Supporting the

Neuroendocrine Cancer Community

Name: Sally

Neuroendocrine Cancer Site: Caecum

Sally’s Story:

After feeling so tired and struggling with hot flushes for many years, I went to see my doctor. I virtually collapsed on his desk. So we started all the necessary tests, there seemed so many, some not pleasant.

Eventually my daughter and I went to see a specialist, who we had not met before and was told I had a carcinoma in my caecum. We both nearly fell off our chairs at this news, as apart from tiredness I didn’t feel ill.. I don’t remember much about what was said but just walked out of the hospital. I was in shock for quite a while, walked around like a zombie.

My doctor was so kind and understanding as he explained everything to me, and told me I would be on Lanreotide every month for the rest of my life. No surgery as it was Stage 4 and my liver was covered in tumours with no hope of eradication.

I had retired one year before and was planning my life. Wow was I shocked, angry and so tearful, cried for weeks. Still denying it after 3 years. 12th November 2018 my father’s birthday.

I live on my own and have two sons and a daughter. My fourth child died at 18 months old. My daughter lives near by but one son lives abroad and the other in North London. We all keep in touch.
I continue to have treatment every month, sometimes I feel good but other times so low and just feel unwell.

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

  • Because of covid I have been shut down for such a long time only going out for treatment.  It makes me feel very down and not motivated, so am struggling. I used to attend a hospice as a day patient but it is closed for the present. I would so like to talk to someone in a similar position as I find it hard to tell or talk to my friends. I am afraid they will desert me. Only 3 friends know.
  • I don’t know who my health team are except my specialist.
  • I have my injections at my local hospital as I don’t fancy doing them myself.
  • I have been abroad twice since my prognosis to visit my son, once in Germany and once in France. I took the injections with me and a local nurse would administer them. They came to my sons house, such excellent service and very kind.
  • It has taken all these years to find out about neuroendocrine. I wish they had told me all about this at the beginning. I have also found ways of lessening the injection ‘pain’ by experimenting with different creams etc. I am told that the cancer is being ‘held’ at the moment.

 

Should you be in a similar situation as Sally, you can find support here:

  • Talk to us – Speak confidentially with our support services team for information and support, or request to talk to a counsellor.
  • Support groups – Our ‘Natter’ Support Groups are community based local, regional and/or national online meetings that offer an opportunity to meet others also affected by Neuroendocrine Cancer; you, your family, friends and supporters, to share experiences, make friends and create a supportive network.
  • Join our Facebook groups – Our Facebook groups are private groups and have been established to provide a safe place for those affected by Neuroendocrine Cancer to chat, talk and help each other by sharing experiences and knowledge, to both give and receive advice, support and friendship.
  • Finding ways to cope and looking after your emotional wellbeing.