Margaret’s story

In January 2017 I went to my GP complaining of stomach ache and difficulty with acid reflux. I do have a Hiatus Hernia and a history of polyps, and so a colonoscopy was due. The colonoscopy was scheduled for April – by which time my stools had turned yellow and were frequent, and my weight continued its downward slide.

These symptoms were noted at the pre-routine appointment. The colonoscopy was ok despite poor prep due to my vomiting half the medication, and the computer being out of action. My weight loss continued and I had an ultrasound scan in late July. Unfortunately, stomach gasses marred the picture, but the doctor thought there could be a spleen or bile problem.

My diagnosis

My weight was still going down, stools every shade of yellow. I saw a doctor in late October who diagnosed constipation, but luckily he also ordered a CT scan to rule out any other problems. This scan obviously showed a problem and I then had urgent blood tests and an MRI scan was scheduled for 20th December – by which time I was yellow.

I saw my GP just before Christmas and she broke the news it was pancreatic cancer, but to be positive as there was lots that could be done. Christmas was quiet, although I did come second to the Christmas lights with my yellow glow.

I had a stent fitted in January to ease the jaundice and I was referred to a consultant in London with a view to have a pancreatic resection (surgery to remove the cancer). So far so good. I felt wretched having had a cancer diagnosis, but the future had hope.

Treatment options

However, that hope was soon dashed as the consultant could see the tumour was too near veins etc. to operate. That had to be the worst day of my life. My husband and I had silent tears as we looked at each other. The future had gone. I went home and sorted through my clothes and shoes – they went up to the charity shop. I wanted to make life as easy as possible for Rob. Lists were done of who he would have to contact, and we both had funeral plans so that was one job less.

I tried to get an appointment with the oncology department to set up chemotherapy, but my local hospital said they did not have my notes, the London hospital assured me that they had been faxed through. Oh enough of this! I had read of a new cancer treatment using the immune system, but was told it was not suitable for my cancer…yet. The London hospital rang to ask if I would be interested in taking part in a clinical trial. What? Life was beckoning me again!!

Taking part in a clinical trial

I met up with the trial team, read the literature and took it home to digest. It became a no brainer as my local hospital had still not made contact, so I signed up. I began the trial in March 2018 – not pleasant, I felt nauseous a lot of the time and my hair went within 3 weeks. I was surprised at how that affected me, it had always been thick and straight, it was a bit of a bother but it could look good, now it was gone.

Chemotherapy and radiotherapy

The 12 rounds of chemotherapy eventually came to an end. Now to find out if I was fit enough to continue onto radiotherapy – I was.

The four-week respite was great. I gradually got my appetite back, food was not the chore it had become, and my strength seem to return to my legs. I did not have trouble with radiotherapy, apart from the daily trips to London. I could not have done that under my own steam, but luckily I had hospital transport for that six weeks.

The future

Now the wait for scan results. Sadly, the tumour had not shrunk, so no surgery. But on the bright side it had not grown or spread.

I have got back into my old routine. I had always enjoyed swimming, line dancing and exercise classes. It has taken time to get my energy levels back, but on the plus side all the folk that I swam with or danced with or saw in classes have been so supportive. One of the lady swimmers gave me very good advice, “If you only have energy for one thing, make sure it is not housework!”.

I have just had a scan and results are still good, so I have asked about the possibility of NanoKnife® surgery. They have said they will look at my scans to see if I could be a candidate, and that they may be starting trials at the London hospital. So fingers crossed.

15 months ago I was a poorly, fragile, skinny being with no hope for the future. But now thanks to the various teams at the hospital, and Creon, I am looking forward to a future.

Stay positive.

January 2019