I always imagined life after Dylan’s treatment would be hard, the reality is that however we believe something might be we never really know until we actually live it. It’s been an intense few weeks. The groin pain (which has thankfully gone) that Dylan experienced 3 weeks ago sent me straight back to some very … Continue reading Nothing To Worry About
It’s been one whole year since I last wrote a blog post & eighteen months since Dylan finished his treatment, twelve of which were spent shielding during a pandemic that has affected us all. I’m only just starting to come to terms with the past five years. Trauma loans the mind hyper vigilance which in … Continue reading Holding Onto Hope
Founded by my friend Syreeta Challinger, Leaven is a space to ‘permeate or transform for the better.’To feel better, to live better. https://www.thisisleaven.com/ “Podcast guest Siobhan O’Flynn from Series 1, reflects on life now, post shielding, post childhood cancer and as the world opens up tentatively for them as a family. An hour to share … Continue reading A Guest Blog Post for Leaven
A conversation with Syreeta Challinger for the podcast “Leaven”. When Syreeta approached me to ask if I’d consider talking to her about hope whilst living through grief & trauma I leapt at the chance. I feel like I know Syreeta & yet we’ve never actually met in person. Despite our stories being very different we … Continue reading Cancer, connection, catharsis.
The first time I heard the bell was as I lay in a hospital bed with Dylan in Room 9 not long after he came through the biggest fight of his life on Christmas Eve 2016 when his first round of IV chemo started working just in time for him to live to see Christmas … Continue reading The Bell
When a person who’s known you for longer than the duration of your son’s recently completed cancer treatment tells you that they “know you won’t ring the police” after quizzing you about which neighbours might be able to see into their garden, when they mention that someone has “just” had a baby & some of … Continue reading Covid Diaries. For The Shielders.
I started writing this blog 11 months after Dylan’s cancer diagnosis to raise awareness of what it’s like to live within the world of childhood cancer. I’ve tried to be as open & as honest as possible whilst also holding back quite a lot of the truly darkest details. I’ve tried to raise awareness to … Continue reading Covid Diaries. First Imagine This.
A few weeks ago, I was asked if I’d like to do a remote interview with the media company Fifth Frame to explain the impact of coronavirus on our family whilst living with a vulnerable child post cancer treatment. I got involved; have a listen. #stayhome
Dylan’s cancer treatment is over. It took 1188 days. He had 1514 doses of various chemotherapies, 27 lumbar punctures, 35 anaesthetics, 440 doses of steroids, hair loss x 2, several blood & platelets transfusions & a plethora of other meds, underwent multiple scans, biopsies, surgeries, injections, endoscopies, physio, weekly blood draws & he’s missed over … Continue reading Waiting For Normal pt.2
This end of treatment antechamber is suffocating. There’s a vast array of permutations to navigate & it’s all just so overwhelming. I’ve tried & tried to write them all down but the plethora of emotions that each one brings to the surface is blocking my ability to communicate. So I’m going to tackle the emotions … Continue reading Why I’m Not Jumping For Joy
It’s not often that I’m lost for words but sometimes there are situations that just render you speechless. This is Lilwen, Dylan’s beautiful classmate. She was diagnosed with Ependymoma (a rare type of brain tumour) when she was 3 years old. She relapsed in January 2018 & underwent her second brain surgery & then chemotherapy. … Continue reading The Reality
I’m starting to feel like I’ve said it all before, of course I haven’t said everything but it’s been nearly three years of living with Dylan’s cancer, the side effects, the knock on effects, the life altering perspectives & the complete lack of control & helplessness. The repetition on paper of how our life has … Continue reading Liminal Space
Last Tuesday I was privileged enough to be part of panel in a live streaming event hosted by the lovely Avril Chester for Cancer Central in London. Five of us were given the opportunity to openly discuss the effects of being a carer to someone with cancer. Whilst our situations were all very different it … Continue reading Supporting Your Loved One Through Cancer
Part Three: "This Will Never End". “What is your greatest fear?”, she asked. I said nothing. “Write it down on this piece of paper & then I want you to look at what you write for a whole minute”, she said. So I did. “This will never end”, I wrote. She then gave me a … Continue reading Clinical Psychologist
Part Two: "Dropping the Anchor". In August 2018, I wrote an Instagram post using being "all at sea" as an analogy. I wrote about occasionally falling overboard whilst navigating the endless ocean of childhood cancer; I wrote about the small supportive flotilla constantly sailing nearby; I wrote that I thought I could see a shore … Continue reading Clinical Psychologist
Part 1: "Trauma Journey" I've stopped & started trying to write over & over again for months now. I feel like I've been standing in a blizzard & whichever direction I turned I couldn't see my hand in front of my face. It has taken me months to start separating my emotions, months to start … Continue reading Clinical Psychologist
Something’s changed, I guess it had to & in all honesty I knew it would. I have learnt that there is only so much you can take before you realise the path you’ve been crawling along up the never ending mountain for the last couple of years can only get you so far. Along much … Continue reading I Have Learnt
A couple of weeks ago a reporter from WalesOnline contacted me, they wanted to know how Dylan was doing & asked if they could do a follow up piece on the article that we did for the Mirror in the summer about Dylan’s cancer diagnosis...that article was subsequently published & printed in many hard copy … Continue reading A Follow Up Interview
A year ago today I wrote my first blog post Waiting for Normal. It is nearly two years since Dylan was diagnosed with b-cell progenitor lymphoblastic lymphoma & I can safely say that every single word of that first post still stands. Life has continued. Although there really is now no way of telling what … Continue reading Still Waiting
"Anything is possible if you've got enough nerve". J K Rowling. Ruari is 18 months old in this photo & I remember exactly where we were; now he’s 19 & I can’t believe where the time has gone. The other night he told me that he’s finally taken the leap & booked his flight to … Continue reading Anything is Possible
I never knew that raising Ruari would prepare me for so much of what I'm dealing with now. I swam against the tide alongside him for so long & in doing so we both nearly drowned on several occasions. At the time it seemed so hard but I would do the same thing all over … Continue reading On Life’s Terms: Milestones & Expectations
September was Childhood Cancer Awareness Month (CCAM) & instead of writing a blog post I (along with many others) decided to "Glow Gold" & raise awareness by dedicating my Instagram page to highlighting specific details pertaining to some of the individual elements that Dylan & other children like him have had to endure since their … Continue reading September: The Trigger
There has been a bit of news about new cancer therapies for children recently which is of course great news. However we can’t ignore the fact that historically childhood cancer has received very little attention; it still has a long way to go. The following is taken from an article written for the Telegraph in … Continue reading Treatments & Funding
“CCLG parent survey reveals the emotional impact of childhood cancer.” https://www.cclg.org.uk/news/cclg-parent-survey-reveals-the-emotional-impact-of-childhood-cancer I read an article by The Children’s Cancer and Leukaemia Group; it highlights many of the daily feelings that most parents & carers experience after a child is diagnosed with cancer. We have been unbelievably blessed to have had fantastic support around us since … Continue reading Emotional Impact
It is September, Childhood Cancer Awareness month & not for the first time I am reflecting. I am reflecting on whether there was any other way I could or should have known that Dylan had cancer. I look back at photos up to three & a half months before his diagnosis & I now know … Continue reading I Reflect…
Humour has always been a huge part of my life but the day that Dylan was diagnosed I left a large part of myself at the door to the oncology ward, taking only the essentials with me as I took my 6 year old boy’s hand & walked him down the long corridor to Room … Continue reading Humour & Humour
One full year in Reception class & then the first term of Year One. That was the sum total of Dylan’s school life before he was diagnosed with cancer. He had turned six just six weeks before life as we once knew it came to an horrifically abrupt stop. The kind of stop where the … Continue reading The Play Date
Cancer does not always look bald & pale & sick. In Dylan’s case once I had realised what the huge swelling protruding from the side of his face was it did not take long for him to look exactly that; bald, pale & very sick. It took a good three weeks before his hair started … Continue reading Never Judge A Book By Its Cover
A while ago I was asked by Macmillan Cancer Support if I’d be interested in doing an interview about Dylan’s illness to run in conjunction with the 70th anniversary of the NHS. After a bit of thought I realised it was a no-brainer. The opportunity to praise the institution who have thus far saved my … Continue reading A Second Chance
On the 16th of December, (the date of the appointment my wonderful GP had referred Dylan for) in the early evening & just before we went home, having spent the entire day in the dental hospital trying to work out why Dylan had a swollen cheek we were introduced to a senior paediatric consultant. He … Continue reading The Mainstay & Co.
This article was written by another oncology parent (Louise Lear-Jones) for the Huffington Post in an attempt to expose some of the harsh realities faced in the world of childhood cancer. It is a difficult read but highlights many of the sad real life facts that children with cancer & their parents have to face. … Continue reading The Reality Of Childhood Cancer Is Nothing Like You Think It Is
The other day I reread my very first blog post “Waiting for Normal”. I read it because I have had a trying few weeks & a lot of the emotions I wrote about then are still very much at play. I have spent the last week sneaking off to the bathroom to cry or going … Continue reading Screwed Up
In December 2016 Dylan joined a club that no one wants to be a member of & consequently I immediately became a member too. It comes with a lifelong membership & it costs more than any club I have ever known. I’m not really a fan of clubs, preferring to do my own thing in … Continue reading The Union
Just a quick update after my post "Scanxiety" & for those of you who don’t follow me on social media: Last week when Dylan went into hospital for his vincristine no.20/44, the consultant read us the entirety of the results from Dylan’s MRI scan on 27.4.18. She told us definitively that the only problem with … Continue reading A Bit of Light in the Darkness
Whilst I know that it is cancer that has put us in this insane predicament I am acutely aware that the side effects are often the part that make us stare endlessly into the abyss of doom...the shadow of potential death never leaves after the word cancer is brought forward because if we aren’t worrying … Continue reading The Blood Count
On Friday Dylan had his fourth MRI scan. It was of the entirety of his head & spine. He has been struggling on & off with back pain for the best part of a year. Initially the consultants thought it was due to his steroids (dexamethasone - which does cause him pain) but as time … Continue reading Scanxiety
So some of you might already know that on Friday 20th April my beautiful little sister Abi got married to the rather wonderful Jamie McGowan. From the very beginning of their relationship which started fifteen years ago whilst they were both at university these two glorious people have carved their way through the world as … Continue reading Days Like These
Mindfulness is not a direct path to peace & love, far from it; more often than not it feels as though I'm negotiating some very unforgiving terrain & there is no level ground in sight. I’m really struggling at the moment, it’s a combination of cancer related factors but my thought process is rather irritatingly … Continue reading My Mindful Anger
Once Dylan became an outpatient we were introduced to the Beads of Courage programme. Beads of Courage is sponsored by the charity Be Child Cancer Aware & was started in the USA in 2004 & in the UK in 2011 in order to help children with serious illnesses. They offer support with emotional and social … Continue reading Beads of Courage
Fact: I do not need reminding of how far Dylan has come, I see it for myself everyday; but to have written certain details here serves as a stark reminder that everyday since his diagnosis has been nothing short of a miracle. Sometimes when I sit down to write these blog posts I struggle to … Continue reading Facts & Stats
If you have not got children then just try to imagine the thing that is most precious to you being held precariously over a raging volcano whilst you watch helplessly knowing that there is absolutely nothing you can do to prevent the fall if it happens. Knowing that either way fall or no fall, everyone … Continue reading Dreams & Nightmares
For months after his diagnosis Dylan was inundated with gifts. We spent Christmas in hospital & before Christmas Day had even arrived his room looked like Santa’s grotto. Initially there was no time to consider the impact of a continual stream of presents & treats but it did not take long for me to realise … Continue reading Consistency: The Battle
“Never tell anyone that you’re depressed, especially the doctor. It will go on your record, you’ll never get a job & it will be used against you.” The antiquated unwise words of my mother years ago when I was in my teens. A generation of stiff upper lipped misinformants has created a generation of people … Continue reading Don’t Sweep It Under The Carpet
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 … Continue reading Rip Up the Rulebook
I have just finished a course of steroids due to an aggressive breakout of eczema. Stress triggers it. I have been waiting for it to arrive for over a year. I woke up one morning & both of my ears were red, swollen, hot & chronically itchy & very quickly it started to spread down … Continue reading Timshel
There is a vast network of cells within Dylan that basically started behaving abnormally & growing in an uncontrollable way. This network has created havoc within his body & consequently our lives. One of the many dictionary definitions of the word network is “a group or system of interconnected people or things”. Networks can be … Continue reading The Network
One evening just over a week & a half ago I receive a text message just as I am about to walk into my local supermarket. As I read the message my legs go weak; then as what I read is confirmed to me in a subsequent message my legs give way completely & I … Continue reading You Can’t See It
Tomorrow morning is the last dose of steroids for this month. Until April 2020 Dylan will take dexamethasone twice a day for five days every month & frankly it would be an understatement for me to say that steroids are a test of everyone’s patience, strength & mental wellbeing. Dexamethasone is a steroid that is … Continue reading Love But Mostly Hate
I am so tired. At the start of this journey I spend every night next to Dylan in his hospital bed until he is allowed home; fifteen nights lying next to my little boy who has just been diagnosed with cancer. I do not really sleep, I have become hypersensitive. I watch him throughout the … Continue reading Running on Empty
Dylan is due to have his eighteenth lumbar puncture to receive the drug methotrexate intrathecally this Wednesday. He will be given his twenty sixth general anaesthetic, a needle will be inserted into one of the spaces between the bones of his lower spine & the drug will be injected in order to prevent cancer cells … Continue reading This is Chemotherapy
Well, it was not the start to the New Year that I had hoped for. On 4th January 2018 Jill Williams, Nick’s mother (Dylan’s grandmother) passed away. She had non Hodgkin’s & Hodgkin’s lymphoma & as I mentioned in my previous post had been battling cancer on & off for the last twenty years. Recently … Continue reading A Dark Day
This tightrope stretches across the deepest abyss, into a blinding & indeterminate blizzard. The strength needed to walk it is phenomenal; it requires constant micro managing of reality versus my mind. I feel as though I am no longer myself, I have to focus hard in order to behave as rationally as possible for my … Continue reading The Tightrope
Two days ago marked one whole year since we first found out that Dylan was seriously ill. It is the day that a line was drawn, a line that marks life before cancer & subsequently life with cancer. The infinitesimal details that mark before & after are now forever etched firmly in my mind with … Continue reading The Diagnosis
Dylan is six months into his cancer treatment going through the bit called “delayed intensification”. He has recently had two rounds of chemotherapy, is on two different anti sickness meds & has just started steroids. He is groaning in pain in the back of the car which I am driving to take his then seventeen … Continue reading Picture This:
As a youngster my eldest son Ruari showed little interest in any type of make believe kingdom, he was the kind of child who knew Mickey Mouse wasn’t real from the day he was born, he detested Harry Potter & he hated any type of fairground ride with a passion beyond anything I could explain … Continue reading The Truth About Build-a-Bear
Quite simply cancer elicits very exacting, black & white choices: take the treatment & hope for life versus don’t take the treatment & lose hope. In truth cancer doesn’t always allow the luxury of choice, often it just takes over & leaves you with no hope at all. We were lucky we had the opportunity … Continue reading C is for…Choice
There’s a loneliness that comes with cancer. Something that is difficult to convey to those who have not seen its sheer unforgiving devastation first hand. The angel of sadness sits on my shoulder everyday. Sometimes I walk around the supermarkets & shops wondering if I should just tell people that my son has cancer & … Continue reading Waiting for Normal
The Little Big C 