A Jowell Jewel
Last year, Tessa Jowell was diagnosed with the same type of brain tumour that Graeme had. This week, as some of you will have seen, heard and/or read about, she gave an interview on BBC Radio 4 and made a speech in the House of Lords, which triggered a rare standing ovation. She has finished the treatments available in the UK and was calling for an increase in access to experimental cancer treatments. Here’s the best explanation that I’ve found for what she’s advocating.
The Brain Tumour Charity collaborated with Tessa and the BBC team. A lot of friends and family have generously donated to the Charity and it’s certainly being put to good use. Among other things, it has recently launched BRIAN, a global brain tumour database (I’ve already signed up) and funds research projects around the world. It is funding the first adaptive clinical trial in the UK, an international trial that will test improved treatments for children diagnosed with one of the most aggressive childhood brain cancers. It is also inviting applications for funding for projects including an adaptive glioma clinical trial.
Let it Go
Some of you who have been friends with me for a while might remember me posting the poem on the blog I wrote when my brother was dying. I’ve since posted it on Facebook on Graeme’s birthday and/or anniversary.
In Blackwater Woods By Mary Oliver
Look, the trees
their own bodies
are giving off the rich
fragrance of cinnamon
the long tapers
are bursting and floating away over
the blue shoulders
of the ponds,
and every pond,
no matter what its
name is, is
I have ever learned
in my lifetime
leads back to this: the fires
and the black river of loss
whose other side
none of us will ever know.
To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it
to let it go.
When I first came across the poem, it resonated with me for several reasons. At the time, my brother was bedridden at home in the final weeks of his life. We didn’t know how long he had left (as we none of us do). It was rather bluntly written in his care notes on release from Hartlepool Hospice something like: “Graeme has come to die at home”. We were also given booklets with cheery titles like “End of Life: The Facts”. So we weren’t under any illusions that the end was nigh.
The last line of the poem stuck in my mind, thinking that we would have to let Graeme go imminently. The previous lines about one’s own life depending on the love of a mortal being has proved true on one level: the “black river of loss” resulting from Graeme’s death changed me and, in turn, my life profoundly (as I explained in one of my earliest posts, A Known Unknown).
The poem comes to mind every now and then as it did the other day when I listened to Tessa Jowell. It struck me for the first time this week that those last lines applied to Graeme too. He lasted longer than is usual for someone in their final “days” (those “days” turned out to be six weeks) and when we were woken up at 4.45am that Graeme was likely to die within an hour, he lasted three. He died not long after my Mam told him that, although it was the last thing any of us wanted, it was ok for him to go. We can’t know for certain that he heard, understood and heeded what she said but I firmly believe that he did.
It was probably the saddest thing that my Mam has ever had to say and the saddest words Graeme will have ever heard. They were certainly the saddest words I’ve ever heard.
From one important issue to another, Martin Niemöller (1892–1984) was a prominent Protestant pastor who spoke out against Hitler and spent the last seven years of Nazi rule in concentration camps. Today, on Holocaust Memorial Day, this quote of Niemöller came to mind:
First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.
Lest we forget. Yet, with the recent normalisation of intolerance, hate and violence against “others” around the world, it feels as if we’ve already forgotten the lessons from the atrocities of the Holocaust.
I have a form of New Balance in my life, gently swaying in the calmer winds of late. The gentle swings have recently included lunches and tea out, a bit of shopping, making angels, a bit of walking (thus improving muscle strength, movement and energy levels), receiving guests, learning, the odd trip to the cinema and doing a jigsaw.
I’m not just living in limbo between hospital appointments, which is just as well as my MRI next week has been cancelled due to a shortage of radiographers. I’m waiting to find out when the rescheduled appointment is. Until then, I won’t know if the delay will jeopardise the timing of my results. I will keep you posted as and when the appointment arrives in the post.
I still get disappointed by seizures as they each set me back to some extent. Fortunately, my recent seizure rate is considerably less than it was this time last year. Then, I was averaging a couple of toe-to-top seizures every day. I’ve only had one lower leg seizure so far this week and one near-miss (just a short spasm in my foot). I see my Seizure Consultant on Wednesday so we’ll see what he says.
Snow Business Like Slow Business
The snow last week/weekend brought much fun. Before school a week gone Friday, Leo, Jennifer and Graham had built a Girtonian Snowman. Sadly, by the end of the day, he was headless. We drove that evening a few miles away where the snow was very deep. Jennifer, Leo and I made snow angels to varying degrees of success. Leo and Jennifer made textbook snow angels, although I only got a photo of Jennifer’s as we needed to help Leo up in his snowsuit so the footprints spoiled his work. I don’t have much lateral movement in my right leg so mine was a bit wonky! It was my first snow angel in years. I’ve now made them, among other places, on frozen Lake Louise, in Swedish Lapland and now in Burnhope! The kids had fun on sledge rides: Jennifer was imploring the Silver Mule to go as fast as he could while Dad pulled Leo slowly on his first ride on a sledge. Leo wanted to pull J and managed a few inches!
The snowy fun ended in tears. Leo cried because the snow was so deep it had gone over his wellies and his feet were cold and wet. Jennifer cried because she wanted to stay and play in the dark freezing cold conditions. Jennifer is delicate in many ways but is hardcore when it comes to the weather: she doesn’t seem to feel the cold. Leo, on the other hand, is hardcore when it comes to careering around and bouncing off doors and walls but a delicate flower when it comes to the cold. Leo had nevertheless enjoyed the sledging and came up with a warmer solution: he asked my Dad to take him in the sledge from the living room to his bed!
Sleepless in Stockton
We had a late night last Saturday when Graham and I went out for a birthday meal and drinks in Toon. We stayed until the very end (just 10pm!). I was pleased to be one of the last ones standing (or, more accurately, sitting). I would have teased the others who had gone home earlier that they were outstayed by a girl with a brain tumour. I refrained from doing so because it was the first time I’d met them and because the Dairy Regulations 2016 prohibit milking any brain tumour unless one is sure that the others know about the tumour! That was the first time I’ve been “out” in town for a long time and even though it was a late night, it was worth it.
Many other sleepless nights have been caused over the last couple of weeks from nightmares (Jennifer), croup (Leo, again, but not as bad as last time so far) and earache caused by a viral infection (Jennifer). G, in particular, is in desperate need of some holidaying in the land of nod so he went to bed earlier to try to catch some Zs.
Jennifer’s nightmares appear to intrude on her daily life: she recently asked me to come in the house first to check if there was anything in it and she often asks for lights to be put on in any dark room that she will pass even if she isn’t going in. I had many vivid nightmares as a child and a fair few since, a lot of which I can still remember. I think they come from my overactive imagination and suspect Jennifer is the same as she comes up with such imaginative games.
I remember waking up crying and sometimes screaming for my parents, too scared to leave my bedroom to cross the landing to their bedroom. I had one recurring nightmare when I was really young and it affected me deeply during the day as well as at night for a long time (as in many months, if not years). In my dream, I was locked in a then-existing indoor market/shopping precinct in Stockton with a lion inside on the prowl biting off people’s heads. Even at that young age, when I was awake I knew logically that there were no lions in any rooms but the anxiety and abject fear consuming me from the vivid dreams made me afraid to go upstairs or into a dark room on my own. When I did go upstairs on my own, I ran up and down as quickly as I possibly could to retrieve whatever I had needed.
Jennifer continues to ask us thoughtful questions. Before 7am last week, she asked Graham why shadows don’t have colour. I was too bleary-eyed to process the question never mind formulate an answer! She asked the other day why we can’t see the wind.
My Mam and I have embarked on learning something new (to us): phonics! Jennifer’s school is running sessions on phonics so that parents/grandparents can practice at home with their children in a way that is consistent with what they’re learning at school. I’m going to try to attend as many sessions as I can so I don’t fall too far behind Jennifer.
Help the Aged
A leaflet came through our door yesterday:
It was seemingly delivered only to the bungalows in the neighbourhood as my parents, who live in a semi-detached house a stone’s throw away, didn’t get one! To be fair, it’s a reasonable bet that people who live in bungalows are elderly, disabled or infirm! I certainly feel old and am a card*-carrying member of the disabled club so perhaps I’ll enquire as to what help they could provide me! It might relieve the burden on my carers!
Can You Tell What It Is Yet?
This is my first jigsaw attempt in at least a couple of years. A (small) prize for the first person to identify correctly what the picture is that I’m trying to piece together.
* Blue Badge.