It is hard to remember my life before cancer. I was an ambitious, driven doctor just two years away from finishing my training to become an Elderly Medicine Consultant in the UK. I was happily married at the age of 23 to my lovely husband Chris, and we had a great quality of life with no money worries, lots of travelling, a supportive family and great friends. We made a lovely home together and were starting to think about having a family. We worked hard and played even harder.
In July 2011 we took a holiday to California. Chris has relatives in Santa Cruz, and we accompanied his Grandma out there so that she could meet her new great grandchildren. I had been feeling tired before the trip but put this down to working extremely hard. Whilst we were out there I started to feel unwell with back pain. I tried to ignore it at first, but it got so bad that we ended up in an American ER. This is where we discovered, after some blood tests, an ultrasound and a CT scan that I had several tumours in my abdomen and pelvis that were pressing on my ureters and causing kidney failure.
It was a thunderbolt. You think that in your twenties you are invincible. But there I was in a foreign country suddenly seriously unwell with cancer. I remember being very quiet and calm about the whole situation. I'm not entirely sure why I was this way, but it just seemed that becoming hysterical about what was happening was not going to help anyone. The doctors in Santa Cruz sorted out my renal failure by doing an operation to insert stents into my ureters, and this improved my health. The initial diagnosis was thought to be ovarian cancer and I was offered a transfer to Stanford for an operation, but I really just wanted to come home.
We returned to the UK a few days later and after a visit to our GP were referred to our local hospital in Leeds. They organized further tests including another ultrasound, an MRI and a biopsy. While all this was going on my stents failed and I became seriously unwell again with kidney failure and an infection. This meant that I had to have nephrostomies inserted into both my kidneys (these are tubes that sit directly in the kidneys and stick out of the back to drain urine so bypassing the obstruction in the ureters). It felt like everything was going wrong at this point and I doubted whether I was going to survive long enough to get well for chemotherapy. The invasive procedures seemed relentless and it really felt as though I was being tortured. I got through it by just thinking about each obstacle as I came to it, and I did a lot of visualization of nice places during procedures to distract myself.
Eventually, after about two weeks, a diagnosis was made and I was told I had DSRCT. This was very bad news and I knew it. As a doctor I had done my research, so I knew that DSRCT that had metastasized had an utterly dismal prognosis. I had, in effect, received my death sentence. I cried a lot that day. I took responsibility for telling my family and friends what was going on. It was devastating seeing everyone's faces change as I broke the news, but I wanted to do this task myself; I did not trust my doctors to do it properly. I guess this is evidence of my control freak nature.
I was treated with P6 protocol chemotherapy. This is hard-core inpatient chemotherapy that is given over 4-5 days. They planned to give me 8 cycles. I remember vividly about eight hours after the first bag of doxorubicin had been infused waking up suddenly and vomiting everywhere. It was horrendous. I didn’t eat and barely drank anything for a week. Eventually we found an anti-emetic that worked (levomepromazine).
All my tubes were a nightmare when I was having chemo. I had two drainage bags for my nephrostomies that I had to be extremely careful with to make sure they did not get dislodged. Then I often had both ports on my Hickman line in use for the chemotherapy and I had a subcutaneous syringe driver in my upper arm delivering my anti-emetics. Consequently moving anywhere was a major upheaval although I used to do my best to take a short stroll around the ward every day to try and maintain some level of fitness.
My first experience of febrile neutropaenia was a few days after the first cycle of chemotherapy. I was shivering uncontrollably and felt so lethargic I could barely move. My mouth was so sore with ulcers swallowing anything was a major battle and I developed heavy vaginal bleeding as my platelet count was really low. I needed several transfusions, lots of antibiotics, fluids and mouth-care. Coping with feeling this ill was incredibly difficult, and each day I prayed that my neutrophil count would rise, but it took seven days to start its upward climb. Having been through all that it was amazing how quickly I bounced back to health once my bone marrow was functioning again.
A little of my freedom was given back to me when I had a procedure to remove my nephrostomies and insert metal stents into my ureters after the fourth cycle of chemo. Living with the nephrostomies was truly miserably. I couldn’t turn over in bed or have a bath. Even going out had to be a military planned operation. I felt so disfigured and had major issues with my body image at this time. When the stents were successfully inserted I felt as though such a weight was lifted, and I am eternally grateful to the Interventional Radiologist who performed the procedure.
I managed to endure five cycles of chemotherapy. Unfortunately, every cycle was complicated by febrile neutropaenia and bone marrow failure. This meant that I spent most of my time in hospital with only maybe 3-4 days in a three week cycle at home feeling reasonably well. On New Year’s Eve of 2011, I decided to stop. I had had enough. Although the chemo had definitely had a positive effect in that my tumours had shrunk, it was never going to cure me, and it was causing far too much suffering for me to continue with it. I was always very realistic about what the oncologists could achieve for me and had lots of experience of seeing people having chemotherapy during my career. The burdens were outweighing the benefits, and I have never regretted the decision to stop for a single moment. It was completely right for me.
I bounced back from chemotherapy remarkably quickly. I was back at work part-time 3 weeks after I finished treatment. I have run into some problems with pain along the way. Initially I was experiencing a lot of bone pain related to a metastasis in my pelvis but I had some palliative radiotherapy for this which was amazingly helpful. Unfortunately I also experience a great deal of abdominal pain, especially at night, which we think is related to my stents. I struggle with the effects of analgesia on my cognition as I need a clear head in order to work, so I live with pain. My sleep is not great. However, I have a positive attitude and live a very busy and full life, determined not to let fatigue or cancer get the better of me, not yet anyway.
I have ‘wobbles’ emotionally now and again. It is very difficult dealing with the fact that my life is going to be cut short. I see all my friends planning weddings, having children and achieving in life, and all I can think sometimes is that I am probably not going to be there to share in all these wonderful events. Having said that, I have lived to see my brother married, and I am hoping to see his first baby born in January 2013. For the vast majority of the time I am genuinely happy. Life is what it is, and my life at present is fantastic. I have a "bucket list" of activities I want to achieve before I die, and we are always busy doing lovely things.
Luckily my disease has been stable for over nine months now, which is unusual in DSRCT. I see my oncologist every six weeks just to touch base, really. I will only consider more scans or treatment if I have a problem that we all feel will be helped by chemotherapy. I am not going to pursue anymore treatment just to prolong my life.
My life is surreal. While I was ill I wrote a book about my experiences called The Other Side. It was aimed at other healthcare professionals to make them stop and think about what it is really like to be the patient, and how their behaviours, no matter how small, can have a massive impact on the people they look after. This book has taken off quite unexpectedly in the UK, and I have sold over 3,000 copies and raised a significant amount of money for the Yorkshire Cancer Centre. I have just finished my second book entitled The Bright Side which is about living with a terminal cancer diagnosis and how I have changed as a doctor. The book aims to open up discussion about death and dying.
My new career as an author has led me into the media spotlight a little and I have been the subject of numerous newspaper articles, medical journal features, radio and television shows. I also regularly speak at events about Patient Experience, which I have become extremely passionate about.
My bucket list keeps Chris and me extremely busy. We have renewed our wedding vows, flown in a glider, taken afternoon tea at the Savoy in London, travelled to Paris and been on the Orient Express. There are trips planned to Barcelona and New York, and I also intend to have a tattoo.
Having sarcoma and being terminally ill, I guess, is part of me now. I struggle to remember my character before. I live life for each precious second and try to stop and appreciate all the lovely things in my life and the world. I don’t get frustrated with work anymore and am just thankful that I can still do a job I love to do. I defuse any arguments within the family with my "life’s too short" mantra. In many ways I am lucky that I know roughly when my own death will occur. It lets me plan and prepare for it properly. So I keep smiling and enjoying everything as much as I possibly can.
Thoughts and Hints for New Patients
I was always very well informed about my disease, given my profession, and I think knowledge is key when dealing with a rare disease. It helps you to make sensible decisions about what is best for you; it means that you can communicate on the same level as your doctors and it empowers you. Many of the different sarcomas have social networking groups, and I would advise joining these early on and connecting with others who have been through the same experiences.
I am extremely realistic and accepting of my situation. Many people may struggle with my attitude, and perhaps it is easier because I don’t have any children. But this cancer is going to end my life prematurely, and before it does I want to have the best possible quality of life. To me that means the least medical intervention possible to keep me well.
What would I say to a friend just diagnosed with sarcoma? Well after a big hug, although it sounds cliché, I'd say: Take one step at a time. Try not to think about the future too much, as that can be overwhelming. Do lots of nice things to counteract the awfulness of treatment. And always be prepared to advocate for yourself. Doctors are not always right and cannot always make the right decisions for you. Only you can do that.
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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.
Considering the Patient
As a physician specializing in elderly medicine in the United Kingdom, I'm not sure I had ever considered what it is like to be the patient until, quite out of the blue in August 2011, I became the patient. I had been on holiday in California with my husband and developed what we initially thought was renal colic. Unfortunately it turned out to be much more serious. After numerous scans and biopsies, a diagnosis of Desmoplastic Small Round Cell Tumour (DSRCT) was made. I had liver and bone metastases at presentation, so I was fully aware early on in my illness that I was in a palliative situation.
Breaking the Bad News
Having come through this diagnostic nightmare, I have obviously had bad news broken to me on several occasions along the way. In my experience, sharing difficult news can be viewed by doctors as "just another task" to undertake in an already pressured and busy job. But the way that we share bad news can have a massive impact on patients and their families. Careless or insensitive communication at this critical time can cause immense and irreparable psychological harm to patients.
I remember when the most junior member of the gynaecology team told me that I had metastatic disease. He made no effort to clarify what I already understood and gave no warning of what I was about to hear. I had no friend or relative with me, and none of the ward nurses were made aware that I would be receiving such devastating news. I was left alone crying without any support. That encounter has stayed with me and motivated me to try and improve how members of the medical team communicate with patients in these difficult situations.
In contrast to that experience, I also remember when my oncologist told me of my definitive diagnosis. His sensitive communication limited my distress, despite the fact that this news was probably more devastating than the metastasis news in the grand scheme of things. When doctors deliver bad news with compassion and concern, we limit the suffering involved in a patient's first encounter with a new medical reality, no matter how devastating it may be.
It really is the 'little things' you appreciate as the patient: someone holding your hand when you're upset, someone sitting down next to you instead of standing over you, a friendly smile, an open body posture. These behaviours are small and easy to achieve, but they make a world of difference to a patient who is in a vulnerable place emotionally. My consultant oncologist has a fantastic bedside manner and is great at the little things. I am sure my trust and respect for him stems from his empathic manner on a human level rather than anything to do with his clinical acumen.
Who is Advocating for the Patient?
As a doctor, I have been lucky to be able to advocate for myself effectively throughout my cancer journey. I have always had strong opinions about how quality End of Life Care should be delivered. I was determined that my decisions would be based on these views and that my top priority was my quality of life. The moment I felt the burden of chemotherapy was outweighing the benefits, I chose to discontinue treatment. I remain determined to be in complete control of my future medical interventions, ensuring that quality of life is my main motivator when deciding about management.
Unfortunately, many patients are not able to advocate for themselves. We need to remember this when negotiating management plans with the people we look after. In cancer care in particular, it is all too easy to keep going along a treatment protocol or pathway without discussing the implications of advancing disease with the patient and considering the patient's wishes each step of the way. Taking the time to review how everything is progressing in the palliative treatment of cancer can be hugely valuable. Achieving that Holy Grail of true patient-centredness is a goal I aspire to in my own medical practice, but it is all too easy for patients to become lost within the system.
About the Author
Kate Granger has defied the odds of her DSRCT diagnosis and continues to work part-time while completing her 'Bucket List.' You can read more of her story in her two books: 'The Other Side' and 'The Bright Side.'
V10N5-6 ESUN Copyright © 2013 Liddy Shriver Sarcoma Initiative.