I must begin by stating that I am mortified (to say the least) that I accidentally posted an unedited and photo-free version of this post at about 4am this morning. I immediately deleted both the post and the auto-Facebook post so thought (wrongly) that no one would see the sorry state of a blog post. Apparently, however, the email alert that was sent to those subscribing decided that this was the time to publish the whole post within the body of the email.
Moving on, I’ve had a broadly upward-curve kind of week (save for the premature posting blunder) with more good days than bad. On average, I’m definitely feeling less tired than I was towards the end of radiotherapy. This might be explained by all, none or a combination of the following:
- I’m not having to make a daily two-hour round trip for the radiotherapy appointments at prescribed times and can therefore rest as and when I need to.
- I am taking it very easy and lying down for much of each day as any activity (including sitting up in bed) makes me tired and can trigger seizures.
- I’ve been on a reduced dose of steroids (aka the Sleep Stealers) since last Wednesday. Although still inconsistent, I seem to have slept better in that, although I still wake regularly, I have had a couple of nights where separate sleep stints add up to about seven hours’ sleep. I am hoping that my sleeping problems might continue to wane as I wean off the steroids.
How Tiring it is to do Nothing and then Rest Afterwards
After a day or two of any “activity”, I revert to my natural* sleepyhead state. On these “extreme rest” days (a diametrically opposed version of extreme sports), I don’t just need to lie down and rest but to sleep. By “activity”, over the last week or so, this has included:
- sitting up briefly at the table to eat with the family a few times;
- one bath and one shower (although I assure you that I get fully washed every day!);
- Mr C pushing me in the wheelchair to Tesco for an evening date to buy bread and milk (the first time we’ve been out together after 6pm since before September): granted, it’s just a couple of hundred metres from the house but, still, it’s the new hospital cafe from a date perspective;
- sitting on the bench outside my parents’ front door watching my hubby, Pa Rent and the kids play on the trampoline, scooter and bikes/toddle bikes;
- reading books, drawing and role-playing with J, including a new game “restaurants” developed and named by the little lady, where she plays a very friendly and efficient waitress taking my order, bringing me food and clearing my table;
- reading books and “drawing” with Leo, both of which he loves, which is good as I am starting to be able to do non-physical things with him; and
- watching the kids play at the park here at Center Parcs (see below).
Although these activities often do not last much longer than 10 minutes, they are becoming much more frequent on my good days. Even when I’m lying down, there are times when I just need to rest rather than sleep so the kids can (and do) pop in and out of the Ice Hotel at pretty much any time, which is lovely.
It is particularly wonderful to sit outside watching the kids play, hearing them laugh and me being “part” of things by cheering, laughing along, chatting, waving and taking photos. Precious moments.
So-called FAKE Droids Avoid Voiding Vacation!
Last week we booked to come to Center Parcs (CP) in Cumbria this week. We thought that we (all six of us) might take the opportunity to get away halfway between the end of the radiotherapy and the start of chemotherapy. We figured that, if I could manage the journey over to Cumbria, I am just as well resting in an icy cave in a forest with activities on hand for the kids as resting in an icy cave at the rents’ house!
I had a good few days on Thursday, Friday and Saturday, which gave me some confidence that I would be able to make it over without even a mini-drama. Then I had a super tired day on Sunday that included a lot of sleep and three seizures (two Inbetweeizures and a Doozie, although thankfully the latter was just over half the time that some of them have lasted).
We thought perhaps that our CP adventure might not be on the cards after all, or would at least need to be postponed by a day. That was not the droid we were looking for.
However, resting and sleeping throughout most of Sunday, together with an early night, brought A New Hope on Monday morning that we might make it after all. As we couldn’t check-in until 2pm at the earliest, it meant that I could make a last-minute decision after lunch. As it so happens, last-minute is my speciality so this is what I would prefer to do in any event, Squatter or no-Squatter! So we decided to go for it and here we are.
This is the droid we were looking for!
Here is a photo of me and the Rents in front of our cabin:
One of the benefits of coming to Cumbria is that there are a few people here whose services we have relied on in the past from Rent-a-Friend! Coincidentally, for this week only, this includes a very special guest from Spain. We have a few of these visitors lined up this week, with the first three stopping by at about 5pm on Monday. Unfortunately, because we inadvertently hadn’t registered their names with security in advance, upon arrival they were told that they couldn’t come into the grounds!
Ms Weasley said that she racked her brain and wondered “what would Rachel do?”. She decided (correctly as it happens) that I would play the “brain tumour” card. Cue a (truthful) plea that this was the only time that they could come this week to see a friend staying at CP who has a brain tumour. The plea succeeded much to their relief and my delight that I got to see them. Good milking for a special purpose: I’m proud of you, Ms W!
The Hostess with the Mostess
Jennifer has been excited about her “little holiday” since we told her about it in the middle of last week. Graham drove over with the kids while I travelled over with my folks about an hour later (this timing accommodated a post-lunch snack for me).
When we arrived, Jennifer squealed with excitement and was eager to show me (and each of my folks in turn) around. The Dairy Milker (for whom J has a particular affection ever since Ms W crawled all around the Rents’ house pretending to be a pony with J on her back, “riding” over tiles, carpet and wooden flooring, ouch!) was afforded the same guided tour.
The lodge is perfect for us with three en suite bedrooms, including one downstairs that has been transformed into my Cumbrian Ice Castle. There is, however, a therma-room sauna upstairs that Graham can either sleep in, or pop in periodically to warm up!
Yesterday morning, Graham first took the kids out to explore our surroundings and then later took Jennifer swimming. They came back with a shiny red mobility scooter that he had hired for me for the rest of the week so I have some hot wheels. It’s limited to 10mph, which is perhaps just as well as I don’t currently have a driving licence and am liable to have seizures if I get too excited! Watch out fellow CP-ers!
I had been resting for the morning and then after lunch felt relatively energetic. So, mid-afternoon we all went out to a play area for the kids, had a quick stop by the sandy “beach” area by the lake (J does like to be beside the seaside) and then returned back to the cabin.
It was lovely to get some fresh air and be with the family in a way that wasn’t too tiring for me or for them (with not having a big lump to push around in my manual wheelchair). I had a Meizure a couple of hours or so after we got back and then a tiny Seizling a couple of hours after that, but they were well worth the outdoor time with the family.
Quotes of the Week (So Far)
While we are at Center Parcs, Jennifer and Leo are sharing a room. The first night, Leo was up several times before midnight with a wonderful combination of teething pain, wind and being cream-crackered.
During one of several crying interludes, Jennifer sleepily said to Graham: “I love Leo but he is a screamy bag”. (Have I mentioned how loud Leo is when he wants to be? Foghorn doesn’t do him justice!)
Yesterday morning, Jennifer told my Mam that she’d “had a terrible night with Leo”.
Leo’s quotes of the week are the same as usual: “in there” (while pointing to where he wants, nay, demands, to go); “dada”, “mama”, “dandad” (Grandad), “da” (that), “doose” (juice) and “bye”.