Category: Breast cancer

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

World cancer day 2024

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.

Summer 2023, soon after my stage 4 diagnosis.

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

Scans, forms and more drugs

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. 😐

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

The cancer has spread

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.