Inbetweeny

I haven’t written a blog post in ages, so I think it’s time for one.

Many of my blogs have been about trusting God in the really difficult times, or being thankful for the good things.

I don’t remember having written many inbetweeny posts. For those without access to a dictionary, inbetweeny is where things aren’t great and things aren’t horrendous. They are just inbetweeny. I guess that for most of us, with the notable exception of Calamity James, a large percentage of us spend most of our lives in this zone.

So, you may not know that I have been some some health problems for the last few months. I do not believe that they are in any way related to my cancer history, but it has still been unpleasant and draining.

Recently I had some investigations, which included biopsies. The nurse said that one of them was not routine. When you hear those words, some small alarm bells are set off.

I want to say that I am not anxious about this, at least 99% of the time. Having cancer has taught me to give over all this sort of stuff to God, and sharpish. I have learned that I can trust him, no matter how bleak the circumstances. So the last thing that I need to hear from anyone is ‘Be anxious for nothing.’ Thanks dude, but I learned that one the hard way and I don’t need your well-intentioned judging.

That said, show me someone who says that they never get worried about anything, and I’ll show you a liar.

And that’s what I mean by inbetweeny, because of course that’s normal. And it’s in the normal, the job stuff and health concerns and fun weekends and family times and business of life that we really need to learn to put God first. There aren’t many athiests on a lifeboat, and most of us are happy to thank God when life is awesome, but those times are just the bookends.

There are a whole lot of unreported stories, times that we may not photograph or share on Facebook, where we still, as Christians, need to learn to put God first. I’m good at trusting him with the big things, but I need to hand over all the small stuff to him too.

So that’s where I am at the moment: inbetweeny and learning to trust God with the everyday. And whenever I make the effort to focus on him, there he is with me, just like when I woke up after my operation nearly two years ago. Right in the room with us, where he always is even if we don’t notice.

 

 

World cancer Day

What does World cancer day mean to me?

Today is world cancer day, and I’ve been thinking about why the day

is important to me.

There are three things:

1) A chance to raise awareness.

A great thing about WCD is that is raises awareness of this disease.

Yes, people have heard of cancer, but do they know what to look

out for in their own bodies? Every cancer has different symptoms, but

if it encourages one person to stop ignoring that little lump in

their breast, or blood in their stools, or stomach pain that won’t go

away; if they get the kick up the bum to make an appointment with

their GP, which means that their cancer is caught early and can

be treated, then it’s worth it.

2) A chance to raise funds for vital cancer charities.

Cancer Research UK, Breast Cancer Care, and Macmillan are all

charities that I, along with many others, have benefitted from.

More research into prevention and treatments, more support

for those affected by cancer, and more political lobbying is needed.

3) For those who have lost loved ones to the disease,

a chance to remember them.

For those who currently have cancer; for those who will lose their lives

to it; or those who have lost health and time and joy to it, a chance

to reflect and be recognised. A chance to stand with others

and not feel alone.

A chance to unite.

Cast all your anxiety…

on him because he cares for you.

1 Peter 5:7

The night before Christmas

‘Twas the night before Christmas when all through the house

No laptop was whirring, nor a computer mouse.

The children were tucked up in their warm cosy beds

While dreams of tablets and scooters danced round their heads.

Mum and Dad watched a box set, on sofa sat

with hot chocolate, popcorn and Toby the cat.

 

A glass of milk and ginger biscuits on a plate

For a special guest on coffee table did wait.

“Let’s go to bed,” Mum said yawning, “it’s getting late.”

“Soon a visitor will be opening the gate.”

“Yes,” agreed Dad, “I have wrapped all of our gifts,

I’m glad my boss hasn’t got me working night shift.”

 

When the family were finally fast asleep,

In the garden landed reindeer without a peep.

And out from the sleigh that they magically lead,

stepped Father Christmas, dressed in white and red.

“Reindeer, wait here. I have some gifts to deliver.”

“I’ll be back soon. I see the snow makes you shiver.”

Then the jolly old man took out his magic key

and unlocked the front door slowly and quietly.

 

He was just putting our presents under the tree

When he looked up with a smile and spotted me!

I had heard a noise and crept slowly down the stair

And could hardly believe who I saw standing there.

 

“Sorry!” I gasped. “I didn’t know you were real.”

“I am!” He chuckled. “Will you join me in my meal?”

So we sat on the sofa and enjoyed our snack

While Toby purred happily on Santa’s lap.

“What’s it like, travelling round the world,” I asked

“each Christmas eve, it must be a difficult task?”

“I love seeing all of the countries,” he replied,

like Poland, Botswana, Japan and Paraguay.

People live in interesting homes, that’s for sure,

In tents, wooden huts, caves and on the sea shore.

All children are unique in such different ways

But with a love of toys and play, they’re all the same.”

 

I ate my crunchy biscuit and answered “Say,

I’ve never thought of it before in that way.

The other children might not look or talk like me,

But we all need fun, and the love of our family.”

 

 

“I must be going,” he said, “I have elf-made toys

To deliver to many little girls and boys.”

 

I looked out of the window to see the sleigh

With reindeers and Father Christmas, flying away.

I heard his happy call as he flew out of sight,

“Merry Christmas to all, and to all a good night!”

Jake’s diary

I recently wrote this story for Brighter Futures,  the Great Western Hospital charity that is raising funds for a new radiotherapy centre in Swindon. For more details,  see Brighter Futures Web site.

…

By Alex Dixon

Illustrations by Connor (age 10)

.

15 April

My name is Jake and I am 12. I live in Swindon with my mum and annoying little sister Rosie. I love football, X-Box and sketching. Mum works in a bank or something, and Rosie’s favourite hobby is winding me up. She also loves going to school, which is proof that she’s crazy.

Yesterday Mum sat Rosie and me down. She looked serious. Mum told us that she is poorly.

“I have cancer.” She whispered.

I burst into tears. Cancer? Cancer! I can’t believe it.

Rosie went quiet for a minute and then asked

“Are you going to go bald, Mummy?”

“Yes I am going to lose my hair, darling, but it will grow back again one day. When I’m better.”

“Maybe your hair will grow back blonde, like mine.” Rosie smiled.

“That would be cool.” Replied Mum.

I didn’t say much. After a while, I went to my room. I texted Sam to ask if he wanted to meet at the park, but he was out with his parents. I climbed into my bed and tried not to think. I fell asleep and woke up feeling angry.

Why did my Mum have to get cancer? She doesn’t deserve it. Why didn’t some nasty old person who kicks puppies get it instead of her? It isn’t fair.

I need to ask Mum something, but I’m too scared.

I went downstairs and pretended that everything was ok. I needed to be strong for Mum and Rosie. I need make sure they were ok.

…

16 April

It was a rubbish day today. The teachers kept telling me off for staring out of the window. I made a jokey reply to Miss Simmons, my English teacher, and she gave me detention. Just what I need!

When I got home, Gran and Grandad were there with Mum. I could tell that they had all been crying, even though they put on fake smiles when they saw me.

Rosie was playing in her room.

“Why aren’t you at work, Mum?” I asked.

“I’ve been signed off work for my treatment. I’m going to start chemo soon.” She replied.

“Oh.”

I sat down heavily on the sofa. Gran went to the kitchen to get me a drink. Grandad went to play Hungry Hippos with Rosie.

I looked at Mum. She seemed so well, so normal!

“I am going to be ill for a while, Jake. I might be sick a lot. I will be tired and might not be able to make dinner or do as much. But we’ll get through it, won’t we? And Gran and Grandad will help a lot too.”

Mum smiled but her eyes were sad.

“I can help with cooking and cleaning and stuff. I can learn how to do the washing. I’ll look after you and Rosie.” I said.

Mum started crying.

We went to a pizza place for dinner with Gran and Grandad. Mum said that she wouldn’t be able to go out so much when she was having chemo, because of the germs. When people have chemo they can pick up a bug or infection really easily, and can get sick. Sicker. We’ll have to start washing our hands all the time: as soon as we get home; before any cooking; after we sneeze or cough. It’s going to be hard.

I was knackered by the time we got home so I didn’t get to speak properly to Mum last night. I still didn’t get a chance to ask her the question that I need to ask but don’t want to.

I woke up from a nightmare and couldn’t get back to sleep for hours. I’m worried how we will cope. I’m worried that Mum is sicker than she’s telling us. I’m worried about a lot of things.

…

17 April

I told Sam about Mum today. He noticed that I’ve been weird. I find it hard to concentrate at school. I don’t really enjoy football anymore. He looked really sad when I told him. He didn’t know what to say. I told him that he doesn’t need to say anything, just be my mate.

My teachers all know about the cancer now. I can tell straight away which ones have been told, because they look sad and ask me how I am. Even Miss Simmons was nice to me!

…

29 April

Mum had her first chemo today. Grandad took her and Gran stayed at ours to cook dinner. When I got home, Mum was having a nap. I asked Grandad how it went and he said

“As well as could be expected.”

Mum woke up just in time to have dinner. She didn’t eat much and went back to bed soon after. Rosie was upset so I read her bedtime story and put her to bed. Gran and Grandad said that they were tired and went home, so I stayed up by myself for a while watching You Tube videos. The house was too quiet. I checked in on Mum before going to bed, in case she needed anything.

“Mum, are you ok?” I whispered.

“Yes, just tired darling.” She replied.

“Have you been sick?” I asked.

“No, not yet. I’m ok. Will you be ok getting Rosie to school tomorrow?” She asked.

“No problem. Night Mum.”

“Goodnight Jake.”

…

23 May

Mum has had her second chemo. She had to go into hospital yesterday because she has an infection. I’m really worried.

Rosie and I were allowed to visit her for a few minutes last night. She was hooked up to machines and looked rough. Rosie cried when she saw her and was a nightmare for the rest of the day.

I asked Mum when she was coming home and she said,

“As soon as I can. Although it is nice being served hand and foot by the nurses in here.”

I hope that she comes home soon. Gran and Grandad are nice but they are so old! I’m not even allowed to have my mobile at the dining room table, and they treat me like I’m five. Rosie loves it though. They let her eat as much ice cream and crisps as she likes.

…

27 May

Mum is out of hospital now. Rosie is being clingy with her and winding me up. She’s acting like a baby, and I have to get her breakfast and walk her to school every day.

I’m knackered. I keep having nightmares. In them, I wake up and realise that I am in a strange room, all alone. I try to find a door but there aren’t any. There are no windows either. I start to panic and then actually wake up.

People are being really nice to me at school, especially the girls, so it’s not all bad.

Some people don’t talk to me anymore though. Harry used to always invite himself to mine to play X-box but he hasn’t spoken to me in weeks. I’m not bothered because I have enough friends but still.

The school counsellor, Mrs Brown, caught up with me the other day and asked if I wanted to talk. I said no thanks. I don’t know why people want me to talk all the time now! Before they always used to tell me to shut up.

…

30 June

I am done with cancer now. It can just get lost! Argh.

Why did this have to happen to Mum? Why did it have to happen to me and Rosie? Mum’s never hurt anyone in her life. And now look at her! All her hair has fallen out and she looks so tired and sad. I feel about 50.

Sam keeps talking about his summer holiday this year. He’s going to Florida with his parents and brother. I can’t even think as far as next week, and we’re definitely not planning a holiday.

How can we, when Mum might not even be alive by summer? She might die. She hasn’t told me that but I know it might happen.

It sucks. 😔😢😠

…

5 July

I finally asked her last night, when Rosie had gone to bed and we were watching Bear Grylls on telly.

“Mum?” I asked.

“Yes Jake?”

“Please tell me the truth…”

“About what darling?”

She put down her coffee, paused the show and looked at me.

“About, well, I mean, are you going to… are you going to die?” I whispered.

Mum stood up, walked over to me and gave me a massive hug.

“I am not planning on going anywhere.” She said.

“No, but what if you get another infection? What if you die during your operation? What will happen to me and Rosie?” I started to cry.

“Oh sweetheart. How long have you been worrying about this? Listen, my oncologist says that I am responding very well to the chemo. As long as I am careful, I hopefully won’t get another infection. And my surgeon and the other doctors know exactly what they are doing with the operation. They’ve done it hundreds of times. I am young and should make a quick recovery.”

She sat down on the sofa next to me.

“But, what if you die anyway?”

“If I die, which I’m sure won’t happen for a very long time, then you and Rosie will be ok. Gran and Grandad can look after you. I’m so proud of you! I know that you will grow up into an amazing, kind man. I will be ok though, I can feel it.” She smiled.

“You don’t know that mum.” I replied.

“No, but I have faith. I’m going to be ok. We’re all going to be ok.”

My mum is so cool sometimes.

…

25 July

It’s the school holidays! Yay.

Sam is going to Florida next week, but I don’t mind so much anymore.  Mum found us a last-minute holiday deal online. We are going to Cornwall with Gran and Gramps for a week. I’m going to do some surfing lessons and Mum is going to chill. She’s even going to go to the beach with us. But I told her to be really careful, and she must have a nap when she gets tired.

I’m so excited! I can’t wait. 😀 🐚 🍦🕶

–

20 December

Man, it’s been a tough year. Mum finished her chemo in summer and had an operation in October. Her hair is growing back now and she’s doing well.

Now she gets to have a break from cancer stuff until New Year, when she starts radiotherapy in Oxford. She’s going to have to go travel 70 miles every week day for five weeks. She’ll be really tired. One day Swindon hospital will have their own radiotherapy machines, which will make it much easier for people with cancer.

I did a 5k run the other day for the Brighter Futures charity, who are raising money to get our town some radiotherapy machines. I raised £160! Mum said that she’s really proud of me.

It’s nearly Christmas! I can’t wait. I wonder what Mum got me? I bought Rosie a My Little Pony, I hope she likes it! I drew Mum a picture of us three, Mum, Rosie and me, lying on the beach in Cornwall. I also got her a woolly hat because she still gets a cold head sometimes. 🎅👼👪

The end

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

Here Comes the Sun

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to…

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