It’s an amazing service to have
“I have multiple endocrine neoplasia type 1 (MEN1), a rare genetic condition, which causes tumours which affect my endocrine glands,” explains Keri, 54. “These are usually located in the parathyroid gland, the pancreas, and pituitary gland; the secondary tumours can be anywhere and can be non-benign or cancerous.
“Unfortunately for me, my primary site is my pancreas and the secondary site is my lung, which was found by chance. I was very lucky. It was found just before we went into lockdown, and the course of treatment is management. So far, I haven’t had any surgery to remove anything. I receive lanreotide intravenously once every 28 days, which was being carried out at the James Paget Hospital in Norfolk.”
Keri, who lives near Beccles, where the unit is based, says it would often take her an hour just to get the hospital, also factoring in parking. My appointment now is “literally just ten minutes up the road outside Morrisons.
The staff are amazing. They kill two birds with one stone because when I have my monthly drug, they know I’m coming and take it out of the fridge, as it has to be left at room temperature for 20 minutes prior to them administering it. And because they also take my bloods at the same time, it saves me trekking to hospital for this. Also, if they require a 24-hour urine collection, they’ll take that away as well. So again, it saves me another hospital trip – potentially three appointments sometimes.”
She describes the staff as “amazing – they’re getting used to doing my IVs now.”
She recently had a lump removed in her right arm because it was causing numbness. “Luckily, it was non-cancerous, but the doctors didn’t immediately link it to my condition. 20 years ago, I had two benign parathyroid tumours removed and nobody could make the correlation between MEN1 and these symptoms I was having as genetic testing wasn’t available back then. All this time I had an underlying health issue which I didn’t really know anything about. After I had the recent lump removed and got full movement back in my arm, I was in the gym and dropped an Olympic bar on my chest.”
The doctor suspected something wasn’t right, so referred her to a local endocrinologist who ran some tests. “I’d hit menopause at the same time; a lot the symptoms are similar so this just compounded things. The results showed that I had MEN1. I had nodules on my pancreas and my left lung which is why my back wasn’t healing properly; this was where the pain was coming from rather than my back. These nodules were then biopsied and I was diagnosed with low grade lung cancer and MEN1 on my pancreas, the week after we went into lockdown, so that was quite surreal going into a hospital. I was then given a treatment plan.”
She had been going for her regular treatment to the James Paget for about a year when she noticed a leaflet about the unit on the wall in the nurse’s office. She asked if she could “jump on there for my treatment, and I did.”
It’s an amazing service to have. The team are all great, really efficient, and they’re just so friendly. If we don’t use it, we’ll lose it. I’ve been going on it for nearly two years now.
For her, it’s all about time efficiency. She goes once a month and this means she saves almost a day each time, which is what a visit to hospital used to take. It’s about giving back too: “I do community fitness so when we hold extra sessions, boot camps or charity events, I try and raise money for Hope For Tomorrow. It’s a small charity, so any awareness I can raise myself or money we can raise as a community, we try and do that because smaller charities like this need more help. They’re the ones that provide additional services which need our support, as we need theirs.”
Going to the unit means that Keri, who works full time as a Project Manager for Aviva, can have her treatment and then resume her working day with minimal disruption. It’s just one of the many benefits she is thankful for: “It’s an absolute godsend for me, so I’m eternally grateful it’s there at all.”
It’s an amazing service to have
“I have multiple endocrine neoplasia type 1 (MEN1), a rare genetic condition, which causes tumours which affect my endocrine glands,” explains Keri, 54. “These are usually located in the parathyroid gland, the pancreas, and pituitary gland; the secondary tumours can be anywhere and can be non-benign or cancerous.
“Unfortunately for me, my primary site is my pancreas and the secondary site is my lung, which was found by chance. I was very lucky. It was found just before we went into lockdown, and the course of treatment is management. So far, I haven’t had any surgery to remove anything. I receive lanreotide intravenously once every 28 days, which was being carried out at the James Paget Hospital in Norfolk.”
Keri, who lives near Beccles, where the unit is based, says it would often take her an hour just to get the hospital, also factoring in parking. My appointment now is “literally just ten minutes up the road outside Morrisons.”
“The staff are amazing. They kill two birds with one stone because when I have my monthly drug, they know I’m coming and take it out of the fridge, as it has to be left at room temperature for 20 minutes prior to them administering it. And because they also take my bloods at the same time, it saves me trekking to hospital for this. Also, if they require a 24-hour urine collection, they’ll take that away as well. So again, it saves me another hospital trip – potentially three appointments sometimes.”
She describes the staff as “amazing – they’re getting used to doing my IVs now.”
She recently had a lump removed in her right arm because it was causing numbness. “Luckily, it was non-cancerous, but the doctors didn’t immediately link it to my condition. 20 years ago, I had two benign parathyroid tumours removed and nobody could make the correlation between MEN1 and these symptoms I was having as genetic testing wasn’t available back then. All this time I had an underlying health issue which I didn’t really know anything about. After I had the recent lump removed and got full movement back in my arm, I was in the gym and dropped an Olympic bar on my chest.”
The doctor suspected something wasn’t right, so referred her to a local endocrinologist who ran some tests. “I’d hit menopause at the same time; a lot the symptoms are similar so this just compounded things. The results showed that I had MEN1. I had nodules on my pancreas and my left lung which is why my back wasn’t healing properly; this was where the pain was coming from rather than my back. These nodules were then biopsied and I was diagnosed with low grade lung cancer and MED1 on my pancreas, the week after we went into lockdown, so that was quite surreal going into a hospital. I was then given a treatment plan.”
She had been going for her regular treatment to the James Paget for about a year when she noticed a leaflet about the unit on the wall in the nurse’s office. She asked if she could “jump on there for my treatment, and I did.”
It’s an amazing service to have. The team are all great, really efficient, and they’re just so friendly. If we don’t use it, we’ll lose it. I’ve been going on it for nearly two years now.
For her, it’s all about time efficiency. She goes once a month and this means she saves almost a day each time, which is what a visit to hospital used to take. It’s about giving back too: “I do community fitness so when we hold extra sessions, boot camps or charity events, I try and raise money for Hope For Tomorrow. It’s a small charity, so any awareness I can raise myself or money we can raise as a community, we try and do that because smaller charities like this need more help. They’re the ones that provide additional services which need our support, as we need theirs.”
Going to the unit means that Keri, who works full time as a Project Manager for Aviva, can have her treatment and then resume her working day with minimal disruption. It’s just one of the many benefits she is thankful for: “It’s an absolute godsend for me, so I’m eternally grateful it’s there at all.”
