Dhrupti, pancreatic tumour
When were you diagnosed and what with?
I was diagnosed with a rare type of pancreatic tumour – a pseudopapillary tumour in September 2014, after major surgery in August 2014.
How did you find out you had cancer?
I had been feeling unwell for over 4 years prior to diagnosis. I had various symptoms which could not be linked to a single pathology. I had been mis-diagnosed several times, after which I lost faith in my GPs and did not return until I had a huge lump in my abdomen.
What did you think and feel when you were diagnosed?
My first reaction to the diagnosis was one of relief, which sounds strange, but actually it meant that I did not have to live with the symptoms I had been experiencing over the last few years and what I was feeling weren’t symptoms of depression, which is what I had been told by one GP. It wasn’t in my head. I was told I would need surgery (keyhole) and would be fine after that. So even this did not scare me. I felt a little anxious because no-one knew what I had prior to the surgery and there was a lot of speculation.
How did the people around you react?
I was lucky that my husband and father are both very practical. I think they were all worried but tried to keep things as normal and as routine as possible which I welcomed very much.
What treatment did you have?
I had major surgery in August 2014. I was scheduled to have a small keyhole surgery, which my husband and I were told would last 2 hours at the most. As the team weren’t sure what they were dealing with and the results of my biopsy were inconclusive the plan was to send a sample while I was in surgery which would dictate if I would need further surgery and they would wait for the results and do it all in one go. We were told there might be a 5% chance of needing a pancreaticoduodenectomy; which is what I ended up having.
How did you feel through treatment?
Following my surgery, I felt quite vulnerable and despite having so many people around me I felt completely alone. I kept going through several different emotions from hour to hour – anger, frustration, anxiety. Physically I was also dealing with the complications of the surgery – inability to digest food, vomiting, inability to eat, pain, unable to sit/stand/walk. And I felt like I had to be strong for my husband, my parents and my brother.
I was also very angry with my GP for having ignored me for several years and resented that I was having to deal with this, instead of what I wanted to be doing – concentrating on my career and hoping to start a family.
What happened after treatment finished?
I was fortunate enough not to need chemotherapy or radiotherapy. However, the extensive surgery was enough to deal with. I later on found out that my remaining pancreas could no longer produce digestive enzymes so I would have to be on pancreatic enzymes for the rest of my life. Since then I have had several hospital admissions for uncontrollable fevers, recurrent infections and excessive weight loss due to weeks of ongoing diarrhoea.
I am now regularly followed up by my surgical team, an upper GI consultant and an endocrinologist.
How did you get involved with Shine?
I was introduced to Shine by a Shine member when I approached her about setting up/starting a group for young people who have been through cancer. Whenever I go to hospital and even following my surgery I was the only young person there. And I was told by the consultant that I don’t fit the profile for someone who has pancreatic cancer – I am not male, don’t drink alcohol excessively and not in my 60’s.
The other reason I wanted to do something with young adults is that I feel I went back to work too early following surgery as I felt pressured to do so. Once I returned it was difficult to explain symptoms such as fatigue, chronic pain, sleepless nights etc to work colleagues. I felt like I needed some support/someone who understood what it is like.
What difference has Shine made to you?
I attended Shine Connect with my husband and in a strange way it was quite reassuring to know it’s okay to get tired and feel fatigued. I also got some great tips about how to deal with work and it has given me the confidence to be more assertive as I know that I have rights and my workplace should be more supportive.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
The biggest change I faced has been to do with my digestive system and the challenges of socialising – most social events are focussed around food and drink, which I cannot handle very well. The problem is I love food and cannot control myself around it and this then leads to consequences after which sets me back and I have to start the process of picking myself up again.
On a positive note it has also made me value life and I have learnt to let go of a lot of things and now tend to spend more energy on enjoying life, doing things that make me happy and spending/making time with the people I love.
If you could give one piece of advice to yourself before your what would it be?
I would say live life to the fullest as you do not know what tomorrow is going to bring. And definitely not to waste time on cleaning – it is over-rated (if only I could follow this advice fully now – I still need to clean!)
I have a blog which goes through my experience in greater detail if anyone is interested: