All in One Day: three stories from medics and carers working at Christmas

For many of us work is winding down and we’re getting ready for the fun and festivities of Christmas. Even if we don’t celebrate, some time off comes as a welcome break at the end of another busy year. Food, holidays, gifts and sales have become synonymous with the season of joy and goodwill but contrary to the adverts on TV, over-eating, over-spending and over indulging aren’t what Christmas is really all about.

This post shares three short stories from medics and carers who’ll be having a very different kind of Christmas. After reading this I hope like me you’ll spare a thought for everyone who epitomises the true meaning of Christmas, “giving up one’s very self to think only of others…”

The Nurse

“I know I can’t make them love their baby. I know I can’t ignore a baby at risk. And even though I know it’s absolutely the right thing – because it isn’t safe for a child to be there – I still feel bad for all of them. Removing a child is a last resort and a whole panel is involved. But the parent(s) blame me anyway, and when that happens it makes me feel like I failed.”

After working with a young mother, her on/off partner and their very young son, The Nurse assessed the home environment was unlikely to improve. Domestic abuse and extensive drug use surrounded the teen mum. By default, it surrounded her young son too. On a grey, wet December day The Nurse took part in care proceedings – something she finds stressful but all too frequent in her type of role – knowing her evidence might lead to removal of the child, possibly for fostering or adoption. Two previous children had already been placed in care. “When the meeting finished, she (the mother) was emotionless about her son. It was if he didn’t exist. Afterwards she mouthed “you did this” and the look she gave me, it was withering. I know I did the right thing, but I just keep asking myself what more could I have done?”

The Carers

“We’ve worked every Christmas and New Year for over ten years. It’s difficult to get cover at Christmas, but peoples’ care can’t suddenly stop. We work because our clients still need washing, dressing and breakfast. They need a friendly face who’ll arrive again at lunchtime, make sure they’re clean and make sure they take their medicine alongside lunch. Then we’re back again in the evening, wash and change the client, and get them safely tucked into bed. Put the dirty laundry into wash so it’s ready for the morning, make sure the client is settled, turn off the lights and then head home. If we’re lucky we’ll be back by 11pm.”

The Carers work from today until New Year’s Day without a break. They’re out on the road at 6.30am every morning, get a couple of short breaks if they’re lucky and their shift ends around 10.30pm. They visit multiple clients with a range of care needs. “This job doesn’t suit everyone. Sometimes clients can be difficult because of their illness, sometimes they’re very confused or upset. There’s a lot of poo to clean up as well, but you just get on with that! Very often we’re the only people some of our clients will see this side of the New Year. So it might mean finishing after midnight, but we give some extra time. No one wants to feel alone over Christmas, do they.”

The Medic

“What an afternoon: one person has chest sepsis, another person had a huge upper GI bleed and nearly arrested, another has critical stenosis of their cartoid arteries. None of them will be well enough to go home for Christmas. I felt completely frazzled at the end of my shift today, and this afternoon really impacted my mood. Working in a major hospital is rewarding but it’s also challenging and this all happened on the ward, not in A&E. We are short staffed, which doesn’t help.”

The Medic’s ideal Christmas this year would be a peaceful one with as little stress as possible, a chance to unwind, sit down for more than ten minutes to eat lunch, and catch up on sleep. “Yesterday I had to tell a family their loved one was dying and probably wouldn’t make it to Christmas. Everyone thinks it’s a happy time of the year, but it isn’t happy for everyone. Inevitably some of that stays with you.”

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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

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.

 

 

Five things about Autoimmune conditions and me

I’m not an expert in this field but I’m trying to understand it as best I can. In much the same way that I set about researching information on my particular form of cancer, I’m now researching and learning about autoimmune conditions. I have them and they run in multiple generations of my family. Since none of my affected relatives are here to tell me about their experiences, I’m trying to piece it together myself. It’s a bit like looking for a needle in a haystack but so far I’ve discovered five things:

1. How many people are affected?

It’s difficult to find accurate figures on the number of people with autoimmune conditions. Estimates vary considerably. The American Autoimmune Related Diseases Association suggests 50 million Americans – more than twice as many as the National Institutes of Health suggest. That’s a significant difference. Most sources seem to agree women are more likely to be affected than men – that holds true within my own family. Overall, the prevalence of autoimmune conditions seems to be rising. As yet no-one really knows why.

2. How many autoimmune conditions are there and how are they diagnosed?

There are many autoimmune conditions – at least 80 to 100 and despite research, they can be difficult to diagnose. For some people diagnosis is made by accident when assessing a seemingly more obvious illness. That happened to me. For others, diagnosis becomes a process of elimination – which means undergoing many different tests to rule out common or more obvious causes until such time as a less likely cause is deemed the culprit. As a patient, this can feel frustrating and traumatic in equal measure, especially when the outcome always seems to involve more tests. This happened to me too. Fortunately my GP is not in the habit of passing things off as a virus or post-viral fatigue.

3. Does it run in the family or are the conditions linked?

With my scientific hat on, it looks likely certain autoimmune conditions are linked. Having one in the family might mean other members of the family can have the same or similar conditions. Having one condition myself might generate a greater likelihood of having another… Or not… because autoimmunity seems to be another a very complex area of medicine and quite poorly understood unless you specialise in this field. My level of science doesn’t extend to anywhere near the expertise required to get to grips with all of this. Even if it did, our propensity for focusing on specific diseases or groups of symptoms makes it possible to miss subtle links – hence the turbulent experience of diagnosis via a process of elimination.

4. Is it worrying?

None of us wants to be or feel unwell. Having unexplained and debilitating symptoms is worrying. Having test after test without any clear answers becomes far more worrying, even for those of us who’ve been through countless tests, treatments and operations before. Without solid answers, the hamster wheel of tests can eventually lead to self-doubt, questioning your sanity or convincing yourself you’re imagining it all. I only escaped this downward spiral because a very dear friend with CFS had similar experiences. She isn’t insane and hadn’t imagined her chronic and very debilitating illness, but for years an array of professionals told her there was nothing wrong, even when she could barely stand or stay awake.

5. Has it changed things?

It’s said with age comes wisdom and I’d like to live long enough to be wise. Surviving a very aggressive cancer didn’t grant me wisdom but I do think quite differently about life. My health dipped suddenly a few weeks ago and a plethora of tests ensued. It’s autoimmune, not more cancer. In my world almost anything is better than more cancer, even if it isn’t great. Pre-cancer I’d have ignored this latest health thing in favour of work. Now I have a more considered approach. Of all the rogue genes in my gene pool, ‘nine-lives-of-a-cat gene’ isn’t going to be one of them. I’ve spent enough time in hospitals to absorb the fact life is fragile. So I’m giving up the career I’ve worked my socks off for over the last 20 years because simply being here for my loved ones for as long as possible is more important to me than anything else. My work has been a buzz and somewhat addictive; stretching, fun, full-on and frustrating, usually in that order. I’ll miss that I’m sure. But in 2019 and for the first time ever I get to take a proper break, take proper care of myself, and get on with the business of living instead of simply existing.

If life zooms by like a bullet train, people along the route become a faceless blur. Why have a family album full of blurs when pausing for a while is all it takes to stay in focus, and experience the detail in full HD…?