Category: Axial spondyloarthritis | Living with Spondyloarthritis

Climbing the Eiger at 60?

“You’ve got to be kidding!” said my friend Jeannie about my plan to climb the Eiger over the Mittellegi ridge. Or maybe she thought that I was mad. After all, I have suffered from severe Spondyloarthritis and moderately severe Inflammatory Bowel Disease for decades.

However, the medication I take has a huge positive effect on my quality of life and makes such a mad plan thinkable. But there is a big difference between feeling ok, with bearable pain and being able to manage to get through the day, and feeling really, really fit and strong and confident. And that is the change in the last two years since I became aware of the power of “lifestyle medicine”.

Changes in my lifestyle have transformed my life and made it possible for me – a 60 year old woman with chronic illness – to climb the Eiger. I want to share my experience. Maybe my learnings will be useful for others. But please remember, I’m not a doctor and this is not medical advice. Everybody is different. Try things out, get professional support if you can, and observe carefully what works for you!

If you get to the end of this blog there is a slide show of the Eiger tour!

What is lifestyle medicine?

According the American College of Lifestyle Medicine, it uses evidence-based practice to help people adopt and sustain healthy behaviour that affects health and quality of life. Some Lifestyle health factors are now well-established: don’t smoke; keep your weight under control; exercise regularly. But the benefits of taking these lifestyle changes even further don’t seem to be recommended by most doctors. Perhaps they aren’t proven enough, or not well-known, or not believed in. For whatever reasons, these are all things that I have found out more or less for myself.

Lifestyle medicine focuses on sleep, nutrition, exercise, and stress reduction.

Sleep

Worries, overwork or medication have all affected my ability to get a good nights’ sleep in recent years. Many people know what a problem insomnia can be, and how lack of regular sleep can affect well-being, and how great it is to get a good night’s sleep. One source of support has been from Dr. Guy Meadows and his approach called ACT (Acceptance and Commitment Therapy). At the Sleep School he teaches how to overcome insomnia by observation and acceptance. It often works for me. Trying to control my fears and anxieties in this way matches my approach to Stress Reduction through meditation and mindfulness (see below).

However, the most important factor affecting my sleep is nutrition, which I will explain in more detail.

Nutrition

I’ve been watching carefully what I eat for some time, and have reported my experience in a previous blog called Am I really what I eat? I am still following the recommendations that I received from dieticians, and eat a Mediterranean diet with lots of fruit and vegetables. Now I can’t imagine eating any other way. It’s delicious!

But what about eating less or less often? My first thoughts and impressions about Fasting were A new F-word: FASTING – Love or Hate? Since starting interval fasting in August 2019, I believe that it has had a huge effect on my well-being!

There has been a lot written about diet as a factor in controlling inflammatory diseases, but what I have discovered in the last 6 months or so, is that it is just as important when I eat, as what I eat. Interval fasting has made a real difference to my sensitive gut, and I believe that reducing intestinal irritation, or even inflammation in my gut affects my whole well-being and may even have contributed to reducing inflammation in my back and joints. For over 6 months now, I generally eat my last meal by 6pm in the evening, and fast for 16 hours, meaning that I have a herb tea in the morning and then a delicious breakfast with coffee, fruit, whole grain muesli and yogurt sometime after 10am.

Dr Satchidananda Panda of the Salk Institute of Biological Sciences in California explores the circadian rhythm, and how this cycle of functions, which repeat themselves over 24 hours, affects our performance, mood and overall health. The best-known example is the sleep cycle. Dr. Panda believes that the benefit of sleep for the brain in the circadian rhythm is just the tip of the iceberg. Other organs have a circadian rhythm and also need time to rest and recuperate, such as the digestive system. The circadian clock may even mediate the immune system. He has tested the benefits of fasting extensively over the last 20 years and believes that every cell in our body has its own circadian clock. Every hormone, neurotransmitter, gene in our body has times when it functions best, and times when it needs to rest, repair, and reset. The circadian clock is not just linked to sleeping, but also to eating and exercising. So, it’s important not just to sleep at the right time, but also to eat at the right time.

His first results were with mice who were given a set “Western” diet. One group could only eat within a limited time window of 8 hours. The other could eat exactly the same amount of food, but without any time restrictions. After a few weeks, the mice who fasted 16 hours a day were much slimmer, more energetic and generally healthier than the mice who could eat or snack all day. In the last 5 years he has extended his research to thousands of human volunteers, who monitor their eating habits. The results indicate that similar results can improve the well-being of people. Apart from weight loss, improved mood, better sleeping, trial participants report other benefits such as reduced joint pain and inflammation. Dr. Panda explains his work in the BBC podcast Don’t tell me the score.

This seems entirely plausible to me, because the effect of interval fasting in the last months on my digestion and thus on my general well-being has been nothing less than dramatic. Through fasting I give my digestive system a period of down time when it doesn’t have to digest new food and can rest and repair. I can feel how my gut is more relaxed, how much better I can sleep, and how energised I am. For somebody who has suffered from a leaky gut and chronic inflammation for decades, this is a real gift for me.

If you understand the science (which sadly I am not trained in), then this work is summarized here: Mattson MP, Allison DB, Fontana L, Harvie M, Longo VD, Malaisse WJ, Mosley M, Notterpek L, Ravussin E, Scheer FA, Seyfried TN, Varady KA, Panda S. Meal frequency and timing in health and disease. Proc Natl Acad Sci U S A. 2014 Nov 25;111(47):16647-53. doi: 10.1073/pnas.1413965111. Epub 2014 Nov 17. PMID: 25404320; PMCID: PMC4250148.

Getting fit

To keep my spirits up during Lockdown I made a plan “5 tips to manage your day” which included daily exercise. I used an online fitness programme with a huge of variety of options from stretching and yoga through Pilates to PIIT (professional intensive interval training!). It was amazing how doing this every morning for several months made me fitter than I could ever have imagined, despite never going far from my own house, let alone to the mountains.

Stress Reduction

The key to stress reduction for me is a few minutes of mindfulness or meditation before starting the day. Collecting my thoughts and intentions by keeping a journal also helps. If you are interested in this topic, I reflected on Stress Reduction in a previous blog, the Lockdown.

Putting it all together to climb the Eiger!

These practices all help disease management and improve my well-being. It’s a gradual process. It has taken months for lifestyle changes to translate into improved well-being. Discoveries have been a process of trial and error. No clinician has advised me to adopt these practices. I have had to sort through the available material and decide myself what is quackery and what is responsible advice. If I’m not sure about a theory, I check if the author of recommendations has been willing to expose his or her ideas to scrutiny by publishing them. If there are no recent publications on PubMed, then I’m sceptical about whether the work is serious, and discard it.

There needs to be much more research to provide evidence-based, mainstream recommendations for the benefit of all patients. The Spondylitis Association of America recently published an excellent webinar on lifestyle healthcare, but otherwise it’s hard to find trustworthy information. I believe that if healthcare research were more centred on patients well-being, rather than being driven by commercial considerations or personal aspirations, these areas would be given much higher priority.

Above all, I believe that without all these lifestyle changes…. I never, ever, could have climbed the Eiger at the age of 60!

Here is the Eiger tour in pictures – enjoy!

The whole Eiger tour from the tiny hut on the right to the descent to the left
Ascent to the hut (1)
Ascent to the hut (2)
Arrival at Mittellegi hut
Sundown before the tour
Climbing at daybreak (Photo: J. Zaccaron)
Two more climbers were behind us
Wonderful rock
Warm sunshine at last
Grindelwald below to the right
The glaciers of the Aletsch UNESCO World Heritage Site below to the left
Climbing, climbing (J. Zaccaron)
Much narrower than that: the thinnest snow ridge ever (J. Zaccaron)
Summit after 4 hours!
South: Ewigschneefäld (Eternal snow field)
North: Looking towards Bern
East: Schreck- and Finsteraarhorn
West: Mönch, and Mont Blanc in the distance
Looking down
Walking down (J. Zaccaron)
Abseiling down
Sometimes going up again (J. Zaccaron)
The glacier is getting closer
Last steps to the hut
View of the ridge on the train ride home

Covid-19 Lockdown: how is it going?

As the Lockdown started in Switzerland in mid-March I wrote about my strategy to manage Corona times. I named 5 things that I thought might help me through this extraordinary period. So where am I now? How do I feel?

Today decisive measures will be loosened, schools, shops and restaurants will open again. Like many Swiss people I am relieved that the last two months have not been as deadly as anticipated. But I am also deeply mistrusting. Will there be a second wave? Why is it ok to open up now? Weren’t we told that there has to be widespread reliable testing first? So much is unknown and there are about as many opinions on the pandemic outcome, as there are people expressing them.

My personal expectation is that it’s going to be a long time until the health authorities tell me that I can embrace the people I love …. travel to places I long to visit….. live without fear that I may become ill, or cause harm to other people…… I’m not even sure to what extent I can make my own judgements or must abide by regulations. What is my responsibility to myself and to the society that I live in? How is the lockdown impacting my health and well-being?

So, time to revisit my intentions, examine my feelings, and consider…

How did the 5 intentions help me?

Moving my body

A trainer sent me a link to a fitness studio which was broadcasting about three daily workouts – everything from Yoga to tough Interval Training. So I’ve done a workout every morning, and it really feels terrific. Sometimes went for a run or walk instead, but mostly I was @home.

Meditating

After a shaky start, a friend told me that Jon Kabat-Zinn was broadcasting mindfulness to thousands of people every evening during the pandemic. Bless him! His talks have been a marvellously soothing and comforting way to end the day. Sometimes we break out after the meditation session into small groups on zoom and exchange ideas and experiences across continents. I’m slowly understanding what mindfulness is about.

Getting overdue tasks done

Every Sunday evening, I take a piece of paper and write on it what I want to get done the next week. Work, but also household chores, gardening, reading. Many things I enjoy, and some I don’t – like doing my tax declaration. I’ve got quite a lot done and found a good structure, but I’ve been so preoccupied with ticking things off on my list, I sometimes forgot to enjoy what I was doing.

TV before bedtime

It’s an almost morbid fascination following the world in crisis and how different leaders and cultures are managing it. I was often drawn to the News in the evening. There are also many interesting “in depth” programmes. Watching them in the evenings nevertheless made me miserable and unable to sleep. It took me a long time to stop doing this to myself.

Love and compassion

It’s been easy to remember the power of love and compassion. The wonderful gestures of love and solidarity, particularly through the work of artists and musicians on social media, or spontaneous online support groups, or neighbourhood help with shopping or singing on balconies. The marvellous dedication of front-line health workers, and essential service workers delivering our food, and generally keeping things running has been quite extraordinary. (Meanwhile many of the white-collar office community enjoyed the luxury of deceleration in lockdown and closer family life offered by home office working).

So, everything is fine?

You might think everything is ok for me. Actually, reading my journal of the last 6 weeks is quite sobering. I write about nice things I did, comforting phone calls with friends, baking tasty cakes, sunshine, making a fire in my garden in the evening, interesting podcasts, new fulfilling work, and yet … my entries are short and terse. Phrases like “I feel better now” or “I feel ok” appear frequently. Beyond the reports of my flourishing activity with the 5 tricks to fight the Coronavirus, I also read about sleepless nights, a sort of numbing dread and disbelief, loneliness and boredom.

Anybody else?

I imagine many of us feel this way. The uncertainty of the future has become threatening. Strange, when you think about it, because the future is unknown and uncertain by definition. It always will be, however much we try to plan and insure against risks.

I remember the nuclear disaster at Chernobyl in 1986, which also happened during a wonderful April. Living in the Black Forest of Southern Germany at the time, the beauty of the emerging green and the spring light was in stark contrast to the unseen threat of radioactivity that the people in Southern Germany felt was literally raining down onto them. This crisis feels similar, except the enemy hides not in the clouds, but in people and creates distrusts even amongst ourselves. People I encountered on walks near my home sometimes didn’t even look at me, let alone greet me. We were all so afraid.

How am I touched by events?

The word “touch” has become key to me during these times. I am touched by the examples of solidarity that I have seen. I am touched by beautiful expressions of humanity and creativity that artists from all walks of life and everywhere in the world – both professional and amateur – are creating and spreading freely on the internet. I am touched by the friendship that I experience from neighbours and by the new encounters with people on the internet, who I have never personally met. I am touched by the appalling suffering that I have watched on television or can imagine just by reading newspapers.

The UN reports that the number of people on earth facing “acute food shortages” will more than double this year. I am touched and horrified by the thought that actually nobody has to starve, even now. If the wealthy gave to the poor, then the millions of workers worldwide who have lost their employment and have no income wouldn’t be in danger of starving.

Many people are faced by existential crisis, and even death. The world is on an unfathomable roller-coaster of transformation. My mind and soul have been touched during this pandemic as never before. However, in all this inner chaos, my body has got left behind. I have not been touched physically: not since the beginning of the lockdown and the introduction of social distancing.

After 2 months, I am realising what this means. I acutely miss the touch of a handshake, or an embrace, a close dance or a kiss… I even miss my physiotherapist extending a joint or massaging a tense muscle. I believe that this is the source of my strange despondency and the feeling of emptiness.

By nature we are beings that need physical contact. Documentaries show primates who groom each other to reduce stress and resolve conflict. Scientific papers report about the various hormones that are produced by touching. There is even a medical term for what I am experiencing: “touch starved” — also known as skin hunger or touch deprivation. There is information on many webpages describing this phenomenon and what I have so intensely felt in recent weeks. Lockdown is opening up in many countries, but even in these places, people at risk are still being told to shield themselves and maintain the strict rules. If the post lockdown “normal” is to continue isolating people at risk, the effects of touch starvation must be addressed, because it is as important as getting food to people. People are not being nourished adequately, if we just leave a bag of groceries on their doorsteps.

Groceries delivered to people sheltering at home in the Covid-19 pandemic. Photo by Alex Alpin — Groceries delivered to the doorstop (Alex Olpin)

Easter poetry in Corona times

A couple of weeks ago I got a e-mail mail containing a chain letter in English asking me to send a poem or quote to somebody and then put my name second on the list. I NEVER answer chain letters. NEVER!

But this time I hesitated, and reflected. The request was sent to me by a woman whom I am fond of…. I love poetry and miss sharing it with friends…. I am anxious and uncertain, as we all are, and as are these times… I am questioning everything in my life, so why not question this decision?…. As time progresses, I increasing believe and hope that our lives must change after the Covid-19 pandemic…. Desired change can start with me.

Therefore, I responded to the chain letter … and was richly rewarded by lots of beautiful thoughts and poems, which I have copied to you below.

I tried to do the same thing in German, but got almost no responses. I don’t know why. Maybe it’s a cultural thing. So I’ve added a couple of things of my own, or that I found on the internet for the German pages of my blog.

By the way, last Tuesday was the Spring Full moon, when the moon appears larger, because it’s closer to earth. The picture is taken from my balcony.

John Donne Meditation XVII: Devotions upon Emergent Occasions

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Kitty O’Meara

“And the people stayed home. And read books, and listened, and rested, and exercised, and made art, and played games, and grew gardens full of fresh food, and learned new ways of being, and were still. And listened more deeply. Some meditated, some prayed, some danced. Some met their shadows. And the people began to think differently.
“And the people healed. And, in the absence of people living in ignorant, dangerous, mindless, and heartless ways, the earth began to heal.
“And when the danger passed, and the people joined together again, they grieved their losses, and made new choices, and dreamed new images, and created new ways to live and heal the earth fully, as they had been healed.”

An African saying

Worrying does not
take away tomorrow’s
troubles, it takes away
today’s peace

Doubletake by Seamus Heaney

Human beings suffer,
they torture one another,
they get hurt and get hard.
No poem or play or song
can fully right a wrong
inflicted and endured.

The innocent in gaols
beat on their bars together.
A hunger-striker’s father
stands in the graveyard dumb.
The police widow in veils
faints at the funeral home

History says, Don’t hope
on this side of the grave.
But then, once in a lifetime
the longed for tidal wave
of justice can rise up,
and hope and history rhyme.

So hope for a great sea-change
on the far side of revenge.
Believe that a further shore
is reachable from here.
Believe in miracles
and cures and healing wells.

Call the miracle self-healing:
The utter self-revealing
double-take of feeling.
if there’s fire on the mountain
or lightning and storm
and a god speaks from the sky.

That means someone is hearing
the outcry and the birth-cry
of new life at its term.

Unknown

History will remember when the world stopped And flights stayed on the ground And cars parked in the street And trains didn’t run

History will remember when schools closed And children stayed indoors And medical staff walked towards the fire And they didn’t run

History will remember when people sang
On their balconies, in isolation
But so very much together
In courage and song

History will remember when the people fought For their old and their weak Protected the vulnerable By doing nothing at all

History will remember when the virus left And houses opened And the people came out And hugged and kissed And started again

Kinder than before

Ask for it – unknown

Ask for healing, clarity, peace, wisdom,
and guidance. Ask for abundance,
creativity, light and love. Don’t be timid
in your prayers or your request. Be
bold. Be positive. Be grateful as
everything you’re asking for is already
making its way to you

John Milton Paradise Lost, Book II

This horror will grow mild, this darkness light:⁠
Besides what hope the never ending flight
Of future days may bring, what chance, what change
Worth waiting, since our present lot appears
For happy though but ill, for ill not worst;
If we procure not to ourselves more woe.”

‘It Only Hurts For A Little While’ from CD ‘Croonin’ with Anne Murray

It’s so easy to be smart with somebody else’s heart!

Leisure, William Henry Davies

What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this if, full of care,
We have no time to stand and stare.

Coronavirus: 5 tips to manage your day

The news gets grimmer every day. Many of us are living in Lockdown. We are frightened and understandably so. The Coronavirus disease is causing a pandemic which is shaking our beliefs, culture, daily habits and the very essence of our lives. These are life changing events for us all. Whatever this leads to, whatever we suffer, or learn, I suspect life will never quite be the same again.

Will I fall into a chasm of fear, helplessness and despair? I’ve been there, and that taught me that we have choices and it’s never as bad as our fantasy and creative mind can allow it to be. Rather use that creativity to generate hope and optimism, and on a strictly practical level – make a plan to keep myself afloat.

5 things to manage Corona times

What follows is my list of things to do every day. If I keep to them, I will be OK. It helped me to visualise the plan. My artistic efforts are pictured above!

Maybe a plan like this might be helpful to you? Other ideas are around. For instance, the Unicef Executive Director, Henrietta H. Fore has been broadcasting a Video diary from her home office. In the broadcast on Day 4, she recommends to make a Well-being plan.
(If it’s relevant to you, Unicef’s advice about looking after children and teens during the pandemic might also be worth reading.)

So here is my personal list of what I need everyday for well-being.

1. Move your body!

Movement and sport is absolutely essential to me. It’s the way to keep Spondyloarthritis at bay. If I move, I’m usually pain free. If I don’t, the pain comes back within a few days. So how to replace the weekend mountain trips, the back classes, training gym, climbing gym, physiotherapy and the fitness centre which keep me moving?

As long as I’m allowed to, I will go running in the hills behind my house early in the morning. I meet nobody and feel safe. Or some days, I practice Rickie Moore’s wonderful yoga for inner peace, which takes an hour. I can also go walking. The incredible value of walking was made clear to me by the neurologist Prof. Shane O’Mara on a BBC podcast called Don’t tell me the score. In summary, walking benefits our muscles and posture, helps to protect and repair organs, aids digestion and can even turn back the aging of our brains. Moreover, it encourages us to think more creatively, helps our mood to improve and our stress levels to fall. I’ve tried to follow Prof. O’Mara’s recommendations on walking, and I really think that they work. A quick summary with 8 reasons why walking is so good for you is here.

2. Look after stress levels by meditating

Sometimes I get really stressed out, which leads me to make mistakes and misjudge situations. I can even feel my heartbeat accelerating, or my voice getting tense. To relax again, I need to get myself into the here and now. I’m never tense if I’m in the present moment. It’s reflecting on some event in the past, or worrying about the future that makes me stressed.

Climbing, running, swimming, or other physical activities all help to concentrate the mind, but meditation has a special healing quality. Sometimes I can sit on my cushion and physically feel the tension falling away from my body. There are so many schools and techniques to meditate. If you are curious, it’s all on the internet.

Mindfulness is also a very helpful tool to reduce stress. It’s not the same as meditation. I like this simple way of distinguishing these two practices:

Mindfulness is the awareness of “some-thing,” while meditation is the awareness of “no-thing.” (here’s the reference)

Mindfulness is being aware of the present moment. It’s noticing and paying attention to thoughts, feelings, behavior, and everything else, but without making judgements. Jon Kabat-Zinn founded the Mindfulness-Based Stress Reduction (MBSR) program at the University of Massachusetts to treat the chronically ill.

Personally, I prefer meditation. It’s the fascination of trying to get to a completely different level of consciousness. Albert Einstein famously said, “We cannot solve our problems with the same thinking we used when we created them.” Meditation often enables me to reframe problems and find solutions.

There are masses of information on the internet. I find Andy Puddicombe a fascinating person. He co-founded the App called Headspace. I don’t know it, although it’s probably the most popular one. He has worked hard to make Meditation and Mindfulness more accessible and relevant in today’s world.

I’ve been meditating for about 8 years now. Sometimes only for 10 minutes, but every day is the key. I still get distracted a lot, and this is quite normal, unless you are really, really experienced. My practice has not (yet) enabled me to switch into altered consciousness every time I sit on my cushion. My practice is learning to catch myself drifting off into other thoughts and bring myself back to quietness. This does help with problem-solving and calms my mind too. I also enjoy meditations that help develop a certain state of mind, such as Loving Kindness, or Compassion. There is no wrong and right way to meditate!

3. Get some overdue work done

Lots of people feel this way about the Lockdown. They can finally get some work done, which they’ve wanted to do for ages, or read some of those books stacked on the bedside table…. I am looking forward to blogging more and am launching new professional activities as a patient representative/advocate in medical research. Maybe you have other projects, or can contact old friends again.

4. NO TV before bedtime!

We all know that we shouldn’t be online in the evening, let alone watching the news. A few evenings ago there was an evening report from an intensive care unit in Bergamo in Italy, a city 30km from the Swiss border, where an old friend lives, who had a liver transplant. I was stupid enough to watch it – woke at 3am, feeling sick, my head spinning. I felt feverish but was too dizzy to move. When I did manage to measure my temperature, I had slightly over 35C! No fever whatsoever!

In the evenings I am generally to tired to read, so I need to do something very passive. That’s why TV is such a temptation. My solution was to get out some of those old coffee table books with stunning photos about beautiful places in the world and look at them again. Wonderful! I haven’t looked at such books for years!

5. Remember the power of Love and Compassion

It’s important to me to feel connected with others and to feel the power of Love and Compassion. A marvellous doctor called Sir Harry Burns, who I have been so privileged to work with, emphasised the need for Love and Compassion in health care in a recent talk. He was referring to the care of others, but it’s also important when caring for ourselves. (Sir Harry has also done a great TED talk on What causes Wellness).

I’ve heard that Neuroscience says that it is better for your health and well-being to give than to receive. I don’t know if there is really any evidence-based research on this, but I can believe it. Helping each other, staying in touch, supporting each other, will make a big difference to how we overcome this crisis. And I am sure that despite a bit of hamster shopping, people will rise to the occasion. Just knowing this, gives me strength and hope for the days and weeks to come.

Take care, stay at home, stay healthy, and stay in the space of Love and Compassion.

Was 2019 really that bad?

If you’d told me in March 2019 that I wouldn’t write another blog on “arthritis and me” until 2020, I would have laughed and said you didn’t know me!

I had started two new drafts. They will be finished one day, but first I have to write about breast cancer and get that off my chest – excuse the intended pun.

“Breast cancer and me”? I mean…. that happens to others. People who are already managing chronic disorders don’t get cancer as well. Or do they?

Well yes, it seems that they do. In that sense people with chronic disorders aren’t different from anybody else. Nevertheless, most of my friends were very shocked and found it rather unfair and that I had already had my share of health issues in the last few years.

Today, looking back from these first days of 2020, I feel that apart from the fact of not being able to write any blogs or do much beyond managing the daily essentials for several months, 2019 was not such a bad year.

The year didn’t start so well and that already blocked my ability to write. In July I went for a regular Mammography as is recommended every 2-3 years for women of my age. A couple of days later the phone rang and to my surprise I was asked to come into hospital for a check. “It’s probably just a shadow,” the woman on the phone said. “It’s usually nothing. But to make sure, you should come in.” Another couple of days later I was under the ultrasound and then it seemed like endless samples were taken for biopsy using a sort of pressure gun that was held against my breast and took tiny bits of tissue. Very uncomfortable

I was asked whether I wanted the results by letter or phone. It seemed logical to get the information as soon as possible, so I opted for a phone call. This came in the early evening two days later. The doctor who had taken the samples rang me. “Good evening, Ms Safford”, she said. “Unfortunately….“ and after that I understood almost nothing. My reptilian brain, the Amygdala took over. Flight or Fight. My cognitive abilities were gone. I have since learnt from others that this is normal. It’s the shock.

A week or two later the exact diagnosis was explained to me. Luckily, I took a friend to the hospital with me, because despite my efforts to listen, I was still unable to take the information in. My friend took notes and then explained to me, I understood that the cancer had not spread. Treatment would be surgery and radiology over several weeks, but no chemotherapy. Most importantly, I would not die and could fully expect to be cured.

Surgery and radiotherapy went as planned. It was a strange experience having a disease that is considered so serious and generates so much fear, yet my own diagnosis was positive. That meant that my own feelings were that this breast cancer was much less important than the arthritis and intestinal problems that I had experienced daily for years, and for which there are no cures.

Brustzentrum, Inselspital Bern — Feeling frail but well after breast cancer surgery

The hardest part of the story came after surgery. My doctors recommended that I should stop the medication for the arthritis and bowel disease, which has completely transformed my life in the last 4 years by enormously reducing the pain, inflammation and tiredness. See my post How it all started for the story of my amazing improvement . The drugs are called TNF-alpha blockers, because they block messengers in my immune system called TNF-alpha, which are thought to be malfunctioning, and are causing my illnesses.

However, it is believed that TNF-alpha normally plays an important role in the immune system by fending off cancer and destroying potential tumours. TNF stands for Tumour Necrosis Factor. So obviously, someone already diagnosed with cancer, will be recommended not to take this medication. That advice initially really devastated me, but then it sent me on an important journey to pursue my needs as a patient and not just to follow doctor’s orders. I write about that journey in the next blog… coming soon.

Featured photo by Vernon Raineil Cenzon on Unsplash