Followers

Saturday 18 July 2020

The miracle

I often joke about getting myself a t-shirt saying “I’m not saying I’m going to be a miracle, but I haven’t ruled it out!” Yesterday I got a letter that made me wish I had! And today I could’ve got another one saying “See? I told you!!” 

The post-scan letter from my Oncologist is something I  dread yet love to receive. It’s terrifying but it brings news and takes away the ‘not knowing’. In reality, I’ve had great results since I had my surgeries and completed my treatment almost three years ago. Each MRI has shown improvement on the previous one. So really the ‘letter dread’ is unnecessary, but there’s a constant ‘what if’ shadow hanging over all cancer patients.

Yesterday I got my scan letter. I wasn’t expecting bad news because all my results have been good and I feel stronger now than I have done since the start. Still I opened it with held breath and shaky hands. I still can’t quite get my head around what I read. It’s partially why I’m writing this, because writing this blog helps me make sense of my feelings and understand what’s going on. It doesn’t matter what I’m trying to process, writing always seems to help. 

So here goes....... Here are my latest scan results .....*drumroll*

I am again pleased to say that everything looks very stable and very quiet. There is no sign of a return of your previous brain tumour. This is very reassuring.”

There is no sign of my incurable, terminal brain tumour and no sign of a return?? This is very reassuring indeed!! Quite possibly the most reassuring thing I’ve ever heard in my life!! 

I understand the Oncologist has to be careful because the statistics would show a very high likelihood of it returning. Like all good horror films, sometimes they come back, but my typically optimistic reading of that letter tells me only one thing that I’m prepared to listen to at the moment.......... 

IT’S GONE!!!! 

I wanted to end this blog post with a suitably poignant quote or song lyric, but I have to be honest and say the only one that’s been embedded in my head for the last two days is completely cheesy and not even slightly clever. Oh well, nothing else for it........

Don’t stop believing!!
Journey

Living with?? Not at the moment!! Xx

Wednesday 15 July 2020

Buddy Holly

My dad has never been “cool”........ he’s a big dote of a man and has a heart of gold, but “cool” isn’t a word you’d ever really use to describe him.

Dad was raised in a wealthy family in Scotland and went to boarding school from a very young age. A very posh, private boarding school that has been open since 1525. A glance at some of the school’s alumni reveals an impressive list of names; politicians, business people, sports stars, actors, authors, historians, archaeologists, zoologists and screenwriters..... to name but a few! It’s clear my father’s parents wanted to give their children opportunities and expected them to be high achievers. 

My father took this very much to heart and, to this day, he always seems to wish he had done more, had ‘been’ more. In reality he raised my stepsister, sister and I in a house where we wanted for nothing.........apart from maybe more time with him. He was always working. When I was a teenager he was Managing Director of a large factory and President of the local rugby club. 

Like many teenagers I rebelled. I rebelled hard. I rebelled against the life I was privileged enough to have. I didn’t want a nice house, an annual foreign holiday and to help serve drinks at dinner parties. I wanted to live in Portstewart or Portrush, get the bus home from school, hang out at the amusements all night with older friends who smoked and drank alcohol. 

My rebellion was aided greatly by one, very important thing........ rock and heavy metal music. What better way to rebel against parents I saw as being stuffy than to blast some Metallica when they had visitors and shock everyone by coming downstairs in ripped jeans, DM boots and hair dyed a completely unnatural colour?? Perfect. 

The reality of that teenage rebellion is that while the rich kids were at a local ‘cool’ nightclub doing drugs and getting into fights, I was at a tiny local rock club where everyone knew everyone else, with people who were really only interested in hearing a live band. To this day I still find myself standing beside some of those people at gigs and those same teenage rebels have helped me raise thousands for Macmillan Cancer Support. We’re all older, have families of our own and are generally decent, normal people. 

So while my dad was listening to Holtz and Prokovief (ask me to hum Peter’s Theme from Peter & the Wolf and I’ll prove my background.....), I was blasting Megadeth and Slayer.  As the years went on I expanded my music knowledge and have grown to love a wide range of music and artists. For me genre doesn’t really matter; if it sounds good to my ears then that’s good enough!

So no, I’ve never really seen my dad as ‘cool’. A good man, a man with a great sense of humour, a man who worked hard all his life to provide for his family, a man who’s come through some hard times emotionally and a man who loves me very much and is always there for me. But not a ‘cool’ man.

So finally, after far too many words as usual, I reach the point where I tell you of the few minutes last night when my dad became ‘cool’......... I was taking him to the airport to collect a friend of his. As always, we arrived early, and parked a few miles away to avoid extortionate car parking charges. I decided to put on some music and chose an album I remembered my mum listening to when we lived in Scotland; “Bridge Over Troubled Water” by Simon and Garfunkel. Dad said it was ‘quite nice’ and I told him I remembered my mum listening to it and, in fact, I even still have her old LP version of it that I inherited when we moved to Northern Ireland. I told him that, although I was only five years old when she died, I remembered mum listening to music. I remembered she liked Simon & Garfunkel, ABBA, Cliff Richard (in the ‘Devil Woman’ and ‘Carrie’ years rather than ‘Mistletoe and Wine’!) and Buddy Holly........

To my complete amazement my dad said “Yes, Buddy Holly. He died in a plane crash. Along with the Big Bopper.” My uncool dad knew about Buddy Holly??? Then he went further and told me they’d seen him in London!! At this point I’m looking at him with complete admiration..... “You saw Buddy Holly?? Live??” Instantly my dad became ‘cool’. Completely and utterly cool. Cooler than cool. He saw Buddy Holly???? 

My dad was born in 1944 and Buddy Holly died in 1959...... I should’ve done the maths and realised how unlikely it was that a teenage Glaswegian boy from a posh family would’ve seen him live in London, but I was too excited by this news and immediately asked him to tell me more.......“Yes”, he said, “It was in 1999. We saw it at the theatre in London.” 

My dear old dad had seen the musical theatre show of “Buddy” about the life of Buddy Holly. The Coolometer score crashed from ‘totally awesome’ down to ‘moderately middle class cool’ in that one sentence....!! But do you know what? It doesn’t matter. My dad is cool because he’s his own man. He’s my dad. Who cares about his music tastes? Not me. 

So if you think you’re cooler than other people, remember what Ben Folds taught us; 


“Make me feel tiny if it makes you feel tall but there's always someone cooler than you
Yeah, you're the shit but you won't be it for long
Oh, there's always someone cooler than you
Yeah, there's always someone cooler than you”

From “There’s always someone cooler than you”, song by Ben Folds

Be cool, but don’t be too cool to care about not being cool! 

Thursday 2 July 2020

Keep being fearless

Yesterday was 6-month MRI scan day. Never a day to look forward to but a necessary evil. I don’t mind the scan itself. Some people can’t stand being restricted inside a tube that’s making crazy thumping and clicking noises round your head. Personally I close my eyes and think about other things. Similar to when I was getting radiotherapy, I often pretend the noises are the cancer cells being zapped and killed...... Please note - I’m well aware that is NOT what an MRI scanner does!! According to the NHS;
 “Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.”
In layman’s terms it takes photos of my brain! 

Before the scan I get asked a series of questions..... my favourite is when they ask if you’ve ever done any welding. My childish sense of humour always makes me chuckle and I’ve been known to answer “No, and I haven’t poured any buckets of water over myself recently either!” Please note - This joke only works if the person going through your form looks like they may have grown up in the 80s.....

They also ask if you have any tattoos. Apparently this is  because tattooists used to use lead based ink and anything metal can heat up during an MRI. I do have a tattoo but it’s not old enough to use the old ink. Again cue the childish sense of humour; “Yes, but I didn’t get it done during the war and its not a prison tat or anything!” 

The type of MRI I get involves having gladolinium injected into a vein in my arm. This is a chemical and essentially results in clearer pictures.  

Fear of the MRI scanner can be a fairly common complaint. So much so that you’re given an emergency button to hold in your hand throughout the scan. If you find yourself feeling claustrophobic and starting to freak out then you can squeeze the button and presumably the scan will be halted. I say ‘presumably’ because thankfully I’ve never had to do it. Like many people, I don’t particularly like confined spaces, but my claustrophobia triggers are excessive heat and a fear of getting stuck.......particularly between two solid walls of rock. I think I watched Indiana Jones too many times as a child! Funnily enough, I don’t like snakes either....... (Again, if you didn’t grow up in the 80s then I have no idea why you’re even bothering to read this!)

I don’t mind lifts or small rooms. I reckon I could hide in a wardrobe if I had to without losing my mind altogether, but potholing would be a definite no-no. I’ve been in the catacombs in Paris without much issue but last year we visited Newgrange in County Meath, which is a ‘passage tomb’. As I slowly edged away from our tour group, I heard them being advised not to take any bags inside as the way in was very narrow. The worst I ever experienced was going into a hong in Thailand. A hong is essentially a rocky island with an open centre. To get into the middle you have to go through tunnels in a low lying canoe. At some points the tunnels are so shallow you have to lie flat in the canoe. It’s like lying in a pea pod, except the peas are overlapping so my son had his head on my tummy and feet at the end of the canoe, and I had my head on my husband’s tummy. And it’s hot. Damned hot. I lay in that canoe, with solid rock an inch from my nose, sweating, and I could feel the panic rising. I could hardly breathe by the time we popped out into a vast open cavern, surrounded on all sides by skyscraper-like rock faces; that one tunnel the only way in and out. 

Unfortunately an MRI scanner doesn’t bring you the same visual rewards a Thai hong will bring you. You do not emerge into an impossibly perfect oasis of crystal clear water, blue skies, and monkeys. With an MRI you emerge back into a hospital room...... but you also emerge knowing the experts can now see what’s going on. I’ve been very fortunate that since treatment I’ve always had improving scan results. The day that changes might be the day I develop severe claustrophobia. 

In the meantime my anxiety doesn’t come from the MRI scanner but rather from the wait for results and the use of the contrast dye. My veins are completely rubbish. They gave up long ago and are spindly sunken threads that hide well below the surface of my skin. To compound the problem I also have ‘a bit of a thing’ about anything being put into my veins. Too many films and Stephen King books makes me imagine death by lethal injection....

The medical staff are always very good but I now have to have an expert from Infusion Services put in a cannula every time I go for an MRI. Yesterday even the expert struggled but I told her to keep going. There’s no point travelling over 50 miles away from home to return home not having had a full scan. As she apologised and explained the ultrasound showed a vein but it was deep, I watched as she produced a needle so long I joked it might go into the crook of my arm and emerge from my funny bone! I repeated my mantra over and over as I do every time a needle is produced “I’ve had two brain surgeries and I was awake for one of them. I’m not afraid of a needle. It’s nothing. A quick, sharp pain. I’m not afraid.” A sharp jag and a pool of blood later, it was done. It took an hour and a half to get that vein. I’ll not pretend there wasn’t sweat running down my back by the time that cannula was in, but there was no tears or drama. I lay in that scanner and imagined the loud tapping was a woodpecker, pecking out any cancer cells that might be in there. 

So if you ever need to have an MRI, remember to just imagine the woodpecker is pecking away the badness or whatever daydream works for you.  

When I go to appointments I like to pick appropriate t-shirts. Usually Finding Dory ones about short term memory loss or being fluent in whale. For chemo my sister bought me one that said “Still hoping chemo will give me superpowers” (And, for the record, still not convinced it didn’t. Something certainly seems to have!)  Yesterday’s confidence boosting t-shirt was a cracker I think......



To all those living with...... keep being fearless xx