We spoke with Christine S. as part of our series Survivor Insight.
Christine is a survivor and a fighter epithelial malignant mesothelioma.
she suspects exposure to asbestos comes from clothes her father after arriving home from an asbestos cement factory where he worked.
she said doctors had misdiagnosed him with other conditions before a biopsy determined that she had mesothelioma. His reaction to the diagnosis was a shock. Christine knew asbestos but did not know how the deadly mineral may be to the human body.
Christine joins us for a conversation about his journey, speaking of his treatment, the reactions of his family and come to terms with the diagnosis of mesothelioma. His last name is withheld on privacy.
What were the events that led to your diagnosis?
For nearly a year, I was diagnosed with pleurisy and pneumonia. I never knew that you could continue to get pleurisy often, but you put your trust in your GP [General Practitioner] and was also referred to the local hospital for treatment.
I quickly realized something was not right and was fed up being fobbed off by the GP I was seeing. They all said they could not hear anything over my lung / chest and wondering if I'd been stretching or lifting heavy objects, which would explain the pain in my lungs or my shoulder sometimes and to be out of breath.
So I changed my doctors. At that time, I was in more pain and could not catch my breath. I was told I had fluid on the right lung that was causing the pain, not the pleurisy or pneumonia. Finally, after many tests, X-rays and analyzes that I had drained my lung, but if just filled straight again. I went to the Freeman Hospital in Newcastle and I had my lung drained again and VATS [Video-Assisted Thoracic Surgery] How to paste up the lungs, and a biopsy. The result of the biopsy was mesothelioma.
Do you have a biopsy before biopsy leading to the diagnosis of mesothelioma?
Yes, but what was on my thyroid.
When were you diagnosed?
11th October 07.
What were your biggest questions after being diagnosed?
- How did I have time?
- What treatment can I have?
- Did I pass it on to my children?
your mesothelioma was caused by asbestos? Can you remember to come into contact with asbestos?
My mixed asbestos cement father at work. He returned in his overalls and my mother wash. He would lift me and my brother when coming to work to welcome us.
that your father has health problems related to exposure to asbestos?
He was normally a man in form. Near the end of his life, he complained of chest and refused to go for an X-ray, ambulance even came to the door for him, but he had that fear of cancer and refused to go. Soon after, he suffered a stroke and ended up in the hospital and died a few days later. A doctor told me and my brother that my father was a shadow on her lung and [asked if] were we aware of anything about. We just said that he was afraid of getting cancer. So we never really found what was. He had been a heavy smoker, but had stopped around the age of 40
Have you heard of asbestos before your diagnosis?
I should have, but I wasn 't familiar with anything to do with it.
Where did you turn for information?
Initially my doctor and oncologist and I may call (855) 404 -4592 nurse my lung. They gave me brochures about mesothelioma. Then I discovered the site Mick Knighton online and it turned out to be here in Newcastle. Other treatments that I discovered by Jan Egerton and Debbie Brewer. MacMillan site where you can chat with other patients is also useful where you can share with others.
What was your reaction to hearing your diagnosis with cancer?
total shock. I even thought they had made a mistake that the doctor was also shocked as he was not expecting it to be mesothelioma (meso) and he asked me if I had worked in the shipyards. I laughed as I thought he was cracking up a joke. I had not even heard of meso and asked him to clarify it for me. I went to see the doctor and I left my daughter in the waiting room and told him that I would not be long. I thought it was strange that this nurse came to me and said, we'll see the doctor now and I thought that I know I am, but why do you need to come too. Then I looked at his badge and said his name and Lung nurse and I knew something was up. When I was told [about being diagnosed] I had a few tears, but I remember thinking no, keep it together, I have to be strong for my daughter sat outside and the rest of my family and friends. I was taken to another room and the nurse Lung told my daughter that I could not talk at that time. My daughter went into shock.
What was the reaction of your family?
Devastated. My daughter was my rock at the time, as I was separated from my husband and my son then lived with him. My brother was in deep shock. My parents are dead.
How did you reconcile with your diagnosis?
I personally think I pretend I have not meso and get on with my life as before and sort of sticking two fingers up at him. So, I guess I come to accept if you wish. I do not want people to feel sorry for me. Most people are surprised that I'm still here. It was catastrophic at the beginning and the chemo was not a bed of roses, but [it was] something you had to do to live longer.
What are the treatments you use to fight mesothelioma?
I had six chemo during ALIMTA. He certainly helped as he shrunk the cancer after 3 lots of chemotherapy that took seven hours for each. I then had enough and was ready to throw in the towel, but when the oncologist said he had visibly diminished I thought it [the chemo] could decline further if I continued with it. My oncologist agreed that I suffered side effects, etc., and decided to change part of the cisplatin chemotherapy with carboplatin. This mixture is much easier on my system and took only 4 hours. I also had to have a blood transfusion during chemotherapy. I considered going to America to try cryoablation after talking to January, I contacted the doctor there who asked me to send my scans to see if he could help me. So I talked to my doctor and oncologist and they both agreed that after my chemo meso decreased twice [after 3 sessions and then again after 6 sessions] and I'd lose my money at that time that my meso was not a stage for justify continuing treatment.
What was your mindset while going through treatment and mesothelioma fight?
Because I felt good after my biopsy and either liquid-filled lungs, which caused a lot of pain, I'm ready for chemo. Then after 3 lots of chemo, I was beginning to feel like an old woman, but I was talking about my problems and expectations with the doctor, oncologist and a nurse lung. Of course all this chemo treatment is an important thing for anyone and it takes its toll mentally, but you must fight back and try to be strong to go through the treatment, especially in my case when he worked. I was ready to pack until I discovered that it worked. Then it takes time to return to be and feel normal again, and normal as you can be. Every now and again, at the beginning, I'd be overwhelmed by meso and cry a lot. I'm at the stage now [coming up to 4 years] and I no longer feel overwhelmed me because I came to terms with it. We all die of something and could not even kill myself, I could be hit by a bus. I am a diabetic and have high blood pressure. My high blood pressure put me in the hospital during all this, but it has all settled down. So it pays to try to stay calm, easier said than done, through whatever treatment you need to live longer, I try to live my life involving family and friends better than I can. I have bad days with pain and you do not have to undergo pulmonary nurse or your doctor can adjust that with painkillers for you.
What were the awareness events cancer you attended?
Cancer Research UK Relay for Life, two consecutive years as a survivor.
what kind of effect did it have on you?
be very emotional with other cancer patients, survivors we were called and we made some survivors lap for the first round and not sick we all applauded. Special lady I did with the first event is now dead and had meso that really touched me, but we must keep fighting.
Can you tell me more about your UK cancer walk 24 team slogan and why you chose
I am not generally very good to think of names and we all came with different slogans. I chose the faith you must believe in yourself to get through everything you need and I also have absolute faith in God. Hope you need, it helps Chemo and it gave me a fighting start.
Do you continue to participate in outreach events to cancer?
Not that particular one as inappropriate location. I do other fundraising things when I can for Mesothelioma Research Fund Mick Knighton.
What advice would you give someone who has just received a diagnosis of mesothelioma?
Take time to get around if you can. Be advised by your doctor / oncologist what the best treatment is for you. Normally, chemotherapy is started immediately. There are other treatments available depending on how fit you are and if you are not given any information from your hospital, go online and find out if you may qualify for an operation or go on a clinical trial , etc.
we thank Christine for sharing his experiences with us and all mesothelioma fighters who continue to blog and reach out to the community. Learn more about the Research Fund Mick Knighton Mesothelioma.
How has cancer changed your life? Do you have any words of advice, encouragement and support to others? Continue the conversation on Facebook.
