I may look well, but you can’t see my battles!
As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I’ve travelled and what I have been able to do. It’s more than I thought I’d be able to do, I didn’t expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I’m living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it’s not a flush! No pity please.…
Neuroendocrine Tumours – now you see them, now you don’t!
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" that is most efficientEven 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…
Things to do today
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…
Not every illness is visible
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…
I can see my invisible illness
As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do. It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I'm living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it's not a flush! No pity…
Neuroendocrine Cancer – I didn’t hear it coming
A Neuroendocrine Cancer awareness post by Ronny Allan. 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…
I’m not sick, I just have cancer
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…
I don’t look sick enough, sorry not sorry
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 cancer story is changing, more and more of us are going to come into contact with cancer, either through our own experience…
I look well but you should see my insides
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 are 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 in a Cancer ward. I'm not…
Things are not always how they seem
Graphic courtesy of SoBadAss.me (Sam Cleasby) 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…
Things not to say to someone with cancer
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…
Cancer-related fatigue (CRF) – The NET Effect
In my patient support group of almost 10,000+, 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…
Shame on you!
This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms. Probably long overdue. For the record, I don't have a visible disability, nor do I have access to any special schemes or 'perks' to gain any advantage. I quite like to walk and don't really care how far it is to the building. Now and then I do need short notice access to a toilet facility,…
“Not the Stereotypical picture of sick”
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…