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.
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.
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.”
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.
Care for the family, who have a bereaved parents’ group, lead by the lovely Mike and Kath, spoke to me about my experience as a pregnant Mum who knew that her baby would die, and grief after your child has died.
Faith had a yellow balloon. It was her favourite balloon because it was yellow. Everywhere she went, she carried her yellow balloon.
She took it to the shops with Mummy. When she went to Granny and Grandpa, along came her yellow balloon. When she went for a walk with Penny the dog, she carried her yellow balloon. Faith could not remember when she got it, and it felt like she had always had her yellow balloon.
One day, Faith and Daddy took Penny for a walk to the park. Faith brought her yellow balloon of course. It got windier and windier and even windier. Penny ran off after a squirrel, and Daddy chased her. Faith was swept up by a gust of wind, still holding tight to her yellow balloon.
The wind lifted her up, up, up. She floated over Daddy. She swooped over the houses in town.
She soared over the sea. Faith and her yellow balloon flew all the way to the moon! It was beautiful up in space, and the Earth looked tiny.
“Wow! This is the greatest adventure ever, isn’t it, yellow balloon?”
After a while she got scared and wanted to go back home.
The yellow balloon carried her back down to the park safely. When she landed, Daddy was still there with Penny, looking for her.
“Where were you, Faith?” Asked Daddy. “I was looking for you everywhere!” Daddy was upset because he thought that Faith had got lost.
“I was ok Daddy. My yellow balloon flew me all the way to the moon.”
Daddy looked at her and laughed. “Ok darling, but please don’t run away again. I was very worried that you were lost or hurt.”
“Sorry Daddy.” Faith replied.
She took Daddy’s hand and they walked back home. Penny walked beside them, and the yellow balloon was in her other hand. Suddenly another gust of wind swept the string out of Faith’s hand, and before she knew what was happening, the yellow balloon went flying off. She tried to chase after it, but she couldn’t fly. It flew over the road, over the houses and far away.
“No! Come back!” Faith shouted.
But the yellow balloon did not come back. Faith cried and cried. She had never been so sad in her life.
“I want my yellow balloon back!” She cried, all the way home.
“I want my yellow balloon back now!” She sobbed in the back garden while Penny looked at her sadly.
“Why doesn’t my yellow balloon come back?” She asked Mummy at dinner time.
‘I’m so sorry, darling. The balloon has gone away now. We can’t ever get it back again.”
“That’s not fair!” Shouted Faith.
Faith went to bed very sad that night. She missed her yellow balloon. Things did not feel right without it. She was still the same Faith, but just a bit sadder. That night, she could not sleep. It was very late. She looked out of her bedroom window. The moon was big and bright. Then, Faith saw her yellow balloon! It was on the moon. She could just make it out, a tiny yellow dot ever so far away. She had excellent eyesight.
“So that’s where you went.” She whispered into the night sky. “I miss you yellow balloon.”
Faith climbed back into to bed. She knew that her yellow balloon would never come back now. But, she just knew that it was safe, up on the moon. She yawned and fell asleep. In her dream, her visited the moon and her yellow balloon, and that made her feel happy.
The next morning, Faith woke up and looked around her room for her yellow balloon. Then she remembered that it was gone forever. She felt sad all over again.
“I feel sad Mummy, I miss yellow balloon.” She told her mum at breakfast.
“I know Faith I’m sorry. I know what, why don’t I buy you another yellow balloon? Will that help?” Asked Mummy.
“No thanks, I want my yellow balloon, not another one.” Sighed Faith as she ate her toast.
Daddy drank his cup of tea and thought.Penny looked at Faith’s toast and wished that she could have some.
“Why don’t you draw a picture of you holding your yellow balloon?” He asked. “I know that you love drawing.”
Faith chewed her toast and had a drink of orange juice. “Ok Daddy, I will.”
After breakfast, Faith went and sat in the garden with her crayons and some paper. Penny came too, and lay down next to her feet. She drew a picture of her and yellow balloon standing on the moon, because that is where they had their greatest adventure. Penny had a nap and dreamed of squirrels. When she had finished her drawing, Faith showed Mummy and Daddy.
“Oh, that’s beautiful darling, well done.” Smiled Daddy.
“What an artist!” Agreed Mummy. “Would you like to put it up in your room?” “Yes please.” Replied Faith.
So Mummy put the drawing of Faith and her yellow balloon up in her room. Whenever she felt sad, Faith would look at it and remember her greatest adventure with her beautiful yellow balloon.
Dedicated to my niece Lara, who loves yellow balloons.
And my baby son Samuel, who is my little yellow balloon in Heaven. ❤
We knew that Samuel would not live for long. We found out at my ‘normal’ 20 week scan, which happened to be 3 days after Christmas 2018.
We knew that he would never talk, never take his first steps, never start nursery or school.
The cardiologist told us that the average life expectancy for a baby with his congenital heart defect was 2 days. I hoped for a few more, so that he could meet as much family and friends as possible. Of course, any baby can die during labour, so there was that awareness too.
We and other Christians prayed for a miracle, but myself and Mike both felt that he was never destined for a long life. We would have gladly taken it, of course. Why didn’t God heal our Samuel? Only He knows. I do know that Samuel’s life is just as valuable as someone who has lived to 100, or climbed Mount Everest or became a millionaire. Every single person is loved by God, and that is not dependent on their looks, education or achievements. I do know that thousands of innocent babies and children die around the world every day, from disease, war, poverty, illness, accident, unknown causes and parental choice. So he is definitely not the only child currently chilling in Heaven. I miscarried before Bethany was born, so he has an older brother or sister with him.
When I was about 6 weeks pregnant, and then again at 17 weeks (after completely normal 9 and 12 week ultrasounds that didn’t show any problems); I did hear clearly a male voice in my head saying “There is something seriously wrong with your baby.” I hadn’t been thinking or worrying about my pregnancy at the time either. So I had some warning.
Thankfully we were in a lovely hospice for most of Samuel’s life, called Charlton Farm.
We had as peaceful and enjoyable a time with him as we could. And it wasn’t just that Samuel’s every need was met. We were looked after as a family too. They were a real blessing, and we will be forever grateful to them.
I remember the last full day of his life, Saturday 11 May 2019. It was the weekend, so Connor and Bethany were with us again, after a few days at school (staying with Mike’s parents.) Being a Saturday, more family were able to visit, which was great. My sister in law, Mary, came to visit us in the morning. My sister, Laura, who had visited from Scotland ‘for just a few days’, more than 2 weeks before, was living at Charlton Farm with us, mostly to look after me as I had had a c-section and was fairly immobile. She was an absolute angel to us all, and I can’t thank her enough for being there for us. My brother Vince, and his fiance Anna visited us that afternoon. So Samuel was blessed to have all of his aunties around him on his last well day.
We went for a walk up to see the horses on the farm at the top of the steep hill with Mary and Thalia (Samuel’s nurse for the day), that morning. It was a warm sunny day. The kids played on the very posh private school nearby’s outdoor play equipment. We noticed that Samuel was struggling to poo, which is a sigh that we had been warned about. It was because his heart was failing, and the digestive system is the first thing that struggles to work due to reduced oxygen. He could still breathe fine on his own and wasn’t in any pain.
That afternoon, Vince and Anna arrived. We had a lovely time sitting in the garden while Samuel slept in his pushchair or was held by everyone in turn, and Bethany played in the nearby sandpit. Everything felt so relaxed and happy. I thought at the time that this was going to be a happy memory to cherish. You don’t always know what you will remember, but I just knew this time. Samuel was ok, if sleepy and not hungry. The exact opposite of his brother at that age!
We knew that his time was probably coming to an end, but didn’t know how long it would take. And there is always hope that you will be given a few more hours and days.
That evening as Mike and I watched a film, strangely I can’t remember what it was, we could see that Samuel was starting to physically deteriorate. He was still comfortable and didn’t need any interventions, but one of the hospice’s regular doctors made the effort to came to check on him anyway at about 11pm, long after she had gone home for the day. A trick of his was to creak at you almost like he was trying to communicate. He was also a surprisingly alert baby who stared at people as though working you out. He got more creaky and more pale. We felt calm, but there was sadness as we knew that we would have to face his death soon.
We told the two nurses on night duty to wake us up if there was any concern about his health. I was downstairs in his room, as the trip to the bedrooms upstairs was too tiring and I wanted to be near to Samuel at night. My sister was in the next bedroom. At about 2am, nurse Sophie woke me up to say that they had tried a little medicine, but he was quite poorly. I had a cuddle, and after a while he picked up a bit. About an hour later, they asked if they should wake Mike and the kids, as Samuel was struggling. I agreed, and soon Mike, Connor, Bethany and Laura came into the room. He was very pale and we told the kids that he was going to die soon. The nurses had given him some medication to make him more comfortable. We had some cuddles, and all said goodbye to him. He was in my arms as I sat in bed when he died. It was all so calm and quiet. I think that he had the best death that anyone could hope for.
At about 4am, we had said our goodbyes and the nurses made us all a hot chocolate while we sat in the nurses’ station where Samuel had spent many nights in a nurse’s or my arms. There are sofas and a big window. We watched the sun come up.
Samuel had a happy life and a peaceful death. He was hardly ever in a cot or pushchair as everyone fought over cuddling him. He made such a big impact on our and many other people’s lives in his 11 days on Earth.
We are sad, and sometimes angry; and it is incredibly unfair. We will never stop grieving our son. But what happy memories we have with him. He has helped me to think about life differently: about what is really important.
Just another blog 