The End of Treatment Scan

So yep, this is The Big Scan.

We came ‘home’ to GOSH yesterday to have our radioactive injection. After a few hours of assessments we proceeded to put a cannula in. This hurt. We then had some more checks and went to have our injection downstairs. This was supposed to sting badly. Our nuclear medicine team were great and she coped very well. She is now radioactive.

Daya loves Fireman Sam. She likes Peppa pig and Ben and Holly too. But she loves Fireman Sam…everyone who comes in ends up watching it with her…

Today I woke up very early. 3am. Here we are back to that familiar room you saw us in during 2017…everything is the same except that this child has been through many battles to try and win this war.

She’s Nil by Mouth and under GA today.

I think we are going to be fine.

She loves the big screens in nuclear medicine. They already knew about her love for Fireman Sam and had him lined up. She didn’t stop talking. It was amazing for her to see it so big and loud and fun to watch.

Now ….

I met Tom Hardy today. The conversation went like this:

Tom Hardy: Hi…I’m Tom Hardy

Me: Um…that’s a good name! We were just talking about Tom Hardy!

Tom Hardy: Yes it leads to perpetual disappointment…

Me: *silence* (I shall neither deny or accept or respond to that comment)

Tom Hardy was the name of our anaesthetist. He’s a lovely chap. He’s also now into Fireman Sam…

After the scan I told him he was probably one of the most thorough anaesthetists we have ever had. He gave so much detail and input all the way through it was astonishing.

He went quiet, paused, looked at Daya and said, ‘I have a child the same age. I can’t imagine what you are going through and have been through. I read the notes’.

He was a lovely ‘Tom Hardy’.

I got a post scan treat for Daya…

Support from a fellow parent, who fully understands what you are going through, is priceless. During Daya’s scan I went to visit two mums. One has a child going into palliative care and the other has relapsed. I also bumped into some of our favourite nurses. They lifted me up. They are such good decent people. Our nurses at the local last week were the ones that got us through a shitty time.

Daya came back from the scan ‘like a boss’. I went to recovery to collect her. We had a cuddle. And then she directed us back to the ward. Whilst she was away, I made plans with a doctor for some of her next steps over the coming week. Never a wasted moment.

We had two lovely mums visit us one after the other. Both have recently lost their young children to cancer. Both were solid, beautiful and lively. Full of grace and warmth whilst dealing with a grief that comes in waves. This, their visiting us, is love.

And we finished our day with another true love. These two go back to the beginning. It was awesome to see Jenny at the beginning and the end of this day.

And we found a fire truck in the corridor on the way out!

We chilled and listened to our music on the way home. I am exhausted.

Time and Feelings

“How do you hold it together so well?”

I’ve felt enough. I try not to feel anything I don’t have to. I like to stay calm and present. I have every intention of enjoying life with my children.

A mother, who’s child has relapsed, and I were reflecting on the things we have seen and I came out with the following…

The love and the hurt, this whole process, all of it really just boils down to Time and Feelings.

Put aside how someone looks. Put aside the variable of blonde, brunette, skinny, obese, male, female, tall, short, kind, bitchy, secure, insecure…put all that judgement and attraction aside and you are left with time and feelings. How much time you spend and what you feel. That’s all everything comes down to sometimes. The behaviour of others can no doubt have an impact…but it’s time and feelings.

I am also just too tired to care about minor things.

So I’m planning to use the Time ahead to create some warm fuzzy feelings….

Once Daya’s central line is out…we will have more freedom of movement. That’s when the fun and games will begin.

Whilst treatment is over, she has had a lot of damage done to her insides. They have been burnt up by the chemotherapy. We were told to wear gloves when changing her nappies so as not to damage our skin. Surgery was huge and intense. She’s had lots of infections which have amounted to a lot of antibiotics. She looks well. Her hair is back. She’s thinner than she should be. She’s funny and soft. She’s weak and light. The road to recovery is going to be a long and demanding journey but hopefully the worst is over.

They don’t just magically become better once the hair grows back. Her taste buds are damaged. Her teeth, her organs, her skin, her hair is falling out again and she has grey hair, her hearing will be tested, her gut remains sensitive. But she is here.

Use your time wisely and keep your feelings in a good place.

A moment

Dear Reader

“You couldn’t write a story like this!”

Thank you.

I’ve laid my heart bare on this blog for over two years. You’ve come and read it. You’ve cried and laughed. You’ve read my heart and everything it contains. You’ve said I’m brave. You’ve said it’s raw, it’s too much for anyone, it fills you up and it’s give you perspective. Some of you have said it’s changed your life.

That was never my intention. I started this as an easy way to update everyone who might care in one place. In doing so it killed all the conversations we used to have for a while. I got sucked into the world of childhood cancer. People stopped talking because they were reading. Those that cared still made contact because I guess they know they are in my heart no matter where I am and I am in theirs.

This blog had saved me. I never re-read it and I don’t think over and over again about what I type. It’s written without fear of judgement about the most fear-filled things. It contains an open and deep love that has touched you. For this I am thankful.

“You sound just like your blog in person”

I’ve heard from other oncology parents that it has made them feel less alone and that my ability to articulate our shared pains has spoken volumes to them. They have shared the words that they cannot speak with family and friends.

I’ve met strangers that know my face and my daughters names. They have shown love and concern for a child and mother they have never met.

Thank you for reading. Thank you for, for a moment or many, allowing me to touch your hearts.

Most importantly, thank you for taking something from this painful journey and turning it into a positive for your own lives.

This, all of this, is love.

If she makes it or not, for this moment in time, we are all here right now.

with love, and deep gratitude,

Pam

Brief update

I haven’t been able to bring myself to post an update. It’s been an awful week. Things went wrong very quickly through no fault of Daya’s. As a parent you have to be alert. When you aren’t listened to and things go wrong, everyone else can walk away but you have to pick up the pieces. You have to deal with the aftermath. My life doesn’t work in shifts. It’s non-stop constant. No we don’t get breaks. I don’t get any respite. I haven’t for years. I’m drained by all of this.

This has been one of the worst weeks in a long time.

I’m struggling to pick myself up this week. Im exhausted in every way. I’m treading water not surfing the wave. And all the things that need doing continue being done are happening too…

Part 1

She’s got worse and we started IV antibiotics after the original ones didn’t work. She was too hot so we had to strip her down. She’s had an X-ray. She has been spiking temperatures through the paracetamol.

She’s looks weak and lethargic. The most painful thing is that she is silent. She’s lost a lot of weight.

She’s now with her Daddy for a night and I’m home with the other two and have been going back and forth. I couldn’t stay as I was sick too.

The strain is showing on all of us.

This weekend;

Anaya and Jasmine having some sibling cuddles in the morning.

Daya didn’t make a sound when I went to see her. She was upset.

Part 2

She’s improving. She’s sitting up and talking and messing about. She’s had flu and a cold at the same time.

I’ve been staying in and Daddy has been at work and home.

For a variety of reasons I’m going to keep this brief. I can honestly say this has possibly been one of the worst stays we have ever had for all the inexplicable and wrong reasons. Our nursing team and consultant have been great. We met our lovely dietician and Daya had fun with her play lady.

The rest of the situation was utterly shocking and destructive. We could have been home earlier.

Our consultant who joined on Monday was thankfully on top of everything; which is so important when you’re a parent at the mercy of everyone else and have already experienced incompetence.

There is a part of me that has always wished I was a less caring individual. That I had less kindness in me and that I was far more dismissive of other people and their behaviour. My litmus test for life appears to be kindness. I wish it had been something else. You do need to be a lot harder than I am to survive this life with less wounds. I’d rather have a Teflon coating such that a stab is a scratch and not a wound…a bit like Batman’s outfit. I wish I was harder than I am, maybe I would hurt less.

I hope to never relive that experience.

Also, in the last 24 hours

It’s so fucked up. How many other people can reel off names of children they know who have died??!! Seriously. How do we pull ourselves out of this?

May, Oncology Mum, October 2019

In the last 24 hours this has also happened:

– a friend’s son had a seizure and has been moved to intensive care.

– another’s child went through 5 different scans and procedures on her birthday and is sick with fevers and losing her hair quickly

– another family scattered their child’s ashes

– another family collected their child’s ashes

– a friend, whose son has just finished his bone marrow transplant, reported that her mother’s cancer has just relapsed

– another family are heading to palliative care

– another family have got the all clear

– a sibling, of a child who has passed away, sent Daya a get well soon message. I smiled.

– a friend who has had radiation has taken his son home as it’s ‘only a matter of time’

We are all a bit stunned by these recent events.

I know of 16 kids that have died since January 1st 2019. We, by we I mean oncology parents, have normalised this to some extent.

May: how do we pull ourselves out of this?

Pam: Maybe we are just above all the bullshit…but I’m also tired of treading water.

24 hours

How quickly things change in the world of oncology…she’s sick. We are at our local hospital …She’s not been feeling well. She’s lost half a kilo in under a week and a half…

She hasn’t even had a chance to play at home.

She’s been quiet and subdued. She has a rasping, painful cough and has a temperature. She’s too weak to fight it unlike the other two. We hope it is just something viral.

Always by your side my love. Always.

Can’t tell you how shit this existence makes me feel. Watching you suffer, and you have suffered so much, makes me feel completely helpless and redundant as a human being. One day this will be far back in our history and we will be somewhere else building a different future in all the small beautiful moments…just get through this now…and yes often it does feel as though it’s one thing after another…

I slept one hour last night. Held sick bowls. This morning she spiked to 38.5 so we dashed to the hospital. Anaya too.

“So what do you do when you’re in, have you got a Netflix account?”

We cuddle, change nappies, hold vomit bowls, talk to nurses, make tea to stay awake, tidy up, wash vomit soaked clothes, give meds, put up feeds, discuss issues, formulate plans and maybe there will be five minutes to close your eyes before bedtime…

“You look tired!’

Yeh, well done, Sherlock, well done.

I kept watch as you kept coughing, even in your sleep. I started and paused your feeding pump regularly. I’m now sick too.

The things I’ve missed

It’s all here. My three little hearts running around, fake crying, dancing and snuggling up.

I’ve been cooking, going on a bear hunt and looking for muddy puddles in the rain.

Snuggling in my lap at 5am to watch Ben and Holly after a huge vomit.

And then snuggling from 6am with two and three by 7am. I cannot recall the last time I had snuggles on the sofa in the morning with all three.

Watching a sleepy Jasmine devour and enjoy a magnum ice cream.

Watching them play at home and getting in my cuddles and kisses. Daya is struggling with her health issues and with the noise.