02Feb 2017 by Ronny Allan 4 Comments

Ronny Allan

Award winning Neuroendocrine Cancer Patient Advocate. Diagnosed with Metastatic Neuroendocrine Cancer in 2010.

This topic comes up regularly on patient forums, twitter, Facebook….. in fact everywhere! Personally, I don’t tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It’s really difficult to know what to say, knowing how they might react and it’s particularly difficult if you don’t really know the person, for example on social media, you could be talking to someone who you have never met, you don’t know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator, will know it’s not perfect!).

I’ve dabbled in this arena before with my blogs “I look well but you should see my insides” and “You must be doing OK, you’ve not had chemotherapy”.

This video was produced by BBC and shared by my friends in Macmillan Cancer Support, and it’s getting a huge number of comments and opinions. Someone suggested it should have been entitled “Things to say to someone with cancer” and there’s something in that I guess – although I suspect it’s just as difficult!

Personally, I think there’s no right or wrong answer. However, I know a lot of you guys will enjoy the video

Thanks for reading

You may also enjoy these similar and related articles:

Things not to say to a cancer patient – click here

Shame on you! – click here

I look well but you should see my insides – click here

Things are not always how they seem – click here

Not every illness is visible – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

I don’t look sick, sorry not sorry – click here

Dear Doctors – there’s no such thing as a good cancer – click here

You must be doing OK; you’ve not had chemotherapy – click here

Check out my Glossary of Terms – click here

Please Share this post for Neuroendocrine Cancer awareness and to help another patient

My 12 lockdown episodes

In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self-isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self-isolation period, the government ordered a “lock-down” (a bit like the shelter-in-place term used in USA) but out of self-isolation, we were still allowed out for some exercise and other essential trips such as doctors’ appointments and shopping for essential items.

The second update is a nice walk to a local beauty spot and back.

The third update is a potpourri of events including hair issues, a broken tooth and my first COVID lockdown injection covering 14/15 Apr 2020.

The fourth update is a story of bikes, ponies, wisteria and Vitamin D covering 16th – 21st Apr 2020.

The fifth update is a story of greenery, sun, adventure and Irrfan

The sixth update is a story of footpath etiquette, sheep, donkeys and dopamine covering 30th Apr – 3rd May 2020.

The seventh update is a story of swans, cycling, VE Day and my 124th monthly cancer treatment covering the period 6th – 11th May 2020.

The eighth update is a story of nurses, trees and Canada covering the period 12th – 17th May 2020.

The ninth update is a story of cream teas, peaks and blue sky covering the period 18th – 23rd May 2020.

The tenth update is a story of the Wall, Swans, Dundee and New Forest History, covering the period 26th – 29th May 2020.

The eleventh update is a story of Walking the Wall, coping strategies and the London Ga68 PET, covering the period 30th May – 5th June 2020.

The twelfth update is a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’, covering the period 7th – 15th June 2020.

A

B

C

D

E

F

G

H

I

J

K

L

M

N

O

P

Q

R

S

T

U

V

W

X

Y

Z

#

4 thoughts on “Things not to say to someone with cancer”

beth

HI.. My mother was diagnosed with NET of the rectum in 10/2017. She had chemo and radiation and she was able to have surgery and a permanent colostomy. She did really good for about 4 months. We found out it moved to the liver. She did chemo again and was going to have the tumors removed from the liver but was unable to due to too many small ones when the surgeon saw the liver. She does have lesions on the spine and hip bone now and we just found out a small lesion to the brain. She is in the hospital with weight loss, memory problems, and weakness. She had a recent fall and broke her pelvis bone. This moves very fast and it’s just been a little over a year. I am very worried now and would like some answers about maybe how long I have left with my mother. I would like to plan some fun things for her if she has the strength…Thank you…Beth

https://polldaddy.com/js/rating/rating.js

Loading...

March 15, 2018 at 15:00
- Ronny Allan
  
  So sorry to hear about your mother. It’s very difficult for me to answer that question. I’m not a doctor. It’s actually quite difficult for a doctor but that would be my advice if you wanted the most accurate attempt. The grade of the tumour is important when looking at these things. Do fun things with her now, it might help see her through this difficlt period. Ask your doctors about PRRT (Lutathera), it might help. Thinking of you guys today.
  
  Loading...
  
  March 15, 2018 at 17:19
Sue Collins

Hi Ronnie. I’m freaked out at the moment! It s thought I have NET mets I my eye!!! Ever heard of it. By the way I live in Canberra Australia.

Loading...

March 18, 2017 at 02:18
- Ronny Allan
  
  Sorry to hear that Sue. I have had at least one person contact me around 1-2 years ago. It is an unusual place but I can see case studies of it online. Firstly impression of the case studies is that it is treatable. Do you have a NET experienced doctor? Just out of curiosity, where is your primary and other metastasis?
  
  Loading...
  
  March 18, 2017 at 08:07