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.
Something that gives a sense of joy or safety. For example, hugging your pet or watching a beautiful sunset.
I notice glimmers a lot now. I have always appreciated time spent watching the clouds or drawing, or anything that gives me some peace or joy. But now, with my days limited, I see the little treasures more easily because I can’t take them for granted anymore.
Autumn is my favourite season. Partly beacause the heat and headache-inducing brightness of summer is over, and partly because nature is so beautiful as it prepares for another season of death and cold in the Winter.
I breathe in the cool clean air and stamp on crunchy red and yellow leaves. The conkers, blackberries and apples appear. Sunny, frosty days are the best. Night time is great for snuggling in blankets with hot chocolate and a book.
God reminded me today, though nature, that sometimes the season of waiting for death can be the most precious.
I don’t know how many Autum days I have left to enjoy. But I am glad that I have today.
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
A few weeks ago, my GP said that a recent stomach CT scan that I had showed some odd changes in my right lung: the scan just happened to pick up the bottom of my lungs. This was a suspected lymph node infection. Problems with lymph nodes are a red flag in cancer survivors (I had stage 3 breast cancer in 2015.)
I am grateful to a radiologist who noticed this and suggested that I be referred for a chest CT for a better look at my lungs.
The chest CT showed the small change in my right lung, but also cancer in my T3 vertebrae (between my shoulders) in my spine.
The change in my lung may be just the infection, or another cancerous site. The area is not really big enough to biopsy. The do not want to do a spinal biopsy, because they are dangerous and painful.
An MRI scan confirmed the cancer in my spine. I had a full body PET scan yesterday, which will show if I have any other cancer in my body and if there is an easier site to biopsy.
As the original cancer has now moved to my spine, this is called stage 4, or metastatic cancer. This is not a curable disease, but they can treat it, possibly for many years, if my body tolerates it and the treatment keeps working. I will have cancer for the rest of my life.
My oncologist warned me years ago that someone with my age at primary diagnosis (early 30s) and the type of cancer that I had, as well as its speed of growth meant that my life expectancy was below 50 years of age.
So this is not a shock to me.
I do not feel afraid to die.
I feel worried for my kids possibly losing a mum so young. There is a chance that I will live for many more years though.
I feel sad for Mike who is very disabled by long covid, and so cut off from friends and many of his old sources of support. He can’t just meet up with a friend for a drink or go for a day out, or even get to church. Many people have moved on and forgotten about him.
My cancer is not pressing on my spinal cord, so I am not in need of immediate treatment.
Update:
Most of my friends and family already know about this, but thought that I should put it on my blog too. I know that many people who I don’t personally know, have followed my blog since my initial primary diagnosis in 2015.
The PET scan revealed that I have cancer in two vertebrae: one in the T3, between my shoulder blades, that I already knew about; and the C7, which is in my neck. Thankfully, both are stable and there is no spread to other organs yet.
I start treatment soon and am very worried about it. The side effects can be absolutely awful, but I need to stick to it as long as I can. I would like to see my daughter reach 18, even attend her graduation from university ceremony one day, if I can dare to hope to live that long. And one of my life goals since I was a kid has always been to meet my grandchildren. That seems a little unrealistic at the moment.
Miracles happen though.
A time of eggs, rabbits and cherry blossom.
Lawnmowers, waking after a winter’s rest.
Holidays, hot-cross buns and yellow bonnets.
Celebrating fertility and new life.
Relief that the darkness of winter is
finally gone. Enjoying the sun of spring.
Yet in the centre of all this verdant life,
sits death.
The death of one man: one king: one God.
Jesus.
He who chose to die, beaten and bleeding.
Mocked and murdered. He wanted this.
He died as a sacrifice, for all of us.
He died to make us right with God our Father.
Three terrible, dark days he lay entombed.
But he knew. He beat it. He is stronger.
He died once and for all.
One for all.
And when the chocolate has been eaten,
the leaves fall defeated from the weary trees,
The darkness and chill of winter rules again,
I will still have hope.
When my knackered body finally gives up,
I know that I will still live, with my God.
The God who chose to die, who gave up his life.
Grief sits heavily on my chest today. I know that she was old and had lived a full life. I didn’t even know her. But. The death of Queen Elizabeth II feels personal to many of us in the UK, and no doubt around the world.
The Queen was the best of Great Britain. The best of all of us. She united us in a way that I doubt anyone will be able to do again.
Her faith was her rock and she pointed us to God during her Christmas speeches. For those of us who are Christians, we take comfort in the fact that she is now in Heaven with her husband, and we will actually get to meet her one day!
As someone who grieves every day for my baby son, this feeling is familiar. It feels like heaviness, like fatigue, like nothing will be the same again. And of course, it won’t. After the death of our monarch, we feel the loss of her wisdom, her ability to unite us and of hope for the future. In this increasingly divided world, the Queen was able to rise above any political divides. I worry about our country, now more than ever.
For those of us who are already grieving a loved one, this time of mourning reminds us of who we have personally lost too. It hurts a little more today.
I think about my son Samuel, who should be 3 now. Who should be starting preschool next year. He wasn’t royal or famous, but he is loved. I wish that everyone could have known him and mourn him too. But Samuel is just as loved, valued and celebrated by God as her Majesty is. Jesus doesn’t care if people were poor or rich, disabled or healthy, old or young. God loves us all the same.
There will be many poor, unknown people who died yesterday. They won’t be on the news or get a funeral procession, but their lives also had value.
I pray that everyone who mourns would know peace and comfort today.
Let’s look after each other. It’s later than we think.
I had seen a few adverts for the ‘Rainbow run your own way’, to raise funds for Children’s Hospice South West – the group of hospices that Charlton Farm is part of here in South West England. Charlton Farm is where my son Samuel lived for most of his very short life. It is a wonderful place that cares for children with life-limiting illnesses, and their parents and siblings.
I ignored them at first, telling myself that it was too much effort, and I wouldn’t raise much money anyway… then I saw it advertised again and thought that I could easily walk for 5km, and would rope my kids, parents and in-laws in. I admit that I didn’t feel enthusiastic. I was struggling after Samuel’s second anniversary, and didn’t know if I would be up for any challenges.
To win a medal, you had to raise £15 person that you registered. I thought that I could probably give enough for myself and my two kids to do so. In the end, I signed up 6 of us to our family team.
I set up a Justgiving page, setting my target at £100. That was quite high, but I was trying to be optimistic. I met the £100 target within 24 hours! So I set the new target to £200. The money flooded in. 🙂
Alex Dixon is fundraising for Children’s Hospice South West (justgiving.com)
In the end, I made over £650 including gift aid. And I later found out that I was in JustGiving’s top 20% of fundraisers for the month of June. That’s out of thousands of different Justgiving pages.
I couldn’t believe how generous people are. I am so grateful for everyone who gave – including some people that I don’t know. I guess that it’s personal – people know that my family were helped by the hospice. And I obviously have lovely friends and family.
My team also won the prize for best fancy dress – if you know me well, you will have an idea of how happy that made me.
We did the 5km walk around Stanton Park, which is where Samuel’s memorial tree is. It’s a special place for our family. I thought that a team of 6 was pretty good to do the walk, but people kept asking to join us on the day. We had 23 people and 1 dog on the team. It was fabulous to feel so supported by my family and friends. It was such an enjoyable day, and the weather behaved. Not everyone knew each other before the walk, but they all got on well and it was a great atmosphere.
I am so glad that I decided to sign up for the rainbow run your way. I love Charlton Farm and their amazing staff- and hopefully they will be able to support families like mine for many more years.
May is a difficult month, with it being Samuel’s birthday and anniversary of his death – but this was something positive to focus on.
Thank you everyone who joined in and donated.
Grief never goes away,
never gets smaller.
You never get over it.
It’s not a hill.
Your life as one left behind
Goes on, yes.
Memories are made:
New ones
without your loved one.
Sometimes happy,
Sometimes sad,
Sometimes nothing.
It’s possible to have good days,
Smile,
Enjoy coffee.
It’s possible to keep going,
Be busy,
Be sociable.
But grief,
The price that we pay for love,
Never goes away.
Some people will get it,
Without you having to explain,
Many will understand
Without personal experience.
Others will seem to forget,
Or expect you to
Move on and stop making them uncomfortable.
Some will tell you about how
hard their petty problems are,
And you will try to
sympathise,
But the reality is that they have
no idea.
You will lose some friends
Because they can’t deal with your sorrow.
You will make some new friends
Who love you, scars and all.
We don’t wear all black
Or cry every day,
But still
We grieve.
Grief is not a hill to get over.
It’s a path that lasts a lifetime.
It was 7 days until Christmas, and Leila was extremely excited. She loved Christmas. She loved the presents, she loved the crafts, but most of all she loved having all of her family together and eating too much.
Leila’s Mummy and Daddy had put up the Christmas tree, and Leila and Mummy were making some more decorations for it. They had already made some paper snowflakes and painted some wooden cutouts of the Nativity scene. Now they were working on baubles. These were no ordinary baubles though: they had little photos of their family members inside them. Mummy was cutting out the photographs and Leila was adding decorations like small sparkly stars and glitter, to make them look snowy. It was quite messy.
“Oops!” Leila cried as a pile of glitter landed on the floor. “Sorry Mummy.”
“Oh dear, not again.” Sighed Mummy, reaching for the dust pan and brush for the third time that morning.
“Glitter is quite messy, isn’t it?” Mummy asked.
“Definitely.” Agreed Leila.
Leila was filling up a bauble with a picture of her Gran and Grandad in it. They had big smiles. She put in extra glitter because she loved them very much.
“Mummy, I wish that Arlo could be with us this Christmas.” She said.
“Me too!” Agreed Mummy, reaching over to give Leila a hug.
“I really miss him.”
“So do Daddy and I. We think about him every day.” Replied Mummy.
“How old would Arlo be now, of he was still alive?” Asked Leila.
“He would be 2 now. Just imagine, he would be getting his fingers in the glitter, and pulling the baubles off the tree!” Answered Mummy.
“Yeah, I think that he would be very cute, but also a mischief.”
“I think so too.” Agreed Mummy.
“Look, here is a photo of you holding Arlo when he was very little. Shall we make this into a special memory bauble?”
“Yes please. I think that it will be the best bauble ever.” Said Leila.
They had some tiny heart stickers, which Leila added to the outside of the bauble to show that it was an extra special one.
When it was finished, Leila held the bauble in her hand and smiled.
“It’s beautiful.” Said Mummy.
“Sometimes I feel sad when I think that Arlo is missing out on Christmas.” Admitted Leila.
“Me too darling. But we will always remember him and always love him, won’t we? Do you remember that time that he weed all over Daddy when he changed his nappy?”
“Oh yes, that was hilarious!” Laughed Leila.
Mummy and Leila hung all of the baubles onto the Christmas tree. They all looked good, but the one of Leila and her little brother was especially lovely. A ray of sunshine came in through the window and made it sparkle.
Mummy and Leila looked at each other and smiled.
“It’s like he’s saying hello.”
…
Christmas can be a difficult time for bereaved people. If you have been affected by baby or child loss, here are some places that offer support.
https://www.careforthefamily.org.uk/family-life/bereavement-support
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