Carer Story: Joanne
Martin was diagnosed in 2013 with pancreatic cancer and had to undergo chemotherapy to shrink his tumour enough to be eligible for a Whipple procedure. A few years after surgery and Martin is back to his active self, his wife Joanne tells his story.
Not sure where to begin so I’ll tell you a little back ground to our lives leading up to diagnosis. In November 2013 Martin visited the GP because he was worried about blood he’d seen in the toilet. He was never ill and this really worried him. I wasn’t overly worried, expecting it to be something and nothing. The GP referred him for tests, so he had a colonoscopy. A few weeks later we were informed he had ulcerative colitis. Concerned but very relieved that the consultant told both of us that day he could have treatment.
This was diagnosed in a mobile unit which are used to speed up waiting times for tests. I told my husband I would be happier if he would transfer his care over to Salford Royal Foundation Trust (SRFT), where I actually work in The Cardiology Department. We have a very good Gastro intestinal unit, and this is where I felt his ongoing care should be. He had one consultation there with a senior consultant who told us the colitis was in remission and the blood results all came back normal. He couldn’t explain Martin’s ongoing pain in his upper right torso and middle of his back.
This pain continued to go on, and progressively got worse, he would very often be up during the night in pain and in hindsight I can’t think why we didn’t move faster. I can only imagine being told he had colitis we presumed this was all part of it. We put his symptoms down to this diagnosis. I had started to wonder though and we both looked online, and came up with two other options, one would be gallstones and the other Pancreatic Cancer.
Martins diagnosis
At the end of October 2014 he became jaundiced. We’d had a Chinese meal a couple of days earlier, Saturday, to celebrate our youngest sons 16th Birthday. Martins body obviously could not process this food. He messaged me at work, Monday, to tell me he was coming in to A&E. I met him there. I still wasn’t overly worried, expecting more than anything they would say gallstones. Everything pointed to gallstones. In A&E they did the usual bloods and put a drip up and decided to keep him in overnight as his liver function test was so deranged. He was admitted to a surgical ward. The doctor had requested an ultrasound scan for the following morning. I think this was done on the Tuesday afternoon. They wheeled him straight from ultrasound into MRI scan. On Wednesday morning I popped on to the ward to see him before I started work in my department, and then left him asking him to let me know as soon as the doctor had news. Within half an hour he text me to say he needed to talk to me. I knew. I can still remember the panic as I walked to the ward. He took my hand, walked me off the ward and said there is a mass on my pancreas.
So Monday evening admitted through A&E, Tuesday afternoon ultra sound scan and MRI to confirm expected gallstones, and Wednesday morning informed there is a 5cm mass at the head of the pancreas. My world fell apart. We have 4 children and I needed to tell them.
Martin had a CT scan arranged for the Thursday evening. I have never prayed so hard in my life that this cancer had not spread. I knew already the survival rates of pancreatic cancer, and I knew the reasons why. I knew if we had any hope at all this cancer would be contained. My prayers were answered. When I went in to see him on Friday morning he had met with a lovely HPB consultant who informed him it had not spread, but it was borderline too close to the right portal vein and they would take his case to MDT to fight for surgery. I begged God, I begged the consultant to please give him a chance. I knew without surgery he had no chance.
We had an appointment booked for the following Thursday 6th November 2014 to find out how the MDT meeting went. Unfortunately as we entered the room it was obvious by the consultants face they couldn’t operate. She simply told us it is just too close, possibly not even 1mm to get a knife in without potentially damaging this portal vein. We were devastated! The way the doctor and her nurse looked at us, was desperate. They offered us no hope, nothing positive. The doctor informed us all they could do was to refer us to The Christie hospital to the care of Professor Vale and his team. They also said they needed to do ERCP to put a stent in, to look closely at the mass and to take biopsies. We did this the following morning. So sad we should have been heading off to Northumberland for a long weekend to celebrate our anniversary.
I have never seen Martin in so much pain as he was that day after ERCP. He looked wretched. A little positivity crept in that day.
Still in terrible pain Martin said to me “Matthew said to me ‘i don’t want to get your hopes up but this doesn’t look like what I was expecting. Some of these cells look dead and it isn’t as close to the vein as it looks on the scan.” Dr Donaldson our HPB Consultant came in and looked quite happy. She repeated what Matthew Williams, The gastro consultant had told Martin. She joined her hands together and said, I pray you are my one in a million, I pray this is some weird obscure thing and not cancer. She said she would take it back to MDT the following Wednesday and see us on Thursday in clinic. We remained positive all week hoping and praying this would come back not cancer, or that they had reconsidered surgery as an option. In clinic on Thursday we were hit again with ‘it is cancer, adenocarcinoma, and they still wont operate’ This news absolutely destroyed us.
I’m sure if this is of interest to you, but from the moment Martin came out of SRFT we monitored all his food and drink. Water, lemon in hot water, green tea were all he could drink. Fruit and vegetables were all he ate. I bought everything fresh and organic where possible. No sugar except what he got from whole fruit. No dairy. He used soya milk for porridge. He ate nuts and seeds for fat. He did this for 6 weeks until chemotherapy began. The chemo had been deferred a little as he’d picked up flu and couldn’t have his Hickman line put in.
Martin begins chemotherapy
Chemotherapy started about 3 weeks before Christmas. Folfirinox every fortnight. I found The Christie Hospital absolutely amazing. We were both so scared of visiting the consultant that first time, expecting to be told percentages of survival, and time scales of life left…but nothing. Nothing at all. We walked out of there feeling great. We had a plan and we literally started to live one day at a time. We were told the chemotherapy would be extreme, that it would make Martin very sick. The Oncologist words to him were ‘we are going for broke’.
Fortunately, Martin was extremely tired but nothing too bad. He slept like a baby. He ate really well, really healthily. We obviously started to introduce more foods such as chicken and fish, homemade breads and potato with skins to give him much needed energy. He also had his little regime each morning where he’d take a high dose of Vit C, Omega 3, Folic Acid. He had 10 days sleepy and 4 days good where he would walk and cycle and come shopping.
He was knocked back by the time his 3rd cycle was due, his neutrophils were too low. So we deferred a week. That week we turned a corner though as were told his CA19-9 had halved.
He started to juice once a day settling on organic uncooked beetroot and spinach and turmeric with a little coconut oil. He also took a little Astragalus and from that point on his bloods remained excellent. The doctors would come in and say his bloods were better than their own.
The original plan was 6 months of folfirinox with a scan half way through. The CT scan was done beginning of March and we had the agonising wait for results. I remember we were both out cycling and when we got home he had a letter from Manchester Royal Infirmary (MRI) This was the hospital that the surgery would have been done. He had an appointment to meet a surgeon. We couldn’t believe it! We hadn’t had the scan results but we felt sure this could only mean the best of news and that the tumour had shrunk.
We went along to The Christie for a routine review and expecting the CT scan results and the news was good. All along we’d been told ‘it’s possible’ or ‘no guarantees’ or ‘its happened once or twice’ and now we were being told the CA19-9 markers were within normal limits and the mass had shrunk by almost by 2-3cm.
Martin undergoes the Whipple procedure
We met the surgeon who was fantastically optimistic, he told us he might find veins and blood vessels that are involved but he would re-sect them and give Martin the best possible chance of a full recovery.
Martin had his Whipple of April 17th 2015. Mr Nicola De-Ligouri Carino performed almost 12 hours of surgery at MRI. Martins portal vein was still involved, and needed to be re-sected. The doctors who worked along side Mr De-Ligouri said it was the most extreme surgery they had ever seen.
In May, the surgeon telephoned Martin with pathology results. The news was very good. He was very pleased to inform Martin all clear margins. No lymph nodes involved. No cancer present in the pathology. He said he’d been sat looking at the results for days, not sure what to make of it. He said it was extremely rare but that Martin looked to have had full response to chemotherapy. All that was left in what had been removed was dead cells and scar tissue. He was so confused by the results that he’s sent them off to Liverpool and then on to Leeds to get second and third opinions.
There was obviously some percentage of doubt as to whether this was definitely a cancer. We were informed at some point it could have been a misdiagnosis. However, everything has been checked and re-checked and specialist pancreatic pathologist have concluded that looking at the original biopsy and all other pathology specimen it is in keeping with Adenocarcinoma of the head of the pancreas and that martin had a full response to chemotherapy. The most recent CT scan was back in January and all clear thank goodness.
He has been back in work full time since August 2015 and walking, climbing and cycling and getting on with life as if this never happened. Obviously he still suffers from Whipple related issues, but a small price to pay.