My 9th cancerversary

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.

Donate

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.

https://www.facebook.com/profile.php?id=100064857995618

Review of my 2023

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.

Spinal art

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

13 October: secondary breast cancer awareness day

Now that I am in another group that nobody wants to be part of (secondary/ metastatic/ terminal cancer club), breast cancer awareness month feels different. I still believe that fast diagnosis is vitally important; and as part of that, knowing your body and going to the GP asap if you notice changes.

Cancer does not discriminate: it doesn’t care if you do yoga or eat healthily or are young or too busy to visit the doctor.

But now, even more than when I was diagnosed with my primary 8 years ago, I am aware of the necessity of ongoing research into treatments. Especially into secondary breast cancer, which is when the cancer has spread from the initial site. About 35% of people who were diagnosed with primary cancer will go onto develop secondaries within the next 10 years. And the life expectancy at secondary diagnosis is about 2 years. Some people are diagnosed with primary and secondary cancer at the same time. I was lucky to have an 8 year gap between them, especially given my young age at primary diagnosis.

Secondary bc can be treated, but not cured. I will die of my cancer one day. About 1000 people die of metastatic cancer every month in the UK (Source.)

But there is little research done into it compared with primary bc. Many patients who survived a primary diagnosis do not even know that they are at high risk of the cancer spreading to other parts of their bodies (bones, brain, liver and lungs, for example.)

I see people celebrating that they are ‘cancer free.’ Sadly, there is no such thing, and any good doctor would not say those words. The best that you can hope for is ‘no evidence of disease’ (NED).

To find out more about secondary breast cancer, go to: Cancer research UK

or, to see a helpful infographic about symptoms to look out for, visit: Abc diagnosis

It is better to know than to be ignorant. Earlier detection of even secondary cancers can enable more treatment options, and possibly more time.

Don’t assume that your GP knows these secondary cancer symptoms if you have had cancer in the past: they are not oncologists and you know your own body best.

Being positive, telling patients to ‘fight’ and wearing pink will not save lives: research will. I support Cancer Research UK with a regular donation. If you would like to help people with all types of cancers, you can too.

https://donate.cancerresearchuk.org/donate

I am not defined by cancer, but it is a big part of my life.

Glimmer

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.

How long have I got?

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

Cancer fears

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.

1. Treatment side effects.
2. Paralysis.
3. Pain.
4. Death.
5. Future.
6. Money.
7. Burden.
8. Loneliness.
9. Boredom.

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. 🙂