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 for almost 8 years 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!
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 a place to administer medicine when they need it, often this occurs in the most inconvenient places. There are many other ‘invisible’ problems that might strike at any moment.
Some patients actually avoid going on long journeys (or even short journeys), some avoid social activities and simply remain at home because their illness is unpredictable – they become very risk averse. And they look really well! And it’s terrible they feel they need to do this.
I know some patients who are classed as ‘disabled’ because of their condition (I’ll use the word ‘disabled’ as a generic term because the terminology differs from country to country). I guess some of them don’t look disabled (in terms of people’s perceptions) and on the outside look pretty well. Many people assume that ‘disabled’ means you have some physical deformity which is wrong when you look at various health criteria worldwide. Within these systems, there is also the possibility of a ‘disabled car parking permit’ (again a generic term as it might be called something different where you live).
On the subject of car parking, there are huge campaigns in UK about car parking charges for cancer patients. Many hospital car parks are on ‘private land’ and fees are levied. I’m not classed as disabled, I wouldn’t meet the criteria. However, I’m a frequent visitor to hospitals for tests/treatments and appointments. I’ve spent a considerable amount of money on hospital car parking in the last 7 years. The hospital I attend only provides free parking for cancer patients who are undergoing treatment (something I didn’t know for the first 4 years of my treatment). So if I’m attending for blood tests, scans or appointments, there is no entitlement for free parking. A couple of years ago, I met with my local hospital about car parking for cancer patients and was delighted to obtain a free pass when I explained the sheer number of visits I was making adding that it was probably for the rest of my life. I’m due to meet them soon to enquire about further plans to extend the current ‘treatment only’ benefit for cancer patients. If you google this issue, you will see plenty of comment! I guess these issues are pretty common worldwide with some countries faring better than others. That’s to be expected.
However, what is totally unexpected is this story which I will now lay out. It’s a reminder that you have no idea what’s going on in people’s lives.
Lexi Baskin is a cancer patient and was attending her hospital to have radiotherapy, and has a ‘tag’ for parking as she is prone to side effects as a result of her cancer. She was legally parked in a disabled parking slot and returning to her car in Oct 2017, she found it covered in stickers – see here:
I guess that made her very upset. It makes me upset just looking at these pictures from afar. Lexi posted her story on social media and on twitter, her tweet went viral and so far, has been liked over 100,000 times and she is heading for 50,000 retweets (shares). Great awareness for invisible illness and the issues of car parking and perceptions. It even made the press – see below:
So, to whoever committed this cruel act – SHAME ON YOU! – you are a selfish and terrible person.
You may also enjoy these similarly related articles:
I look well but you should see my insides – click here
There’s a lot of inaccurate and out of date information out there. Some of it is propaganda but most is a combination of misunderstanding and patient forum myth spreading …….
Myth 1: All Neuroendocrine Tumours are benign
Not true. By any scientific definition, the word ‘tumour’ means ‘an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)’. Sure, some NETs will be benign. However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential. This has been reinforced in the 2017 update to include clarification for other endocrine organ types of NET including Pheochromocytoma. Read more here. The word ‘Carcinoid’ is inextricably linked with this issue – read here why we need to stop using the term to help fight the benign myth.
Myth 2: Neuroendocrine Tumours is a terminal condition
Not true. By any definition of the word terminal in a medical diagnostic context, most NET patients have a good prognostic outlook, even those with metastatic and incurable variants of the disease. Read more here.
Myth 3: Carcinoid is another word for Neuroendocrine Tumours
Not true. Carcinoid is a very old term and was phased out years ago. Carcinoid is not mentioned in the latest WHO Classification schemes for Neuroendocrine Neoplasms (a term covering Neuroendocrine Tumours and Neuroendocrine Carcinoma). Unfortunately, the problem is exacerbated by organisations and individuals who still use the word. Also, those who use the following terms:
“Carcinoid and Neuroendocrine”,
“Neuroendocrine and Carcinoid”,
“Carcinoid NETs” or “CNET”
These are all contextually incorrect and misleading terms (not to mention the bad grammar). ENETS, NANETS and NCCN publications are gradually phasing the word out except in relation to Carcinoid Syndrome (and even then there could be easy solutions for this). Read more here and here.
Myth 4: All NET patients get ‘carcinoid syndrome’
Not true. Firstly, many NET cancers are non-functional; and secondly, carcinoid syndrome is only one of a number of “NET Syndromes” associated with the various types of NET. However, the issue is further confused by those who use the word ‘Carcinoid‘ to incorrectly refer to all NETs and use Carcinoid Syndrome to refer to all NET Syndromes. Read more here.
Not true. Steve Jobs had a Neuroendocrine Tumour of the Pancreas. Ditto for a few other famous names. Read more here.
Myth 7: I’m not getting chemotherapy, I must be doing OK?
Not true. For some cancers or some sub-types of cancers, although it remains an option, chemotherapy is not particularly effective, e.g. some types of Neuroendocrine Cancer (NETs). In general, well differentiated NETs do not normally show a high degree of sensitivity to chemotherapy, although some primary locations fare better than others. However, many of the treatments for NET Cancer are somewhat harsh, have long-term consequences, and have no visible effects. NET patients are often said to “look well” but that doesn’t mean they are not struggling behind the scenes or under the surface. Read more here. P.S. Afinitor (Everolimus), Sutent (Sunitinib) are not chemo – Read more here.
Myth 8: All diarrhea is caused by carcinoid syndrome
Not true. It could be one of the other syndromes or tumor types or a side effect of your treatment. Check out this post.
Myth 9: Neuroendocrine Tumours is a ‘good cancer’
Not true. Simply, no cancer is good. Some are statistically worse than others in prognostic terms, that’s true…… but living with NETs is very often not a walk in the park. However, no one cancer is better to get than any other – they’re all bad. Read more here.
Myth 10: Every NET Patient was misdiagnosed for years
Not true. Many NET Patients are correctly diagnosed early on in their investigation and in a reasonable time. This myth is perpetuated because of two things: firstly, on forums, the ratio of long-term misdiagnosis is high creating a false perception; and secondly, the method of capturing patient surveys is not extensive enough – again creating a false perception. In fact, the latest and largest database analysis from US indicates earlier diagnosis is improving, with more and more NETs being picked up at an early stage. Read more here.
Myth 11: Somatostatin Analogues are a type of Chemotherapy
Not true. Somatostatin Analogues (e.g. Octreotide and Lanreotide) are not chemotherapy, they are hormone inhibiting drugs. They are more biotherapy. As the drugs latch onto somatostatin receptors, they are more targeted than systemic. For the record, Everolimus (Afinitor) and Sunitinib (Sutent) are not chemotherapy either. Read more here.
Myth 12: Stuart Scott (ESPN) and Audrey Hepburn had Neuroendocrine Cancer.
Not true. This is a common misunderstanding within the community. They both had Pseudomyxoma Peritonei (PMP). Read more about PMP here.
Myth 13: I’ve been diagnosed with Neuroendocrine Tumours – my life is over
Not true. Many patients live a very long time and lead fairly normal lives with the right treatment and support. It’s difficult but I try not to use ‘I can’t’ too much. Read more here.
Myth 14: There are only a handful of Neuroendocrine specialists in the world
Not true. There are many specialists in many countries. Get links to specialists by clicking here.
Myth 15: The Ga68 PET scan is replacing the CT and MRI scan in routine surveillance for all NET Patients
Not true. It is actually replacing the Octreotide Scan for particular purposes, or will eventually. Read more by clicking here.
Myth 16: All NET Patients are Zebras
Not true. They are in fact human beings and we should treat them as such. Please don’t call me a zebra and please don’t use the term on my social media sites, I refuse to perpetuate this outdated dogma.
Myth 17: Multiple Endocrine Neoplasia (MEN) is a type of Neuroendocrine Tumour
Not true. Multiple Endocrine Neoplasia are syndromes and inherited disorders. You can have MEN and not have any tumours. However, these disorders can put people at more risk of developing Neuroendocrine or Endocrine Tumours. Read morehere
Myth 18: Palliative Care means end of life or hospice care
Not true. Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease. Read more here
Myth 19: Serotonin is found in foods
Not true. Serotonin is manufactured in the body. Read more here
Myth 20: NETs cannot be cured
Not true. If caught early enough, some NETs can be treated with curative intent (totally resected) with little or no further follow up. It says this in ENETS and NANETS publications which are authored by our top specialists. If we can’t believe them, who can we believe? Read more here.
Myth 21: Pancreatic Enzyme Replacement Therapy (Creon etc) is only for pancreatic patients
Not true. It’s for any patient who is exhibiting exocrine pancreatic insufficiency. Read more here.
More to follow no doubt
For general cancer myths and the dangers of fake health news, please see my ARTICLE HERE
Thanks for reading
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Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn’t really something I thought much about and for minor things, I would just “soldier on.” So, from an early age, I truly believed a “poker face” was necessary for “street cred” but I guess that was ingrained in the military mindset.
Even out of the military environment, old habits die hard as I adopted the same attitude. The “mission” comes first and my health second. A few “civilians” once suggested I go home after coughing, sniffing and sneezing my way through a day in the office. I responded in the only way I knew by saying I would only be leaving the office early on a stretcher having lost consciousness. To get them off my back, I made sure there was no hint of banter or joviality in the statement. This tactic didn’t really work and they laughed at something they perceived as a joke. However, little did they know, I was deadly serious. Little did I know, my gung-ho attitude and poker face were to become seriously deadly.
In 2010, along came cancer. For a couple of years before diagnosis, I had not been sufficiently focused on my health and soldiered on, ignoring what I now know to be key symptoms of neuroendocrine cancer. Even leading up to diagnosis, I was dismissive, refusing to acknowledge this was a threat. Other people get cancer, but not me! I even landed in the hospital via the ER as I refused to slow down after a biopsy. Still in denial, I thought I could beat cancer not knowing that cancer knew with 100 percent certainty that it could beat me. I went on to have surgery and other treatments, but apart from that, I basically marched on as it nothing had happened. However, as the effects of cancer and the consequences of the treatment started to bite, I accelerated my learning on how the disease might affect me in the future. This knowledge has enabled me to manage risk and make better assessment/decisions about seeking help. But it took a while, and gradually over a period of three years, I shifted the focus from work to health.
It’s not been easy to learn how to live with my incurable disease since diagnosis. Finding a balance between how I want to live and how to stay alive has been difficult. My “stiff upper lip” combined with an appetite for work didn’t really help in the end. In 2013 (three years after diagnosis), I finally found the time to work on the reasons for fatigue and many other symptoms. I made some really good improvements to my quality of life. I still have issues, but my cards are no longer close to my chest – they’re now more frequently on the table, particularly when speaking to doctors and close family. My poker face is still there for special occasions, just more relaxed!
“It’s the cancer,” can sometimes be the most convenient excuse to not do stuff. I can play the “cancer card” as well as the next person, and it will trump all others! I also understand that motivation can be difficult with a chronic illness. However, I don’t want to fall into the trap of doing nothing all the time. That’s not a good outcome. Consequently, I try not to use the metaphorical cancer card too much. In fact, I sometimes even say “I can” when I actually feel like playing the cancer card. I’m nearly always glad I did.
If there’s a word which is synonymous with cancer, it’s chemotherapy. It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘.
I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear I hadn’t had it despite my widespread disease. Cue – lengthy explanation! I wasn’t annoyed by the question, I just think people automatically assume every cancer patient has to undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.
Sure, chemotherapy is not the nicest treatment to receive and it does have pretty awful side effects for most. I watched my daughter-in-law go through 3 or 4 months of this treatment where she was literally confined to a combination of her bedroom and her bathroom. And it did shock me to see her without hair. I would never want anyone to go through that and it really brings it home when it happens to a close member of your family.
Despite its bad press in regards toxicity and it’s awful side effects, chemotherapy is widely used in many cancers. Statistics show that it does work for many patients (….. my daughter-in-law is still here looking after two of my four grandsons and my son still has a wife ♥). However, I suspect it has a limited future as more efficient and less toxic drugs and delivery systems come online downstream. Immunotherapy is often touted as a replacement for chemotherapy but this may be a while yet. So for now, millions of cancer patients worldwide will continue to be prescribed chemotherapy as part of their treatment regime.
However, for some cancers, chemotherapy is not particularly effective. Neuroendocrine Cancer (NETs) is one such cancer. In general, NETs do not show a high degree of sensitivity to chemotherapy. For example, it’s often inadequate for the treatment of well-differentiated tumours with a low proliferation index but can be more effective in particular anatomical locations. The one exception is for high grade tumours (known as Neuroendocrine Carcinoma if poorly differentiated) where chemotherapy is much more likely to feature. I’m not saying that the lower grades will never receive chemotherapy – that door is always left open for those with progressive cancer who perhaps have run out of treatment options. Putting Grade 3 to one side, I’ve heard people say that NETs is the ‘good‘ cancer or the ‘good looking’ cancer often citing the chemotherapy thing as some justification. That is of course a stupid thing to say. I accept that not everyone will lose their hair and not every chemo will cause hair loss.
Here’s the rub. Many other treatments come with pretty challenging side effects. Moreover, the side effects and the consequences of these other treatments can last for some time, and for many, a lifetime. For example with NETs:
Surgery can be pretty extensive, in some cases radical and life changing. Many cancer patients receive surgery for NETs which is still the only real ‘curative’ treatment, although for most, it’s cytoreductive or palliative in nature. If you lose bits of your small intestine, large intestine, liver, spleen, cecum and appendix, gallbladder, stomach, rectum, lungs, pancreas, thyroid, parathyroids, pituitary gland, adrenal gland, thymus gland, ovaries, oesophagus (…….I could go on), this comes with various side effects which can present some quality of life issues. There can be huge consequences of having this treatment.
Other ‘consequences’ of cancer surgery include (but are not limited to), pulmonary emboli (blood clots), lymphedema, short bowel syndrome, gastrointestinal malabsorption, diabetes.
Somatostatin Analogues do a great job but they do add to some of the effects of surgery (mainly malabsorption).
Even the so-called ‘silver bullet’ treatment Peptide Receptor Radio Nuclide Therapy (PRRT) can have pretty severe side effects and presents some risk to kidneys and bone marrow as a long term consequence.
I’ve not had chemotherapy and I would rather avoid it if I can. However, as I’ve hinted above, there are other harsh (….perhaps harsher?) treatments out there. Moreover, whilst hair normally grows back, your small intestines, lungs and pancreas won’t. Many people will have to live for the rest of their life with the consequences of their cancer and its treatment.
It sometimes appears that every other cancer article involves someone undergoing chemotherapy. I just wish someone would write an article about my lack of terminal ileum and ascending colon, the malabsorption issues as a consequence of that, my missing mesenteric lymph nodes, my retroperitoneal fibrosis, not forgetting to mention my diseased liver, my left axillary lymph nodes (and the mild lymphedema I now have after their removal), my left supraclavicular lymph nodes, my suspect thyroid lesion and my hypothyroidism which may be due to that, my small lung nodule and my pulmonary emboli which after nearly 6 years of daily injections means my abdomen looks and feels like I’ve done 12 rounds with Mike Tyson. However, it just wouldn’t be a good picture nor would it be as powerful as one of a person with no hair. Just saying!
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 did it in such a way that I could never do and I guess she feels the same way about looking well on the surface. This is a lady who has a very rare disease and struggles with enormous amounts of pain. However, you wouldn’t think it to look at her. I think her messages are really worth listening to.
If you can’t see an illness, is an illness really there?
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!
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. I have two, one from NET Patient Foundationand one from Macmillan Cancer Support. You can order these online (links given) and I’m sure other national advocate organisations do similar things.
I applaud Asda for their initiative. Lets hope it catches on anytime soon!
One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people’s interest.
In the last 36 months, I’ve generated a few ‘different’ awareness campaigns, some of which have been more successful than others and I learn from this. One of them is actually now the most tweeted post about NETs on twitter. Fortunately, I have had significant help from YOU because if you did not share my posts and blogs, they would not have the potential reach they currently do and would not, therefore, attract the new audiences I’m looking for (….and finding!). The same applies to Facebook, twitter and other parts of the social media universe. I thank you all for the help to date. However, the job is far from finished!
My main campaigns are listed here so please help yourself to the ones you like and feel free to support or sponsor. Please note there are social media sharing buttons at the bottom of each post – or just simple cut and paste as required.
Neuroendocrine Cancer would love you to ignore this post. This is a reverse psychology message which is designed to attract attention – and it does!. It is currently the most tweeted post in the history of NET Cancer awareness. If you are on twitter, please retweet the original post (quoting it in a new post is also great but please also retweet the original). The tweet can be found by clicking here. It’s also a great awareness post for any type of social media so please share as it gives a really simple and yet compelling awareness message about the danger of NET Cancer and ignoring symptoms, including after diagnosis. Click here then share.
Living with Neuroendocrine Cancer – it takes guts! This is a powerful message which lets people know what effects the consequences of Neuroendocrine Cancer and its treatment have on people’s lives. It’s not a pity party – I don’t do those (as you well know).
I also emphasise that it’s not all about diagnostic difficulties (as important as that might be), more focus needs to be placed on LIVING with NETs given that it is a highly prevalent cancer, and no longer rare.
The diagnostic angle was relevant 10 years ago but the focus needs to become much wider thus why the community needs to shift from the ‘same old same old’ to a ‘different new’. This post has attracted much interest from new audiences in the wider healthcare world. Read and share it by clicking here
Neuroendocrine Cancer – ssh! Can you hear it? This is the NETs is ‘silent’ theme and attracts a lot of support. This really drives home the devious nature of NETs, the fact that it can be a very silent cancer until it’s too late and the difficulties that it presents with accurate diagnoses and subsequent ongoing monitoring. The post can be found by clicking here
The Human Anatomy of Neuroendocrine Cancer. This is a campaign to point out that NET Cancer is not confined to a particular part of the body and raises the issue of misdiagnosis, incorrect naming and recording of cancer types; and the loss of awareness opportunities, particularly when famous people are involved. I never get fed up of sharing this one and it cannot be shared too many times! Please feel free to share the hell out of this one. The post can be found by clicking here
This is an awareness message to emphasize that there are a number of different syndromes involved in NETs in different parts of the body and that terminology and understanding is important to get the awareness messages right. Click here.
Every day is NET Cancer Day. This post has had the largest number of 5 star ratings input by readers indicating support for my awareness strategy. Don’t get me wrong, 10 Nov is special but the other 364 days also present awareness opportunities. You can read this blog by clicking here. You can also register for my NET Cancer Day Social Media Event leading up to 10 Nov by clicking here and select ‘Going’ (then invite others please). On this event, Every Day is NET Cancer Day!
Let’s raise our ‘sites’. This awareness message also emphasizes the anatomy of NETs and the importance of the correct terminology in order to get the optimum and accurate awareness messages over. I’m using the word ‘sites’ as a take on ‘sights’ – someone picked me up for spelling last time I posted! Click here to read.
The 9 posts above comprise around 20% of my total blog hits and these are the ones which are attracting new audiences who now know about Neuroendocrine Cancer and are telling others. Please help me build on this.
Neuroendocrine Cancer can be silent but we shouldn’t be!
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’m still being treated after 7 years. However, this thought doesn’t seem to balance it out – some of these people may also have had surgery and are now having adjuvant (follow on) chemotherapy to get rid of remaining cells. Others could be heading for surgery after their neoadjuvant chemotherapy treatment reduces the tumour bulk.
But isn’t that the same as me having 2 months of somatostatin analogue treatment plus a liver embolization in preparation for my surgery? Perhaps the same principle but somehow this still doesn’t seem to balance out as some of these guys may have been undergoing palliative treatment just to extend life. But shouldn’t administration of somatostatin analogues be considered palliative in the brave new world of ‘incurable but treatable’? Or indeed biological therapies such as Everolimus (Afinitor) or Sunitinib (Sutent) or even radionuclide therapies such as PRRT?
I guess there’s just something conspicuous about chemotherapy and its side effects that aligns with most people’s view of a standard cancer treatment regime. People automatically assume you get chemo for any cancer and I have been asked by one or two people why I’m not getting it! I must be doing OK as I’ve not had it!
I think the perceptions of cancer patients can be somewhat stereotyped and people generally expect to see ill and poorly people when they see people with cancer – both at the point of diagnosis and during treatment. That said, some cancers can be as invisible after the treatment as they were before diagnosis. I have metastatic and incurable Neuroendocrine Cancer but I looked well at diagnosis and I look well today. That said, I wish all those people I saw today well and hope they all get through their chemo treatment and beyond.
I actually don’t get too upset when someone, having found out I have incurable cancer, says “you look really well”. I’m glad I look well, I mean, who wants to look unwell? That said, I’d rather look less well than have cancer. Just don’t tell me I have a ‘good’ cancer!
I guess most people are just being kind despite any obvious awkwardness. So I just smile and say thank you. If I’m feeling mischievous (always!), I wink and say “yes, I may look well but you should see my insides“. Sometimes they ask about that which then presents another awareness opportunity.
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’s going on inside their heads and bodies.
Visible Illness can have awareness benefits
Conversely in 2018, I was absolutely humbled when I met a Parkinson’s disease patient. I had ‘noticed’ Matt prior to meeting him, mainly because he had difficulty walking. When he was talking to me I had to really concentrate because his head, arms and legs were constantly going into spasm. His speech was also affected. Despite his very clear VISIBLE illness, I can say he is a fantastic advocate for Parkinson’s. He told us that he has no issues with people staring or looking at him as he makes his way around and that is his key marketing point – himself. He uses the fact that people notice/look/stare as opportunities to get talking to them and he is a living breathing advert for Parkinson’s. I had no idea Parkinson’s had these effects, I thought it was just the shaking hand thing that you often see on TV programmes.
So things are sometimes not what they seem with VISIBLE illnesses just as they are with INVISIBLE.
NETs can be invisible before and after diagnosis
I know from reading and participating in Neuroendocrine Cancer (NETs) forums that many patients with my own condition frequently encounter people who clearly do not understand much about the effects of NETs on someone’s body (and mind) and day-to-day living which for many can be described as a struggle. I read one story about a lady who was accused by a co-worker of faking her cancer because she looked so well! How many of my NET patient readers have been told they look really well? This is something frequently said to me and I now respond with the customary “Yes, but you should see my insides“.
Not many NET patients are subjected to the rigours of chemotherapy and I for one am thankful for that. However, many NET patients have had some ‘bad ass’ surgeries and will be treated for the remainder of their life with (at least) large anti tumour and hormone inhibiting injections and perhaps other side effect inducing drugs. There is no 5 year or indeed any remission for many NET patients. What is incurable has to be endured! Moreover, they will be tested at regular intervals to ensure remnant tumours are ‘at bay’ and that no new ones have appeared. So the potential for a new or re-diagnosis is there at every single meeting with their specialist. All of that comes with a price in terms of quality of life.
I’m not trying to compete with other cancers or chronic illnesses, I’m just saying that a NET patient who looks well, may not be well inside – body and mind! Nor am I asking for pity – I am, however, asking for understanding.
When I read about some of the issues others deal with, I suspect I’m one of the luckier patients. I’m in reasonable condition and put up with a number of minor irritants which I suspect are due to the consequences of my cancer treatment rather than from Carcinoid Syndrome. However, one thing that does scare me from time to time is stomach cramps. Hopefully I’m not tempting fate as they seem to be reduced this year. However, when I suffer these, it does worry me, not just because they can sometimes be very painful and debilitating, but I know that I must go to the toilet ASAP. Handy if I’m in the house, not so handy if I’m on a plane, down town or anywhere where toilets are not in abundance.
I try not to let this problem stop me leading as normal a lifestyle as possible and as I said previously, it doesn’t really happen that frequently. Long flights are one of the few times I take Loperamide (Imodium) and for long drives and trips down town, I’m simply reliant on toilet availability. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to go get a key and again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet. If necessary (sufficiently urgent), I’ll even ask to use the staff toilets in shops etc. I do have a card in my wallet which I obtained from my friends in the NET Patient Foundation but I’ve not yet had to use it ‘in anger’.
Are you nodding your head at these issues? I also suspect quite a few of you will therefore enjoy reading an article which has given me the inspiration and motivation to update this blog post. It’s about a lady who has major abdominal issues through surgery and illness (inflammatory bowel disease (IBD)) and to me this sounds like a worse condition than many NET patients endure. She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent, well written and apparently it went viral. What great publicity that must have been for IBD.
Read the post here, it’s brilliant: CLICK HERE TO READ (p.s. ‘Loo’ is British slang for toilet)
Thanks for reading
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