Hi, my name is Caroline and I am 49 years old. I have been married to my soul mate, Chris for 28 years and we have 2 fabulous children who continually make us proud.
Since December 2018 I have been fighting a relentless battle with cancer, undertaking every treatment offered to me. I am now at a stage where all potential treatments have been exhausted, leaving me with one option, to begin paying privately.
This is why I need your support. During the last 28 years, I have been dedicated to working within the NHS, only stopping due to ill health, however, the NHS is no longer able to help me at a time that I need them the most.
I am devastated that I have to write this, to tell you my story and to ask you for help. I have never asked for help in anything before and this is very difficult and alien to me. I would not be doing this if I did not believe this was my only chance of reaching my 50th birthday in February next year.
At the age of 47, as a fit and healthy individual who had never smoked, I developed a persistent cough that did not shift with antibiotics, followed by slight eye pain. Who would have known what this really meant..?
Within a month of the start of symptoms I underwent a number of scans, x-rays, and a lung biopsy, then 2 weeks before Christmas 2018, I received a devastating diagnosis of Stage 4 non-small cell lung cancer. My world came crashing down. Not only was I diagnosed with lung cancer, but I was also told that cancer had spread to an eye, shoulder, spine, and lymph nodes. How could this be? I went from fit and healthy to a terminal and palliative cancer patient in a matter of weeks. My life and that of my family had been turned upside down.
In January 2019 I started treatment on a chemotherapy tablet, Afatinib. I took this every day in the hope this would stabilise the cancer growth. I had regular scans to monitor any progression. In March 2019 my first brain MRI uncovered 9 brain lesions. Afatinib treatment would not reach the brain which meant I had to endure another type of treatment, stereotactic gamma knife radiotherapy which required me to face my fears of extreme claustrophobia. Thankfully, follow up scans in August showed this treatment had been successful, with only one lesion remaining which was treated in the same way. In October, scans showed although the brain lesions responded to radiotherapy, cancer below the brain had developed resistance to Afatinib. I needed to start a new form of treatment immediately as the tumours were progressing.
My oncologist informed me of a pioneering new blood test from America which would establish what cancer cells were growing and allow an analysis of which treatments would be most effective for me. I was able to have this test on compassionate grounds due to the unfortunate urgency of the situation. This normally costs around £3000. The results showed the DNA of my cancer cells, which led to me starting a new treatment called Impower150. This consisted of 4 cycles of combined therapy including chemotherapy and immunotherapy followed by cycles of immunotherapy alone. Scans in January 2020 and March 2020 showed a good response to this treatment with tumour stability, so I continued with my 3 weekly hospital trips to the chemotherapy suite to receive treatment. This was terribly scary to undergo amid the ongoing COVID pandemic.
I had to attend all appointments alone, spending the day in a hospital with a weakened immune system and nurses who initially had access to very limited PPE. As the NHS responded to the COVID pandemic my routine scans were delayed by a number of weeks. A delay in scans may not seem very significant but with my life-limiting condition, any delay could have devastating repercussions. Every moment I have is so very precious. In June 2020 my scan results showed a dramatically negative change. The body scan showed progression in all pre-existing tumours, including the original lung tumour almost doubling in size to 9.5x7cm, along with tumours seen in the lymph nodes, hips, and liver. The scan of my brain showed too many lesions to count. The treatment had stopped working, the cancer had spread, expanding its destruction through my body and shortening my life.
Why I need your help/ Present day
At this stage, my Oncologist informed me that the treatment options on the NHS were running out. She told me of a chemotherapy targeted therapy tablet, called Osimertinib, which can reach all areas of the body, including the brain. Osimertinib has been shown to be very successful in patients with my type of cancer.
Here is the catch – this is not available to me through the NHS like it is for some people which is why I need your help and donations. Osimertinib will cost me approximately £7,100 a month for the tablet alone, plus extra costs for blood tests, appointments, scans, etc. My world shattered again – is this the value of my life? In order to look after me, to take me to appointments and support me during my many treatments and tests, my husband had to give up work over a year ago. We do not have any income coming in, let alone this large amount of money.
In what seems to be a cruel twist of fate, if I had been diagnosed today with cancer, I would be entitled to Osimertinib free on the NHS due to COVID. It would allow me to have treatment at home, avoiding the need to go into hospital- many patients are receiving this exact care through the NHS across the UK. However, because I have received other treatments previously I cannot receive Osimertinib free on the NHS. I have no desire to be a private patient. If I have to pay for this drug, why can’t I pay the difference in the price between the cost of the chemotherapy that the NHS would prescribe me and the price of this tablet? This really stings as I have paid national insurance contributions since I was 16 and dedicated the last 28 years to working within the NHS. I feel cheated of life-saving treatment. I want to prolong my life as long as possible, I need to fund this treatment privately as I have no other options.
Please, please, please can you share this with all your contacts, family, friends, business contacts, and any social media that you have. Any donations will contribute to continuing my fight for life and help facilitate any further treatments that may become available, even if it is abroad.
I am more than happy to answer any questions and happy to post regular updates.
Thank you from the bottom of my heart for helping me to prolong my life and stay with my family.
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