Rip Up the Rulebook

Last week was half term; I started the week feeling fairly positive but by Thursday I just wanted to cry, I was full of anxiety, anger & frustration. It appeared that I had completely lost an entire day somewhere in the ether; I had taken the boys to the dentist an entire twenty four hours early despite having several reminders on a variety of devices, I honestly thought Tuesday was Wednesday & even when I realised it wasn’t I was convinced that Friday was Saturday. Unfortunately half term was also chemotherapy week which also means five days of steroids; I think my brain had over anticipated & lead me a merry dance.

Half terms never used to look like this & school never used to look like this:

Dylan was ill on & off in the first term of Year One (September 2016) & by the end of that term we finally realised why. His cancer diagnosis meant that he missed both the Easter & Summer terms of that academic year. From the beginning of February 2017 he had a wonderful tutor for 5-6 hours a week up until the last week of the summer term where I dared to let him go into school for a couple hours on the last two days of term.

In September 2017 Dylan went back to school to begin Year Two.

The anxiety that built up within me as the new term approached was absolutely horrendous, I would physically shake just thinking about it. I did not want to see people & I certainly did not want to talk to people; I did not want the awkwardness. However, my main cause of anxiety was leaving Dylan. As his mother it felt so wrong letting him go to school; he had only been in maintenance since July & was weak, had a very low immune system & was struggling with a variety of issues. Conversely also as his mother I knew that he both needed & yearned to go back. He needed to feel as normal as possible, he needed to see his friends & he needed to start living life as independently as any other six year old child. His nurse was saying he was ready & so were the consultants; it was me who was not ready.

So I would drop him off a little after the school day started, he would stay for two hours at a time & only for two or three days a week. I would shake & fight back tears whilst walking out of the school yard to get to the car as quickly as possible where I would sob uncontrollably. Thankfully I have stopped sobbing every morning but as yet I have not stopped worrying, I never will.

This two or three hour routine worked well & towards the end of September I would occasionally pick him up after lunch. However, by mid October Dylan kept getting fevers & was back in hospital for three days. We kept him off school so he could fully recover & so that he would be well enough to go to Legoland for a long weekend organised by the wonderful charity “Dreams & Wishes” (as the name suggests they are dedicated to helping seriously ill children enjoy extra special treats). It was an early birthday treat for Dylan.

He managed one night out of three before he came down with another fever & we had to rush him to the nearest hospital where he stayed for two nights. We had to wait for his temperature to stabilise before we could transfer him to our local hospital for another two day stay. He was finally allowed home the day before his birthday, only to have to go back in on his birthday to have chemotherapy.

November continued in pretty much the same vein; fevers, hospital visits & lots of days off school. A suspected Hickman line infection was causing the fevers so he had surgery near the end of November to have it replaced with a port. More hospital stays & a lot more time off school. Things started to slowly improve after surgery & Dylan started back at school again; he’d had such a good run initially but was now almost back to square one. Then there was an outbreak of chickenpox at school & so Dylan had to go on a two week course of antiviral meds. Sometimes this is how it goes, two steps forward two steps back. There are no rules, there is no right or wrong way. There is just what each day brings.

Dylan was able to take part in his Christmas play.

I took him in ready to go on stage & took him home immediately after the play was over as two days previously he had had a lumbar puncture & his back was painful. During the play’s introduction, a girl a couple of years older than Dylan played “Hallelujah” on her violin & I was suddenly hit by all consuming emotions. By the time the play had started & I could see Dylan on stage my tears would not stop coming. All I could think was that during his last Christmas play he had cancer; I honestly had no idea if I would ever get the chance to watch him in another play & yet here he was. I was ecstatically happy all at once & pitifully sad all at once. Cancer seems to continuously bring these paradoxical situations.

In short Dylan’s school is simply incredible. Through their dedication & commitment to this difficult situation they have made me feel so at ease. I have complete faith in their care & devotion. They ring me as soon as Dylan is tired; sometimes that is an hour after I have dropped him off, sometimes it is half an hour before the end of the school day. They do pretty much anything to make sure that Dylan is comfortable both physically & mentally; he has a soft chair for the days he is on steroids or if his back is aching, he trusts his teachers implicitly…as do I. The staff have managed his transition back into school with such gentle mindfulness, he has reintegrated so happily it almost feels like he never left.

A while ago I mentioned to Dylan’s teacher that he needs to do certain exercises to help with his peripheral neuropathy issues. There have been moments at home where we have attempted to get him to perform said exercises & his reaction is such that anyone would be forgiven for thinking that we had asked him to chop both of his legs off & feed them to a pack of wolves. He has been reluctant to participate in his PE classes, partly due to residual pain from steroids & chemotherapy & partly because he thinks he can no longer do stuff like that very well. Without mentioning a thing about it to Dylan, his teacher now integrates his exercises into the class’s PE lessons so everyone does them together. Thanks to this Dylan now thinks he is the exercise oracle both at home & at school. His physical fluidity is not what it once was but it is improving slowly over time. It is these little pockets of thoughtfulness that help me & moreover Dylan.

For so many months Dylan’s treatment was so intensive that we could leave neither the house or the hospital.

His maintenance plan started in July 2017 but this is the first month that the treatment schedule has gone as it should…no extra hospital visits & no extra illnesses. It feels weird & wonderful all at once (the kind of quiet wonderful that you dare not speak because you are all too aware that in reality next month might be completely different. That is the thing about cancer; even when you have a good run you cannot actually run with it).

Two weeks ago Dylan went to school for five days on the trot for the first time in over a year. Granted I had to pick him up a couple of hours early on Thursday & Friday but it is still a significant milestone. However, by the weekend he was asking to put his pyjamas on at 5.30pm; he was shattered.

There is no rush to get him back to school full time; he’s seven. There is no rush to get him to hit milestones; he may never hit them. It is so much more important for him to enjoy life, to build up his stamina & to be happy; that will take as long as it takes.

We will try five days on the trot again in a few weeks or a few months, whatever feels right.

I went away for the last weekend of half term…it was just what I needed: but now I’m back I’m back & I’m wondering what Monday will bring.

Do not hold your breath.

Live in the moment.

Rip up the rule book.

Cancer brings its own set of rules & they change daily.

One thought on “Rip Up the Rulebook

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