Today it’s a month since Bru left us. He used to hate the expression ‘fight against
cancer’. He felt that it was not a
choice and if you have it, you have to deal with it as best you can and that
anyone would do it. His words from a bit
of writing he was doing a while ago - “You don’t really have a choice. The word
“fight” suggests or implies some kind of gentleman’s pugilistic pursuit. That
is, it implies a contest, where there may be the opportunity to use physical
strength or intelligence to overcome cancer or even win. The reality is that it is not a contest, and
you have to take your poison and hope for the best.
With a terminal disease not only are the odds stacked
against you, but you are also generally guaranteed to lose. So I am writing
this through sheer luck rather than good judgement.”
He did fight though and I think he would agree with me now
that for the last six months especially, it was a real fight. Everyday was hard for Bru in some way. I know it’s not nice to hear and it was hard
to witness sometimes too. Of course he
felt low and complained about things –
just having to tell people what his current malady was meant that he had to
address how rubbish he was feeling but he did not wallow in it for long.
I suppose in stages over the years we were almost in
mourning for the regular life we knew we wouldn’t have together – big travel
adventures, career progression, a house of our own and most of all
children. Bru loved kids and once they
got over his gruff exterior, they often really warmed to him; he used to enjoy
teaching them how to draw or showing them his guitar. Although our world was
‘smaller’ we were still happy. I used to
look forward to getting home to see him and even if he’d had a rubbish day, we
would soon be joking about something. We
went on some beautiful UK adventures and our amazing friends and family always
made the effort to visit and support us.
Looking back through the photos when I was preparing for
Bru’s funeral, I found pictures of all that he went through: the steroids and
the awful side effects that they bring; the pressure sores – I mean he was in
bed 100 % of the time for almost a year and a half and he handled it somehow
and still didn’t complain or feel sorry for himself too much; the psoriasis –
those who saw him during the phase of his whole face peels will know how bad it
was yet he still used to joke about me having to hoover him (yes I did but just
so you know, it was a freshly bought hand held especially for that purpose!);
the going into septic shock situation and more recently, over the last two
years it was the pain – the nerve pain, the shingles pain, whatever the pain
was, it was sometimes so bad it would leave him shaking. There were many more daily struggles and
things that are difficult to deal with just being paralysed. Dealing with any one of these things on its
own would probably be a huge life event for someone.
This is a bit of Bru’s recent writing that I found called
‘Honesty is the most dangerous thing’ and as usual he explains things so
well. He didn’t finish it but I know he
was writing this recently when things were much harder.
Honesty
People always ask me, ‘so how are you?’ This seemingly
innocuous question is almost impossible to answer. You have several responses
ready and loaded in the chamber, ready to be fired back.
If the person asking is someone you don’t know well then the
simple, yet effective, ‘I’m keeping as well as to be expected.’ Of course, this
is a bullshit answer that saves you a lot of time and heartache.
Do people want the truth? Sometimes I wonder. The truthful
answer is really complicated and painful.
If the person asking the question is a friend or family
member then I immediately have a quick and efficient ranking system that helps
me design a tailored response. For example, some will get a vague partial
answer that is designed to make sure his or her day isn’t ruined by the truth.
So the door of honesty is cracked open a little bit. Accordingly, a good friend
with some shared life experience, who I trust and love, will get a more honest,
truthful answer. Of course the truth is I am not well physically and sometimes
I’m not well mentally.
Pain, discomfort, a myriad of side effects from drugs,
nausea and weakness are a constant. Boredom that is bordering on the dangerous
is also a constant. Sometimes I’m depressed beyond belief. I am sometimes angry
at the world, angry at various people who inadvertently grind my gears, and
worryingly, sometimes I imagine Swiss-cheesing these innocent people like a
1930’s American gangster with a Tommy gun. Sometimes I’m tearful and can cry at
the slightest bit of nostalgia, sentimentality or the film Moonlight. I’m not
gay, African-American or Floridian and have no connection to the story, but it
still just moves me to tears. As they say in the great Australian comedy maybe
‘It’s just the vibe of the thing.’
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As I’m doing this blog post, I am wondering why I’m sharing
all of this now. I think it is because
it makes how Bru dealt with everything all the more impressive. His positivity, humour and pragmatism
certainly weren’t just put on when he was writing his blogs or seeing people –
that is how he used to face it and deal with it. I believe it helped to keep him going and
exceed the doctors’ expectations right to the end.
So the end was a huge shock to us even after all the dire
prognosis we heard over the years. I
don’t think anyone can ever be really ready for it but I / we really, really
weren’t ready for it. That sounds silly
as Bru had had a terminal diagnosis for about nine years but he had bounced
back so many times. We certainly knew that time was going to be fairly short
after getting the scan results in the last week, but we had never known exactly
how the tumour would affect things in the end. Bru’s main concern was losing the use of his
hands and arms and they had definitely weakened. We thought the tumour would keep growing
until it affected Bru’s breathing.
Towards the end of July, Bruce was very chesty which we were
concerned about and his pain was getting worse.
He had antibiotics for his chest and the Trinity Hospice doctor decided
it would be a good idea for him to be admitted there so that they could change
his painkillers to a different type. He
had been feeling very drowsy and sleepy a lot of the time and this is one of
the side effects of opioid toxicity. This is when the opioids are not tackling
the pain effectively so the levels in the body are too high, causing
drowsiness, hallucinations and twitches which Bru had to some extent. So the plan was to stay in the hospice for a
couple of weeks to taper down and then switch to different painkillers. By the time he was admitted, we knew the scan
results and knew that the last chance chemo was not working. Bru had been vomiting a fair bit, was often
weak and tired and had struggled taking the last two months of chemo so I was
just hoping that this switch of pain drugs and not being on chemo would give
Bru a few more comfortable months.
Bru was admitted on the Wednesday and was very drowsy by
lunchtime and slept most of the day. On Thursday we had a trip to A&E
because of catheter issues and Bru was pretty perky and not drowsy at all –
probably the best he’d been for a while so that was a relief. At A&E they
took bloods, which were all good and they listened to his chest. Although he still sounded chesty, his lungs
were clear so there was no chest infection.
On Friday Bru was wiped out again but the hospice doctors
just thought it was due to him being up all day the day before and the opioid
toxicity. I asked the doctor how she
thought things might progress in terms of timing because I needed to let some
family who were due to come in September know.
She said the most likely thing to happen was that Bru would get a chest
infection/pneumonia which wouldn’t respond to antibiotics. I asked her if she thought we’d be going home
and she said that once they’d switched the pain drugs over she couldn’t see why
not but she thought I should let family know to keep travel plans flexible or come
early Sept just in case Bru got an infection.
It was hard to hear but I was relieved that she still thought we’d be
going home. Bru slept most of the day
but woke up at eight and was fine and chatty.
On Saturday morning
Bru was awake for breakfast but was still sounding really chesty and was drowsy
again. A different doctor who we hadn’t
seen before came in at about midday and checked up on Bru who was struggling to
stay awake. She then told me that she
thought it would be a matter of days.
I was shocked because of the discussion I’d had with the
doctor the day before and didn’t understand why as his bloods and chest were
clear. She said she would be happy to be
wrong but that based on looking at him and in her experience, she didn’t think
that Bru would have much longer than a few days. Bru woke up again at about 5ish and my dad
was with me now too. Bru was chatty and
chirping about some guy on TV. I told
him what the doctor had said and he said he felt fine and he thought the doctor
was over egging the situation. He
decided he wanted to get up into his chair to try and cough sitting up to clear
his chest. I was so relieved that he
seemed ok and was determined to get up.
Bru passed away shortly after that.
I would take the few days the doctor had predicted in a
heartbeat now. It was too sudden but Bru
really was fighting and determined until the end.
Below are the words I wrote for Bru and read at his
funeral. It was a really special send
off for him and I think he would’ve approved.
Thank you to everyone who was able to come and to those who weren’t,
thank you for all the meaningful messages you sent. I typed some up and displayed them at the
funeral so you were with us in spirit.
I’ll also post some tributes from family and friends when I
get a chance over the next few days.
Love to you all
Jay
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Bru is the one who normally does all the talking but I’m
going to try.
The messages that have been sent for Bru have been beautiful
to read – there are so many adjectives that stand out and they were used to
describe Bru over and over again - funny, brave, intelligent, kind, resilient,
loyal, courageous...
Bru wasn’t a fan of using too many adjectives in writing as
it can sound insincere but I know that all of these words have been said with
huge sincerity and it makes me so proud of Bruce. He was all of these things to me and
more. I am sad that he doesn’t get to
hear all of this. He was often so hard
on himself as he felt he hadn’t achieved the conventional milestones in
life. I used to tell him he had a fairly
good excuse. I am so grateful though,
that so many people did get in touch with Bru after every blog and said some
wonderful things to him.
Bru faced a lot throughout his life but was always so
positive and determined. Right from the
beginning when he first became paralysed, he somehow didn’t wallow in
self-pity. He laughed and joked with the nurses and put all his stricken
visitors at ease almost immediately by cracking a joke. He was always so friendly and polite to all
the many nurses and doctors he saw – they immediately warmed to him. Even at his sickest in the hospice when he
was struggling to stay awake one afternoon, he offered his doctor a seat and
some water.
It was a privilege to look after Bru but importantly, Bru
really looked after me too – I couldn’t have done it without his ongoing
positivity – he went through some awfully difficult things but somehow was able
to bounce back and keep us smiling – he kept me going as much as I kept him
going.
He was so loving, he cooked for me whenever he could, even
if he felt terrible; he often complimented me out of the blue; he worried about
me and supported me when I faced things that I was nervous about. He was so generous and just wanted me to be
happy. And of course we laughed. We
always, always had fun together and occasionally he even laughed at my jokes
too.
Bru was interested in so many things and he made life
interesting. He loved music (his music collection is a thing of wonder), loved
dancing and loved a party. I’m so
grateful that he lived his relatively short pre-illness life to the full and we
have his crazy stories to tell. He loved learning about and cooking different
types of food, he loved sports and cars and could remember random stats about
these things at the drop of a hat. He
loved history and sharing books that he found interesting with his friends. His
ability to remember general knowledge was frustratingly good – annoying because
I very, very rarely beat him in trivial pursuit.
He wasn’t perfect of course. DIY was definitely more my
domain and he was very stubborn. For no
good reason, he would not let me teach him how to use predictive text and that
drove me crazy! In the old days he would
also love to stubbornly buy a bottle of Sambuca right at the end of the party
just to keep the fun going, while his friends often faded around him. His
stubbornness and determination to keep going though, were in fact, huge
strengths because he never gave up – right to the end.
Bru was a collector
of things – music, colognes, cars, books etc. – not always good for our tiny
flat. But most importantly he was a collector of some really, really special
friends. We were lucky enough to have
had the love and support of so many of our close friends through the ups and
downs. He was, and I am so grateful and
overwhelmed by the messages and kindness from, friends, friends of friends and
even people who only knew Bru briefly – thank you all so much.
And our families – we have had so much love and support from
everyone. I want to thank my sister and
my mom and dad for always being here for us and for sacrificing things in their
lives to be close to us. Bru’s family
has also often gone the extra mile - building Bru wet rooms, accommodating us
for months on end and all the cousins and family from all over the world,
travelling to come and visit us. We have
had so many special times with everyone and the thing that stands out is
laughter. This is a quote from some of
Bru’s recent writing “I have always been surrounded with a surplus of love and
affection and thank my lucky stars to have had such a devoted family”
Thank you families – we love you.
There is so much more I could say but I’ll save it for Bru’s
final blog. I’m not sure what my life
will look like without Bru and I don’t think that that has hit me just yet – a
hospice nurse said to me – he was half of me and he was. A big half.
There are things that I have learnt from Bru and everything
he went through that I will try to take forward: to look after your body and
health – change things if you have the ability to; appreciate spontaneity and
make the most of opportunities that present themselves and tell people how you
feel about them. Stay positive and laugh a lot.
I love you Bru.
