Theresa was diagnosed with metastatic pancreatic cancer in September 2018, and is having FOLFIRINOX chemotherapy.
I began to feel very tired at the beginning of August 2018. We had been very busy extending our home and I put the tiredness down to stress and getting older. I have always been an active hill and mountain walker, I liked to ski at least once a year, and I have in the past sailed a lot with my late husband. The week before I became really tired I had been on an outward bound training course with the air cadets and I was walking, mountain biking etc. with no problems.
I went to see my GP towards the end of August. We had been on a cruise and I just couldn’t stay awake. My GP sent me for blood tests which showed that there was something was wrong with my liver. She thought it might be hepatitis and I asked the question ‘Could it be a cancer?’. The GP did not think it was a cancer because apart from being tired I looked really well.
The doctor ordered some more blood tests and arranged an ultrasound scan and we went on another holiday to Scotland. Whilst in Scotland it became evident that something serious was wrong; I found it difficult to walk any distance, I couldn’t eat, I was losing weight and my urine was orange.
On the 24th September the ultrasound scan revealed a 62mm x 38mm mass in the body of my pancreas and multiple liver deposits. I must admit I knew nothing about the pancreas, where it was and what its function is.
I had a CT scan on the 25th September, and a week later a sample was taken from the mass which confirmed poorly differentiated adenocarcinoma. I was told on the 9th October that I was terminally ill and that there was no cure, my oncologist told me that I had months rather than years to live. By this time, I was sleeping a lot, had lost a stone in weight, had very little energy, had developed a pain in my right shoulder and had quite a nasty cough.
My oncologist did not think that I was fit enough to tolerate FOLFIRINOX chemotherapy, but we agreed that I would have a week on steroids and if my energy levels improved I would start on FOLFIRINOX the following week. If not, I would start on a less aggressive form of chemotherapy treatment.
I started FOLFIRINOX on the 18th October. Once I was diagnosed treatment started very quickly. FOLFIRINOX is administered through a PICC line. It involves at least five hours sat in a chemotherapy ward, and then a portable pump is attached to the PICC line and the drug 5-FU (Fluorouracil) is administered over the following 48 hours. The pump is removed by a district or hospital nurse when the pump has emptied.
Coping with chemotherapy
I have had 6 rounds of chemotherapy so far; it is indeed a tough regime but I feel I am managing the side effects well. I have not been physically sick, I have kept my hair and I do not have any pain. I do get tired during the week following chemo, and I have a strange taste in my mouth and some foods are tasteless. I try stronger foods with herbs and spices, and I drink more herbal teas, ginger beer and smoothies to help.
I also experience tingling in my hands, feet and legs when they are cold. To cope with the tingling I wear ski gloves, thick socks and 2 pairs off trousers when I go out. It’s also helpful to wear a scarf over my mouth, because the cold does cause a reaction in the throat, and I ensure that any cold drinks are kept at room temperature. These symptoms usually last for up to 7 days and are quite manageable.
I do get ‘dip times’ 4 to 5 days after chemo, and during those days I get a bit of diarrhoea. I also get a bout of low mood and I swing from ‘I can beat this horrible disease’ to ‘I can’t do this’. I try to keep busy. I walk as much as I can, I try to read and I have started a new hobby, cross stich. But from day 4 I listen to my body and I rest.
I look very well, my tumour markers have reduced greatly, I have regained all the weight I lost and my liver function has improved. I did take a chemo break during the Christmas holidays because I wanted to enjoy Christmas and New Year. During that month we spent a lot of time with our families and friends. We went to Scotland for Hogmanay celebrations and my energy levels were just great.
This is a horrible disease but my plan is to beat the statistics and to live for years not months. I have things planned in my diary to look forward to. I have a grandson due at the end of January, my third grandchild and I want to see him grow. That said I am also a realist and know that this awful cancer will take my life, let’s hope a cure is found very soon.
Update February 2020
Its been a while since my story was posted on this site, but that time has passed very quickly. My third grandchild, James, was born on the 28th January 2019 and I have just celebrated his first birthday with him. This was a birthday I didn’t expect to see.
After 19 rounds of FOLFIRINOX and participation on an immunotherapy trial, I decided to take a chemotherapy break.
During my treatment my tumours reduced significantly. Initially the tumour in the body of my pancreas measured 62mm x 38mm, and I had multiple liver deposits. My last scan, which was at the end of December 2019, showed that my main tumour was stable and measured 11mm x 9mm and the only measureable tumour in my liver was 8.5mm.
I did manage the chemo quite well, my side effects were minimal compared to other people. I did get very tired, and I suffered with mild diarrhoea, neuropathy, a sore mouth and breathlessness.
I had chemo on a Thursday was generally OK until the Monday and then for 4 to 5 days I would be unwell. I took chemo breaks so that I could go and do fun things without worrying about having treatment.
I continued to enjoy my food and actually gained over 2 stone in weight. I walked as often as I could, went out with friends, enjoyed short breaks in our motorhome and tried to do as much as I could to keep my fitness levels up.
My last chemo was at the end of August 2019. I have regained some level of energy since. I have been on a number of holidays abroad and within this country, and on the whole I am doing OK and enjoying a new life.
I am not as fit and as active as I was before my diagnosis, but I have to remember that I am also 17 months older than I was when I started on this cancer journey! I am a lot heavier than I was so my high level of fitness has probably gone for good. My oncologist reminds me at every visit that the cancer will start to grow again and of course it is something that I am very aware of, every twinge/pain and the worrying starts.
To date I am winning, I keep positive whilst also being realistic and I hope I can remain stable for a while longer.