Six years on – Life after a cancer diagnosis

Six years on – Life after a cancer diagnosis May 20, 2023

White blood cell multiplying uncontrollably

Today marks the day when, six years ago, my life changed forever as I was diagnosed with blood cancer.  That night I experienced the first of many sleepless, tearful nights.  Or was the day that changed my life the 28 April 2017 – the day I got sick, was admitted to hospital, and remained severely unwell with pneumonia for several weeks?

Both dates are forever etched in my mind.  The gap between them feels so long as I go through spring each year and relive the experience of those 22 days.

Today, as I mark this sixth anniversary, I realize that I have changed a lot over the years, despite many serious mistakes along the way. This journey has presented me with challenges I could never have imagined, forcing me to confront realities about my own health and mortality. I have grown in my character and become more resilient.

Navigating the physical and emotional tumult of chronic illness hasn’t been easy, but it’s shaped me into a person I could not have become otherwise. Each setback, every moment of despair, has been a step on the path to finding strength in vulnerability. I know that there have been times along the way when I have not been very easy to live with which has itself caused me great sorrow and deep regret.

I don’t want this article to increase anyone’s anxiety, however. My journey with blood cancer has been much more traumatic than many others will experience, especially with the chronic slow growing ones (though I do also understand some have more aggressive cancers than mine turned out to be. But as you read on remember that I am happy to be alive. Happy to have gone through treatment and to know my cancer is in remission. Happy to be about to marry. Happy to have lovely kids and other family and friends. I have been unfortunate in getting certain unusual problems that most people do not get. My intent is not to bring more anxiety to anyone. But rather to show that hope is there however our journeys turn out.

Many wirh CLL and other cheonic blood cancers will have very slow growing disease that might never need treatment. Not all are that lucky. But treatments are really good at saving our lives and pushing the cancer back into remission. It’s not the end of the world if you do need treatment and as I say despite being an outlier in terms of the effects of thst on my body I am so thankful to be alive (and bear in mind I had chemo which most people do not have to have with CLL today).

I’ve learned that optimism is not about denying reality  but about acknowledging the severity of your battles whilst choosing to find light in the darkest moments. The importance of a robust support system has become abundantly clear— in the form of understanding doctors, professional counsellors, as well as compassionate family and friends. Most crucially, I’ve come to understand more deeply that caring for mental health is as crucial as looking after physical health.

The four pillars of mental health and wellbeing

I am incredibly grateful for all the support I’ve received over these years. My doctors, nurses and physios, for their medical expertise and compassion; my family and friends, for standing by me; and to, my online community, where I have forged new friendships and learnt so much. I could not have done this journey alone, even though at times it has felt very lonely.  Somehow in the dark moments it can feel as though everyone has abandoned you, even when they haven’t.

Please do not make the mistake of thinking none of this is relevant for you because, so far, you may not have experienced significant suffering.  I am sorry to report that suffering will come your way eventually.  It comes to all of us eventually. We cannot escape this world without going through it.  As Keller said

“No matter what precautions we take, no matter how well we have put together a good life, no matter how hard we have worked to be healthy, wealthy, comfortable with friends and family, and successful with our career — something will inevitably ruin it.”  (Tim Keller)

 

So please prepare for what will one day come your way

For those of you embarking on a similar journey, know this: you are stronger than you realize. The journey may be fraught with challenges, but it will also be filled with moments of strength, courage, and resilience you never knew you possessed. My insights drawn from these six years of personal experience are a testament to the fact that, while chronic illness may change your life, it doesn’t have to define it.

Sometimes in previous years I have marked the way my life has changed by posting on the 28 April, other years I write on the 20 May.

On the 26th April this year I got engaged just a few days after catching COVID19 so I am sure you understand why I had other things on my mind!  In fact, I announced my engagement on Facebook two days later, which seemed like an appropriate way to mark the anniversary of my sickness in a positive way:

“I’m excited to announce that I am engaged to Adele Robinson and we will be getting married THIS JULY! Thankful for this new phase of my life which I’m announcing exactly six years after I became unwell. Please pray for us as we plan our wedding rapidly and start our lives together.”

We will get married on 1 July so are in a bit of a whirlwind right now! You can read more about my COVID experience and the engagement here:

Covid caution and God’s grace

Every year up to 2022, the intervening period between April 28 and May 20  was a difficult, emotional period as I relieved the anguish of spring 2017 and reflected on what I have lost since.

However, last year something different happened.  On the 27th Apri, I was exploring Highwoods Country Park and something about the beauty of the bluebells springing up after the cold and dark of winter spoke to me of hope. I discovered the charm of bluebells and realised that they always appear around the very same dates that I remember my sickness sucking the hope out of me. They bring a burst of colour to a dull time. Here is a picture I took that day, I think I identified with the dead, fallen tree trunk! Beauty out of ashes.

I stayed up unusually late for me that night (even going in to the 28th!) I was with a new friend and told them my story. They said that it sounded like I was no longer desolate. Hearing that led to a real shift in my attitude.  I did still think about my journey during the following 22 days, but the difference was that I had genuine hope.

As I wrote last year:

 “My testimony as a Christian is not that knowing Jesus has removed my fear, loneliness and despair. But rather that the hope he gives has not entirely disappeared.  Even though there have been many times when I have been at my most desolate, and been tested far beyond what I could cope with so that I “despaired even of life itself“.

There have been many sleepless nights where my pillows are wet with tears; but whenever my faith has felt like a smouldering candle about to go out, Jesus gently breathes on that flame to keep my hope alive

. . . although things have been really tough emotionally just recently, I am also once again seeing a bit more hope than I have for a while in the middle of all the pain.

On these anniversary days I have always felt completely desolate in previous years, instead today I am actually daring to hope that just maybe when I write my six year anniversary article I will be able to report that this next year I am about to enter has been better than the last five . . .”

READ THE REST 

I dared to believe a year ago that the following words are true:

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” Jeremiah 29:11, NLT

Despite this verse’s promise of a hopeful future, I have found it challenging at times to truly accept this, especially in the face of a cancer diagnosis. Living with cancer is like having an ominous presence constantly trailing behind you with a gun to your head, a chilling reminder of life’s fragility. However, amidst the fear and despair, hope has been a steadfast companion, often ignited by my faith in Jesus.

Cancer is not just about the physical disease. It’s about the emotional turbulence, the constant oscillation between hope and despair. Yes, there have been moments of intense loneliness and desolation, nights drenched in tears, moments when life seemed too much to bear. Yet, whenever my faith flickered, hope, like a gentle breeze, kept the flame alive.  And that verse with its promise of a brighter tomorrow was becoming precious to me a year ago.

This was despite feeling that my life was like a disaster movie or a soap opera. And despite the many times I had asked God why he seemed to have stopped answering my prayers. I was facing some major challenges in my personal life a year ago that were only indirectly related to my sickness.  I was desperate for a fresh start in every area of my life. And somehow, I dared to begin to believe that maybe, just maybe, some good things might start happening for me again.

As April drew to a close last year, I was exploring the possibility of moving to Colchester. I’d had a bungalow in mind for months but had not been able to put an offer on it. It was next to Highwoods Country park and had been on the market for a long time. I had been convinced that God was keeping it for me whilst I was unable to put my old house on the market.   When it finally went on the market at the end of April my house sold very quickly. However, I was shocked to hear that the bungalow was now finally under offer to someone else.  I was still so sure I wanted it that I even tried to gazump them!

On 4th May 2022, I heard that the seller was not interested in letting their buyers down. I felt really fed up, and all the hope of just a few days before seemed to evaporate.  I called my new friend, and they were quite worried about how flat I seemed. They insisted on coming round that evening to cook for me.

But before they got there something remarkable happened.  I somehow came up with the idea of looking for a house that I could put a wet room in downstairs, as using stairs is hard and at times unsafe for me.  I hadn’t considered this before for some reason.  This new approach would create what I later described as a bungalow with a guest house on top.

I looked online, found a suitable house very quickly with a floor plan that looked very suitable. It was also very close to the bungalow I had been interested in and the road has its own entrance to the forest.  I didn’t realise this until checking the location of the photo today, but the bluebells photo I shared earlier was taken on the forest track which leads directly to what is now my new home!

God that day begun a process of directing me into restoring my life in many different aspects.  His hand has been all over directing me in many significant ways in several areas.   Moments after I had put in a call to the estate agent to see the house that had caught my eye, I had a call from some Christian acquaintances who said that I was actually coming to see their house!  Throughout the sale process they have been amazing and have become some of my dearest friends. I named their house “The Haven” and have already written about what it meant to me to gain a new home as a foundation for my new life:

Safe Haven – when God leads you to a new peaceful place. Colchester here I come.

At times this last year has been also very difficult with many challenges both in my health and in my personal life. But I do think it has been a much better year than the previous five, not least because I have spent the last nine months of it getting to know my lovely fiancée.

I have had two hospital admissions in the last year, during one of which I was told a scan revealed evidence of a small stroke (lacunar infarction). Obviously catching COVID was also initially scary, given the hugely increased risk of serious complications due to my impaired immune system.  In fact I did much better than expected, thanks to medication I quickly got better which felt like a miracle.

I continue to have significant impairment to my life because of the symptoms I experience daily. These symptoms are mostly due to what is likely a complication from my poor immune system: autonomic instability, also known as Postural Orthostatic Tachycardia Syndrome (POTS). This is a complex condition affecting the nervous system, causing a large range of troubling symptoms which stop me doing a lot of things.

Immune deficiency also adds an extra layer of complexity to life as I must weigh up the risks and benefits of every single social interaction or outing.  I can’t live in a bubble as that is no life. But I also can’t afford to be careless about the risk of catching infections, especially in the winter months.  It took me 18 months to get over a simple common cold once and infections have led to several hospital admissions over the years.

No doubt in the years to come my health will continue to be an issue. But as I mark the anniversary of my diagnosis this year, my heart is full of gratitude. The biggest difference is that I now look at the future with renewed confidence and hope, and thankful for the friends and family that I have around me, many of whom will be at our wedding.

But more than all that, having a hope in Jesus makes all the difference. Ultimately this world is not my home, I am just passing through and my faith in an eternity with Jesus is what keeps me going through the darkest times.

Jesus Commands: Follow Me

Throughout this journey, I have tried to share with you my honest reflections on how cancer has affected my relationship with God, and all aspects of my life.

I have written about topics such as suffering, hope, faith, prayer, gratitude, joy, peace, love, grace, resurrection, healing, and eternity. I have shared practical tips on how to cope with cancer emotionally, mentally, physically, and spiritually, especially over on bloodcanceruncensored.com.

I have drawn inspiration from the Bible, Christian books, music, podcasts, and testimonies and have found great support from various sources such as church, online groups, charities, counsellors, and doctors.  Don’t try and face your own suffering journey alone.

As I move forward, I promise to keep sharing my experiences, the good and the bad, the heart-warming and the heart-breaking. I believe that our stories have power. They connect us, inspire us, and help us feel a little less alone in our struggles.

My story so far

April 28 2017

One normal day I was travelling home from my office on the underground. As I stepped off a train, my legs suddenly buckled under me and I couldn’t keep walking. I became very breathless, and my smart watch showed a fast pulse. I also felt my brain become fuzzy, like cotton wool.

I was taken to hospital via ambulance, having had a sudden onset of these symptoms and waiting on the tube platform for over an hour. I was diagnosed with pneumonia, sent home with antibiotic tablets and told to come back to A&E if I didn’t quickly feel better.

Two days later, I was lying in a hospital bed in a different hospital as an inpatient when I received a telephone call from a doctor at the first hospital who told me I almost certainly had chronic lymphocytic leukaemia (CLL). I had no emotional support available to me at this time.

Unfortunately, for two weeks the local NHS haematologist wouldn’t see me, even though my other doctors were concerned my pneumonia wasn’t getting better like it should be. I had to go to a private doctor to get the diagnosis confirmed, even though by then I was attending the NHS hospital every day for IV antibiotics.

20 May 2017

I remember not so much the numb feeling I had when the consultant confirmed what others had already suspected for some weeks, but rather the sense of desperation as I spent a completely sleepless night crying completely alone downstairs in my lounge, not wanting to wake the family. It would not be the last such sleepless night of tears. That day my world came crashing to an abrupt halt. It has never fully restarted.

But I also remember the nurse who was running the helpline I rang in the middle of that night. I had not been offered the chance to speak with a blood cancer nurse for all those weeks. And in my sense of utter emotional crisis I had the cheek to ring an emergency helpline run for patients of the largest European blood cancer centre, UCLH. Even though I was not a patient there, I remember thinking “Well it doesn’t actually say it is only for their patients!”

The humanity and kindness of that nurse talked me down from the emotional precipice I was on. He seemed concerned on hearing how my infection just wasn’t going away, and surprised by the choice of relatively weak antibiotics I was still on. I was at that point visiting my local hospital daily, having been sent home from the wards even though my infection was far from cured.

Nobody there seemed to understand that I was already immune compromised and so needed stronger treatments. I explained to the nurse that I was needing a wheelchair to get around at the hospital and was barely able to walk to and from the toilet at home. He suggested I may want to try and get an urgent referral to their hospital.

Image: Tamasin Warnock

Within three days I had done just that by speaking to my GP, and the same day the referral was faxed I was admitted to UCLH severely unwell and beginning to go into sepsis. They treated me with much stronger antibiotics and I gradually improved. That nurse saved my life. I am forever grateful for him, and for all the many other skilled and compassionate health care professionals I have encountered along the way. But physically I never fully recovered, and this was just the beginning of my health journey.  Years later the doctors said it was at this point that my nervous system was damaged leading to autonomic instability and never again being able to stand still for more than a few seconds at a time.

READ MORE

 

Year One

A year into my journey with chronic illness, I publicly disclosed for the first time that I had been diagnosed with chronic lymphocytic leukaemia (CLL), a slow-growing form of blood cancer.

Those initial twelve months were fraught with difficulties, not only for me but also for my family. It was a year of struggle, of grappling with my weakness, and acknowledging my human frailty. I watched every area of my life implode. Yet, it was also a time of immense gratitude. Despite the trials, I recognized that there were others facing even more challenging circumstances.

It’s a common belief among some Christians that service to God guarantees protection from all harm. My experience, however, has taught me that life doesn’t always work out that way.

I entered a phase of ‘watch and wait’ where I had to monitor my blood counts and symptoms without any active treatment. I suffered from multiple infections, hospital admissions, and operations to remove the cancer from my throat. I continued to experience severe fatigue and had to stop working.

I experienced shock, denial, and subsequent acceptance. I had to confront the reality of having a chronic illness and face the changes it would inevitably bring. I remember the emotions swirling around me, primarily fear, confusion, and anxiety, as I grappled with what lay ahead. I decided to write about and share my experiences, hoping to find solace and community in shared experiences.

Read the rest of my 1st Anniversary and coming out post :

A Year on from The Day Blood Cancer Changed My Life

 

Year Two

 

I found myself so distressed around the second anniversary of my sickness and diagnosis that I couldn’t even articulate my feelings in writing. That year was dominated by my chemotherapy, a journey I mostly weathered in blog silence, even spending a month in the hospital.

I started chemotherapy in October 2018 after my blood cancer cells started to double in number every three months. I had six cycles of FCR (fludarabine, cyclophosphamide, rituximab) which at the time was considered a gold standard treatment for CLL. I tolerated the treatment relatively well, though did have to spend a month in hospital after the first course! I achieved a complete remission but have been warned the cancer will almost certainly come back at some point due to the aggressive markers I had.  The doctors do believe they will be able to treat it successfully again, however, and many newer treatments are in the pipeline.

During this period, I began to publicly share some of my experiences and reflections. I published a long article focused on the poignant biblical verse: “Jesus wept.” Years later, I shared an edited version of my chemotherapy diary which gives all the gory details of my treatment journey

I also launched the ‘Hope in Suffering‘ blog series    during this time, sharing insights I gleaned from Tim Keller’s book about walking through difficulties with God. The series integrates numerous quotations from Keller’s work and my own reflections on suffering. Dr Keller has now died from his own cancer, and the insights I have gained from him remain precious to me.

Hope in Suffering

Year Three

 

I was pretty grim and honest about where I was at on the third anniversary:

“Blood Cancer has been like a tsunami in my life ever looking for new ways to try and kill or destroy me, my dreams, my career, my hobbies, my charity work, my writing, my ability to watch TV at one point, and yes even all my relationships if it could. I have been grumpy at times, distracted, detached from the goings on of normal life. And so I have had to learn how to manage my emotions. Which sounds so civilised but sometimes is about as easy and apparently impossible as herding cats. . . ..”

READ THE REST

 

 

Year Four

 On the fourth anniversary, I wrote about the profound emotions I had felt. Despite the deep gratitude I felt for being alive, a sentiment shared by many blood cancer patients, the anniversary was also steeped in sorrow.

The diagnosis of blood cancer often precipitates a grieving process. We mourn the loss of a sense of invincibility and grapple with our own mortality, inevitably asking ourselves, “How long will I live?”

Suddenly, we no longer take a long, healthy life for granted. This awareness of our mortality can be chilling and emotionally burdensome, yet it can also be challenging to share with others. Coupled with the fear of death, it can lead to a crushing sense of isolation.

 

I explained that I’ve had many moments where I have experienced “Elijah syndrome,” named after the biblical prophet who despaired, felt utterly alone, and wished for death (1 Kings 19). The pressure to maintain a positive demeanor, whether self-imposed or influenced by others, can often be counterproductive. I’ve realized that while we should not allow our emotions to dominate us, we also must not suppress or ignore them.  See “The Tyranny of the positive

 

Facing chronic illness has taught me the delicate balance between embracing despair without getting consumed by it and cherishing hope without falling into the trap of false optimism. It’s essential to recognize the difference between genuine hope and the tyranny of forced positivity, as they exist in stark contrast. Life is not about always being cheerful or bending reality to our will through faith or positive thinking. That’s not hope; that’s a distortion of reality.

 

I explained that throughout the journey till that year I’d yearned for normalcy: to return to work, to go for long walks in a forest, a city, or at an amusement park. It was only in that 4thyear that I came to accept the unlikelihood of returning to anything resembling “normality,”. I must clarify that many blood cancer patients are less impacted in their daily activities than I’ve been, and some can continue to work and walk throughout their cancer journeys.

However, don’t be deceived. Regardless of how well a cancer survivor may appear to you, regardless of how much they seem to have regained their “normal life”, regardless of how far they can walk or how many hours they can work, the experience leaves its indelible mark. Even amid the silver linings of the cancer journey, the battle scars run deep, altering our perception of life forever. Just as one never truly “gets over” the death of a loved one, the loss of our sense of health, wellbeing, and invincibility will not go unmourned or forgotten.

READ THE REST 

 

Year Five

As I explained earlier in this article, that year was exceptionally challenging emotionally—a year of desolation and great loss at times. But amidst all that, I started seeing glimmers of hope once again especially at the end of the year. I began to dare to hope and to hope that the following year would be better.  You can read more about that in the post I wrote a year ago:

Five years of living with blood cancer uncertainty: No longer desolate. The battle between hope and reality

Year Six

I am glad to be able to report that optimism was not misplaced! Year six has definitely been the best year since my diagnosis by far, as I wrote about earlier in what has become a rather long article!  I am genuinely looking forward to my seventh year post diagnosis. I wonder what is in store for me this year?

 

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