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.
The clouds are roiling,
Seemingly spoiling for a fight.
The fern is unfurling,
Nearly see-through in the light.
The sparrow rests for a second,
before quietly taking flight.
A tiny spider clings
to bluebells that are white.
And after a day of toiling,
Settles down for the night.
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.
Michael Rosen, the author, gave the prompt for today’s 64 Million Artists’ The January Challenge. He said to write a poem about your earliest memory. I don’t think that this is my earliest, but definitely one of them. I was 3 years old when this happened.
Gran is brushing my hair,
Gently,
Gently,
Ow! A knot.
The sun is shining on us,
Hot,
Hot,
Sea breeze Hot.
Laura and I run off
To the playground
Climbing,
Climbing,
On the monkey bars.
Another girl joins us,
But she doesn’t speak our language.
That doesn’t matter.
We speak,
She speaks,
We play together.
Earlier, I saw a baboon
Sitting on a rock.
He looked sad
And wise
And I liked him
A lot.
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.
The thoracic vertebrae sit in the middle of your spine between the cervical (neck) and lumbar. There are 12 thoracic vertebrae and they are the only ones to support ribs. They are labelled T1 to T12.
I have metastatic breast cancer in my T3, which sits between my shoulder blades.
This is my first attempt at drawing a realistic vertebrae, so it definitely isn’t perfect. This is one without cancer. I don’t know what my one looks like exactly: a little growth somewhere in there.
80% of spinal cancers are secondary, ie they originated in a different part of the body, and are therefore terminal.
I also have a cancer in the cervical vertabrae, C7, which sits at the base of the neck. It is also called vertebra prominens. There are 7 cervical vertebrae.
C7 controls the movement of the head and is closely linked to the use of arms and hands; although leg movement can also be affected if it is damaged. Serious damage to C7 can cause paralysis.
Cancer can grow in different parts of your vertebrae.
“Intradural-extramedullary tumor:
This type of tumor is located inside the thin covering of your spinal cord (dura) but outside of your actual spinal cord. Approximately 40% of all spinal tumors are in this area.
Intramedullary tumor:
This type of tumor grows inside of your spinal cord. Approximately 5% of all spinal tumors are in this area.
Extradural tumor:
This type of tumor is located outside your dura (the thin covering surrounding your spinal cord), which includes your vertebrae (the bones that form your spine). Approximately 55% of spinal tumors are in this area.”
Source: https://www.cancerresearchuk.org/about-cancer/breast-cancer/secondary/symptoms
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 tiny leaf
flutters in the
blustery breeze.
I thought it
was a moth, at
first: so alive.
Finally, it
rests on the soft
Autumnal soil.
With its sisters,
it soundly sleeps.
Alex Dixon 19/11/2023
Just another blog 