also had a small parcel from Norah, Nigel’s mum. At first I thought it was a collection of cards from his family – hoped it was at any rate. No, it was all from Norah; a card for us with some cash in it, vouchers for the boys and a calendar. Very sweet, I’m sure, but I did wish his sisters had bothered… Sending meaningless sentiments on Facebook messenger does not a sister make…

‘Oh, I fear I’m unravelling…’ So for the sake of you all, I’m off to bed.

NB ‘What about the reading?’ I hear you ask. Well, two chapters read last night. Yes indeedy, perhaps there’s hope for me yet!

 

 

 

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My Personal Advent. Ho, Ho, Ho!

Friday, 16th

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Well, would you look at that, we’re at the end of week 5 already! It’s been quite a positive one too, what with my Book Group meal on Monday, Nige’s benefit getting sorted, his pension claim moving forward, the worry of Brent being passed back to, well, Brent and a meal out tonight with a couple of true friends of his. Phew, that was a mouthful. See, I said it’d been a good week.

Radiotherapy at 8.48am, as usual. We got in and out early, as usual, and had the blood test done. As usual. The wives in the waiting room asked about our trip to Bristol yesterday. That led to them asking the age of our kids. When I told them they’re 21 and 23 they went a bit quiet.

‘You don’t look old enough to have kids that old!’

‘Well, I am…’

‘I would’ve put you at your mid to late twenties…’

‘Wow, no, I’m 47! Thanks though.’

Nice right? Although I don’t know what they must think of Nige, married to a twenty-something… Lucky bastard I expect!

Home for coffee and breakfast. Then I had an email to say our package had arrived at Debenhams. So after lunch Nige and I strolled into town to pick it up. We didn’t loiter for long, knowing that we had to walk back we thought we’d save our legs! A good job too as it was most definitely an arduous hike. Nige did equally as well as me – my fitness levels are appalling – and he’s still nap-free.

The afternoon was spent doing very little; Nige is compiling a quiz for Christmas so he was busy with that. I caught up on a bit of sleep and did the laundry before taking Ali to work. I started getting ready for our DCActiv night out at about 5pm – well, we don’t get out much!

We got to Opa at about 7.45pm, so not late really. Everyone was already there, milling around the bar area, chatting and drinking. Initially slightly overwhelmed, Nige managed conversation brilliantly and Rob helped by immediately greeting us. Actually, they were all extremely good and by the time we sat down to eat, we both felt relaxed. I kept half an ear on Nige’s conversation with Matt, just to make sure he wasn’t getting flustered – he was fine. Which enabled me to natter on with Breda, Paul’s wife. We ended the evening with heartfelt wishes and assurances from both Rob and Paul, along with a hug each! All quite emotional, but then I do tear up at the drop of a hat these days.

Nige went straight to bed when we got home, I made myself a Black Russian and followed him up.

 

 

 

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My Personal Advent. Ho, Ho, Ho!

Thursday, 15th

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Aha, Eccles, curled up on the bottom of our bed… Much nicer than putting him out in the bathroom to keep him quiet! I fed him at 7am and returned to bed, for half an hour. Temozolomide at 7.30, then off to Oncology for our 24th treatment. The drive was made sweeter as, before we left, I had an email to say Nige’s EMA had been processed – it’s been paid in! I can’t tell you the relief, knowing that I won’t have to phone the Job Centre again. It’s all thanks to Karen Gough from Macmillan you know, she’s brilliant. All in all, we’ve had some pretty positive stuff happen this week, it’s about time, don’t you think? Before we left the hospital, Nige got some eye drops. His left eye (the side they zap) is continually dry and really irritating him. We tried Optrex but to no avail. Let’s hope this works.

After breakfast and coffee, we set off to Bristol. The saga of Gabriel’s jacket continues: Originally £175 (!), reduced to £88 on the Thursday before Black Friday, only to go up to £125 on Black Friday (grrrr…). Nige, convinced it would go back down, wanted to wait, wait, wait… Oh look, back up to £175! Then yesterday, online, it was back down to £125… Debenhams, you’re playing games with me and I’m not happy! Hence the trip to Bristol. But what do you know? Not a single ‘small’ in stock or online. So I checked, whilst Nige ate a Christmas Turkey Roll.

‘There it is! And they have his size… Ordered. Pick it up from the Bath branch tomorrow.’

We had a lovely day, mooching around the Christmas Market. It was actually quite odd to be in Bristol having not been to a hospital first. But there you go, things move forward, whether you want them to or not.

Quite a lot of driving today, besides the trip to Bristol and back. Oh, and oncology this morning of course.

  • 4:10pm   Take Ali to work (It took 40 minutes to get home – hideous traffic)
  • 5:45pm   Take Gabe down to the fountain
  • 7:10pm   Pick Ali up from work (I left a bit late so was a bit grumpy :/ )
  • 9:50pm   Pick Harry up from work (Got caught in rugby traffic 😦 )
  • 12:15am  Pick Gabe up from the fountain

Phew! Still, it’s time alone in the car, to sing loudly and voice my inner most thoughts to no one in particular… And it punctuates my day so there’s that.

 

 

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