“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:
- Do nothing. This was not an option I could sit with comfortably.
- Natural therapies- this I saw as an adjunct treatment to something more aggressive in nature;
- 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
*referenced from Bowel Cancer Australia https://www.bowelcanceraustralia.org