Lisa, Patient

By: Leanne Talbot

Posted on: 5 years ago

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

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Name: Lisa

Age: 51

Neuroendocrine Cancer site(s): Primary is unknown and metastasis to the Liver.

Lisa’s Story:

Hi, my name is Lisa. I married to Stu and have a wonderful son Adam who is 19 years old and suffers from Autism. I love baking, walking and Angel Card Reading.

13 years ago, I was diagnosed with Kidney cancer Grade 3. I had my kidney removed with lymph nodes and surrounding tissue.
I was clear on all my check ups following the op.

Fast forward to April 2019 and after a routine CT scan on pain I was getting in my right side I had multiple scans – CT, MRI, Gallium 68 Scan, Bone, Scan, Endoscopy, Colonoscopy and 2 liver biopsies I was eventually diagnosed with NETS after they first thought it was Pancreatic Cancer. They found 3 tumours on my liver. They started me on Sandostatin Injections every 28 days. I was also put forward for surgery and on November 6th 2019, I underwent huge surgery to remove 75% of my Liver. I spent 3 nights in Intensive care and after that I was moved to the general ward and spent 7 nights on the ward.

Due to the nature of the operation, how long I had been under anaesthesia and morphine, I suffered from Post Delirium Hallucinations. They were all so terrifying, so realistic to me. I kept trying to go home, pulling all my tubes out. I even thought it was all part of a Darren Brown Show at one time and all my family and staff were in on the joke and I threatened to Divorce my family lol. I can laugh now but it was terrifying at the time.

I went home with a drain which I had in for 2 weeks. I was off work for 3 months.

Because I had 2 different cancers they decided to do genetic testing to see if it was something in my genes which was not right. Luckily this came back clear.

I recovered well at home with the help of my lovely family and friends, but in March 2020 I developed 2 incisional hernias. I was put on a waiting list for another operation. Then Covid hit. It is now April 2021. I am still waiting for my operation and my 2 incisional hernias are now huge and cause me great discomfort, sometimes causing excruciating pain and stopping me doing things on a daily basis. The hospital say it could be June or July before I hear a date for the op. Which I know can’t be helped and The hospital and staff have been amazing during my diagnosis, operation and care.

During Covid it has been extremely hard, having to cope with what I am going through, my son’s OCD has gone through the roof since the pandemic started and my husband suffers from severe anxiety and at times he has had meltdowns over the virus and the risks. It has been horrendous at times.

During Covid, I have kept going and learnt how to do Angel Card Readings and I am now Certified. I have done an online Psychic Development Course and gained a Distinction pass Diploma. I have also done Reiki Level 1, 2 and Master Level and also gained a Diploma pass for these courses with Distinction. I absolutely love card reading and I love to meditate. I have found this so helpful during everything I have been through.

This site has been so helpful in guidance, advice and has put me in touch with some wonderful people on their Facebook page. Thank you so much.

I am plodding on and I have such wonderful care, help and support from Medical Staff, NCUK, family and friends. I am very lucky.
Love and Light to all. X

Do you have any useful hints and tips that you would like to share?

Having supportive family and friends is a must and I couldn’t have gotten through what I have been through without them.
I also find Meditation so good at helping me to relax. During Covid my husband has learnt how to give me my injections. He is doing very well bless him.

Have you used any of the NCUK’s services, if so which? and how have you found them helpful?

I have looked up information on NETS on the site and also chat regularly to people on the Facebook page. The NCUK have been a godsend. Thank you x

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

Do you have a story to share?

Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

Share your story
Share your story

We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


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