Full Circle

This blog began in 2012. At the time my son J was a few months into his first year of a Biomedical Sciences degree. Of all the things I despise about cancer, being diagnosed at that time is in the top five. No-one wants to learn their Mom has cancer when they’ve just committed to three years higher education and live in an unfamiliar environment far from home.  For much of the time J was at University, I was making regular trips to the Oncology centre. It was a surreal and difficult period for us all.

J knew from a young age that he wanted to go into medicine. Last week his wish came true when he took up his post as Physician Associate in Neurology, caring for people who’ve had strokes or other serious brain injuries.

In 2012, surviving cancer meant I could stay around to provide J with the love, support and encouragement we all need when we set out on our lives. Every day I hoped I’d still be here to see him take up the medical career he worked so hard for. I’m hugely grateful that in December 2018, my wish came true too. It is, quite simply, the best Christmas present I could ever imagine.

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MSc Physician Associate Studies with Distinction, 29th November 2018

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Persephone: Being part of a clinical trial

 

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Greek goddess of Spring and Queen of the Underworld.      Persephone: Winter comes when she is in the underworld, Spring arrives when she returns to earth. 

 

The Persephone clinical trial set out to establish whether 6 months treatment with Herceptin is as effective as 12 months for women with early HER2+ breast cancer.

I was diagnosed HER2+ in 2012 and should point out I quickly established Googling HER2+ can scare you senseless. Almost everything I read suggested my situation was bleak. Looking back, I wish I hadn’t found those articles before talking to my consultant. They created unnecessary stress at a time that was already stressful enough.

My consultant didn’t deny the challenges of HER2+ breast cancer but she strongly emphasised a new monoclonal antibody treatment called Herceptin. In her view it improved the outlook for HER2+ patients considerably, but Google articles had yet to catch up with those developments.

If surgery was followed with chemotherapy and Herceptin, early HER2+ breast cancer was probably as treatable as hormone positive breast cancer. I was lucky – in 2012 Herceptin had only just been approved for people like me and without it I might not have been here to write this post!

I cannot deny chemotherapy was something I hoped to avoid. My aunt and mother went through it but neither survived cancer. Once again my consultant offered helpful advice: chemotherapy and Herceptin could help prevent metastases. No one dies of early breast cancer and for early breast cancer patients, the key to survival is preventing metastases. My loved ones didn’t get that chance, they both had metastases and these treatments weren’t available in the 1980’s and 90’s.

I was prescribed FEC-TH, the namesake of this blog and one of the most effective chemotherapy regimes for my particularly aggressive form of cancer. It was an adjuvant (post-surgery) therapy involving several rounds of intravenous anthracyclines followed by a concurrent taxane plus Herceptin protocol, then Herceptin on its own. At the point of consent, my oncologist asked if I’d participate in clinical trials. Breast cancer wiped out at least five generations of women in my family, all below the age of 50. It really is our family curse. Volunteering for trials was therefore quite easy and even if trials couldn’t help me, the prospect of results that might benefit future generations provided something positive to hold on to during a very turbulent period. Without hesitation, my participation in the Persephone Trial began.

Information about trials

Doctors are obliged to provide lots of information because taking part in a trial means trying something new and unproven. The first thing I had to do was read and digest the information about Persephone and there was quite a lot of it. It told me there could be risks, for example if I was randomised into the 6 month treatment group and this proved inferior to 12 months treatment, the likelihood of cancer returning might be increased.  It explained possible benefits too, for example if 6 months treatment was as effective as 12 months in dealing with cancer, it could reduce the risk that I’d suffer heart damage or a serious cardiac event. (Herceptin and anthracyclines can damage the heart, sometimes irreparably). The information also made it clear that if I was randomised into the 6 month group and decided to change my mind, I could withdraw and receive the full 12 months of Herceptin treatment.  Throughout the trial I’d be closely monitored and if I had any problems at all, I could contact people who’d be able to help.

There was a lot of detail and a lot to weigh up, so if you’re considering taking part in a clinical trial, I recommend reading the information all the way through. Then read it again, making notes on anything you’d like your doctor or trial coordinator to explain.  There are no silly questions so ask whatever you need to know or are concerned about. None of us is forced to participate in trials, but for some of us personal history or exhausting the existing range of treatments makes trials the obvious or only option. In a best case scenario, we benefit as trial participants and the research we contribute to also goes on to benefit future generations.

Follow-up during treatment

I was carefully monitored throughout the trial as well as receiving the same excellent standard of care as non-trials patients. In addition, every three weeks I completed a questionnaire summarising my experiences, sense of well-being, impact of treatment on my general health, any side-effects I’d had, and the financial impact of my treatment. Financial impacts for patients are all too often overlooked – I was glad Persephone included this alongside the clinical factors.  Herceptin caused some problems for me and at one point my treatment was delayed. Fortunately this didn’t prevent me continuing in the trial. Your medical team will be able to tell you what the follow-up involves and how the information is used if you consider taking part in a clinical trial.

Follow-up after treatment

In May this year, Persephone reported on its initial findings after four years follow-up with the original trial patients. I was sent information about the results over the summer. My oncologist will follow-up with me for 10 years because I’ve been a trials patient and further reports from the Persephone study might be published along the way or shortly after the 10 year point. Although I’m past the five year ‘no evidence of disease’ milestone which can be significant in early HER2+ breast cancer, returning to the chemotherapy centre still makes me apprehensive. To avoid becoming a jibbering wreck immediately prior to each visit, I’ve convinced myself the extended follow-up period is a good thing. Having someone who really understands cancer keeping an eye on me and knowing they’ll take action if anything remotely suspicious shows up provides a degree of comfort.

This extended period of follow-up also lends itself to some of the commentary about the Persephone trial. One of the areas of uncertainty is the current four-year follow-up. Four years may not be long enough to fully understand the benefits of a six month treatment regime in preventing reoccurrence or distant metastases because cancer can reoccur many years later. (Most but not all HER2+ reoccurrences happen within 5 years).

Outcome of the trial

I’m encouraged and enthusiastic about this, and although my oncologist is deeply scientific (=immune to any high jinks), initial results for some groups of patients made him enthusiastic too.

Over 4000 women with early stage HER2+ breast cancer took part in the Persephone trial and a full article on the research and its outcomes is available here. The National Institute for Health Research (NIHR) reported “89.4% of patients taking six months treatment were free of disease after four years compared with 89.8% of patients taking twelve months of treatment. This shows six months of treatment is as effective as twelve for many women. In addition, only 4% of women in the six month arm stopped taking the drug early because of heart problems compared with 8% in the twelve month arm.”

The NIHR report goes on to say further analysis of tumour and blood samples from trial participants will help researchers understand which women can stop Herceptin at six months, and which women need extended treatment.

Herceptin has already improved the outlook for people with early-stage HER2+ breast cancer. Further information about its impact is available here if you want to see some statistics, but please bear in mind cancer is unpredictable and none of us is purely a statistic.

If the Persephone trial concludes some people can safely receive a shorter treatment regime offering the same cancer survival benefits and a significantly reduced risk of heart damage or serious cardiac events then I’m really glad I took part. Doctors sometimes struggle to find enough patients who are willing to participate in clinical trials. As a patient it can be a daunting prospect. For me, family history and taking part in something with the potential to improve treatment for countless other people as well as myself was the most significant and influential factor.

 

 

Reflections: seven years on

This time seven years ago I was readying myself for the first of numerous major surgeries following a grade 3 HER2+++ breast cancer diagnosis. Back then I wasn’t sure if I’d still be around now. Thankfully I am.

So how are things?

I can’t lie, the journey has been tough at times. I assumed, opportunistically, that after treatment I’d bounce back and be able to do all the things I was able to do before. The oncologist hinted as much, the oncoplastic consultant surgeon was more realistic.

I can do many things, not all, and it isn’t a simple case of the ageing process as I gently head towards 49. There are lots of frustrations, but in spite of everything I love life more than ever and feel enormously grateful to be here. In 2012 that wasn’t a given. As I approach the last few days of my 48th year it seems appropriate to pause for a moment and take stock, now the whole situation is less raw.

Would I take the same course of action again?

This is easy to answer because there wasn’t really a choice. Grade 3 and HER2+++ don’t make for a great combination. If anything I’d have liked shorter gaps between the initial suspicious findings and formal diagnosis, diagnosis and surgery, and surgery and adjuvant therapy. It was almost 7 months until adjuvant therapy commenced, outside the NICE guidelines. It felt like a long time, long enough for any distant cancer cells to take hold. I didn’t want that.

I wish I’d known more about the challenges of surgery and how long it would take to regain my upper body strength (I’m still not as strong as I used to be). I remain glad that I opted for the more radical surgery, because choosing a conservative option may well have seen me going through it all again about now.

What was the most worrying moment?

Although cancer runs in the maternal side of my family – it wiped out the vast majority of my female relatives – I quickly realised just how little I knew about it and how complex it is. As soon as I was diagnosed I wanted it out of my body. I didn’t realise how much biopsy-ing, testing, imaging and investigation takes place before decisions about appropriate surgery, neoadjuvant or adjuvant treatments can be made.

The results of the MRI scan were by far the most worrying event for me because it “lit up like a Christmas tree.” I thought it might be too late even though I’d seen the Dr straight away. I had countless sleepless nights worrying that I’d die at a crucial stage in my son’s life leaving him motherless, homeless and unsupported. I love my family, I really didn’t want to leave them alone and destitute.

Was treatment hard?

On reflection, I think it was. It took 18 months+ and knocked the stuffing out of me. At the time I didn’t realise quite how big a toll it took. I kept pushing myself forward, trying to be “normal,” getting on with life as best I could. But life was far from normal, and normal didn’t include me.

I didn’t feel seriously ill pre-diagnosis even though I was seriously ill. At some points during treatment I wondered what else or how much more I might need to endure. At times I felt extremely ill. The lowest point came when I had to inject myself with granulocyte colony stimulating factor, to combat low white blood cell levels which increase the risk of serious or life-threatening infections. At night the pain in my bones was unimaginable yet still I carried on. That pain is still unlike anything I’d experienced before or since. So yes, treatment was hard but the alternative doesn’t bear thinking about. I’m still here and as far as we know, cancer-free. It was hard but it was worth it.

What else happened?

Having cancer taught me a lot. Psychological lessons included learning my body was no longer my own. I couldn’t trust it and felt trapped in a shell that might break into a thousand hopeless pieces at any moment. Coming to terms with my own fragility and unpredictability took time. Physical lessons involved treatments designed to obliterate the disease that also obliterated my joints, my thought processes and my hearing. Although cognition has improved a little, my joints and hearing are permanently damaged. C’est la vie. Emotional lessons centred on relationships. People who promised to stand with me simply vanished into thin air and that was very hard. Thankfully strangers and acquaintances came closer, they became friends and remain loyal friends today.

More difficult and painful than any other part of this journey was the continuing loss of friends who were also fellow cancer patients. Some older, many younger, these were people for whom surgeries and therapies did not prove successful. There are so very many of them, not ones or twos but tens and tens. My heart gets a little more broken every time I remember friends and loved ones who have died of this spiteful disease, and think of those who are dying now as I write this post. Cancer still kills.

What next?

I don’t plan or daydream. Life is too uncertain and time is too precious for maybes, tomorrow perhaps or one day. I love my family more than ever and make the most of every moment with them. When they’re happy, I’m happy and nothing else matters. I enjoy my work, still thrive on pushing boundaries and encourage my colleagues to do likewise – why spend time in a job that feels like drudgery? I’ve taken control of things I can control (diet, exercise, rest) but I’m relaxed about it, not a zealot. Spending an extra hour in bed when I’m aching or tired isn’t going to kill me, and cancer won’t return just because I drink a glass of wine or eat a decent steak every now and then. I find beauty all around me and spend as much time as possible creating environments where nature can do its thing. In nature I find solace.

I’d like to stay cancer-free and live for a few more decades because life is good this way. But I never take anything for granted.

Such a long time

It’s been such a long time since I’ve written. Not just here at FEC-THis but anywhere really (except reports for work).

Maybe its because life has been busy and recovering after cancer takes a lot of energy. Maybe it because between living and working there isn’t much energy left for anything else. Or maybe it’s just that dwelling on what’s gone before and fretting over what might lay ahead just isn’t my thing (it really isn’t). I don’t want to remember much about what having cancer did to me though it’s all still too vivid to blank out completely. I guess it takes time.

So here I am almost 5 years on. Still alive, still well – with a few non life-threatening health issues to live with – still working, still being a wife, Mom and daughter and still grateful for all the extra days I’ve had even if the cancer treatment itself was far from idyllic.

Aside from ongoing check-ups I thought I’d put long hospital visits well behind me. But life has a funny way of throwing up issues just when you think it’s approaching what might be called normal. Our latest exploits include spending most the last fortnight in an isolation ward, including a 36 hour stint with no sleep, because my son J contracted meningitis.

Cancer is a really crappy disease and now I know meningitis is really crappy too. Within a few hours J went from being a healthy, active, fit young man to completely bed-ridden, very unwell and mainly unconscious. He didn’t move for almost 48 hours. Fortunately the out of hours GP we saw decided J needed to be admitted to hospital and once admitted, they started IV antibiotics, antivirals and fluids almost immediately. Within about 7 days there was a marked improvement and after about 12 days J was almost his usual self.

Once again we’ve been lucky. Lucky we didn’t ignore the symptoms (earlier the same day we’d been told it might be migraine or sinusitis – he’s never suffered with either), lucky we went to a very seasoned out of hours doctor, lucky we got the treatment needed before any long term damage was caused.

Like cancer, this isn’t an experience I’d want to go through again. Diseases that strike kids and young people seem particularly cruel. As a parent you want to keep your children safe but there are some things you just can’t protect them from. For me, this was one of them and it’s worth knowing that meningitis symptoms don’t always involve a rash.

Lots has happened since the last time I wrote here and most of it has been good / normal / uneventful. But life is unpredictable and I guess there’ll always be a few hiccups along the way. It’s a miracle any of us stay sane!

 

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Leaving hospital… and looking a trillion times better than when we went in 🙂

 

Remembrance

 

Maple tree, Clun

“It has been said ‘Time heals all Wounds.’ I don’t agree. The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.” Rose Fitzgerald Kennedy.

It’s been a long while since my last post to FEC-THis. Summer has come and gone, Halloween and Guy Fawkes too.  My country remains perplexed by the decision of the majority of its people to say goodbye to the EU. The same confusion now looks set to grip the US. The catalyst may be different but the root cause seems similar and all the while, pestilence, war, famine and death continue to spread their wares throughout the globe. Tomorrow is Remembrance Sunday, a day when we remember those who have sacrificed themselves to secure and protect our freedom. Over the years many millions have sacrificed yet our freedom remains fragile and we continue to live in troubled times.

It’s good to remember but sometimes it’s good to forget.  Or at least try.

So much has happened since I last wrote here, some of it good, some of it not so good. Pre-cancer levels of health and wellness continue to elude me. Simple things like opening jars or bottle tops are more challenging than they might otherwise have been.  Running, climbing (stairs, steep paths, hills) and dancing are all possible in my head but  unimaginably taxing in reality. Reading, reasoning, analysis and deduction take effort when not so long ago they were entirely effortless.

Life is full of compromises and treating cancer to secure more days on Earth has, at least for me, meant sacrificing many things that came easily before.

Being sad or mad about all of this seems the most natural course of action but those emotions take a lot of energy and no amount of rage or sorrow has ever been able to change the past.  Like the deciduous trees shaking off leaves in readiness for winter, weaving rich carpets of amber, bronze and gold, the last few months have been a time of  reintegration. Time to be in the moment, no past and no future, no wraiths from yesterday or castles in the air of some mythical tomorrow. The trauma that was, the scars that are and whatever might light the way or lurk in darkness along the road ahead, none of it matters. It is what it is, no more and no less.

I began this journey because I needed to save my life, but I wasn’t saving it for me. Putting food on the table and a fire in the hearth for those who depend on me has always been the driver. Four years on, I finally realise my overwhelming sense of duty and responsibility for others is nothing short of a Herculean task – one that my tango with cancer leaves me ill-equipped to complete. So I’ve decided Herculean is not for me, whether that’s capturing the Cretan Bull, bringing back the Mares of Diomedes or simply being the person everyone expects to make everything alright.  In an earlier life this decision would’ve left me riddled with guilt, and plagued with thoughts of failure and defeat. Today it brings a gentle air of comfort, long-awaited tranquility and reprieve.

This weekend I’m remembering all those who sacrificed for my freedom and how very grateful to them I’ll always be. In a small and quiet way I’m also remembering myself.

 

 

 

 

A slog more than fight

Until my mid-teens ‘fight’ meant one of three things:

  1. Squabbles between siblings – verbal, physical, but more often than not both.
  2. Altercations between kids at school, rival gangs, or the heavily inebriated having the kind of night they’d completely forget by morning.
  3. Boxing – where men knocked the stuffing out of each other for money in the name of sport. Female boxers were strongly discouraged at the time.

Since then ‘fight’ has taken on some extra meanings:

4. The role the armed forces conduct and lay down their lives for when politicians, fanatics, dictators or megalomaniacs fail to address their differences peacefully and revert to Neanderthal tactics. Clubbing one’s rivals is a proven solution tried and tested over many millennia.

5. The thing people with life-threatening or terminal illnesses are supposed to do, especially people diagnosed with cancer.

As a simple soul I’m ill equipped to explain why a proportion of humanity continue to pursue theological, political and ideological power-games that lead to more serious and deadly forms of the altercations witnessed in my childhood and teens. It must be something only despots truly understand.

I know a little more about the expectation to fight cancer than I’d ideally like and unfortunately its the kind of knowledge that once incorporated is impossible to forget. The language of cancer is frequently the language of war. People fight cancer, battle with cancer or wage a war on cancer because they are fighters, warriors, or even assassins. On some occasions  people win their cancer fight, but rarely is that completely guaranteed. On other occasions we’re told they battled bravely and courageously but sadly passed away. In real terms cancer is a win:lose scenario but whatever the situation, the language of cancer is full to the brim with fighting talk.

Perhaps societally we find it easier to deal with cancer if we say it’s something people fight. Fights can be won so when someone fights cancer there’s a chance they might win. This in turn can help make it a less frightening prospect for everyone else. School sports events conditioned us from an early age to know the winning team is always where it’s at so we rarely hear talk of people giving up, refusing the fight or waving the white flag of surrender. Giving up just isn’t the done thing, we must stay strong and keep fighting. There’s no glory in coming second, we have to win!  When people die (and lots of us will die from cancer) we hear talk of remaining courageous to the end. Perhaps this too is a means to make the truth easier to bear because someone else just lost their life to a disease we barely understand and still cannot prevent or cure.

I don’t like violence and never fully understood how anyone could fight with themselves so the language of cancer has never proven particularly helpful for me. Like it or not cancer is a bunch of our own cells that proliferate forever – cells that somehow manage to step outside the normal circle of life. Cancer is me, albeit an aberrant version. We are all different and for some people fighting analogies might be hugely helpful. For me the whole cancer thing is more of a slog.

Slog:

  1. to work hard over a long period especially doing work that is difficult or boring.
  2. to travel or move with difficulty, for example through wet, sticky soil or snow, or when you are very tired.

Dealing with cancer has taken considerable effort from me and my medical team. From diagnosis to current day I’ve been fortunate to receive nine separate surgical procedures designed to eradicate cancer, deal with the unwanted after effects of previous surgeries and do as much as possible to prevent any return of a disease with a high propensity to spring up elsewhere. In parallel chemo and monoclonal antibody therapies took place over a period of 10 months, again with the aim of preventing reoccurrence so that I might go on living my life in the quiet, peaceful way I’ve come to enjoy.

My cancer journey to date has taken four years, almost 15% of my adult life. In real terms this is very little – for some people including my own mother, aunt and grandmother it took much more.  I will always be grateful for every extra second gained through the expertise and determination of my medical team because without them my chances were slim to non-existent. Together we have now done everything possible to help me remain cancer free. Only time will tell if it’s been enough.

I haven’t been fighting for four years, I haven’t been brave or courageous and I don’t feel like a warrior. I faced a situation with few options, underwent gruelling treatment with unintended consequences and continue to rebuild my life, including everyday things like walking and working memory. I’ve been unrelenting for four years, enduring and tenacious, and I often feel tired and decrepit. I keep pushing myself hard because I want to do the things I could pre-cancer. Sitting here waiting or wishing for their return isn’t going to work.

In the time it’s taken to walk this cancer journey so far I could have walked around the Earth twice. Don’t get me wrong, I am glad to be here and largely in one piece but that’s not enough because I’m not old enough to be decrepit. When I can once again walk more than a few hundred yards without days of painful repercussions, when I can go up stairs without grasping the handrail for fear my knees will give way and when I can read a book when tired and not have to re-read it next day I’ll be completely overjoyed.

For me this cancer journey continues even though the cancer itself appears to be gone. It’s much more a slog than a fight.

Credit: CRUK

 

 

The daily prompt – Fight.

Seven words on cancer

Family:

They say blood is thicker than water and it’s easy to see why. My family trudge every step of this path with me no matter how challenging. My Dad remains a rock despite the fact that he’s encountered the journey far too many times before and with no happy ending. My Mum would’ve done likewise if cancer hadn’t robbed her of her life at such an early age. M, J and S remain positive, future-focused and encouraging. They all believe I’ll still be here in 30 years and that’s a wonderful vision to hold on to.

Medics:

These people are amazing. The surgeons, oncologists, sonographers, anaesthetists and nurses are skillful, compassionate and dedicated. Behind the scenes there’s a whole community including  histopathologists, biomedical scientists, pharmacists and nutritionists to name but a few.  They’re the driving force behind cancer care and cancer research. Many of us would not be here without them.

Invincible: 

We like to think we are and then we find we’re not. Deep down I’ve always been acutely aware of the fragility and vulnerability of all life on our beautiful blue planet, including my own. I spent 35 years attempting to ignore this until cancer provided an uninvited reality-check. So now I know I’m not invincible but I also know I’m more robust – physically, mentally and spiritually – than imagined.

Friends: 

Whatever the weather some friends will weather the  storm with you. They’ll offer to do things for you (or do things anyway because they know you’re too proud to ask), they’ll help put you back together when you’re in pieces and remind you of all the reasons you need to hold on. Other friends will abandon ship. The wife of a friend explained this to me when I was first diagnosed and I thought her judgement somewhat harsh at the time. We stand by our friends when they’re sick or dying don’t we? I owe her an apology and at the same time I give thanks to the all-weather friends who opted to stay with me.

Health:

Must never be taken for granted. Fit and in the prime of life one day, nose-to-nose with death the next, the turnaround is quite a shock. When the shock subsides a subtle awareness of the uphill journey from illness to wellness begins to dawn and the distance seems so vast. It’s also full of boulders and sinkholes.  I never loved my body but I didn’t hate it, even though it was pre-destined to let me down. As a receptacle for my soul it continues to serve it’s purpose and I’m grateful for that. But it doesn’t feel like me anymore and for however long I’m here, I’ll never be able to trust it again.

Time:

Does not last an eternity. It passes in the blink of an eye and once its gone it can’t be revisited.  Time is too precious to waste so life-changing events shouldn’t be the catalyst for this vital life-lesson. If the art of valuing time was taught in high school,  future adults might stop deluding themselves that they have all the time in the world, plenty of years ahead and are guaranteed to reach a ripe old age. Write all the time related clichés you know on a piece of paper and safely set fire to it. See how quickly it burns?

Death:

We all die. From the day we’re born it’s a one-way ticket and a completely natural part of the circle of life. Developing cancer makes death impossible to overlook and also brings the very real possibility that it will arrive much sooner than anticipated. There’s no getting away from this, no amount of worrying or soul-searching can change the shape of things to come. All I could do was find a way to live with it and in doing so savour every second of every minute of life in this very moment.

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