Diary, Uncategorized

PCV Chemotherapy Treatment

We knew that the tumour would return, of course, and we knew there was another treatment to try after the last lot. I guess that I thought the last lot of chemo would’ve been this lot – PCV – as it’s specifically for brain tumours. However, it seems we were to endure the first and second round of chemo before this more gruelling one of six cycles lasting 42 days.

So what is it?

  • P – Procarbazine (taken at home)
  • C – Lomustine or CCNU (taken on day one at home
  • V – Vincristine (given on day one through a cannula at the Chemotherapy Day Unit)

A week before our first cycle Nige had a blood test. This needs to be done before each of the six cycles to ensure that he’s okay to proceed. Then on the 24th July, at 2.15pm, he took his Ondansetron (anti sickness) pill. They tell you to take this between 30 and 60 minutes before the treatment although I never give it an hour before in case the appointments are running a bit late. Nigel’s appointment was at 3pm but we would’ve been fine until quarter past. The 24th was a mixed up kind of day. Firstly, it was Harrison’s 24th birthday – 24! I was so thankful his girlfriend was down for a few days and we did have some birthday giggles in the morning whilst Nige slept. But it seems that the tumour has really taken hold of him, causing his speech to slow down and even affecting his eyesight. Still, we made it to the RUH and Nige shuffled into the Oncology Unit where we waited just a short time before being called through to the Chemotherapy Day Unit. Our chemo nurse was Annie and she went to great lengths to explain what was going to happen. Apart from struggling to remember his name (slightly alarming) Nige coped brilliantly. The cannula was placed first time and after just 20 minutes or so we were all done. Annie brought over the bag of drugs that needed to go home – Procarbazine, Limustine, Ondansetron and Metoclopramide – and went through the dosage and timings with me:

  • Day 1 – Ondansetron (home), Vincristine (hospital), Ondansetron & 5 x Lomustine (home)
  • Day 2(all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
  • Day 3(all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
  • Day 4(home) 4 x Procarbazine (after food)
  • Day 5(home) 4 x Procarbazine (after food)
  • Day 6(home) 4 x Procarbazine (after food)
  • Day 7(home) 4 x Procarbazine (after food)
  • Day 8(home) 4 x Procarbazine (after food)
  • Day 9(home) 3 x Procarbazine (after food)
  • Day 10(home) 3 x Procarbazine (after food)

After which there’s 32 days rest before it all starts again.

In the hospital we were given a ‘Chemotherapy Diary’. It’s full of all Nigel’s medication and has two pages of symptoms to check for. If he’s experiencing any highlighted in yellow, I need to ring the Chemotherapy Helpline. The problem I have here is that many of the symptoms, I feel, are related to the tumour and not the chemo… It’s so tricky to judge. Let me explain.

When we returned from the hospital, where he was already a bit disorientated and had spoken slowly, he went to bed and wasn’t hungry at all. In fact I struggled to get him to take his medication as he was so sleepy! Tuesday, he ate breakfast in bed and got up just before lunch, when he ate a tuna mayonnaise salad sandwich. He managed a large dinner too, going to bed at about 10pm. Hmmm, things were looking up. Wednesday he awoke with a headache and refused breakfast but went on to eat a large lunch and dinner. He went to bed at 7.30 though. By the end of the week it was clear that the chemo induced tiredness had kicked in but that the appetite was still there. Nige was struggling to use cutlery though and I definitely need to rethink soup in bed.

By Tuesday, 1st August things were looking grim. Virtually no speech and some very crooked facial expressions, along with a complete collapse down the right side of Nigel’s body induced me to call 999. And not a moment too soon. We were admitted to hospital at 7.30pm and Nige was rushed through for a CT scan.

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Uncategorized

My Personal Advent. Ho, Ho, Ho!

Monday, 19th

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1992

I spent last night in Calne at my childhood home with my mum. I’m sure there must have been someone (anyone) else there but I have no recollection who. I can’t really remember my mum! Nige spent last night in our little flat above the chip shop in Batheaston alone. We set of to Bath in dad’s car and arrived at the Francis Hotel, where we met up with Nige and the Bath guests. I think the Nottingham lot (all 4 of them) were there too. My family came up with us. My enduring memory is of my beautiful brother, Ben, forgetting his suit trousers and having to wear a pair of Moleskin ones of my dad’s. The wedding took place in the registry office on Charlotte Street. A tape recording of something suitable played me down the ‘aisle’ and I caught a fit of the giggles as I echoed my vows. Somewhere amongst that Katharine, Nigel’s niece, dropped a bag of coins that her mum had given her to play with.

Ceremony over, we all adjourned to Queens Square for photos. I say photos, Mavis and her husband, John, had their little camera, as did a few others so they all got snapping away. Next: The George at Bathampton (Coincidence, eh?) for the reception. We were upstairs, in a quirky little room, level with the canal path. A lovely little buffet, with a wedding cake made by mum and coming in at a handsome £70, all in.

It was all truly wonderful and I would not have changed anything. The subsequent 23 years and 9 months have been bloody marvellous too. But the past 3 months? Well, they’ve been insightful, incredible, terrifying, emotional, heart-wrenching, life-affirming… crappy, shit… Still truly wonderful, even if I wish (oh I wish) I could change them, because when you find your soul mate you don’t let them go. You cherish them and nurture the relationship. You meet every obstacle with a ‘can do’ attitude and you fight. You fight.

Happy 24th anniversary, you beautiful man. Always and forever xxxxxxx

2016

The beginning of week 6, the final countdown. There was a real buzz in Oncology this morning. I’m putting it down to the spirit of Christmas, of course, although the fact we’re all on our last week may have something to do with it!

Home and a smashing cup of coffee. Then I booked us a table at Graze for an anniversary lunch. Gabe starts work at 12 so I made the booking for half past, dropped Gabe at the fountain and then went to find a parking space. Well, could I park? Oh my goodness, we drove around and around. Finally we ended up on the very top of Avon Street Car Park, queued to pay, rushed to get to Graze (15 minutes late) and sat down, out of breathe and knackered! We ate our splendid lunch and left in plenty of time to fetch the car and pick up Harry and Ali from the bus station. Unfortunately though, the sodding lift at the carpark was out of order. Poor Nige, so many steps, so little breathe… We got home and his nap-free run was at an end. Not surprising, I could’ve easily joined him!

Despite spending hours on a coach, Ali still went to work, bless her. Harry, Sam and Aaron are picking her up later as they’re all off to The Hope and Anchor. Gabe’s off out straight from work too so with that one trip to Medical Records, I’m done. Gin and tonic for me.

Oh, yoga! I have started. I’ve gone right back to the beginning though, with a basic 12 day programme. Day 1 done, BOOM! Proud? Yeah, you are… x

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Diary, Uncategorized

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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