No words that I say
Could ever explain
In any way,
How huge-
How enormous-
How much my love is for you.
That beautiful first day
In May
When we met…
I will never forget
When you looked at me
With dark blue eyes
And cried.
Your clothes are so small
When I look at them now.
How can this be?
When your life was such
A huge part of me.
Your heart was broken,
And so is mine.
I will see you again.
Soon,
My baby boy.
It’s my 9th cancerversary today, 15 April. But I should really call it my 9th primary cancerversary, since I was diagnosed with secondary (terminal) breast cancer last July.
Not a happy event for sure, but I see it as a good milestone. I am still here, so I celebrate that.
I have a cake every year, because cake is good. And I am glad to be alive, especially since my latest diagnosis.
Hopefully, I will get to celebrate my 9th secondary cancerversary one day too, in July 2032.
I am grateful to be alive, and that my children and husband haven’t had to deal with another early death in our family and the never-ending grief from that.
So, am I full of joy and thankfulness, skipping along and singing to the birds? No, not usually. I know that a (hopefully slow) decline awaits me, before a painful death. Although, the thought of being full of morphine and blissfully unaware does help.
What makes it harder is that my local hospice, Prospect Hospice, are really struggling with a lack of funding and donations. Like many hospices, they are fighting to keep going. When the time comes, I don’t want to die in a grim hospital room or at home (my poor family, having to deal with that!) So, I am extremely invested in Prospect Hospice thriving for many more years.
If you have the luxury of a few spare pounds, please do consider donating to them? It can be a one-off or regular donation, or you could enter their monthly lottery.
Many local people already know what a wonderful place it is.
Even though I am fairly well and able now, I have already benefited from their free massages and visits from their social worker. If I needed a spinal operation, even last minute, then they have promised to make a hospital-style bed available for me at home, or I could stay at their beautiful location in Wroughton while I recover.
Palliative care is so important, and means a lot more than dying with dignity and not in pain, although that is obviously vital.
So, it’s my first WCD as a lifer: someone who has stage 4/ metastatic/ secondary cancer. It is terminal, but hopefully the chemo and other treatments that I am on will keep me in fairly good health for a while yet.
Knowing that barring a miracle, I will die of cancer is… interesting. In some ways, it feels very far away and almost unreal. In others, like it’s all too real; overwhelming and at times, all-consuming.
I have met a couple of people from the hospice team that are ready to look after me for any respite, post-surgery recovery and finally, my death. It is reassuring to know that I have their support, but a little worrying how quickly they got that support in place for me and arranged home visits!
To me, world cancer day highlights how important it is to get cancer care and treatment to all communities and countries, no matter how poor. Education can save lives through early diagnosis and treatments. It’s vital that we keep talking about symptoms and encourage people to get medical advice if they notice any changes in their bodies.
I am so glad that I went to my doctor soon after finding a breast lump, in 2015. Even though I had no family history, was a young non-smoker and breastfeeding, I didn’t stop that or being busy from putting me off. It meant that I got treatments quickly, and for 8 years or so they gave me a pretty good quality of life. In fact, I believe that my awareness of camcer symptoms and early diagnosis and treatment saved my life.
Sometimes the grim reality of metastatic cancer hits hard. I recently saw some photos of someone with a similar diagnosis to me: stage 4 breast cancer with spinal mets. The photos of her post-surgery back were scary. The thought that I might have to go through something like that one day is terrifying. And the fact that it would probably be done as an emergency operation, makes it even worse. At the moment, my oncologist says that any surgery on my spine is too high risk (for permanent paralysis); but I am at a risk of metastatic spinal cord compression, the treatment for which may be spinal surgery. Feel free to look that up: it’s not pleasant.
I still hope for a miraculous healing for myself, but need to be prepared that it might not happen.
At the moment, I don’t look sick, I can work part-time and care for my (disabled) husband and look after our children as well as myself. I can walk the dog and sometimes the cancer feels distant, despite the many hospital appointments.
But, I am so fatigued and get bad back and neck pain almost every day. Recently, I have had aches in my arms and legs, which feel right in the bones. I have started having bad dreams when in pain at night: it’s often not bad enough to wake me up, but still manages to sneak into my subconscious in what feels like a malicious way.
I am worried about the future. It’s hard.
The chemo is keeping me alive, but causes fatigue, mouth problems and makes me incredibly susceptible to infections. Over the Christmas holidays, I had first flu then a chest infection. My neutrophils (white blood cells) were dangerously low.
My sister in law, Mary, recently set up a page to raise some money to spend on making happy memories for my kids, Connor and Bethany. Thank you so much if you have donated; we really appreciate it. People are surprisingly generous, and we are grateful for you all. And if you can’t afford to donate, please don’t worry. I know how tough life is for many.
https://www.gofundme.com/f/help-create-holiday-memories-for-alex-family
Thanks for reading. X
Photos from my primary breast cancer in 2015.
After what is probably my second- worst year; after 2019 when my baby son died; it would be easy to focus on the negatives of the past year.
1) I was diagnosed with terminal secondary breast cancer in my spine.
2) Mike is still extremely disabled by long covid; barely able to take more than a few shaky steps most days; and is showing no signs of improvement.
Obviously these two issues spark off huge amounts of other problems.
I was easily able to think of many reasons to be grateful, though, at the end of yet another nightmarish year. In no particular order:
I may not have achieved much last year, and am unlikely to in 2024. But, I survived.
I was asked to write a poem for my church’s recently Christmas Carol service.
Mum:
It’s been a tough year, that’s for sure.
Bills and prices increasing and happiness and health going down.
Every day is a struggle, And there are too many troubles…
I just want one thing; is it too much to ask? The best Christmas for my kids.
But there is so much pressure: the perfect dinner, the perfect gifts, the perfect matching family pyjamas, for the dog too, of course!
How am I meant to do it? I’m only human!
There is so much pressure.
Sometimes, I want to give up.
But I want to be happy, like others are.
So, I keep spending more money.
Credit card is overflowing.
And the mulled wine keeps flowing,
And the photos aren’t showing
That my patience is near breaking.
I wish that there was more to Christmas than just this.
When did Christmas become about the best home, the best clothes?
Trying to impress others?
Posting your perfect tree and matching decs on Facebook,
trying to look like your house is always tidy and calm.
Forcing the kids and dog into shiny outfits and trying to look full of joy;
that you haven’t spent the last hour arguing.
Pretending to everyone else that you aren’t worn out when all you want to do is relax with your family, making free memories?
Credit card is overflowing,
And the mulled wine keeps flowing,
And the photos aren’t showing
That my patience is near breaking.
I wish that there was more to Christmas than just this.
—
Child:
Mummy is stressed: I think it’s because I didn’t want to get dressed.
Into a sparkly frog jumper.
I shouted, “no, it looks silly!”
Then tried to thump her.
I shouldn’t have done that, I know.
I just get fed up with smiling for photos,
brushing my hair and holding hands
with my smelly brother.
We don’t get along, so why pretend that we do?
Just for her nosy friends on her phone.
Why do they care what we do anyway?
Mummy is shouting and the dog is howling.
I have to hold hands with my brother
and wipe the crumbs off the sofa.
I’m fed up with Christmas already,
it makes everyone cross.
I wish that there was more to Christmas than all this.
…
Older person:
Do you ever wish that there was more to Christmas than all the stress?
Well, I have some good news for you.
Many years ago a perfect baby boy was born to a woman.
She was young, not married and no doubt, worried, sore and exhausted.
She was normal, no-one special,
But she trusted God with her life: that is the important part.
The baby is God: named Jesus;
A perfect person sent to an imperfect and messy, stressy world.
God loves us so much that he sent His son, Jesus, to save us.
Born on the first Christmas,
he lived a perfect life in an imperfect world.
Jesus doesn’t mind if you are messy or well-dressed; bored or stressed.
Jesus doesn’t need money to be spent:
You can’t buy his love: he already loves you,
and hopes that you will love him too.
I had an MRI at the hospital today, ordered by my oncologist. I also have a CT scan on Wednesday. I will be getting these every three months or so, to keep an eye on the two cancer tumours in my spine.
This time, I knew what to expect so wasn’t worried. The room was much warmer though, so I was too hot and wished I could take my cardigan off soon after starting the MRI. It was quieter than last time, too. I closed my eyes (the head mask and machine are both very close to your face, so it’s better not to see them), and thought about the book that I’m currently reading (the 5th in a huge and beautifully- written series called The Wheel of Time); made up a poem about a leaf that I saw the other day; and recited Psalm 23. It was difficult to concentrate with the loud clunking and whirring noises, but I was quite relaxed.
I am starting on two new treatments soon, which is another reason for the scans. One of them is a bone-strengthening medication and one is touted as a ‘wonder drug’, a targeted therapy called Palbocyclib, which has shown good outcomes in patient trials.
Hopefully, it will keep the tumours from growing too fast and keep me going for longer. The list of side effects is not encouraging, though. It can cause anything from low immunity, to osteoporosis to DVTs.
The bone-strengthener can itself cause severe jaw problems, teeth falling out, and all sorts of other horrors.
I had to sign two scary consent forms for these drugs. But, they are the best treatment known to medical science to keep me alive for as long as possible, so what choice do I have?
The fact that I am managing so much better than expected and than last time, on the two treatments that I am currently on, does give me some hope. Last time, the drug that I was on had a 1 in 10000 chance of getting some rather evil side effects: I got them.
I hate it when doctors tell me that there is a small chance of something (bad) happening. I usually get that thing.
Thank you to everyone who is praying for no side effects, just good outcomes (i.e., my cancers shrinking.) Please continue to pray for me and my family?
I was woken by some awful burning pain across my whole back the other morning. It went away after an hour and strong painkillers. I went cheerfully about my day, but thought later that I should let my cancer nurse know that I had a new symptom. She phoned me back sounding panicked, and saying that she didn’t want to scare me, but that burning pain was a red flag for metistatic spinal cord compression (the scariest thing to me besides death). It is a nerve, not a muscular pain. I didn’t even know that it was a symptom: it’s not on my warning cancer card that I carry everywhere.
She said the next time that I get it, I need to the 24 hour hospital cancer Triage Line, even if it’s 2am and I feel better soon afterwards. It counts as an emergency and they may send an ambulance for me.
This feels more real now. It could happen at any time: probably in the middle of the night or when it’s very inconvenient. I have to try to stay calm while being prepared for a possible emergency situation that may involve spinal surgery or paralysis, when I least expect it. Great. I have now packed a hospital bag, just in case.
Cancer truly is the gift that keeps on giving. 😐
The proofreader has died. May he rest in peas.
Joke
After my diagnosis in July, I did not Google the life expectancy for my type of cancer; stage 4 metastatic breast cancer spread to the spine; as I would rather not know. Anyway, everyone is different and I am praying and hoping for miraculous healing.
But, I have been told that some people live 10 years of good quality life after diagnosis. I have also heard that 3 years is the average life expectancy.
Macmillan’s website confirms that some people live for several years, while the average is only 2 years! Two years… my daughter will only be 12 then. Which teenage girl can succeed without a mother? My son will probably be at uni. Will he be able to finish his course? Will my husband Mike be isolated after the kids have left home?
But, my oncologist said that I should be able to survive for ‘several’ years; that is dependent on my being able to stick to my (previously horrific) initial treatment plan, which now includes a newly discovered ‘wonder’ drug that shows good outcomes.
However, if I get half the side effects that I had on the drugs after my primary diagnosis, then I will not be able to cope with the treatment for more than a few months.
I have always believed that quality of life (incl. peace, some joy and being able to make happy memories with my kids) is more important than dragging my years out in some shadowy existence where I try desperately to not be consumed by extreme anxiety, anger and all-encompasing misery. It’s not a lot of fun.
In a (rather pathetic) act of hope, I have bought myself a 5 year journal. If I write in it every day, then I need to live for at least 5 years, right?
Having struggled to write a journal since my son’s death 4 years ago, this is a big step for me. Before that, I was fairly prolific since childhood. But only having a tiny amount of space to write in each day is so freeing, and sometimes I wish there was more space. 🙂
It feels good to carry out this tiny act of faith. And also my kids will be able to read it after my death, and find out what a boring person I really am. I know that I should write them both letters and diary entries about memories with them too, but at the moment that feels like too much pressure.
Although I am not afraid of dying, I am worried about abandoning my kids when they are so young, and my husband, who is so disabled by long covid. Who will remember to buy the milk when we run out and send birthday cards and gifts when I am gone?
There is a long list of things that I want to do while I am still physically able. But having limited money and energy makes it hard. I am not sure what I want to prioritise. I want to be selfish and buy books and art supplies, but also spend time with my family and give the kids some treats and happy memories before they become bereaved for a second time.
I want to go back to work soon, partly for normality and because I love the job, and partly because we need the money. But I can imagine how exhausted I will be then, so art and fun will be pushed to the side while I fight to keep going with work, housework, parenting, caring, life admin, treatment side-effects and becoming more poorly over time. It’s like a complicated puzzle, trying to fit all of the pieces together.
I hate puzzles: no matter how much you struggle to solve them, the outcome has already decided by someone else. And you probably lose a vital piece along the way.
“It is not death that a man should fear, but rather he should fear never beginning to live.”
Marcus Aurelius
I am generally a pretty calm and content person. I don’t spend a huge amount of time afraid, but recently have been worrying about many things.
My metastatic (secondary and therefore terminal) cancer treatment starts soon. Drawing about and ranking my fears has been helpful. Here is the current list, with biggest fear first.
Mike and the kids are not a fear, but I do fear for them, more than myself. Especially when I become very ill and eventually die.
If you can pray, please pray for us? Thanks.
PS: Please don’t tell me to not be anxious. That is extremely unhelpful and judgemental. It also shows that you just don’t get it. Thanks. 🙂
I was three years old, my sister four.
Mom was pregnant with our little brother.
Our mother wore a beautiful dark blue
Spotty dress. Laura wore green and I pink.
…
A couple of years later, we baked with
Mom. Laura’s cupcakes were perfect, mine blue.
…
Becoming a mum in my early twenties
Changed everything. But then, doesn’t it
always? My eldest son just turned 17.
The first two years were like one thousand,
And no time at all, were the next 15.
…
It snowed today: the daffodils yellow,
bowed under the burden of heavy white.
It is spring and Mother’s Day soon. New
life appears from the ground up, but winter
isn’t quite ready to loosen its grip.
…
I have four children, but only two are
on Earth.
Mums are the keepers of memories,
Hope and grief. Side by side, they grow.
Clara is a puppy who is excited for her first Christmas. She wants to know why we celebrate, and what everyone loves most about it.
Clara was a puppy. She lived with her Mummy and twin brother Rudy and their humans, Norah and Jasper. Clara was excited because it was Christmas soon. Clara wasn’t sure exactly what Christmas was, but by the sound of it, it involved lots of food, baubles to chew, and extra cuddles with their humans. It sounded amazing!
But today, Clara and Rudy were in the dog house. Apparently, trying to climb up the Christmas tree to eat the baubles was ‘incredibly naughty’.
The puppies had been told ‘no more treats today’. This made Clara sad. Her tummy was rumbling, and it was ages until dinner time.
“It’s not fair,” moaned Rudy, “I just wanted to eat that shiny star at the top of the tree. I love baubles.”
“Well, I wish that I hadn’t followed you. It was all your idea, and now I am in trouble too,” huffed Clara.
“You didn’t have to follow me up the tree!” Replied Rudy.
“I know that, but you called me a coward!” Said Clara.
“Hmph.”
“Stop arguing, puppies,” said Mum, “I am trying to have a nap.”
Clara walked to the back door and stared out at the garden. It was raining. Her tummy rumbled again. She sighed.
The next day, Clara tried to be well behaved, to please her humans. It was tricky. She really wanted to climb that tree and eat some more baubles. Sometimes it was hard being a puppy.
Jasper took her, Rudy and Mummy out for a walk to the park. Norah was wrapping presents, and apparently didn’t need their help, which was a shame. Clara loved the park: they could run around and meet other dogs. There were so many smells: grass, dogs, squirrels, poo. Jasper let them off the lead, and Rudy ran to smell a lamppost. Clara saw a friend, an old English sheepdog called Bert, and went to smell him. Then she licked his face.
“Bert, you are old and have had many Christmases,” said Clara, “what do you love most at Christmas?”
“Well,” replied Bert, “I love many things, but I suppose that my favourite is having my humans around, all of the kids come and visit over the holidays.”
Bert’s humans were grandparents, and had their whole family round on Christmas Day.
“Oh,” said Clara. “I don’t know what I will love most, because this will be my first Christmas. It might be pigs in blankets. Bert?”
“Yes?”
“Why do we have Christmas?” Asked the puppy.
“Well, many years ago there was a baby born in Bethlehem. He was a special baby: he was called Jesus, the son of God.”
“The son of God? That sounds important. Why was he born?”
“To give hope to all people. He told everyone about God, and how much he loves them. In fact, Jesus died for our humans.”
“Oh. Does Jesus love dogs too?”
“Oh yes,” he loves everyone.”
Bert and his human walked away, and Clara went to chase Rudy around a tree.
When they got back home, Norah had hidden all of the presents: Clara had been hoping to have a peek. She was tired after her walk, so curled up next to Mummy and fell asleep. She dreamed of dancing pigs wearing tinsel.
–
It was Christmas Eve. Clara was so excited that she struggled to fall asleep. She closed her eyes and then thought of all the food and presents that she would get the next day, and jumped up, wide awake again. Rudy kept asking Mummy silly questions like how much food they would be able to eat, and whether it was allowed for puppies to climb trees and eat baubles on Christmas Day. Finally, after Mummy told her and Rudy a bedtime story called ‘The night before Christmas’, she nodded off.
Clara suddenly jolted awake. She looked around, sniffing the air. What had woken her? She climbed gently out of bed so as not to wake her mum or brother. There! What was that sound? It sounded like… like… bells! Little bells jingling. She looked out at the back garden, but couldn’t see anything. Then she heard something from the living room. Very quietly, she pawed the kitchen door open. She popped her nose through the gap, sniffing hard. There was a new smell: similar to her humans’. Was there a burglar come to steal all of their Christmas presents? She would teach them a lesson! She would bite them hard on the bottom.
Clara crept on tip-paws over the living room carpet. There, a fat man was standing by the Christmas tree! She would sneak up and bite him on his bottom before he even realised that she was there.
‘Chomp!’
Clara took a small bite of the man’s red trouser bottoms.
“Yowch!” He shouted, jumping a couple of feet in the air.
He turned around. He had a big white beard and bright blue eyes. His hat was red… hang on, he looked familiar.
“Oh no!” Barked Clara, “are you Father Christmas?”
“Ho ho, yes I am, young puppy. You have extremely sharp teeth.”
“I am so sorry, I thought that you were stealing our presents. Please don’t put me on the naughty list?”
“Well, seeing as you were just trying to protect your home, I will let you off.” Father Christmas smiled.
“Yes, Mr Christmas. I promise to be a good puppy from now on. Please don’t tell Mummy that I bit you on the bottom?”
He patted Clara gently on the head.
“Ok, I won’t.”
Clara noticed another smell and looked behind Santa: there was a small puppy, looking scared.
“Oh, Clara meet my newest pet, I just found her today. I was delivering over Finland when I noticed a little black nose sticking up out of a snowdrift. I flew in for a closer look, and found her, freezing cold. I put her in my coat to warm her up. Her name is Estella.”
The tiny puppy looked at Clara wide-eyed. Her brown fur looked like it needed a brush.
“Hello Estella, my name is Clara. Would you like a treat?”
She nodded her head.
Clara gave her a puppy treat from her Christmas stocking that was hanging over the fireplace.
“I probably shouldn’t be looking in here, but my humans would understand.”
She ate it up quickly, “thank you.”
“You’re welcome,” smiled Clara.
“Father Christmas, could I ask you a question?”
“Of course.”
“What do you love most about Christmas?” Asked Clara.
“Oh, that’s a good question. Let me see… well I love the snow; I love my big Christmas dinner that Mother Christmas makes me after I have delivered all of the gifts; but most of all I love making sure that everyone has a gift that they can treasure. Sometimes it is something small, but it brings them great joy.”
Clara smiled.
“Now, help me to put your family’s presents under the tree, please?” He asked.
Clara helped him to arrange them all neatly under the tree: Norah’s, Jasper’s, Mummy’s, hers and Rudy’s. She started sniffing her gift, but stopped when Santa looked at her.
“Could I open mine now please?”
“Ho ho, no young Clara,” laughed the plump old man, “you have to wait until the morning, like all of the other people and pets. Now, I must get on, it’s a busy night for me, you know.”
“OK, bye bye Father Christmas! Thank you for our presents. Goodbye Estella!”
“You’re welcome. Goodnight.” He popped the tiny dog into his front coat pocket.
“Bye bye,” whispered Estella sleepily.
“Goodnight, safe journey! Sorry about your trousers.”
Santa turned around and headed back up the chimney. Clara noticed that he was wearing snowman pants underneath his red trousers.
She went back to bed, giving her present one more quick sniff on the way past.
–
“It’s Christmas!” Rudy was panting in her face.
“Get off!” Clara laughed, pushing him off her.
Rudy started running around the kitchen in circles, chasing his tail and then biting it.
“Ow.”
Clara stretched and smelled the air. It smelled like turkey, roast potatoes and joy.
“Good morning puppies,” grinned Norah.
She was putting something delicious-smelling in the oven.
Rudy and Clara went to her for pats and cuddles, licking her hands happily.
“Where’s Mummy?” Clara asked Rudy.
“She is in the living room, let’s go see what Father Christmas brought us!” Replied her brother.
Clara remembered what had happened the night before, and smiled to herself as she followed Rudy out of the kitchen.
Jasper was handing Rudy his Christmas present – Clara recognised it as one that Father Christmas had brought.
“This must be from Norah,” Jasper said, “I don’t remember it.”
Rudy jumped in excitement and tore at the wrapping with his teeth. It was a squirrel squeaky chew toy. He threw it up in the air and caught it, tail wagging.
“And here is one for you, Clara,” said Jasper.
It was also one from Santa. She opened it – a snuffle mat with small treats hidden in it. Wonderful!
Mummy opened her present: it was a cosy red blanket.
“Let’s save your other gifts until after dinner, shall we?” Suggested Jasper.
Clara didn’t think that was a great idea, but she could be patient.
Jasper started cutting up vegetables and stirring things in big pots on the stove, so Norah took them for a walk. The frost on the grass was cold under her paws and looked like icing sugar, sparkling in the winter sunshine. All the humans were wishing each other “Merry Christmas” and they saw Bert again, wearing a fluffy red and white hat. They had a lovely walk but were in a hurry to get home, ready for Christmas dinner.
After a delicious meal of turkey, pigs in blankets, roast potatoes, honey parsnips and carrots, the family were snoozing in front of the fire. They would open presents after the Queen’s speech.
“Mummy, what do you love best about Christmas?” Asked Clara.
“The thing that I love most about Christmas is seeing your and Rudy’s happy faces and wagging tails. And also the food,” Mummy smiled.
Clara thought that she loved everything about Christmas.
The end
What do you love most about Christmas? Can you draw it? Have you written to Father Christmas yet this year?
For more literacy resources and stories for kids, please go to https://literacytrust.org.uk/
This story is dedicated to my labrador puppy. It will be her first Christmas this year. ❤
Just another blog 