Invisible illness – Ronny Allan – Living with Neuroendocrine Cancer

08Aug 2021 by Ronny Allan 1 Comment

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

In my patient support group of 7000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis. That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…

09Feb 2021 by Ronny Allan 4 Comments

Neuroendocrine Cancer – I didn’t hear it coming

Awareness

The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed statistics, but few take a wide enough view to get the full spectrum of patient experience. I accept that in some cases, it can be a little bit noisy via oversecretion of hormones causing hormonal syndromes, and this…

15Dec 2020 by Ronny Allan No Comments

Neuroendocrine Tumours – now you see them, now you don’t!

Treatment

In my post entitled "If you can see it, you can detect it", I listed the different types of scanning techniques and technology to find evidence of disease in Neuroendocrine Tumours (NETs). Of course, while scans, blood and (current) marker tests can give some pretty big and important clues, "tissue is the issue" to determine type.Even after formal diagnosis, seeing all the tumours can be a challenge with NETs. In the article I quoted above, I indicated that scans for NETs can be analogous to picking 'horses for courses'. For example, most NETs have somatostatin receptors and can often be seen better on functional scans e.g. somatostatin receptor scintigraphy (SRS) or somatostatin receptor PET (SSTR-PET), combined with the use of radionuclides designed specifically for this purpose e.g. In111, Tc99m, Ga68,…

16Sep 2020 by Ronny Allan 1 Comment

I don’t look sick enough, sorry not sorry.

Inspiration

Despite earlier diagnoses via more technology and screening, many people have a perception about people with cancer, it includes many things including but not limited to, lack of hair, ill in bed and being infused regularly with chemotherapy. Another perception is they die. All of that is clearly terrible but it's not the norm. Many people live with cancer, many people with cancer go to work many people go on holiday, many people with cancer do normal stuff. The crazy thing about this perception is that the cancer story is changing, more and more of us are going to come into contact with cancer, either through our own experience or the experience of a close relative or friend. We live longer nowadays and as cancer is essentially (but not always)…

18Apr 2019 by Ronny Allan 6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight,…

18Feb 2018 by Ronny Allan 14 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!Of course, sometimes you have little choice if you're ill from your condition or something routine.So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable!Take a break if you need one. Click here to join my private Facebook group Subscribe to…

15Jan 2018 by Ronny Allan 11 Comments

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I don't look ill. I didn't even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer. People have even told me I look better than many people my age who do not have an incurable disease! There's a bit of me which is very happy with that predicament, although I'd rather look less good and not have cancer.Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don't look ill but I know they have a life-threatening disease and things could change quickly. For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful. Some just need…

16Jun 2017 by Ronny Allan No Comments

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Ronny Allan's 'PoNETry' © series can be shared with poetry credit to:RonnyAllan.NETThanks for readingRonnyI also have one about Lanreotide (or "butt darts" in general) - click here Click here to join my private Facebook group Subscribe to my newsletter Email address First name (Optional) Last name (Optional) By subscribing, you agree with Revue’s Terms of Service and Privacy Policy. Thanks for reading.RonnyI’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’Sign up for my newsletters - Click HereDisclaimerMy Diagnosis and Treatment HistoryFollow me on twitterCheck out my online presentationsCheck out my WEGO Health AwardsRemember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!Please Share this post…

02Feb 2017 by Ronny Allan 4 Comments

Things not to say to someone with cancer

Inspiration, Survivorship

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…

19Sep 2016 by Ronny Allan 5 Comments

“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others? I like to look for the positive things these well-meaning messages can convey. Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell? If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides". Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the 'perfect picture of health'. She…

08Aug 2016 by Ronny Allan 3 Comments

Not every illness is visible

Awareness, Living with Neuroendocrine Cancer, Survivorship

I personally don't see myself as 'disabled' but I do have an invisible illness. 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! [caption id="attachment_13469" align="aligncenter" width="720"] Situation normal, right?[/caption] 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…

11Aug 2015 by Ronny Allan 27 Comments

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away. I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can see is people who don't look as well as I do. Some have hats or bandanas partly disguising the loss of hair. I feel for them.No matter how many visits I make, I can't help feeling out of place on a Cancer ward. I'm not sure why I feel like this; after all, I've had some very scary surgery and I've been having treatment since 2010. However, this thought doesn't seem to balance it out - some of these…

06Mar 2015 by Ronny Allan 10 Comments

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship

In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border. It was a fantastic experience, and we met some really interesting people on our 6-day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet. I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what was going on inside their heads and bodies.Visible Illness can have awareness benefitsConversely in 2018, I was absolutely humbled when I met a…