I personally don’t see myself as ‘disabled’ but I do have an invisible illness. I can see it and I don’t necessarily care if others don’t. I’m fit, can walk for miles, I even look quite healthy. However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as ‘disabled’ through government schemes. Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That’s not to say I don’t have any issues at all – because I do!
I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain). Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and this need is now recognised in the availability of toilet facilities (see picture below). This is particularly relevant to my own disease, all types of Inflammatory Bowel Disease (Crohn’s, Ulcerative Colitis) or anyone who has issues due to the consequences of their cancer or treatment (e.g. GI surgery, Chemo, Radiotherapy).
I wrote an earlier blog on this subject called “Things are not always how they seem“. This was a great ‘invisible illness’ awareness message in the form of a reference to a newspaper article about a lady who had Inflammatory Bowel Disease (IBD) and was ridiculed by someone who saw her use a disabled toilet clearly unaware of her invisible illness. This is definitely worth a read!
I also wrote a blog about my own concerns focussing in on the issue of ‘Stomach Cramps’. This is something that causes me issues from time to time and I dread a painful occurrence if I’m ‘out and about’. I generally don’t let Cancer stop me doing stuff. Consequently, I will still visit remote places as I have done so for the last few years and have intentions of continuing to do so in the future. Fortunately, I have been lucky with my experiences to date. If I’m out and about including on holiday, I have no reservations about waltzing into hotels or restaurants where I know there will be toilet facilities. I’ll also use a disabled toilet if others are not vacant. My worst and most painful experience was in 2014 whilst I was walking along Hadrian’s Wall in remote Northern England – this is covered in my blog “My stomach sometimes cramps my style“.
I have not yet been challenged in my use of toilet facilities (without being a customer) but I always carry some ‘Get me out of jail’ cards just in case.
You may also enjoy these similar and related articles:
I can see my invisible illness – click here
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
Things are not always how they seem Part 2 – 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
Please flush after use! – click here
Click here and answer all questions to join my private Facebook group
- Clinical Trials PRRT: From 177Lu to 225Ac: The LM3 Antagonist Journey Toward High‑LET PRRT
Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over… Read more: Clinical Trials PRRT: From 177Lu to 225Ac: The LM3 Antagonist Journey Toward High‑LET PRRT - Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET
Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the… Read more: Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET - SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs
Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the… Read more: SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs - Small tumours – big impact
Many Neuroendocrine Tumours are small. Nor my words but I first discovered the term in 2021 when reading the words of Dr Mark Lewis, Oncologist and NET Patient. He himself, was citing this term referencing back to giants in the world of NETs over many decades. There was a seminal lecture entitled “An Odyssey in… Read more: Small tumours – big impact - The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan
“Invisible cancer” typically refers to malignancies that evade early detection or disguise themselves as other common, non-life-threatening ailments. This term is very frequently associated with Neuroendocrine Tumours which are very often difficult to spot on standard imaging and blood tests. When I was diagnosed, I didn’t even feel ill. It was therefore a bit of… Read more: The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan - Spotlight on Ovarian Neuroendocrine Neoplasms
Disclaimer: The information in this Spotlight is provided for general information and education only. It is not intended to replace the advice of a qualified healthcare professional, nor to be used for diagnosis or treatment of any medical condition. Always discuss your individual situation, symptoms, test results, and treatment options with your own doctor… Read more: Spotlight on Ovarian Neuroendocrine Neoplasms - Ronny Allan’s Newsletter covering May 2026
Just back from holiday thus why the late publication! Summary of May 2026 on RonnyAllan.NET I think the main story of May is similar to March and April which was a strong blog performance. Other key targets met were the two main primary NET types (small intestine and pancreas) and one not so common(thymus) have finally been… Read more: Ronny Allan’s Newsletter covering May 2026 - Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Introduction: What Are Fat‑Soluble Vitamins? Fat‑soluble vitamins — A, D, E and K — are nutrients that can only be absorbed when dietary fat is digested properly. They… Read more: Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate) - Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)
🟧A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information about Vitamin E. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion or absorption. Always consult your medical team before making changes to supplements or nutrition. What is Vitamin E? Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols) - Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)
Disclaimer: This Spotlight provides general educational information about Vitamin A. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or liver function. Always consult your medical team before making changes to supplements or nutrition. 🟧A general‑population overview with NET‑specific considerations where relevant. What is Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol) - 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Two hundred injections. It’s a milestone that carries weight — not because of the number itself, but because of what it represents: continuity, stability, and the lived reality of managing Neuroendocrine Cancer over the long term. Lanreotide has been part of my life… Read more: 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones) - A spotlight on Colon Neuroendocrine Neoplasms
Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing… Read more: A spotlight on Colon Neuroendocrine Neoplasms - Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team,… Read more: Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) - An unmissable update from Ronny Allan covering April 2026
A monthly update not to miss……..Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance. Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the… Read more: An unmissable update from Ronny Allan covering April 2026 - Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or… Read more: Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs) - A Spotlight on Pancreatic Neuroendocrine Neoplasms
DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with… Read more: A Spotlight on Pancreatic Neuroendocrine Neoplasms - Neuroendocrine Cancer in UK – a growing crisis?
I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several… Read more: Neuroendocrine Cancer in UK – a growing crisis? - Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Bone metastases in neuroendocrine tumours (NETs) vary widely in behaviour, appearance, and clinical significance. Decisions about systemic therapy, radiotherapy, ablation, bone‑targeted agents, surgery, or monitoring must be made by your own specialist NET team, who understand… Read more: Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts sent to your email.
What a good idea! My symptoms are completely under control for the time being, but how well I remember the terrible stomach cramps that I experienced before diagnosis. Of course, it never happened at convenient moments. The absolute worst episodes I experienced happened when we were touring a cave in Vietnam’s HaLong Bay and while on a shore excursion when cruising down China’s Yangtze River!
Yes, I’ve seen your travelling blogs. I guess even those without NETS might struggle in certain places!
Great Idea!