I’ve been struggling to write a blog post this week. It’s not because there’s nothing much going on and, thankfully, there have been no mishaps or dramas. It’s because I’ve been pre-occupied with writing (in my head) a post about issues that have made me angry whenever I have (rarely) thought about them for most of this year. They bubbled up on Sunday. I did the modern-day equivalent of what Abraham Lincoln did: he wrote letters to people to express his anger and/or disappointment and then threw them away without sending them. I am glad that I decided not to publish a post in haste only to repent at leisure.
Back to our regular programming of updates about my health, happenings and the Hobbit House.
The last week or so for me has been a mixture of activity (in the loosest possible sense of the word) and rest. As well as sleeping/resting for a couple of hours each morning after breakfast, I need a super sleepy rest day once every two or three days. Late morning to mid-afternoon is when I usually hit my “peak” so that’s the best time to come and visit!
High Water Mark
We had a relatively quiet day last Thursday apart from an exciting trip to the Curtain Superstore to pick up our new living room curtains and buy curtain poles (more on the house later). The kids’ Fairy Godmother came over on Friday, who never fails to bring joy to all of us. It was a grey drizzly day but we decided to go to Gibside anyway in the afternoon during a dry spell (with waterproofs in tow). The weather held and it was mild (for an Autumnal day!) throughout our visit. It started to drizzle just as we were walking/wheeling back to the cars. It was a wonderfully timed hour and a half full of fun.
I borrowed a National Trust mobility scooter again and we made our way to the “Seaside Park” as Jennifer calls it. As well as the usual activities, there is a sand and water area, including an Archimedes Screw – not just your average sand pit! There were so few visitors at Gibside given the weather that we had the playground to ourselves for the majority of our visit. Towards the end, a little girl came along with her grandparents but they didn’t cause us any trouble (and I hope that they would say the same about us)!
On busy days, during holidays and weekends, the playground’s castle has lots of much older children playing on it. Jennifer is not confident about playing on the castle when older kids are running around and often pushing past her so she relished the opportunity of playing to her heart’s content. Leo would have the confidence to play with older kids around but we won’t let him. If he can trip over fresh air on flat ground (as he often does), there’s no way we would let him climb and walk along an open walkway high off the ground! He too enjoyed the freedom that a desolate park afforded him, supervised closely by his Fairy Godmother!
Saturday brought sunshine both literally and in the form of a university friend and her family. We spent a lovely afternoon sitting in the garden chatting and watching our kids bounce on the trampoline and play on the slide. Happy days. Those three “busy” days left me needing a rest on Sunday so I took it easy and slept frequently throughout the day.
On Monday, Jennifer had her pre-school sports afternoon and I really wanted to make it, figuring that it was worth at least a couple of seizures to see my girl compete in her second sports day. I felt good enough to have a shower and go along with all carers in tow. Thankfully, the weather was sunny and the grass was dry so Graham was able to push me the long way to the sports field and around the field for the different events. If it had been remotely muddy, the wheelchair I have wouldn’t have been up to it; we would have needed one of the off-road ones that I borrow from the National Trust!
Everyone’s [Not] a Winner, Baby, That’s the Truth!
Last year, in the sprint, some parents/grandparents were standing on the finish line and shouting so aggressively that when Jennifer got to within 5 metres or so, she looked up, saw them, started crying and stopped running. One parent/grandparent demanded of a little boy “why didn’t you run faster?”. This year, it was a much more relaxed afternoon in the sun, with the parents and grandparents in Jennifer’s cohort all cheering on all of the kids. I have always been competitive myself but, contrary to the expectations of my parents and Graham (to name but a few!), I don’t project it on to my kids but instead feel protective of them. I’m conscious that I don’t want them to feel pressured, particularly at this young age, that if they don’t win that they have failed.
That said, I don’t believe that a competitive spirit is, in itself, a bad thing, nor that “taking part is what counts and everyone’s a winner” type sports days are necessarily good for older kids. That’s not the way life works, whether in school, sports, exams, interviews and jobs! Anyway, that’s all to come. I like to think that we will always tell Jennifer and Leo that, as long as they do their best and enjoy it, then we’ll be proud of them. We don’t say that winning doesn’t matter as it’s a joyful thing to be celebrated to be good at something but it’s not the be-all and end-all.
So we had a fun hour and a half watching her and her friends and chatting to other parents. One of the teaching assistants put Jennifer in the nearest lane to me in the egg and spoon race so that “Mammy can see you better”, which was really thoughtful.
I thought that attending her sports day would be worth a couple of seizures as payback for the effort in attending. The good news is that it resulted in just one fit on Monday evening. The bad news is that it was a long one (around 3 minutes), I was constantly seizing throughout that time and it’s the first time since 1 May that I’ve had a seizure reach above my thigh. Back then, it reached my neck and head so I was seizing on the whole of my right side. Fortunately, the seizure on Monday only reached up to my stomach.
I already have a review appointment with a neurologist consultant at the RVI next Tuesday so we will see what he or she says. I don’t expect that they’ll change my medication and I wouldn’t want them to. Overall, on the recent seizefront, Monday was the exception. Over the last month or two, I’ve been having flickers/spasms in my leg (and often just in my toes/foot) only once or twice a week. I can live with that compared to the multiple, painful and prolonged daily seizure count at the end of last year!
The Final [Chemo]down
I saw Dr M, my consultant oncologist, on Tuesday afternoon. She said that I looked well and a whole lot better than when I’d first seen her last December. That wouldn’t be hard considering how dreadful I felt and looked at the time! I do feel a lot better, though, so it was good to hear. She noted that my mobility seemed better and even commented on my new walking shoes. I trust my medical team implicitly, particularly when they are observant about the non-medical things like new footwear!
I told her about my last Chemo being rough and asked for a stronger anti-nausea tablet so she has duly prescribed one. As the daily dose of Temo the Chemo is worked out by body mass, the fact that I’ve lost almost a stone and a half since Chemo started means that she will reduce my dose for the Hexcycle starting next week (the final cycle).
She also prescribed a heavy dose of other antibiotics (1g of flucloxacillin four times a day for five days) for a small patch on my big toe that she is concerned could already be, or could become, cellulitis. It could be a coincidence that, just over a year ago, the same little patch was as itchy as the proverbial and was swollen, red and burning up. I looked it up and cellulitis was one of the things that it could be (self-diagnosis by google!) so I got it checked out. The doctor at the minor injuries clinic said that it was fine.
The patch has never quite gone away and flares up itchy wise every now and then. This time, it has been itchy and the red colour, burning up and swelling has spread across the top third of my foot. With my immune system being compromised, Dr M is taking no chances. It means another eight tablets a day temporarily. On the plus side, she was pleased that I’ve weaned myself off steroids completely for now and my Steroid-free cocktail of drugs means that I can also stop taking lansoprazole (which protects the stomach lining from damage caused by the steroids).
We also discussed next steps after the final Chemo cycle. I will have an MRI scan sometime during the first week of August. I will see Dr M again towards the end of August after she’s got the full report back from the team. That will be one of (hopefully many) D-Days in terms of what the Squatter’s been up to.
I feel calm about the upcoming scan and results, partly because I’ve got to get through the last cycle of Chemo before then and partly because we always take things one day at a time anyway. The wait between the scan and results is not something that I expect to bother me, although I know that most of those around me will be stressed out of their heads. To me, it’s a bit like waiting for exam results: worrying about them won’t change what you’ve written in the exam and therefore what grade you get.
With the couple of weeks waiting for my biopsy results, I was mostly asleep for the first week but then enjoyed not knowing as it was full of hope that it could have been a curable tumour. I think that the weeks in August could be full of hope that the treatment has evicted at least some of the Squatter. I’m not necessarily expecting bad news. In fact, I have no idea what to expect as I have no way to gauge the success or otherwise of the treatment. Obviously I’m hoping that it’s the best possible news. If it is bad news then I will have at least enjoyed a few weeks’ reprieve from knowing that it’s bad. We are hoping to go away for a little holiday in between the scan and results depending on how I feel.
We are nearly there with the Hobbit House. All painting has been completed apart from a bit of glossing in non-carpeted rooms such as the utility room. The three new carpets (for our bedroom, Jennifer’s room and the living room) and bathroom flooring are being fitted as I type. Graham and my Dad were working yesterday and late last night to get those rooms ready for carpets by drilling and putting curtain rails and curtains up and fixing tv brackets to the wall, as well as tidying and cleaning.
Earlier this week, Graham booked a furniture removal van for Monday and then realised what that means for the workload over the weekend! He and our ever-supportive army of “volunteers” will, by Monday, need to assemble the furniture we’ve bought for the Bungalow, namely a giant Ikea wardrobe for our room, a wardrobe for Jennifer’s room and Jennifer’s new cabin bed (complete with a slide down). J’s double bed at the old house doesn’t fit in her new bedroom and Leo is the only one who can bring his wardrobe with him. We have 29 boxes from Ikea being delivered tomorrow!
They also need to disassemble some of the furniture in the old house so that it can be moved, including our bed, chests of drawers, Leo’s cotbed and his wardrobe. This moving malarkey is getting very real now! We could be in next week but I’m not sure that I want to be in the middle of unpacking a whole house (even if it is a tiny little hobbit house!) during my Chemo.
Chalk and Cheese
Jennifer is leaving nursery next month. She’s attended three days a week since just before her first birthday. She has, by all accounts, been the same gentle, inquisitive, kind and caring girl at nursery as she has been at home. Now it’s time for a new chapter: I ordered Jennifer’s school uniform this week ready for her starting Reception in September. It seems like it was just two minutes ago that she was a baby: where has the time gone?!
On the other hand, a LOT of dramatic, sad and happy waters have gone under the bridge since then. Being here and able to take Jennifer to school on her first day is definitely one of the things that is on my unwritten “Bucket List” of occasions and celebrations to attend. It flashed through my mind within ten minutes of being told I had a brain tumour last September that it is something that would be an important aim. Only a couple of months to go to live that particular dream.
With Jennifer gone, the nursery team will happily still be part of our lives with our boy. Leo is a gorgeous, lovely, curious, bright and energetic little boy. As I think I’ve said previously, he is also full of mischief and a determined climber. Last week, I went along with my Mam to pick the kids up from nursery for the first time in ages. One of the ladies who works in Leo’s room (from babies up to toddlers around 2 years old) told me that he climbs all over things and sticks his tongue out when he’s doing something that he has been told not to do. This is something that we are trying to resolve at home too so at least he’s consistent…
At nursery, however, he has added leading others astray to his list of mischief-making. Apparently, he likes to check that the younger kids are watching what he’s doing, knowing that some of them will try to copy him, then clapping when they do. I found this both mortifying and hilarious in equal measure! He’s going to be a ring-leader of trouble if we don’t act now!
I think the next update might well be a return to haiku as this has been a bit of an epic!
Hope all is well with all of you!