Hello...
Iv recently been diagnosed with pancreatic cancer and it has been a nightmare over the last 10 weeks. My life has completly changed in so many ways. I have just turned 39 and was on holiday in Tunisia with my husband living our best lives. I started to get upper abdominal pain on the day we came back but put it down to eating something dodgey. I went back to work but had severe stomach and back pain all that week. By the weekend I was in agony so went to the doctors and was referred to the HPB ward at the hospital.
In the hospital I had an ultrasound scan as everyone thought it was automatically gallstones. The scan showed I had a couple of gallstones but the hospital didn't think they were causing to much of an issue and to go on the waiting list to have the gall bladder out on the future. I was given some pain killers and off I went.
Within 1 week I went to A&E as my pain was worsening. They suggested I maybe had severe acid reflux and again was sent away with some more codine... I knew it was not acid reflux but had to go along with the hospital. Within a few days I was back at the GP and was now in excrusiating pain. They thought maybe I had a stomach ulcer or HPylori infection. I was added to a list for a endoscopy and waiting for the HPylori test.
Pain continued to escalate into my back and ribs. I was climbing the walls. Ended up back in A&E and was basically told that unless I was bleeding from my mouth or other end that it's not really and emergency situation and I was told to go back to the GP. By this time I'm at braking point and didn't know where to turn. I felt hoepless and in pain. I went back to the GP who sent me to a different A&E and from there I was assessed and they decided it was my gallbladder again. So I was admitted and specialists said my gall bladder should be removed as an emergency. I knew it was not my gallbladder but went along with the specialist doctors. I had that done and went home to recover.
Within 4 to 5 days all the pain was back as painkillers were slowly wearing off from the gall bladder procedure. I went back to the same ward and finally had a CT scan. This is almost a week later. That's when they spotted the 6cm tumor on my pancreas. I was deverstated and in so much shock. I went on to have MRI scan and a PET scan. These both showed no spread which was great. The plan was to have chemo and then the whipple surgery to remove my pancreas and spleen. My chemo was scheduled for beginning of December.
I have been really struggling with constipation caused by all the opioid pain relief and this is turn has been causing sickness. I was admitted to hospital couple of times because of this and had a further CT scan last week. The scan unfortunately showed that the cancer had spread to my liver which means I can no longer have the surgery. The plan is for me to still continue with the chemo. The sudden spread was overwhelming and frightening and I still cannot believe it has changed so much in a matter of weeks.
My story, although beit a sad one.... I think should be shared. I am very young and my family and me are obviously deverstated. I just cannot believe how much your life can change in a few weeks. I feel very let down by the NHS and I think it's sad that it was missed so many times and misdiagnosed. They were not looking for it because of my age. It's very rare and sadly does seem to get missed in younger people. I do not feel that I was taken seriously in the beginning. Pain is very hard to judge by others but it's important to express how much pain you are in. Keep pushing. Pancreatic cancer is horrible and often by the time you know you have it, it has spread to other places. It's a silent cancer in many ways.
I start my chemo tomorrow and I am fighting to spend all the time I have left with my loved ones. I want to share my story for awareness so that people don't wait and do keep pushing for help and scans. I wish mine had been found earlier but I can't focus on that now. Now I focus on family and love and enjoying every second I have left with people that matter most.
This forum has helped me a lot and reading all your stories has helped me be brave and share mine. Lots of love.
Hi Ethellongbottom welcome to the forum. I am beyond sad reading your post and hearing how much you have tried to get people to listen and to hear you . It's shocking what's happened for you. Sadly we are seeing more and more of these stories just now and I'm not entirely sure what's happening to be the less than good service we all expect, and rightly so from the NHS..I wonder if you would maybe like to speak with someone at Macmillan to highlight your story for awareness? If you did you can speak to them on 08088080000. I so wish you well for the ongoing treatment..sending very best wishes and huge big hugs your way for now.
gail
