I’m focusing on living my life
Sandra worked as nurse for 44 years. In 2017, she was diagnosed with mesothelioma, a cancer normally caused by breathing in asbestos dust. She shares her experience of living with mesothelioma, her journey to diagnosis and her outlook on life.
On Good Friday 2015 I woke up feeling as though I was choking. I looked in the mirror and could see my right tonsil was the size of a golf ball. I’m a nurse so I knew this wasn’t a good sign.
I booked an appointment with my GP and was referred to the ear, nose and throat (ENT) team. The next few weeks were a whirlwind of hospital appointments for CT and MRI scans, blood tests and X-rays. In June 2015 I was diagnosed with non-Hodgkin lymphoma. This was a shock, but I knew it was a treatable cancer. I was also told the CT scan had shown some irregularities in my right pleura (the thin lining surrounding my lung and rib cage).
I was put on chemotherapy. Despite losing all my hair and developing some numbness in my hands and feet, I coped with the chemo well. I saw a cardio thoracic surgeon for a PET scan who told me the irregularities in my pleura were part of the lymphoma. It was decided I should complete my chemotherapy and the surgeon would review me after a follow-up CT scan.
My life was now a constant round of hospital visits and treatments. I completed my sixth cycle of chemotherapy in November 2015 and was told by the surgeon the pleural irregularities had resolved. I was put on two years of maintenance Rituximab injections to prevent recurrence of the cancer.
I lost six stone in three months
I developed a persistent cough just before the injections started, but I didn’t think much of it. As the injections went on my cough got increasingly worse. I questioned if the Rituximab could be the cause but was told this was unlikely.
My symptoms got much worse. The cough was relentless. I lost over six stone in three months. I’d climb the stairs to bed each night and by the time I got to the top I’d cry because I was so breathless.
I was eventually referred to a respiratory clinic for my breathlessness. The chest physician rang me the following day to tell me the tests had shown I’d developed scarring on my lungs because of the Rituximab injections.
The Rituximab was stopped straightaway and I moved onto oral steroids. The response was incredible. My cough and breathlessness resolved. I got my appetite back and started to put on weight. I started to think this whole horrible episode was over.
In August 2016 I convinced the occupation health doctor to allow me to go back to work on a phased return. I continued to improve, and my three-monthly scans showed the lymphoma was still in remission.
Getting the diagnosis of mesothelioma
In June 2017 I finished taking the steroids. I’d started to feel slightly breathless, but I put this down to coming off the steroids. I had an appointment at the respiratory clinic in August so decided to hold on until I saw the chest physician then.
At the appointment I had a chest X-ray which showed fluid in the right lower lobe of my lung. I was referred for an urgent CT scan. This confirmed fluid in my right lung along with some pleural thickening. I was given options for my treatment and I chose a VATS procedure. The surgeon tried to dissuade me from having the surgery because he thought I looked too well to have anything serious going on. But I insisted on the procedure because I suspected something wasn’t right. The staff were amazing and I was discharged three days after the surgery.
A week later I went to see the chest consultant who had the results. She told me I had mesothelioma and asked if I knew what this was. I remember saying yes, I know exactly what that is. I’d looked after patients with mesothelioma and knew everything about it, including the poor prognosis.
I told them I was going to fight it, even though I knew deep down this cancer had no cure
In those next minutes everything ran through my mind. When am I going to die? How will I tell my family and friends? I asked the consultant what happens next and she said she was going to refer me to an oncologist, who would take over my care. I was devastated. My husband and I didn’t speak on the way to the car, both numb with the news. Once we were in the car, we both clung to one another crying.
Telling my children, family and friends was incredibly hard. I struggled trying to reassure them and keep a smile on my face. I’ll admit there were a lot of sleepless nights and tears when no one could see me.
It was ironic to think that a job I’d dedicated my life to was going to be the thing that killed me.
I racked my brains about where I’d been exposed to asbestos. I began my nurse training in 1975 in a place that had been a workhouse before becoming a hospital. I remembered lots of exposed pipes and workmen removing ceiling tiles to work in the roof space. There was never any warning about asbestos and its dangers. My solicitor went on to prove this was where I’d contracted the mesothelioma. I’d wanted to be a nurse since I was a little girl and loved every aspect of it. It was ironic to think that a job I’d dedicated my life to was going to be the thing that killed me.
Even though I knew the prognosis, I wasn’t ready to die
Once again, my life was turned upside down with scans, blood tests and consultant appointments. I was seen by the oncologist the week after my mesothelioma diagnosis. They told me there was no cure and the prognosis was usually between 12 months and five years. Hearing this was difficult; I wasn’t ready to die.
I was told I could be eligible for clinical trials, but it might be difficult with the underlying lymphoma and the damage that had been done to my lungs by the Rituximab. I was clinging onto any form of hope and so the oncologist said he’d discuss my case with his colleagues.
I was contacted in October to ask if I’d be willing to take part in a clinical trial involving chemotherapy. Compared to the previous chemotherapy I’d had it was brutal and I was incredibly ill on it. I struggled through four rounds of chemotherapy before having to stop as it made me so ill. Instead, I had three-monthly CT scans and oncology reviews. For 18 months the mesothelioma remained stable and my life returned to some kind of normality.
I was keen to try anything that would buy me more time
In April 2019 a CT scan showed some pleural spread and I was becoming increasingly breathless. My oncologist felt it was time to resume treatment. In June I started immunotherapy, which I got privately through my asbestos injury compensation. Unfortunately, a follow up CT scan showed the immunotherapy hadn’t worked.
I had a biopsy which showed the mesothelioma had spread throughout my chest. I asked my consultant how long he thought I had left to live and he said approximately six months. How on earth do you try and comprehend something like that? There was so much I still wanted to see and to do.
I asked if there was anything else we could try. He told me about combination of chemotherapies that aren’t available on the NHS, but that my settlement would include. It wouldn’t be a cure, but it might buy me more time. I was keen to try anything.
Coronavirus and lockdown happened just before my final treatment on this regime. My consultant and I jointly decided to postpone the treatment. I had almost eight weeks of no treatment, which although was stressful gave my body and mind time to recover.
I’m currently on palliative chemotherapy. It isn’t a cure, but a means of hopefully buying me more time. The regime is quite exhausting, but I’m not complaining as it’s stabilising the cancer and preventing further spread. My consultant has said I can carry on with this treatment indefinitely until it either stops working or it becomes too toxic for me to cope with.
Occasionally I get a little down and allow dark thoughts to take over, but I’m usually able to shake them off. On the whole, I feel blessed I’m still here and able to get on with my life.
My symptoms of mesothelioma
I have a persistent cough which is more of a nuisance to me than anything else, especially with coronavirus around.
The breathlessness is more debilitating. Doing simple things like going upstairs, walking more than a short distance or talking too much (which I’m apt to do) leaves me gasping for breath. I was active and extremely independent before this and find it so frustrating I can’t do things I used to do.
I’m easily tired and need regular naps throughout the day. I have some pain around my right rib cage, but it’s manageable with pain relief. My appetite is up and down, but my weight is steady. I’ve developed a hand tremor which gets in the way when I’m writing, which annoys me more than anything.
I was never an anxious person, but now and then I feel anxious, especially when going for scans and waiting for the results. Occasionally I get a little down and allow dark thoughts to take over, but I’m usually able to shake them off. On the whole, I feel blessed I’m still here and able to get on with my life.
I get satisfaction being able to help others who are in a similar position to me
I get immense support from my family, friends and old nursing colleagues. My consultant is fantastic and I have a close relationship with my mesothelioma nurse, who is always there to comfort and support me.
My solicitor who fought and won my compensation claim has also become a close friend. Besides the financial compensation she won for me, she also won me access to treatments that aren’t available on the NHS.
The nurses and admin staff at the hospital where I get my chemo are very helpful, caring and supportive. I also get a lot of love from the support group I attend. We normally meet monthly, where we have guest speakers covering issues relevant to our condition. We also have outings and other speakers about topics of interest away from mesothelioma.
It’s an invaluable way of getting together with others who are in the same boat, where we can share our experiences and offer support to one another. A lot of the group gravitate towards me because I was a nurse and so can help them understand the medical jargon. It gives me a sense of satisfaction I’m still able to help in some small way which is what I spent 44 years of my life doing.
My support group is an invaluable way of getting together with others who are in the same boat, where we can share our experiences and offer support to one another.
It’s your body, your mind, so do whatever you need to do to help you cope
Getting diagnosed with a terminal cancer is extremely frightening. For someone newly diagnosed with mesothelioma I would say even though it’s a horrible thing to be told, hold onto positivity. Decide at the start how you want things to proceed. If it helps you, ask questions, do your own research and challenge things being told to you. But if you’d prefer to go along with the advice and decisions being made for you, that’s fine too.
I appreciate now one of the most important things to do after diagnosis is to make use of the services available to you. Engage with the mesothelioma nurse for your area – they’re a vital source of support to help make this journey less difficult.
Find a support group near you, even if at the moment they’re meeting virtually. Carers and friends can go as well, which is so useful as you get an insight into their worries which you might not have considered because of your own.
Everyday I’m still here is a bonus
I still get angry this happened, sad if I start to dwell on things and frustrated at things I can no longer do. But on the whole, I can usually brush all this aside and make plans, albeit not long-term, for the future. I concentrate on living my life and appreciate more than ever everything around me.
For now, in whatever time I have left, I intend to live each day as if it’s my last. I embrace each day and the people I meet, making many memories for my family and friends to cherish long after I’m gone.