I have discovered that no matter how well you feel or whether you continue leading a life like pre diagnosis, you cannot forget you have Stage 4 lung cancer. As well as having regular tests and scans which continue to remind you that you have lung cancer, you can develop side effects, or other aches and pains that you think might be a secondary. Your imagination can go into overdrive, particularly at 3am.
Scan results
Initially the procedure for me was to have a monthly blood test, to monitor tolerance and the effect of the medication, followed by a face-to-face consultation with a clinician. Every three months I would have a thorax and abdomen CT scan approximately two weeks before the appointment. I was notified that my fourth appointment would be with the consultant’s senior registrar. This threw me as developing a relationship with the consultant responsible for my care was so important to me and it takes time. I didn’t feel confident in making a new relationship with another clinician at this early stage of diagnosis. As it happened the doctor I saw was absolutely wonderful, and we got on like a house on fire.
Despite feeling optimistic about the positive impact of Osimertinib I was starting to get stage fright as the scan date got closer. When I had the scan, I felt apprehensive, especially when the radiographer knew the result of my scan, but I didn’t. In fact, the actual CT scan was so quick, most of the time was spent preparing me for the scan. My future was in the scanner. Everything was so uncomplicated compared to the diagnostic tests and the last CT scan and MRI. Since I had been diagnosed, I began to access my patient portal, an NHS online facility, that some Trusts offer, giving patients access to their reports. For example, I can access blood tests, x-rays, scans and biopsy results, and most letters written about me. There is an embargo on access to the results as the clinicians must read them first. However, I can usually access the blood test results the day before my oncology appointment. This is helpful to me because I can discuss any discrepancies in the tests with the oncologist.
Four days before my scheduled appointment I had the blood tests first thing in the morning. At around 11 am I was called by the oncologist’s secretary to advise my oncology appointment had been changed to later that afternoon and will be a phone call with the Registrar. In response to my question to the secretary if there was anything wrong, she informed me nothing was amiss. Even so, I started to think the worst for 5 ½ hours and think I will be given bad news - that the cancer has grown or spread even more. Terrifying. It was useless trying to distract myself I was in full blown scanxiety, my heart was racing, I couldn’t eat or settle. I was all over the place. When the doctor called to tell me that although there was no change since the scan in August - I am stable, the relief flooded through me. She explained that after an initial shrink it sometimes takes longer for Osimertinib to work. Stable is good news in the cancer world – something I need to hold onto.
The doctor advised the blood tests I had earlier were fine and everything was satisfactory. Obviously, it was a relief to be reassured that there was nothing seriously wrong, I was tolerating the treatment and could continue taking Osimertinib. I was a bit disappointed as I hoped that I would be a medical mystery and be told the cancer had miraculously disappeared completely. This was not to be, moreover, reading other people’s stories about their lung cancer and treatment indicated it was unlikely to happen. Yet the cancer can be treated and for some this could be for some years. Two days later I was able to access the blood test results and saw a couple of results were flagged up as out of range. My anxiety was raised again but reassured that the doctor had seen them and considered they were within range for me.
Later that day I began to feel unwell and developed a virus, spiking a temperature and needed to go to bed. Having a virus probably explained the blood test results. But I was petrified that being ill would seriously affect my lungs, especially if it was covid. I spent the next 24 hours trying to keep warm and burning eucalyptus in attempts to ward off a chest infection. My temperature returned to normal quickly, but I had contacted the GP for advice. Pre diagnosis I would have taken this in my stride and shrugged it off as something that would pass. I understood that now I was in a vulnerable category and feared the worst. He diagnosed tonsilitis and prescribed antibiotics and after a couple of days I was back to normal.
Side effects
Apart from the initial cardiac scare and a few lesions on my face and body that responded to hydrocortisone. I read about others suffering from various minor to major complaints, some had to take a break from Osimertinib for their body to recover. It was about four months after I had been taking Osimertinib that I began to get side effects that were intrusive and uncomfortable. Firstly, my fingers were affected with what seemed like little paper cuts. These were very sore. It was a bit of a nuisance as I do a lot of craft work, such as painting, sewing and knitting and this was affecting my dexterity as I couldn’t hold the paint brushes or the knitting needles, nor could I open tins with ring pulls, or hold utensils when preparing meals and other housework tasks. This was frustrating as I became dependent on others. I was unsure of what the procedure was for clinical advice on side effects. Do I contact primary care or oncology? Initially I spoke to a GP who advised I speak to oncology as the medication is relatively new for the NHS in the UK and they will know more about the side effects. Given this advice I contacted oncology and sent photographs of my hands, who advised this was probably a side effect; Osimertinib affects the nail bed, and I should contact my GP as I may need antibiotics. I returned to the GP and received a relevant prescription. These cuts took ages to heal.
I was getting a collection of side effects particularly mouth ulcers which are affecting me which made it difficult to eat and talk. Other problems had developed, my nails started to collapse; and I kept getting minor skin outbreaks. Getting advice between oncology appointments was not easy. It was hard to know whether I should go to primary care or oncology. Whatever I chose I always felt a nuisance when I called for advice. Moisturising twice a day was the recommended treatment for skin problems. In theory this sounded a rather nice treatment until I was advised not to use any of the beautifully scented body lotions which I loved. A tub of clinical looking thick cream was dispensed by pharmacy for me to apply twice a day, and advice not to use scented bath products. Another reminder that I was a ‘patient’ with a disease and in a clinical cohort. Even though the blood monitoring suggested otherwise I was also worried that I was not tolerating Osimertinib. Sometimes the side effects disappeared or subsided for a while, which created a false impression they were going for good. Regardless of these side effects my life went on and I was determined to enjoy it. Besides this medication was saving my life - the side effects were a small price to pay, for the alternative was worse.
Onwards and upwards
Bearing in mind of my determination to enjoy every minute of what remained of my life, during my birthday celebrations I had decided to ensure I had at least 70 events to look forward to for the coming year. As previously mentioned long-term planning was impossible in as much as we didn’t know how long the medication would be successful for. If I had to transfer to another treatment my body would have to learn to tolerate the change of medication. The side effects might be worse and restrict my activities such as travelling. Nevertheless, we had been able to keep weekends free and booked some fantastic outings to places in the UK we had never been to before. As the year ended, after a discussion with the oncologist, we took a massive decision and booked a holiday in Africa. I was very nervous about going away and travelling but had seen how others in my situation had been travelling all over the world. The clear message was do what you can while you can. Our holiday would be between the scan and the results appointment with the oncologist. We hoped that being away would help to distract from scanxiety.
Christmas was quite an emotional time and a marker in terms of measuring my survival – would I still be here next year? Listening to carols set the tears off. My family and grandchildren came to celebrate with us. It was the first time we were all together since the Pandemic which had restricted family gatherings. I wondered if my family all had the same thought about my survival. The house was packed, and it was total and utter chaos! Discarded wrapping paper toys, presents and crisps were all over the place; Christmas dinner was complicated to arrange with babies, children and adults! We were all squashed at the table but did anyone care? I certainly didn’t - we just let the day drift by. Everybody was happy, the children were delightful and most of the family helped in one way or another! Once I had realised there was nothing I could do about the chaos, and anyway it really didn’t matter, there are more important things in life, and enjoyed myself to the full.
On 31st December I looked back to this time the previous year when I was looking forward to 2022 with optimism. Whilst I had never taken good health for granted, my husband and I were looking forward to many more years together. We had both been screened for various diseases and given a clean bill of health. The events of this year had reversed our expectations. At the beginning of the summer, the time I love best in the year, I had experienced the most terrifying, loneliest months of my life as I underwent test after test for a life-threatening disease, that I didn’t believe I had. Once confirmed, I thought I wouldn’t see Christmas – but I did. As the year progressed, I became more optimistic as I learnt more about my type of lung cancer and my treatment. I reached a milestone birthday in the autumn which I also didn’t think I would see let alone celebrate; I have made so many new friends and rejuvenated old friendships; have some wonderful work opportunities to look forward to next year. Reading about other people’s experiences, coping strategies, advice, research, information and understanding was enormously helpful. I try to live every second, every minute, every hour and every day to get the best out of life.
I had never felt so loved and cared for by my friends and family and looking forward to 2023. I will let you know how it goes!
Wishing you all a Merry Christmas and best wishes for 2024.