New milestone, new mission

In a few days I’ll be 50. It’s a milestone I wasn’t sure I’d see and although it’s almost here it feels a little ethereal and bewildering. I’m one of an incredibly small number of women in my family to make it this far.

I don’t quite understand how I’m still doing OK when all our paths have been so similar. Most petered out at 40-something yet here I am, mostly intact, mostly functional, and mostly able to do the things 50, 40 or 30 year olds can do.

I’m enormously grateful for the extra time cancer care and treatment has offered me, though treatment itself was not a walk in the park. Regaining anything like my former levels of stamina, fitness and overall wellness has proven tougher still but at last this hard, hard, slog is paying off:

– 15kg lighter

– back at “healthy” BMI

– almost as strong / fit as pre-surgery

– auto-immune conditions in check

These are all such tiny things, the kind we take for granted when all is well. They may as well be miracles though because they make such a big difference to me. Time and improved quality of life are the most priceless gifts, and unexpected presents for a birthday I thought I might never achieve. Other women in my family endured extensive cancer treatment too, some even had the same chemo regime, but no-one can explain why I’m here and they’re not.

This is a mystery I’ll never solve and my time, precious as it is, will always be tinged with sadness for those who didn’t make it to the other side of cancer. They wanted, and deserved, another chance too.

It’s taken a lot of soul-searching to reluctantly accept we don’t all reach the other side of cancer treatment. This whole experience, mine and my family members, made me think very deeply about how I spend the ‘extra’ time I never quite thought I’d have. In death there is little I can do for my many loved ones lost far too young to cancer except honour their memory in the most wholehearted way possible. So it seems timely and personally meaningful that surviving cancer helped me chose a new direction in life, one where I can make a difference for others when they might need it most.

I know this won’t be easy but I’m thrilled to have been accepted to train as a nurse. I hope in time I’ll be able to give back some of the care, kindness and compassion that helped heal me enough to truly appreciate the value of life, the importance of choice and the significance of dignity in dying and death.

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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.”

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

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…?

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.

Close the door, keep walking

Close the door, keep walking

Wherever you are, whatever your situation, I wish all readers much happiness, love and wellness for everyday of 2018, these are life’s greatest riches and I hope you find them in abundance.

2017 was a difficult year for us. Although there were some high points, there were also terrors. The kind that bring sleepless nights and frantic days. We learn from all experiences, the good and the bad, but last night we pushed the door firmly closed on 2017.

The wonders and possibilities of 2018 are most welcome because the last 365 days have been a long, hard slog. Though the desire to wipe away the past is strong there are tributes to pay and deep gratitude to note before moving on:

  • For the medics who helped J survive meningitis and J’s will to recover from a very traumatic experience
  • For my father who continues to help others and spares little thought for himself
  • For our journey to the furthest reaches of Norway and our once in a lifetime experience of the Mirrie Dancers
  • For friends and family across the globe, and loved ones lost but never forgotten
  • For food, clean water, warmth and shelter – all so easily taken for granted yet still beyond reach for far too many
  • For life, however long it lasts, because every day is a day further from cancer. This year will be my sixth post-diagnosis.

This new year has barely started but it comes complete with some significant milestones for us, big events that will shape the future in ways we can’t fully imagine as yet. It also comes with lots of blank canvas, new days ready to receive whatever memories we chose to paint there. We are a family of three, and all three of us have brushed with death at an age that is far from being “old.” So as we continue this journey we remain optimistic about the possibilities that lie ahead. There is much to explore and too little time to grumble along the way. We know now that wherever the path takes us, we’ll make the most of it and keep walking on. It is, in every sense, a happy new year.

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 🙂