A Personal Update: Living With Stage 4 Cancer

Foreword

Please be mindful of your mental health before you read on. This may be triggering if you or someone you love has been affected by cancer or another illness or a situation that might draw comparable feelings.

When I first found out, I did not want to be known as the author who had cancer; I simply wanted to be known as the author who had made readers smile or laugh, and maybe even blush at the spicy times between the pages.

I spent a long time deliberating whether to make this update—it is coming up to a year…

Writing this post has been cathartic for me.

And as I have learned, there is peace to be found in such acts.

This doesn’t come with a happy ending, but it doesn’t have a sad one either.

In fact, it doesn’t have an end. But that’s the point of a life or a story, isn’t it?

In books, we are given a snapshot in a timeline, and then we have to trust that our characters have been left in a good place and that the story is not done with them yet.

My story definitely isn’t done with me yet, nor am I done with it.

Thank you so much for all your support over the years. I appreciate that you have read this far.

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This is a personal update from me on my journey with cancer. Everyone's journey will be different, and their experiences and emotional responses to it will likewise be different.

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The news…

Two days before Christmas last year, I went for what I presumed to be a routine endoscopy and colonoscopy.

I wasn’t overly concerned. I’d been feeling fine other than gradually diminishing iron reserves that had no explanation…

They kept me back after the procedure, took my husband and me into a tiny cubicle room, and told us that they had found stomach cancer—a bleeding tumor in my upper GI.

I was in shock.

I’d done a 45-minute run-walk on the treadmill two days before. I was hiking regularly and walking around 10k steps a day. Other than the loss of iron, I felt perfectly fine.

I was told to enjoy my Christmas.

That I would be sent an urgent appointment for a CT scan.

Everything was slowed down by the public holidays, and my scan was squeezed between Christmas and New Year.

While waiting, I reminded myself that I was feeling fine. That meant they had caught it early, right? I told myself that there must be options, maybe chemo and/or an operation… I would need to brace for tough times, but I would get through them.

Another nine days passed before I was called to see the doctor and get the results of the CT scan.

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The ‘worse’ news…

I should have realized it was bad when they had a support person in the room, and the doctor opened up the conversation by saying he would answer my questions but not my husband’s unless I agreed I wanted the answers too.

He told me it was stage four. That the cancer had spread to my lymph nodes and into my liver.

It was inoperable.

That I would be given six cycles of chemo and passed on to palliative care.

I remember the doctor and support person looking on as I stood in my husband’s arms.

The stricken look upon his face.

Me telling him it would be okay.

I didn’t feel okay.

And neither of us believed my words.

I was younger than the average patient with stomach cancer, and it was typically more aggressive in patients my age, I was told. I should start my chemo as soon as possible.

I asked the doctor how long I had.

Which, with hindsight, was a loaded question with a very nuanced answer.

He asked me if I was having any trouble swallowing. (That he asked implied, at least in my mind, that I was at or close to the stage of the tumor growth where this was, or soon would be, the case.)

I said no.

He said there was no screening for this type of cancer, which was uncommon in the UK. Many patients only discovered it when they had trouble swallowing, and by then the outlook was measured in months, not years.

I think I shut down about then.

Like it was so utterly shocking to be normal one day and be told you had less than a year to live the next, and I didn’t know how to process it.

My husband and I went home.

We both cried.

I told my immediate family and very close friends, and then I asked them not to call or message me to ask me how I was.

I realize that might sound odd and perhaps even cruel. But there’s no right or wrong way to deal with this, which is only something you understand fully when it is thrust upon you.

To give my reasoning some context: I’m a person who learned during early life that ‘reading the room’ kept me safe. I pick up on people’s emotions and want to ease them. Telling people you love this kind of news, watching the devastation on their faces and hearing it in their voices, is like being hit with a double blow.

In short, I couldn’t manage my own emotions, and I definitely couldn’t manage other people’s on top of that when their anguish amplified mine.

I needed a buffer between their emotions and mine.

There is a time in your life when you learn that it’s okay to be selfish, to put your own mental health and wellbeing above everyone else’s.

This was that time.

My husband—renamed ‘gold star husband’ since this began—became the gatekeeper of communications, at least at the start, when I was very much overwhelmed by the shock. 

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The train is on the tracks…

Your life changes in an instant. You are subject to appointments, tests, scans of all kinds, and more. Everything happens in a rush. Between the medical commitments I tried to distract myself from what was happening, but I also faced into it.

We had a trip booked to Australia and the USA for book signings, a book conference in Ireland, plus several UK signings already planned and paid for.

I canceled all of them.

I lost an awful lot of money not just in the events themselves but in flights and hotels that could not be canceled.

Yes, we had insurance, but canceled flights, for example, are offered as credit. What use was a flight credit at this point?

I sent packs to anyone who had preordered and wanted the books. It felt good to do this. Selfishly, I wanted readers to have my signed books.

I published what was already in the pipeline. Then I accepted that I might not write anything else.

I wasn’t angry.

Nor even bitter.

I just felt incredibly sad.

For all the experiences I would not get to live.

For the time I wouldn’t have with my husband, sharing said experiences.

For the books I would never get to write…

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You gain a new perspective on time…

The time between the news and starting treatment was surreal. It felt like I stepped outside of time. That the world was in flow and I was watching the wheel move without me on it.

Time shifted and skewed.

I existed in the moment of whatever I was doing. Plans were very short-term. What I had to do now and in the next days. I walked a lot, just spent time with my husband out in nature whenever we could between appointments.

But I also contemplated time itself differently.

I asked questions like: what if I survived for two years? How much more could I do with that?

What if it were five… or even ten?

Suddenly ten years felt like forever.

Suddenly you appreciate the wonder of every day. Of every sunny morning. Of even a rainy, miserable day…

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The markers…

It was early January when I was told it was stage four. And from memory, about another week before I met with the oncologist.

He described my scan as ‘shocking’.

He asked if I wanted to look at it.

Really, I understood it was bad; seeing the imagery of blobs growing inside me was the realm of nightmares. 💀

I said no thanks.

I was scheduled to start chemo as soon as possible, which was three weeks later.

Yet more tests followed.

I was called back to see the oncologist.

He said I had a marker that made me eligible for targeted therapy.

And another marker that was just outside of range for the NHS to fund immunotherapy.

I was disappointed I couldn’t get immunotherapy (and yes, we did ask how much it would cost to get it privately, and goodness, that is a humbling, eye-watering discussion, and the results, at best, might extend my life for a few months).

I told myself that getting the targeted chemo was enough, and I took it as a positive in a very non-positive situation.

There were other stresses during this period. Errors in processes. And a lot of side wrangling that shouldn’t have needed to happen.

As the saying goes, nothing in life is ever simple.

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The mysterious trial…

I was made aware of a cancer trial run out of Harley Street, London, home to world-leading medical specialists, consultants, and clinics.

The trial’s control group offered, as a minimum, the targeted chemo plus the immunotherapy I couldn’t get through the NHS. There was also a second arm to the trial offering a new drug…

I had the right markers to be eligible. BUT they would need to reassess me and my markers using their own labs before I could be accepted.

That would take time.

It would mean a delay to my cancer treatment while they completed this assessment.

We traveled down to London and spoke to the program director. She cautioned me that acceptance was not a given, that cancer was not uniform, and that occasionally markers (assessed by eye, by a person looking at my biopsy under a microscope) could show different results.

But she also instilled a sense of what the team and their clinical trials were about: outstanding patient care.

I left London with a firm impression—the kind of care I would get with the trial was above and beyond anything I could get elsewhere.

On one hand, my NHS oncologist made it clear that, for my case and cancer situation, avoiding delays of any kind was critical.

On the other hand, I realized, even with the targeted therapy available through the NHS, my expectations for extending my life were still very limited.

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A hard decision…

Since my diagnosis, I have felt many times like a train on a track heading toward a destination not of my choosing and yet utterly unavoidable.

I’ve learned to go with the flow.

Fine, still a work in progress in that regard, and not once in my history have I meekly gone with the flow. (If you ever wonder where my characters get their attitude from…)

Yet the decision was weighty.

Making the decision stressed me, and, you know, stress is bad any time, but particularly at this time and under these circumstances, and that stressed me too.

But it was also a decision I found surprisingly easy once I broke it down to the core.

The standard NHS care didn’t give me hope.

The trial did.

I chose to delay my NHS chemo and apply for the trial.

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The wait…

What followed was all the same tests and appointments I’d had with the NHS to make sure I was fit and healthy enough for treatment, and that the markers on the biopsy matched.

It felt like I aged about ten years waiting. Once you’ve set your heart upon something, no matter how you try to talk yourself down—to keep things stable and tell yourself what will be will be—it doesn’t really work.

My mind had played the hope card.

Hope, such a little word, and yet it has won and lost wars.

I wanted my hope.

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The green light…

If you’d asked me after, I’d have sworn I waited about a month.

It was actually less than ten business days…

The tests finally came back as hoped and expected, confirming all my markers and health as needed for the trial. ✅

In the third week of February, I headed down to London for my final blood tests and to have my port fitted.

I still hadn’t been officially accepted into the trial. It was with the sponsor, I was told. But I figured they were fitting the port, and they must be fairly confident the sponsor would give it the final approval. 🤣

On the morning of my chemo infusion, I was officially welcomed to the trial, and further told that I had been selected for the exploratory arm and the alternative targeted chemotherapy drug.

I had purposely not looked closely into the alternative drug beyond the high-level explanation given at the start. I chose to go into the trial with an attitude of gratitude—even the control arm was better than I could get elsewhere, and anything else was a bonus.

Also, the stress thing I mentioned above. Not knowing all the details of something I might not get was protection.

Protection I didn’t need anymore.

I had my treatment. Then I went home and googled the hell out of the treatment I would now receive.

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The treatment is worse than the disease… sort of…

It smashed me.

I didn’t know a person could feel so ill.

I won’t go into all the side effects as they affected me because some are pretty 🤢, but they were/are bad. I was dizzy all the time, fatigued, and couldn’t think straight. Steroids weather you through the start and drop you in the middle. At the midpoint, my body was so tender, I couldn’t bear to touch it. I slept a lot. My body really did not give me a choice.

My emotional support bears

Napping…

I came to hate nap times.

It was like going under—fast, scary, and deep.

I’ve never been a napper, like ever. I need to be in bed, in the dark, with earplugs in, between the hours of 10 pm and 8 am to sleep.

Not anymore. Now I could be up for two hours, stumble back to bed, and be out again in ten minutes flat.

And still need another nap in the afternoon!

On the plus side, I wasn’t feeling despondent anymore… I was too busy getting smashed.

Well, apart from the steroid drop when I might become irrationally irritable and/or burst into tears of utter hopelessness for no apparent reason.

I got over the mini depressions quickly, and an hour of blubbering is pretty much my limit before I remember I have a rational side and people who love me.

My hair fell out. All of it except a strip down the middle, a mini mohawk that stuck up from my buzz cut.

Losing my hair didn’t bother me, or at least not in the way I expected. It was more like standing on the beach bracing for a tsunami and feeling a small, weak wave wash over my feet.

And afterward, thinking: oh well, that was that.

My stomach felt like something had crawled in there and died, most of the time, and, you know, that was pretty distracting from my little bald head.

What I really didn’t like was the attention my hair loss garnered. I wanted to blend in, to not have people look at me or treat me differently just because I had cancer—to not really look at me at all. I have never been one for standing under a spotlight. Author signing events were a step outside my comfort zone, one that I came to love. Meeting readers is one of the most amazing, humbling, affirming experiences of my life, yet it also terrified me as someone who struggled with attention.

One day I hope to have author signing events back on the calendar, because even when you are in the thick of treatment, you still need a dream.

But you also have to accept where you are, what you can do now, and what you can't. One thing I have learned is the importance of accepting support, and as someone who is fiercely independent, I struggled with this in the beginning.

I have a wonderful Macmillan counselor that I talk to once a cycle. I leaned into the support and love of friends and family. Neighbors in my local village asked how I was doing with genuine care and sensitivity that brought a lump to my throat.

And my husband, unwavering, managing everything from appointments to dressing me on the days when I couldn't. Who said he would take the burden of the disease from me in a heartbeat if only it were possible.

The train was still on the track.

And the only way was forward.

Month after month, cycle after cycle.

Thirty weeks.

Ten cycles…

And this is only the begining...

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The baseline…

I have a total of nine tumors and lesions that are being measured as part of the trial.

At the start, I didn’t know how many tumors I had. I assumed that there was one in my stomach, one in my liver, and maybe a couple of lymph nodes.

The ‘shocking’ scan I never looked at might have prepared me for this news.

I don’t regret not looking at it. At the time, I was already overwhelmed by the diagnosis; seeing evidence would have done nothing but add to my stress load and sleepless nights. I still don’t look at the actual scan images, but I do now read the reports, which have measurements for the nine sites.

I am scanned every two cycles, and occasionally more often if something comes up.

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Where I am now…

As of the end of cycle ten…

I’ve had over 50% shrinkage (average) across measured sites.

OVER 50%!!!

Two sites are noted as resolved.

One is borderline resolved.

This does not mean the cancer is gone, simply that the sites are too small for the CT scan to pick up.

I have no doubt that my acceptance into the trial and especially gaining access to the new targeted drug has already changed the trajectory of my life.

A treatment break followed cycle ten due to suspected ILD (interstitial lung disease), a known side effect of one of the drugs.

The next scan showed that the ILD had cleared up.

Round eleven is underway…

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What’s next?

I don’t know what tomorrow will bring.

None of us do, yet for someone living with advanced metastatic cancer, that phrase is particularly poignant.

I take things a day at a time.

The lung disease could come back, and I would have to stop the targeted chemo.

But for now, and today, I do have plans, hopes, and aspirations that stretch beyond tomorrow.

I allow myself to imagine a future.

One where I just keep going until all the tumors shrink to nothing or they tell me it has reached the stage where it can be operated on.

I feel physically unwell for significant periods of time and trust the trial team to perform the balancing act of managing the disease while preserving some quality of life.

I’ve learned a lot about myself.

About the people close to me.

That I matter to them far more than I realized.

That the harsh, self-critical lens I cast upon myself is not shared by those who view me from the outside.

If only I could have come to understand this without the cancer.

I’ve also dedicated time to my mental health, read books about cancer, complementary practices, meditation, and mindfulness. Now is not a time to hold onto bitterness, regrets, or mistakes from the past. Letting go of baggage, I discovered, is incredibly easy when you are standing on a burning platform. Things that once troubled me become inconsequential.

I clung to old wounds like a shield that might protect future me from my past mistakes. Like I had to preserve the memory of the event to preserve the lesson.

Spoiler alert: Nothing can protect a person from wounds. They are simply a consequence of living a full life. And lessons can be kept without holding onto the triggering event.

Having limited energy makes you miserly with it.

I spend it wisely.

On peace.

On appreciating nature.

On creativity.

On being with people I love…

Something has shifted along the way as I ride this unstoppable train down the track that I did not choose.

AND IT IS THIS… 

There is no fixed end date on my life, any more than there was one before cancer.

I want to live.

Enthusiastically.

Joyfully.

To claim all the moments I have control over.

And weather the ones I do not.

I still chuckle at nonsense.

And post silly pictures of squirrels on FB.

I’m still me.

I’m just dealing with something extraordinary that is, at times, overwhelming and frightening.

I’m just an ordinary person, one of many.

Who happens to have advanced metastatic cancer.

And I’m learning to live with it. ❤️