Tough year but still here

Hi everyone 

I’m new here. It’s been a long year. In December 2021 I started to experience problems eating. I thought it was Xmas over indulgence but I could only eat a few spoonfuls of food before feeling full and unable to eat more. 

I visited my doctor who after a thorough examination of my stomach informed me her first reaction was to send me to the Emergency Dept at hospital but her examination revealed no blockage in my stomach so to continue talking omeprazole. 

two days later I was still feeling very bad so as it was out of hours I called 911 and spoke with a healthcare worker. After answering a few questions (the same answers I gave my doctor)she  said she was sending an ambulance for me. 

at the hospital the consultant said I had a massive blockage in my stomach! The doctor had missed it. So go with your gut (literally) instincts if you don’t feel right. 

I was only allowed to sip water for three weeks and had my stomach aspirated several times a day. Eventually I was put on TPN as I had lost so much weight. Endoscopy investigations failed to provide the info required. 

I was eventually transferred to a huge world renowned teaching hospital at 11.00 pm one night. On arrival, a consultant came to me and said “you have cancer”. I said the endoscopy results were inconclusive. He replied that he and all his colleagues were 100% convinced it was cancer. 

the next morning I was told I was scheduled for a Whipple Procedure. The surgeon had a chat with me and described the Whipple as the most brutal op the body can take. He was right. I felt I had been hit by a truck. The op took 11 hours and the duodenum and all the usual bits were removed. Two days in intensive care was followed by a scare with internal bleeding that came close to them opening me up again. However, transfusions and treatment averted that. 

The tumour was in the duodenum with spread into surrounding tissue but with good margins. 

All in all, I was in hospital two months mostly in a side room. Recovery was slow and involved n mb any adjustments to Creon intake. Nausea, diahorrea and pain was my daily routine. 

Eight weeks later I was starting chemo, FolFox, and that was pretty hard going. After three sessions I developed a hernia at one of the operation drain site exits. It was decided to stop my chemo to allow a repair op to the hernia. It was believed to be high risk of strangulation hernia with potentially fatal consequences and needed to be dealt with in a controlled way and not as emergency surgery mid chemo. 

it took three months for it to happen as my neutrophil levels were so low the surgeon said I would certainly get sepsis if he operated. It took a series of five injections into my stomach to stimulate bone marrow growth to restore the levels back to an acceptable state. the op was successful and after recovery I restarted chemo. 

I had 8 sessions out of 12 before my tolerance was so low we decided to stop. Interestingly, the oncologist said 6 sessions gives the vast majority of benefits with any additional giving marginal further benefit.

My last scan a month ago showed no further tumours but an 8mm nodule in my left lung. So I’m having another scan at beginning of April  to measure any progression. 

it has been a tough year but I’m getting back to some sort of normal albeit a new normal. You learn to appreciate the simple things in life and look forward to waking up each day. 

Who knows when the journey will end but I don’t waste time on fear or worry. I am updating my will as it was way out of date (it was from 2007) and enjoy seeing my children and grandchildren more. 

if you get offered a Whipple I would suggest you jump at the chance. I thought chemo would be my best chance but the oncologist said without a doubt the surgery was my best option of extending my life. 

This type of cancer is so difficult to research as so little is known. The different prognosis I have had made me realise the margin for error is wide. 

It is now 7 weeks since my last chemo and I’m feeling better and more normal as each week passes. Still getting hit by fatigue though.