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The Little Big C

The Little Big C

And me: the mother of a child with cancer

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Tag: #cancer #childhoodcance #trauma

Clinical Psychologist

June 2, 2019June 2, 2019 ~ thelittlebigc ~ 4 Comments

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

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“It is great testament to the human spirit, we must continue to rise after adversity, as I truly believe this is where our biggest life lessons are learnt. The world will not save you. You will save you. You will find from your darkest depths, your most guarded shadows, a power to get through”.

Maya Angelou

Recent Posts

  • Liminal Space November 26, 2019
  • Supporting Your Loved One Through Cancer November 24, 2019
  • Clinical Psychologist July 21, 2019
  • Clinical Psychologist June 30, 2019
  • Clinical Psychologist June 2, 2019
  • I Have Learnt December 30, 2018
  • A Follow Up Interview December 28, 2018
  • Still Waiting November 20, 2018
  • Anything is Possible October 31, 2018
  • On Life’s Terms: Milestones & Expectations October 22, 2018
  • September: The Trigger October 7, 2018
  • Treatments & Funding September 13, 2018
  • Emotional Impact September 12, 2018
  • I Reflect… September 2, 2018
  • Humour & Humour August 19, 2018
  • The Play Date August 5, 2018
  • Never Judge A Book By Its Cover July 23, 2018
  • A Second Chance July 13, 2018
  • The Mainstay & Co. July 1, 2018
  • The Reality Of Childhood Cancer Is Nothing Like You Think It Is June 18, 2018

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It only seems like yesterday that I was yelling at his dad in the car on the way to hospital at 4am because the petrol indicator was flashing empty & all I could think was I’m not having this baby in the footwell! He arrived 4 days late & he was tiny. I remember congratulating myself when he turned 18 for just keeping him alive. He was the most patient, loving & empathetic baby & child, calm & laid back...he still is, it’s just that he’s the man sized version now. A few months ago he told me that if he’d had the chance to meet his teenage self he’d have pushed him up against a wall & knocked some sense into him 🤣...he was a pain in the arse between 14 & 17...a proper 💩. I spent a large chunk of his teenage years looking at him & thinking “who on earth is this imposter” & then suddenly he just reappeared ! I pinch myself when I look at him. I can’t believe he’s mine. I can’t believe what milestones we’ve reached together & now he’s carving out his own life step by step. I’ve raised a child who is confident enough to take himself off to the other side of the world alone. Who has the grit & determination to endure life’s challenges with dignity. Who has the mind & strength to make huge life choices independently & who has a heart of absolute gold. It’s almost a year since he traveled to the other side of the world to play rugby. He returned earlier this year to attend his father’s funeral & then flew back to New Zealand & I’m so proud of him for doing so. I’m so proud of him full stop. Today, Ruari & his girlfriend are moving in together. He’s applying for a visa to stay another year & then he wants to apply for residency (it’s still sinking in). I keep patting myself on the back & shaking my head all at the same time. He’s happy & that my friends, is all that any of us want for our children. #thankfuckforfacetime #holidaysinnewzealand #mightmovetheremyself #cantbelieveanyofit #ilovehim #ikeepcryingandthensmiling 🖤
Two years ago this month, Dylan had surgery to have his double lumen Hickman line removed & replaced with a port. He’d had his Hickman line for just under a year & with a treatment plan spanning the best part of 3.5 years, there’s just no way given the choice that he’d be able to continue trying to get on with “normal” everyday stuff with it protruding from his body. It prevented him from doing so much...even a bath had to be really shallow because we couldn’t get it wet. It was a massive infection risk which is eventually what instigated the procedure. After several ridiculously high fevers & an emergency admittance to the Royal Berkshire (whilst we were on a long weekend at Legoland...we’re not very good at getting away for breaks 🙄) he was given a new method of having intravenous chemo. It means that he now has his weekly blood tests via a thumb prick & for 2 years he’s had to endure having a 3/4 inch gripper needle piercing his skin to access the port. Surgery took a lot longer than scheduled because they couldn’t get the line into his vein...hence the two incisions. He’s been really anxious having his port accessed lately because a few months ago the nurse couldn’t get the needle into it properly...it took a few attempts, his pain was clear through his screams & now he anticipates the same thing happening every time a nurse goes near him. I reminded him about his Hickman line the other day, about how much he hated it & how painful the allergy he developed to the dressing was. Despite now being really distressed about having his port accessed, he agrees he’d much rather have it over the Hickman line any day, a fact he reiterated just one week after his surgery...look at him 🖤. These kids, their endurance levels, their grit, their stamina...if as adults we can’t learn something from them then what is there...really? He has no choice. There is no option. #livingwithcancer #childhoodcancer #humbled #scaredbutthankful #lookathim #tearsinmyeyes #itfeelsgreat #myboy #superstar #mydylan
Today Dylan has vincristine no. 40/44. My heart thumped hard writing that. Looks like the countdown is on. I’m fine (🤯). . (Another clip from the live streaming event last week with @cancercentraluk ). . Also...the #nhs ...can we seriously just take a moment...three years keeping my boy alive...we need to look after them they way they look after us ♥️... . #livingwithcancer #childhoodcancer #imfineistheeasiestanswer #vincristine #fortyfourdown #fourtogo #steroidsstarttoday
Liminal Space. . 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 been for so long is mind numbing; the stagnant options are claustrophobic.
Each month, the same thing happens (aside from all the “extras” on top of Dylan’s treatment plan) & I feel like I find myself recounting the same tale over & over again. .
The repetition of our existence within this holding pen doesn’t make the acceptance of Dylan’s cancer diagnosis any easier, this has been our way of life for nearly three entire years & for me mentally it still feels as though we are living in perpetual confinement, but in the same breath its repetition is now familiar in a darkly comforting kind of way. . New blog post: link in bio 👆🏾. . #thelittlebigc #liminalspace #childhoodcancer #childhoodcancerawareness #livingwithcancer
Supporting Your Loved One Through Cancer. . Last Tuesday I was privileged enough to be part of panel in a live streaming event hosted by the lovely Avril Chester for @cancercentraluk 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 would seem that many of our experiences are exactly the same. This stepped beyond the realms of childhood cancer & demonstrated quite clearly that no matter what age the cancer patient is, the deep sense of fear & shock is something that all of us as carers share. It was clear to see that the depth of emotions experienced by the carers just within the hour long chat was raw, painful & utterly character changing. . It is often so difficult to explain the complexities of a cancer diagnosis & whilst we would never want to take anything away from the patient, the sense of helplessness as a carer is often completely crippling; the continuing mental turmoil is torturous. It’s a world we would wish on no one & it is a world we will never escape. I came away with a sense of deep solidarity & respect; I am not alone. The hope is that others might listen to this & also know that they are not alone either. . Link to the full chat is in my bio. . #livingwithcancer #cancercarer #supportingyourlovedonesthrough cancer #cancercentral
World Children’s Day. My world; my teachers. #myboys

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