In our thoughts
I am Maria Stepek Doherty, aged 57 at diagnosis with a Grade 4 clear cell tumour on my kidney. Around 2007 I became aware that I was catching every cold and assorted virus and not recovering well. It was not until my regular psychotherapy clients expressed concern that I really started to take notice.
I had a late menopause which started with excessive bleeding, followed by a gradual cessation. I never quite knew where I was with it so when I started to bleed again intermittently I assumed it was menstrual. However, when it became heavier and I also started to experience low back pain, I headed to the doctor.
It is not good to be unusual in the world of cancer. It took me 18 months of hospital visits, tests and moving on from one speciality to another, Gynaecology where I was tested and biopsied twice while they ruled out Ovarian, Cervical and Womb Cancer which took six months during which I became increasingly exhausted and unable to retain weight. I was also checked for throat and skin cancers which also proved negative, I was then referred to a General Medical Specialist who had me scoped for Bowel and Stomach Cancer before referring me to Haematology with blood results indicating multiple myeloma. One fearful dragon after another to be confronted.
There was another long wait before seeing the haematologist during which I had started to vomit several times a day as well as cough so badly that I was put on asthma medication His conclusion was that it was not a blood cancer but either an autoimmune disease, lung cancer or tuberculosis. He made an urgent referral to a lung consultant but it was accidentally marked as non-urgent and I waited six weeks before I could gather the strength to phone and ask how long I should be waiting. All hell broke loose and three days later I was being sent for an urgent full body ct scan, the first one in what had been well over a year of referrals, ultra sound tests, bloods and camera scoping. I am forever grateful to that consultant who was finally able to tell me what was wrong, a large tumour in my left kidney which was almost certain to be cancer.
More scans were ordered and revealed a tumour thrombus in my vena cava. My local hospital lacked the skills to deal with it. I was referred to another hospital. Here I was told that not only was it in my vena cava but in the right atrium of my heart. Once again this was not within the skill of this man to deal with. He had however referred me to a third surgeon in yet another hospital, a man who had carried out such complex surgery before. I left that hospital with one thought repeating over and over in my head, dead woman walking.
Mr. A saved my life. He assessed the risks and decided to operate. He asked me how much I wanted to know and I told him absolutely everything. He gave me the survival chances but reassured me that he believed I would make it. He also told me that without surgery I could die at any time from a rupture of the vena cava. Without hesitation I told him to go ahead. I would rather die fighting than do nothing. He put together his team which included a heart and vascular surgeon and found a slot for me at a hospital which is a centre of excellence for heart surgery. On November 19th 2009, the operation commenced, partially on by pass and took over eight hours. I had my life back again. The tumour had been a Fuhrman Grade 4 and I was going to be closely monitored for the rest of my life.
It was not sadly to stay that way. In Spring of 2011, I started to experience back, hip and groin pain which steadily increased in severity. My regular CT scans showed nothing as did a nuclear bone scan. However, when a full body MRI was done, four spinal mets showed up alongside a large left psoas muscle met. I was now Stage 4.
I was treated with Highly Focused Radiotherapy which ended the pain 6 weeks after treatment ended. I was then on Sutent as part of the Star Trial. Three months later I was in hospital seriously ill from the side effects and remained there for three weeks. We moved on to Pazopanib with lesser side effects. The psoas muscle met disappeared completely, a liver met showed shrinkage and the spinal mets remained stable. This lasted for 18 months when the liver met suddenly doubled in size. I was off Pazopanib and on the latest drug to be approved, Axitinib, which has done well for me over the last 20 months. Side effects are manageable and I live a full life in spite of mobility problems caused by the damage to spinal nerves.
I like to know my enemy and for me knowledge is power. I cannot control the cancer in my body but I can choose to arm myself knowing it in all its aspects, treatments and research. On diagnosis I came across the remarkable Rose Woodward. I found knowledge and support which continues to this day. She told me of one other survivor of this specific complication who was cancer free five years after surgery. The view I chose to take was if they could do it so could I. I looked to the survivors and tucked away in my mind the knowledge of those who had not. I also accepted that I might well not make it and made all the preparations for my departure. Having taken care of that I put it away and concentrated on surviving.
After my surgery I threw myself into helping others. I found KCNS through Rose Woodward, who is one of the founders of the website you are reading. We are a closed user group, carefully screened to ensure only carers and patients are members. We provide a place of safety where questions can be posed and answered, emotions shared and vented. I turn to it when I need extra support but I am proud to serve as a member of the Admin Team, simply giving back what I have received.
I was always open to listening and supporting others, but used to handling my own challenges by myself. I usually managed this successfully although it might not have taken so long if I had asked for help. This changed with my diagnosis. I realised that I was out of my depth, lacking in knowledge and very scared, not just for myself but for my loved ones.
We help one another from initial diagnosis to no evidence of disease, through the return of the beast, all the way through to the bit we are all fighting to avoid. There is always someone who is at the same stage as you, someone suffering the same side effect, someone who has felt what you now feel. There is a wealth of knowledge in our community. What we give to one another is extraordinary.
Please reach out and take the help available to you. You do not have to do this on your own. There is a strength in that unity which is greater than our individual courage. Please spread the word to others you encounter at your clinics. It has made all the difference to me.