talkhealth Blog

Sean’s brain tumour was discovered in late Easter this year. It was diagnosed as a Pilomyxoid Astrocytoma, a low grade tumour.

For those who don’t know what this means, I’ll explain. The World Health Organisation categorizes tumours as one of four types. Types one and two are low grade, scary, but with a better prognosis than types three and four. That is not to say treatment is a walk in the park.

Sean’s tumour type is a type 1-2, most Astrocytomas are PILOCYTIC, and a type 1. Sean, being the difficult beggar he likes to be, had to go and get himself a PILOMIXOID Astrocytoma, a variant which is a little more tricky and needs slightly more aggressive treatment.

So yes, although Sean has a low grade (benign) tumour, he does still have cancer. I have to write this because I didn’t fully understand and I get asked that question a lot. Medical staff are extremely reluctant to use the C word to parents. So far though, the prognosis is good as this type of tumour generally responds well to treatment.

Up till now, Sean has had three debulking surgeries, which have worked well to reduce the tumour size. Unfortunately, the little that remains after each op has a little artery running through it, so complete removal isn’t an option. The teeny tiny bit that’s left, is quite tenacious and keeps regrowing, at a fairly rapid pace, so it’s been decided to chuck some chemotherapy at it. The chemo is set to last eighteen months, divided into three phases.

Phase 1, the induction, is ten weeks long. Two drugs will be given once a week for ten weeks. Phase 2 will be three months long, with the same two drugs given once a month for three months. Phase three will last the rest of the eighteen months, and the drugs will be given on a three week on, three week off timetable. The drugs Sean is going to be given are Vincristine and Carboplatin. If you’re interested you can look them up on the cancer research uk website, the list of side effects is awful.

As a family, the plan is to do as much of this here in Southampton, I’ll be here with Sean, hubby will be back home in Belgium, carrying on with work and trying to maintain some sort of normality for our three older boys. He plans to come over as often as possible for Phase 1. After that, Sean’s health permitting, I will move back home and just travel back with Sean for treatments. Right, that’s the background and plan of attack. I’ll be writing this journal to keep friends and family updated.

BATTLESTATIONS!!!!

FEELINGS

Well that was written two and a half years ago. Things didn’t work out quite according to plan, but I’ll get to that in time. I began to keep this journal after Sean’s third tumour debulking operation, just after the white coats had told me that our next option was chemo. (When I say white coats, I’m actually referring to Sean’s extremely charming neuro-oncologist Dr Gary, otherwise known as MR GOD)

Sean and I were on the neurosurgery ward at night with Sean asleep while Dr Gary explained what was going to happen to my baby boy. I’d never felt so alone and so overwhelmed and so terrified. CHEMO! I knew nothing about it having never known anyone with cancer. I think all my ideas about cancer and chemo were garnered from books and the tv when despite a heroic effort on the part of doctors and a noble battle from the hero, he/she usually waste away and ends up six foot under.

I remember telling myself “just listen, you can fall apart in private later, but for gods sake, listen to the man” As he sat there reeling off protocols and drug names and time frames and about central lines and side effects all I honestly wanted was a number. Sean’s percentage chance of survival.

I’ve spoken to a fair few cancer parents and sufferers and that number can be an obsession. No doctor in his right mind will say at the outset of treatment whether it will work and you will live or die, but if you listen carefully they sometimes let slip a percentage and at the beginning, when the learning curve is immense, a number is something you can understand immediately.

At that time Sean and I were alone. Hubby was in Belgium and to be honest, neither of us was expecting this hospital visit to be anything more than ANOTHER debulking, and then home in a couple of days. After Dr Gary left I wanted to scream and cry and tear down the fricking hospital bed curtains that promise privacy but seem to amplify any noise. We were sharing a teeny tiny ward with three other people who had probably overheard every word of ‘the talk’ and were probably waiting to see how I handled it. I wanted to smash stuff. And take my baby and run and hide. How dare he talk about turning my beautiful, shiny boy into one of those bald, wasted, husks that look like they’ve stumbled out of a Nazi death camp? How bloody dare he. The man obviously got his qualifications in a Christmas cracker!

I don’t know if other parents feel similar emotions. Everyone talks about the fear and the worry. Because those are expected. No one has admitted to rage and guilt and pain. I did trust the Doctor. I understood Sean’s chances were pretty good, but the animal in me just had ‘fight or flight’ in mind.

The whole, falling apart bit never happened until much further down the journey. I’ve never considered myself to be a stressy sort or overly given over to emotion. I pride myself on hiding my feelings in public and being the calm one. Oh boy was I going to be tested. I have been criticised for being too blase and cheery through it all. That was my public face.

I mentioned feeling pain. It wasn’t just mental. It was an actual, physical pain. I felt as though I’d been punched in the heart with a steel fist. That pain in my chest and feeling of suffocating never quite left for the entire eighteen months of chemo. To be really honest, even now, a year off chemo it wanders in and out of my life. Any time Sean says he has a headache, or feels tired, it rises up and threatens to floor me. Sometimes even looking at him now, healthy and plump and bouncy it taps me on the shoulder to let me know its there. Other chemo parents say it never goes. Parents of children five years off chemo say its always there.

Guilt I mentioned too. Academically I KNOW I did nothing to cause Sean’s cancer. But why didn’t I see the signs earlier? Why did I trust the initial diagnosis? Why, when I suspected that diagnosis didn’t I fight harder? Why did I fail my son? I’ve never really asked my husband if he felt this way too. Maybe he does. Maybe he blames me? If he does, I can’t handle knowing that so I will never ask him. When Sean grows up will he blame me? Will he realise I failed?

If this all sounds a bit heavy and negative bear with me. Cancer is an evil bitch and bad stuff happens but as I’ll share over time, some amazing and beautiful things happen too. At the beginning it feels black and this is just the beginning of our story.

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NecessaryEvils

When my son Sean was diagnosed with a low grade brain tumour three years ago at the age of two, I began to keep an online diary. Initially it was a record for him to read in later years, documenting his journey so that he would understand what happened to his body, his family and his future. It often became a space for me to bitch, cry, pray, laugh and reach out to an anonymous soul on a screen somewhere on the internet. Sometimes it's easier to let yourself open up to a faceless being rather than a caring friend, a loving spouse or professional support worker. We are an Air Force family which added its own complications and especially as my husband was serving in Belgium and looking after our three elder boys whilst trying to support us over the phone with flying visits when his duties allowed. I plan to revisit my diary, sharing excerpts with you and expanding and explaining the content.