Resilience

At 48 I have weathered many CF storms, chasing the calm that follows a serious infection. These storms have always entailed a hospital admission and the inevitable cycle of PICC,s port,s, Iv’s, physio and rehab most often with a procedure or two (ouch) and on a few occasions some pretty major surgery! It has also provided an opportunity to connect with others and hear their stories of triumph over adversity. Why is it that some people seem to weather these storms better than others and continue to fight, and battle on no matter what?

Resilience is often a term linked with this skill, so, what is it, how do we acquire it and why does it come much easier to some people?

My reading tells me resilience is defined by “the experience of being disrupted by change, opportunities, adversity, stressors or challenges and, after some disorder, accessing personal gifts and strengths to grow stronger through the disruption.” In short, it’s the ability to bounce back after challenges, illness and disappointment. To my way of thinking, this is something that needs to be cultivated in those facing the many “CF storms”, supporting good mental and physical well-being, particularly during our most challenging times. Resilience and learning to become more optimistic can make a big difference in how we see the world, each other and ourselves, inspiring us to make better choices about our health and our lives.[1]

Next question, how do we acquire resilience? It appears that some people are naturally more resilient, finding the silver lining to most things. I know because I am one of those annoying people and it has served me well during my most difficult times. But don’t despair; from what I understand resilience is also a learned skill and can be fostered and developed over time often due to the very challenges we face as carers, partners or people with CF.

Having CF is like being on a roller-coaster with many ups and downs, dragging you from feelings of hope and exhilaration to doubt and despair, sometimes all in the one day. CF can take unexpected turns and give rise to many complications along the way. This can be frightening and incredibly frustrating. But through the lived CF experience some of life’s greatest challenges can become the very thing from which courage and resilience emerge. Meeting these challenges provides the opportunity to live more courageously learning to meet our fears and move beyond them.

A combination of factors contributes to resilience. Studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models and offer encouragement and reassurance helping to bolster a person’s resilience. On a number of occasions’ I have met with the Clinical Psychologist at my treating centre. This experience has been really rewarding allowing me to explore my own feeling about my health and develop better skills in dealing with the sometimes-unexpected nature of CF.

Fostering relationships among a community of others dealing with similar challenges can also make us more resilient. But! I hear you say the dreaded cross-infection issue! It is a problem that won’t go away. As an adult with CF I manage this in a number of ways, using a range of communication tools. i.e. Phone, email, Facebook groups and when I am face to face I follow the CF guidelines for cross-infection, you can speak to your treating team or see the CFV website for more information on this. Spending time at CFV and becoming involved in community events has also allowed me to connect with some really inspiring people within the CF community.

CF can be incredibly frustrating, taking away time from friends and family, forcing us to slow down and commit to a busy medical schedule. It can be a drain on finances, relationships and careers not to mention the emotional costs. During difficult times, I try to remember that CF has NO control over my mind, my heart or my soul. The person I am, how I think and who I want to become, that is all up to me! Perhaps you don’t think of yourself as particularly resilient or courageous, maybe it’s time to take a closer look?

[1] Mental health promotion through resilience and resiliency education. Richardson GE, Waite P

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Cancer and CF

 

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“Bowel cancer, but I have CF how can this be?”

Over time I had come to live with the knowledge I have an incurable life shortening illness CF, how do I now accept I may also have a second possibly terminal condition!

In 2009 I was diagnosed with Bowel Cancer, I had recurring symptoms. Initially this was thought to be incorrect enzyme dosage then in August I detected blood in my stool and I had a colonoscopy.

Waking up in recovery after the colonoscopy to be told by the resident doctor I had bowel cancer was such a shock. Initially I asked to see the photos and his report, I guess I was trying to get my head around what I had just been told. The growth looked huge the size of a small orange, soon after the CF team arrived and my journey began.

At the time I remember my thoughts were centered on the enormity of it all. I could accept CF and all that it entailed, that my life would be shortened but how do I include another life threatening disease in this mix and manage the outcomes that would unfold, where would my reserves come from?

Four weeks later I had a bowel resection and 6 months of Chemotherapy this was such a difficult time. Due to my CF, I was admitted 2 weeks before the procedure and had a tune up in preparation for the surgery, including IV antibiotics, exercise and intense physiotherapy. I also spent many hours with the CF team discussing and planning the procedure, meeting with the gastrointestinal surgeon and trying to comprehend the complication that CF would bring to the table.

Once I had the surgery it was concluded that I had stage three-bowel cancer (how could that be?), chemotherapy was the standard treatment for stage 3, but my case was different. There was very little in the way of published studies or information regarding people with CF having chemotherapy so the decision was mine alone as to whether to go ahead. After many hours discussing the issues with my CF team and the oncologist and getting my head around the anticipated complications, I decided it was the only way forward, I started the chemo 3 weeks later.

It was with much trepidation I embarked on the chemotherapy path as it had been pointed out that to be listed for transplant (a life extending option for most people with CF and something I had always anticipated needing and wanting) I was required to be five year clear of cancer. In doing the chemo my lung function was at high risk of dropping considerably. The plan was to try to stay above 50% Lung Function and 50kg in weight, this would give me a buffer, if I lost to much lung function I would most like die of lung failure before reaching the five years required to be listed for transplant. I was yet to truly understand how difficult this would prove to be.

My oncologist explained the effects of the chemo would be three times worse for someone with CF, at the time this was hard to comprehend. Two months into the chemo I became really unwell, my weight & lung function had dropped into the high 40’s, I was exhausted, my physical strength had diminished, my oncologist and respiratory doctors along with my husband wanted me to stop taking one of the chemo drugs in the hope I would be able to continue chemo with less brutal side effects. I was completely devastated but I really didn’t have a choice, one treatment was better than none so the decision was made, I continued on and completed the 6 months of treatment. At the end of the course I felt like a little old lady, weak unable to stand up straight, thin and fragile but I had done it, now I just needed to regain my strength and my hair!

A month later my husband took me on a holiday to recover. I was in Krabi Thailand for 2 weeks rest and relaxation, then headed to Lake Como Italy, to stay with friends and recover my strength. The sun on my face, tropical forests and elephants was just what I needed to regain my mental well-being. Italy did wonders for my physical health; I gained weight quickly on Italian food and the odd prosecco. Inspired to walk further and further as I visited galleries and churches around Lake Como. I came home feeling refreshed and optimistic.

I was now on a schedule of blood tests, scans and yearly colonoscopies as well as my usual CF monitoring and treatments. It became difficult to stay on top of medical commitments and my emotions, navigating the never-ending tests and waiting for the results. Over time this became easier until in Feb 2012 a white shadow was picked up on a lung scan, the cancer had returned and so a new journey began.

I met with my respiratory specialist who listed my options in detail. There were three in total:

  1. Do nothing. This was not an option I could sit with comfortably.
  2. Natural therapies- this I saw as an adjunct treatment to something more aggressive in nature;
  3. A lung resection removing the lump and I knew right away this was my only option.

This was an emotional meeting, John has been my specialist for over 25 years, he knows me very well and I suspect knew what my decision would be. This was to be uncharted water for us all. I wanted the cancer gone so I could get back to my normal. Medical terms over the years had become my second language this along with my medical team had made this process a lot easier. I cannot begin to imagine how overwhelming this may have been if my doctors and the medical jargon were unfamiliar.

The next step was to meet the surgeon to see if he was willing to perform the operation. He was already briefed with my medical history; I had many discussions with my CF team to understand my predicament and prepare for the meeting. Oddly enough meeting with him felt very similar to a job interview, you are being assessed for your ability to cope with the surgery and recovery, as well as the rehab. The risks are discussed and any concerns I might have were raised.

He was surprisingly young and open, I had done a little research prior to meeting him and his reputation was by all accounts excellent with his expertise in lung transplant and more complex pulmonary surgeries. He was patient and very open in his approach answering all my questions with considered, detailed answers. I came out feeling quietly confident in my decision and my surgeon, ready to move forward. I remember at the time quipping to friends that you want your medical specialists mature and experienced and your surgeons young and dexterous.

A week later I was back at the Alfred for a 2-week tune up prior to the surgery, I was busy working with the CF team to plan my recovery. There were so many people involved with this process; I felt a mixture of excitement, fear and gratitude. The preparation was intense; with the focus on getting me through the initial operation on to rehabilitation and back a to a decent lung function and weight. We looked at suitable physiotherapy techniques post surgery, pain management made more complex with a lung condition, and a host of other considerations.

It was planned that I would be transferred to the Austin hospital for the procedure as they have a new high tech laser machine that would cut around the mass instead of doing the standard wedge resection, removing just the mass and leaving more of my healthy lung tissue, as with CF this was lung tissue I could not afford to lose. I would then be transported back to the Alfred where the best CF care was available; the Alfred also provided a safe haven of familiarity and medical expertise that a condition like CF required.

The night before the surgery Max and I met with the anaesthetist to go over the plan, we both remember this as an amazing meeting. We sat with him for over an hour going through every aspect of the surgery. For someone with CF under going anaesthetics can be fraught with complications and these need to be managed by an experienced anaesthetist added to this was the fact that removing part of my lung meant the risks were great.

Oddly enough the night before the operation I slept like a baby. For the last 2-3 weeks we had been involved in a huge planning exercise, I had met with so many incredibly experienced and professional medical personnel and felt so ready to do this. No stone was left unturned leading up to the operation, I remember feeling so prepared for what lie ahead and thinking all I have to do is get up and out of bed as soon as possible after the operation, walking every day on my road to recovery and that’s what I did.

The day after the surgery I was transferred back to the Alfred, this helped me to relax as it provided a sense of familiarity and a routine I knew well. Two days after the surgery I was not receiving any pain relief as the epidural had blocked, the pain was intense. The pain team were called to find a solution. While I waited, I was unable to move I had to sit up and basically lean on my mother’s shoulder; I was exhausted any movement would cause intense pain

Two of my ribs had been broken to access my lung and then a large laser cut used to remove the mass, internal and external stitches put me back together, it hurt like hell. I remember asking my parents to just talk; when they asked what about I suggested politics- Kevin Rudd had just been ousted by Julia Gillard and I knew my step father could talk under water when it came to politics’; distraction can work wonders when all else fails.

I now look back almost 4 years post surgery with hope and a sense of pride that I made it. It was the hardest experience my family and I have ever had to face. I am forever grateful for the incredible expertise, dedication and support generated by all those involved in my care and recovery. To the medical team who opened the door and created a yellow brick road that I could navigate, to my husband who makes my world a better place one where anything is possible and to my Mum and stepfather who provided  never ending love and support through many dark nights, I am eternally grateful.

Has it changed me? I am inherently the same person and still have similar aspirations, fundamentally my belief system still follows the same path; but I now walk a little taller, I am more confident to be me. Time is precious and I don’t waste it. I feel a sense of complete freedom I have never felt before and the experience has brought a sense of clarity. I feel more connected to those I love or is it more of a connection to life itself?

I do not know what my future may hold but it is my hope I can face it with grace, clarity, strength and optimism, and with support from those close to me!

*If you are experiencing any of the following symptoms for more than two weeks, don’t delay in talking to your doctor about them.

Possible signs and symptoms of bowel cancer can include:

  • A change in bowel habit – a recent, persistent change in bowel habit such as looser, more diarrhoea-like bowel movements, constipation, or smaller more frequent bowel movements (i.e. going to the toilet more often, or trying to go – irregularity in someone whose bowel movements have previously been regular)
  • A change in appearance of bowel movements – for example, narrower stools than usual or mucus in stools
  • Blood in the stool or rectal bleeding – bright red or very dark
  • Frequent gas pain, cramps or a feeling of fullness or bloating in the bowel or rectum
  • A feeling that the bowel has not emptied completely after a bowel movement
  • Unexplained anaemia(a low red blood count) causing tiredness, weakness or weight loss
  • Rectal or anal pain or a lump in the rectum or anus
  • Abdominal pain or swelling or a lump or mass in your tummy

Vomiting

*referenced from Bowel Cancer Australia   https://www.bowelcanceraustralia.org

The Spoon Theory

Back in October I had a wonderful day at the races with family and friends. It was an exciting day for me as I have been particularly unwell these last 6 months and have had to cancel on friends and family a number of times at the very last minute due to my health.

I spent most of the day catching up on the news with everyone. I sat and spoke with my stepsister Stephanie for a long about my health as she really wanted to understand how if affects me on a daily basis and the sort of issues I am facing.

For me its very difficult to put into words my personal experience of CF, on the one hand I don’t want people to feel sorry for me, I love my life its filled with wonderful friends and family and many great experiences, but on the other I do want them to understand the illness and the challenges people with CF face. I guess this has been the impetus for this blog, a platform for everything CF and a few personal bits as well!

I came across this video while reading another CF blog. It really resonated with me, as my experience of CF is that it creeps into your life ever so slowly, invading every aspect of your existence. You have to work hard to keep it at bay physically and mentally; it’s relentless in its attempt to pull you down. CF is my hidden enemy I’m always trying to outsmart, sometimes I get it right and sometime I don’t. I have won many battles over the years, but I know I can never win the war!

A Day at the Alfred

 Dum Spiro Spero. -While I breathe I hope.

Last Thursday I had a routine visit at the Alfred Hospital, or as I like to call it “Alfred Spa Resort”, this usually happens every three months. I have been attending the Alfred Hospital or The Royal Children’s Hospital for the past 47 years. Lately due to a bad run with my health I have been going in weekly for this appointment.

Generally I would have a breathing test first (*pulmonary function test- PFT), this measures my lung capacity, and then I would meet with my CF team to discuss the plan moving forward. This includes a review of my medications (all 20 of them).  A review of my physio and exercise routine- more specifically how I can stay on track, and a look at my weight and diet. My peg and port are checked, medications collected, future tests planned and a quick hi to the gorgeous 5 East ward nurses and I’m good to go. (This can be a four-five hour appointment).

Until two years ago I have hovered around 40-50% lung function, although to others it may not seem great, it has still allowed me to live a fairly normal life doing the things I enjoy and working full time (a very important part of my life).

This last year has been really difficult with multiply chest infections; my lung function plummeted to a new low of 30% and a weight of 45kg’s(this is not good). After 6 months of I.V antibiotics (3 times a day) and peg feeds most night’s I am now on the improve “well I have gained 3kg’s”. My lung function is sitting at 32% a gain of 6%. I am now waiting to start Orkambi(gene therapy) in the hope that this will be the “next best thing” for me.

*Pulmonary Function Test (PFT) measures your lung capacity. The key data is collected and used to form a picture of your overall lung health. The FEV1 (forced expiratory volume in the first second) is measured in percentages. Most healthy “normal” people taking the test would score between 80-100%.

 

NOTE TO MY YOUNGER SELF

 

At 47 years old I have experienced many of the ups and downs of CF, this has taught me so much about others, the bigger picture and most importantly about myself. If I could go back to when I was a relatively healthy naive, 16 year old with CF this is what I would say!

Do what you love and love what you do – I have loved every minute of my life and I put this down to a few things. Firstly in the early days people with CF were not expected to reach an age where they could work, marry, travel, etc. For me working, travelling and living is a privilege, and it has given me so many wonderful experiences I could never have imagined.

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Further Education –  I studied fashion and landed my first job with an exclusive bridal designer. I have worked either in the fashion industry or teaching at a University ever since. The rag trade is both tough and competitive but this has made me more resilient, a better communicator, financially independent and given me a sense of empowerment in everything I do.

As a life long student and teacher of 10 years, education has created a passion for learning and confidence in speaking my mind, a definite advantage when dealing with hospitals and husbands. “you don’t have to be mean and grumpy to get what you want”. The trick is to:

  1. Be clear about what it is you want or need.
  2. Speak with clarity and confidence
  3. Be calm, common courtesy will get you a long way in life

Own your health – CF is a lifelong, complex disease affecting multiple organs and systems. For that reason it was important for me to understand my body and the illness if I were to be able to make informed choices regarding my health.

Ask the questions you need to (even the stupid ones), keep up to date with current best practice and make CF your business. Your CF team will appreciate your level of understanding and you will become an informed engaged consumer!

*Always make sure the information you access is from a reliable source, not “doctor google”

Commit to a workable health routine – To tell the truth I really struggle with this. CF requires an arduous routine of physio, exercise, diet, medications, clinic appointments, tune-ups, it never seems to end. But it’s a reality if you want to achieve your goals and stay as well as you can.

In my twenties and thirties I was very ambitious, my work life and social life were hectic, I worked full time and ran a small business after hours. This combined with meeting my husband Max and his three children, renovating and travelling overseas, leaving very little time for formal physio and exercise. I didn’t want to give up any of it so I had to make it work.

God bless my ever-enduring physiotherapist, the endless discussions around physio techniques, exercise routines and requirements, I always walked away with a physio/exercise plan feeling motivated, sadly this would slowly crumble as “my busy life” took over.

This is where the “choose to be active” mantra kicks in. A job that required being out of the office meant I could do physio on the go, walking distances often carrying a suitcase with a new fashion range or heavy rolls of fabric, this covered some of my exercise requirements. Selecting holiday destinations with plenty of outdoor activities planned, and the list goes on.

Make choices that will improve your health and well being, not hinder them!

Be mindful of your limitations – As much as I hate to admit it CF can pose some limitations. For me it makes no sense to select a path that would set me up for failure. So in what ever I am doing I do try to take my own limitations into account and make sure I can achieve my goals without totally compromising my health. Sometimes this means thinking outside the box!

Learn to cook or marry a good cook! – Learn to love food and cooking. CF requires a good diet high in protein and fat. If you are passionate about the food you eat and create positive experiences around food and dining, then eating to put on weight won’t seem like such a chore. Luckily we have Master Chef and a host of other cooking shows to make you your own “celebrity chef”.

Make every day as good as it can be – My husband is an amazing man, well in my eyes anyway””. Max really does make every day the best it can be, admittedly he does have a never ending source of energy to make this happen. I don’t quite have this energy all the time, but ever optimistic, I am always able to find the positive in most things.

Remember, You are the captain of your ship, and my ship is pointed towards the sun.

Work hard at everything you do – There are a million and one quote’s espousing this theory, so I am not going to go on about this one, but again in my experience hard work does pay off – ask anyone who has tasted success!

Be kind to yourself – This advice came for another “Cyster”(CF women) with a great attitude to life. CF is bloody tough at the best of times, I have had quite a few challenges and I expect there will be many more to come. These days I am trying to work with my illness rather than fight it. I do believe a bit of fire in the belly is a good thing but this needs to be tempered with a healthy dose of realism and an understanding that you will not always get it right.

Choose to be active everyday – take the stairs instead of the lift. Get a dog, set a steady pace at the shopping mall! Choose an active holiday, horse riding, skiing, swimming,  or what ever it is that you love and DO IT! (Regularly)

Surround yourself with great people – Spend time with people that support you. Friends are those that try to understand you and your struggles as you go through life. Choose to be with people that cherish you and celebrate your victories.

In-turn be a good friend, though you may have a challenging illness it is not always about you. In my experience the more energy you put into your relationships the better they become, including those with your medical team!

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Acknowledge the special people in your life – very few people achieve their goals on their own and I have been lucky to have many great people in my life who have been there to support me and help me to achieve my dreams. Whether it has been work related or managing my CF needs around my other commitments.

Without these people I would not be where I am today. Family, friends, work colleagues and of course my CF team have all been a part of this, I always try to acknowledge those who have made a difference in my life.

Finally – I consider these as aspirations to be forever mindful off and work towards, but we are after all only human and try as we might, we are unfortunately going to fail some of the time. The trick is to be able to pick your self up, dust yourself off and try try again!

Remember Love your life, as it’s the only one you have!

 

The Elephant in the Room

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I have been following a young girl with CF on Facebook for quite some time, watching her as she waited for the all important-life changing call for “new lungs”. Her comments were always short, a simple message of hope, courage and optimism, often quoting a well known passage from another time.

As I follow her  my thoughts wander to the time I will also be making this journey. It is a strange place to be, seeing many with CF battle against tremendous odds to stay afloat a breath away from the inevitable.

It has also been an opportunity to think about what I might want as the decline in my health occurs. Seeing so many people in the Alfred hospital going through end-stage disease including CF, cancer, COPD etc. What has become clear is my desire to create an openness around my journey that allows for positive experiences for my family and friends.

People coping with illness can become very isolated not because of the logistics of the hospital, more often because of a lack of communication with their health care team or their family and friends. For this reason a blog seems like a great tool.  I hope to be able to create a number of avenues to make communicating my journey seamless and inclusive.

Their are many topics we all think about but are afraid to bring up “the elephant in the room” so to speak, e.g. death, dying, transplant, cancer, our wishes. It is my hope that topics like these will become part of a natural conversation we might have, it does not have to to be such a dark and scary place! I would like to think that there are positives and humor in everything, we just need to know where to look.

CF can be relentless and all consuming particularly if you are acutely unwell, this is why it is so important to maintain good mental health. Fortunately the CF team includes a mental health practitioner. I meet with Anthony a gorgeous psychologist regularly for support and to explore my beliefs, fears, thoughts and observations.These conversations are a mix of laughter, tears and discussions about what my future might look like with CF.

Spending so much time in hospital in an acute ward, can be challenging. You are exposed to many difficult situations, some patients can be really unwell with complex medical conditions.  Over the course of my life most of the people I had meet with CF have now passed away, I think about this often, knowing how incredibly luck I am. Having someone you can talk to that understands issues you face having an incurable, life threaten condition can really help, this ensures I am at my best to deal with the challenges I may face in the future.

On a positive note I am not there yet and intend to fight all the way. Physiotherapy, exercise, antibiotic management, diet and nutrition are the main treatments for CF. I am in talks with my team regarding gene therapy and I hope to be accessing  Orkambi a new medication for people who have two copies of the F508del mutation (F508del/F508del) in their CFTR gene. Stay tuned and “watch this space for more updates on this!

Photo- Gregory Colbert – ashes and snow