Penny

Penny tells the story, in her own words, of her experience with pancreatic cancer.

2012 was Weddingone of the best years of my life. I loved my career as a midwife, my kids (aged 29, 24 and 17) were happy and healthy. I was fit and well running, swimming and practising yoga regularly.  I married my best friend Terry and I celebrated my 50th birthday with a trip to New York. Life really couldn’t get much better.

By Christmas, I noticed that I was particularly exhausted. I thought it might be stress related or menopausal symptoms. I was withdrawn and tired on my days off, often not getting up until midday.

By mid-February, I noticed a very vague pain on the left side of my chest.  Sometimes it felt like a mild electric shock and sometimes it felt just sore. It seemed to be worse in the evening.  I went to see my GP (not my usual GP as she was off long term sick) who signed me off work with a viral infection. I went back to see her every week protesting that I wasn’t any better and that without a definite diagnosis I felt guilty taking the time off work.  At the same time, I was however very relieved as I was just so tired.

After a few weeks rest, I took myself back to work. One day at work the sore intermittent pain in my chest was really bothering me. I decided to take myself down to A&E to get checked out.  All the tests were negative and the doctor I saw suggested time off work.

The next day I contacted a colleague who was the Consultant in charge of A&E. He wanted to run some more tests. I had a CT scan which revealed some worrying but very small lesions in my left lung. I was referred to a respiratory consultant. He was rather dismissive and said the lesions were not significant and he thought my pain might be muscular skeletal. I became very frustrated during that appointment and pointed out that my father had died of pancreatic cancer.  He said it wasn’t his department. I asked him to organise some more investigations. Eventually he agreed and booked a PET scan. Two weeks later, a very sheepish respiratory consultant had to tell me I had pancreatic cancer.

The date was April 17th 2013, I will never forget it. I left that appointment in total shock but with the idea that since my dad had died 28 years ago, things must have moved on and I would be cured.

My appointment a week later with Professor Karanjia was devastating. Slowly and carefully, and with almost brutal honesty, he told me that my tumour was too advanced and involved with the major hepatic vessels and due to what appeared to be secondaries in my lung the disease had become metastatic.

I was told that I had months to live. He briefly touched on chemotherapy as a palliative option but he stressed that it would be gruelling and if my life was going to be measured in months, I may want to consider not having it. He was concerned as to the amount of pain I was in and wanted to admit me to hospital I begged to go home. We left in total shock. I was taken up to endoscopy for a planned procedure to get a sample of the tumour (still in terrible shock). Telling my family and close friends was the hardest thing I had to do, not to mention getting my head around preparing to die.

I was given an appointment for palliative care, I dreaded it.  As far as I was concerned it made everything too real, and I was going to deteriorate and I was going to die. We went to the appointment and the doctor we met was very surprised at how well I looked considering my diagnosis. I had lost weight but I did still look relatively well. During that appointment I was fast tracked (my manager had already contacted him) to see the Oncologist Dr Sebastian Cummins. He too was very surprised that I looked so well. The results of the endoscopy showed a ‘typical’ type of tumour that might respond well to chemotherapy. That appointment was not all gloom and doom. I was told I had an excellent performance status (I was very fit otherwise) and that I would be a good candidate for therapy. He told us to go away, have a mini break, I was urged to try and put on some weight as I was only 8 stone and likely to lose weight during the process.Chemo

We had our mini break a long weekend in Dorset, very special and very surreal. I was so tired, so confused, so angry. I sobbed when we had to come home. Chemotherapy started in early May. I was prescribed a very aggressive regime for the chemo and was warned about the side effects. Headaches, fatigue nausea, rigors, hair loss. I had irinotecan, oxaliplatin and flurouracil (5FU). I would spend 5-6 hours on a day ward having the drugs (I now had a ‘PIC’ line, a permanent line in my arm) and then go home with a drip for 48 hours which would be removed by a community nurse.

I am not going to dwell on the side effects but just to say it was a very, very tough regime. It had twelve two week cycles, and ten days out of fourteen I could barely face the world and felt nauseous despite all the anti-sickness drugs. As time went on I became weak and frail but on the days I felt well I just made the most of it. I found going out walking helped to move the drugs out of my system. I felt like I was literally being poisoned which of course I was. I had a CT scan after six cycles which showed it was working.

After 12 cycles followed by 28 daily radiotherapy treatments combined with oral chemotherapy we had the amazing news that my tumour had become operable! We had had many emotional setbacks. My doctors were always puzzled by the lesions in my lung which diasappeared during chemo and never returned. I will never know if they were secondaries. I had to wait an agonising month after my last radiotherapy to see if they would come back.

On April 1st I had a distal pancreatectomy and had my spleen removed during six hours of surgery. The plan was for a Whipples but I was luckier than that and the operation I had, although very major was less aggressive.

Six weeks on, I have re-joined my gym this week and yesterday I swam 100 lengths again. Steady and slow but 100 just the same. I am diabetic now which I can cope with. My next check-up will be in six months’ time. It’s still sinking in. I am a very very lucky lady. My goal is to steadily get my fitness back and to return to work later this summer.

I cannot thank PCA enough for the continued support which is why I was jumped at being involved in the campaign earlier in the year. It educated so many and provided a much needed focus.