Newly diagnosed Advanced pancreatic cancer

[Athena]

Hi All

This is my first post.My hubby has been feeling unwell since the second week in October. The first GP that we saw misdiagnosed gastritis. Hubby had loose bowel for one morning followed by tummy ache that was hard to pin down to one area. Whilst at the Doctors, we also talked about his heartburn and indigestion that also appeared from nowhere. That GP was too busy holding the door open to shoo us out whilst we were trying to get more advice from her. My hubby was in work but his boss was kind enough to lighter duty which brought him home earlier.

As my hubby has a history of back pain it had been SIX years since he had requested a box of Tramadol of which he would take the odd one from.So whilst at the Doctors he requested a box of Tramadol. The Doctor reluctantly gave a prescription for that one box of Tramadol. She did poke around his tummy and said all was fine. We told her that he was off his food and felt bloated. His blood pressure was 140/89 I asked if that was a little high but she said it was normal. Then we left.

Three days later we rolled up at an out of hours Doctors centre on a Saturday lunchtime.

Hubby was still in pain tummy and now it was rolling around to his back. Again this doctor thought it was gastritis, I asked how can this be when he didn't have any loose stools since that one morning. Again the Doctor felt his tummy and said all was well. Hubby asked about the back pain and pointed that area out to the GP. We were told this was his usual on/off back pain. Hubby told the Doctor that this was a different pain, that it felt like it was coming from his insides - not from his spine. Maybe it could be kidneys? Doctor said it wasn't that as kidneys not in that area. The GP did a urine sample test which came back clear of infection. Then he took hubby's blood pressure. 166/110.

He told us that it was high and we will have to go to flag it up with our family GP. He gave a prescription for 11 Omeprazole for the heartburn and indigestion.

The following Monday we were at the Doctors again. Saying the same things... No loose bowels, lots of generalised tummy pain, poor eating, lots of gas with deep loud burps, rumbling loud tummy 24/7, back pain, I was now checking his B/P and body temperature, also making notes to see if there was a pattern forming to give us a clue as to what is happening to my normally very strong never poorly hubby. The GP (a different one from the first) listened to us. He gave me a form to write down B/P morning and night so that in a weeks time he can figure out the median.

He also ordered a blood test. This was now 1st November The blood test came back all normal results including Amylase,B12 & Folate.Bone profile,CRP,ESR full blood count, HbA1c, Full Lipid profile, Iron profile, Liver profile, Renal profile,Thyroid Function Test. GP also ordered a stool sample to check for H Pylori.

At this stage hubby was eating soups,pro-biotic yogurts, toast,beans light poached eggs, chicken broth, crisps, biscuits. All much lighter than earlier. He was still in work and I was asking him to go as he needed rest. Her was using the Tramadol scantily to make the box of 56 last.

On the evening of Sunday 10th November his pain level got out of control.I begged to call for an ambulance in the end I rang 111. They said an ambulance will be here in 2 hours. Five minutes later they rang me back on my mobile and said it will be here with in 15 minutes.

We cannot thank the paramedics who arrived enough. I gave them the now filled B/P form to look at and told them we had a GP appointment for the next day to take it in to give to our Doctor. Once in the ambulance before they administered IV Paracetamol followed by IV Morphene they checked hubbys B/P. They thought their machine was broken as it read 175/115. Once the pain relief kicked in his B/P went down to 139/80 - the first time in weeks that it was normal. 20 minutes later we were taken to A&E.

At A&E my hubby was kept on a trolley in a bay for 6 hours. They ran his bloods - Normal.

Chest X-Ray - clear. A Doctor wrote down a list which was 2 paracetamol, 2 Tramadol, 2 Buscopan and told us to take this list to our GP and to request an Endoscopy as she suspected Ulcers. She said they couldn't organise one as it was "A one in - one out and they were full" So we came home at 5.30am grabbed a couple of hours sleep and once again at 11am were sat in the GP's office.

The GP wrote a prescription for Ramipril for blood pressure, Tramadol and we said we would buy the paracetamol and Buscopan separately due to cost Versus prescription charge also we were still not impressed by the previous out of hours Doctor giving only 11 Omeprazole at the cost of that prescription.

On that day with the medications really helping with the pain my hubby was able to toast with a tin of beans & sausages. We were hopeful that "This suspected Ulcer would be under control whilst it was healing" We now had a plan of attack and felt like we had some control.

The GP asked for a kidney function test to be done after being on the Ramipril blood pressure tablet in 2 weeks time and for us to come back to him the following week. At this stage my hubby had lost around a stone and a half in weight. I was very worried. I asked the GP if this was maybe a blocked duct in his pancreas - I was told no because the Amylase level came back normal. I was having to email the GP to ask for more Tramadol as he was taking 2 every 4-6 hours and the prescription would only last a week. The Ramapril didn't help with his B/P it was steady at 166/100. He felt full up all of the time, the gas was still really bad. We had some control over his pain. His boss had him on light duty and he had used all but 1 day of his paid holidays.

Now we were at the first week in December - GP had now added another B/P medication to the ever growing medication list.

We had spent over £200 at the chemist buying the many prescriptions in one month.

GP ordered an ultra sound scan which came back normal. He couldn't understand what the problem was. He took one look at my hubby and told us that "He is NOW taking this serious and not ruling out cancer. He ordered a CT scan under the 2 week wait rule and also asked to see an Upper GI Consultant. The CT scan was done a week later. Consultant appointment was Wed 11th December at Halton. The consultant ordered Endoscopy and colonoscopy for the 23rd December at Warrington Hospital.

Hubby was straight to bed after getting home from work at 11am. Now that week the second in December he has stopped trying to eat meals and was eating crackers with soft cheese, poached egg with 1 round of toasted milk loaf. I bought conplan in to try and get some essential vitamins and minerals in his body. He worked his last day on Thursday 19th Dec and used up his last paid holiday for the 20th December.

On the morning of the 23rd December after struggling to take the Moviprep the night before we received a call from our GP to say that the CT results were in and we should be worried. He said he would ring this through to the Consultant and for us to come to the surgery to talk. Once at the consultant appointment our world folded. Advanced pancreatic cancer spread to the Liver.

Since that day we have had no help apart from Creon tablets.

Indecision with the consultant(s) on whether they can actually grab enough of the cancer via a needle extraction from the liver - or just send us to The Liverpool Royal.

I have rang the upper GI head nurse and she cannot explain any more. So we are still waiting for a way forward, some sort of plan...I rang 2 times last friday and my Mother in Law also rang after my calls. Its now Monday 6th Jan 2020

That CT scan was done on the 12th December 2019

Sorry this is a long rant....But I am hoping that this sad situation can be a warning to other folk out there also any advice given by any one who is also on/been on this scary path.

I am disabled with spine problems and have carers in twice a day to help me. So i am quite isolated as a normal rule. I am so very heartbroken over my dear wonderful husband crumbling before my very eyes.

[PCUK Nurse Nicola]

Hi Athena,

My name is Nicci and I am one of the nurses that works on the support line here at PCUK. Thank you for sharing your story so far although I am so sorry to hear of your Husband's diagnosis, I know this must have been a terrible shock to you both. I am going to email you seperately Athena, I do hope thats okay.

Kind Regards

Nicci

Nicci Murphy

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[b9_iwish]

Hello Athena, my story is not quite as horrendous as yours. But dealing with GP'S seems a complete waste of time.

I apparently was diagnosed with IBS in July until my jaundice forced me into A & E in November where eventually a CT scan showed a tumour in the mouth of my pancreas.

NHS is very reluctant to spend money on CT scans. Paracetamol is far cheaper for their budget - shame on them.

There is an organisation in Liverpool called EUROPAC. Google them, very helpful Iike this website. Don't know if they can help but here's a contact number for you

01527064168

Goodluck and my best wishes, b9