Neuroendocrine Cancer site: Tail of pancreas and secondaries in the liver
Hello, my name is Kate and I have been living with neuroendocrine cancer for 13 years. I feel lucky to be here to see my family grow up.
It took three visits to the GP to get a referral to a gastroenterologist. My main symptom was I was vomiting bile and I had to ‘post-vomit’ lie on the floor to recover.
My youngest child was 2 and a half and about to start nursery. I didn’t want him telling everyone his mommy vomits. It turned out the vomits were caused by my enlarged liver bumping my stomach. I was very tired but I had 3 children under 7 years old. I knew something was not right but life was busy.
After being diagnosed my prognosis was very bleak. If I was lucky, 2 years. I had 6 cycles of chemo. This was tough. My husband was not coping he was just so sad. I decided for my family I would be strong and try and keep their lives as normal as possible. I changed my diet became vegan and life got better.
I had very good friends who helped me at this time.
I went into overdrive sorting the house, and buying clothes of a few sizes for the children. I was very honest with my children. I told them it was not a secret and everyone knows. That it’s normal to have sad days but they won’t last. I even let them know that it was OK for my husband to marry again. I wanted my children to be supportive.
I threw out everything I could thinking if someone comes into the family they don’t want to sort junk. Of course, I had some down moments but luckily I was so busy these moments passed. I started diaries for each child telling them about their early years and questions they may want to ask me when they had their children.
Seven years later my secondaries started to grow again. I had 5 cycles of chemo. I just could not do this again. It takes my independence and I am very slow to bounce back. Chemo does take you to a very dark place. I did it for my husband and children.
A couple of years later my secondary grew so I was offered PRRT treatment. This was so much better than chemo. I have had 6 cycles of PRRT. My biggest side effect was tiredness but I could manage this.
At 11 years they told me my primary had started to grow. I was advised to have it removed. A bit stressful but again calm – bring it on. They removed half my pancreas, all my gall bladder, and my spleen. I bounced back.
I have had scans every 4 months for the last 13 years. I never open my eyes in the scanner. I try and breathe calm thoughts. I go on my own despite many friends and a loving husband offering to come. I need to go alone so I can get my head around whatever they throw at me. I usually cry on route and on route home then pull myself together.
I have had Sandostatin injections monthly for 13 years. No real side effects.
My consultant has been excellent. The whole team has been supportive. I have just been so busy living. When dark thoughts come I let them go. I don’t want to be remembered as a sad person. I love my life and I am living it to the full. I juggle tiredness. I even forget now somedays of my diagnosis.. it’s always there of course but my motto has been just live. I never thought I would see my children get to double digits. I am so grateful.
Do you have any useful hints and tips that you would like to share?
Being very open and honest. Encouraging my children to talk about how they are feeling. Sometimes they have come home saying they felt sad today. We hug and I tell them it’s OK.
I really believe my diet has given me the extra time. It’s nothing special but going vegan is a way of life. Start by making small changes. My family eats meat but has loads of vegan influences. I exercise regularly which has been a struggle but I know is good for me.
Having PRRT I would encourage you organise your fridge, and prepare meals so you can rest post-treatment. I would rest all day for about a week before bouncing back. I recommend taking fresh fruit/ nuts when in the hospital as you need to keep your body strong. I focus on what I can do for me to feel good rather than the negatives.
My children are always reluctant to tell me if one of their friend’s parents dies as they don’t want to upset me. I really encourage the kids to talk about everything.