Not every illness is visible

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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!

toilet-sign-wall-of-china
Situation normal, right? 

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).

asda toilet

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Check out the associated blog Read blog “Things are not always how they seem”

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 Foundation and one from Macmillan Cancer Support.  You can order these online (links given) and I’m sure other national advocate organisations do similar things.

NPF Toilet Card Backmacmillan toilet

 

I applaud Asda for their initiative.  Lets hope it catches on anytime soon!

I may look well but you should be my insides!

insides

 

 

 

 

 

Thanks for reading

You may also enjoy these similarly related articles:

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

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Please flush after use!

I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer. “Please flush after use” – erm…yes sure but actually – no thanks

please-flush-after-use-350x225-polyIn the past couple of years, I’ve read so many stories about the quite natural act of using a toilet (…..some more repeatable than others).  I think if there was a ‘Bachelor of Science degree in Toiletry’, I might pass with First Class Honours.

I jest clearly but it’s strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses.

I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  “Please flush after use” – erm…yes sure but actually – no thanks 🙂

You're kidding me!
You’re kidding me!

When I read about some of the issues others deal with, I think I’m one of the luckier Neuroendocrine Cancer patients regarding these type of issues. I’m in reasonable condition considering the extent of my disease and my subsequent treatment.  I put up with a number of irritants but I don’t seem to suffer as much as some appear to do. That said, I think I sometimes downplay my own issues though, I’m well known for ‘not frightening the horses’.

One thing that does worry me is the occasional stomach cramp. Hopefully, I’m not tempting fate as they seem to be vastly reduced in the past 3 years. They can sometimes be very painful and debilitating – normally resolved by going to the toilet (and hopefully one is close!). Handy if I’m in the house, not so handy if I’m on a plane, in town or anywhere where toilets are not in abundance. I did write a blog on this subject following a very painful episode on my Hadrian’s Wall 6 day adventure – My stomach cramps my style’

As I’ve had intestinal surgery, Bowel obstructions are a potential worry. To date, pain and sluggishness have always been just a bout of constipation.  Read my article here.  You can carry a card for the bowel obstruction risk courtesy of NET Patient Foundation – these guys have a card for most stuff.

test npf

I don’t suffer from ‘carcinoid syndrome induced diarrhea’ but long flights are one of the few times I take Loperamide (Imodium).  For long drives and trips to town, I’m simply reliant on toilet availability. Normally, I just wander into hotels and restaurants and help myself. 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 get a key – again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet!  If sufficiently urgent, I’m even prepared to ask to use the staff toilets in shops etc. I do have a card in my wallet, which again, I obtained from my friends in the NET Patient Foundation.  I’ve not yet had to use it in anger. I also noticed that Macmillan are now doing something similar.

NPF Toilet Card Back

 

On the subject of urgent visits to the toilet.  I recently wrote a blog about a lady with inflammatory bowel disease (IBD) and I suspect in a worse condition than most Neuroendocrine Cancer patients.  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 and it apparently went viral.  Just goes to show that with invisible illnesses Things are not always how they seem.  The letter is brilliant.

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For those who are interested, NET Patient Foundation also do a Carcinoid Crisis at risk emergency card to keep in your wallet/purse so that doctors can be forewarned of the aversion to anaesthetics etc. Mine is in my wallet at all times just in case.

CARCINOID CRISIS NPF 2018 (2)

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Things are not always how they seem

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Things are not always how they seem

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.

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Seriously!

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.

NPF Toilet Card Back
NET Patient Foundation Card – on the back

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

You may also enjoy these similarly related articles:

Shame on you! – click here

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

Not every illness is visible – click here

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner


patients included

Please Share this post

 

My stomach sometimes cramps my style

toilet-sign-wall-of-china
Seriously!

When planning to walk Hadrian’s Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true ‘Donald Rumsfeld style’, I considered all the ‘known unknowns’ and the ‘unknown unknowns’ 🙂  Anybody who doesn’t is either reckless or supremely confident (the latter can sometimes be the same as the former……).

As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain.  One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur.  If you’ve had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET) patients also suffer these cramps, often due to something called ‘Carcinoid Syndrome’ or simply as a side effect of treatment.  This syndrome has symptoms including (amongst others):

  • Flushing
  • Abdominal pain
  • Diarrhoea
  • Loss of appetite
  • Wheezing
  • Fast heart rate
  • Dizziness due to blood pressure that may go up or down – this can be triggered by having an anaesthetic.

For me, it was mainly the flushing – in fact this was instrumental in confirming my diagnosis. However, in hindsight some other issues might have been masked by routine/’run of the mill’ illnesses a couple of years prior to being diagnosed with Cancer.

I’m not particularly ‘syndromic’ at the moment due to my monthly treatment and debulking surgery.  However, I do occasionally have to deal with ‘stomach cramps’ (a term which tends to mean the whole abdominal area). Fortunately, they are not that frequent.  I might not have a stomach cramp for weeks and then suffer a couple of times in a single week.  Consequently, after each attack, I study my activities, my medicine and my diet trying to figure out if there is anything I can avoid to prevent this happening.  I now maintain a daily diary to assist.  Footnote from 2018, I don’t seem to have them as regular as I used to. 

I think most people will have experienced stomach cramps at some point in their lives and those who have will agree it’s not nice. I’ve had some really painful episodes in the last 2 years and as is usually the case, it’s helped by visiting the toilet/bathroom. Getting there can be painful as I sometimes find any movement exacerbates the pain with the worst attacks.

You can now see why I listed this as a key risk in walking the 84 miles of Hadrian’s Wall! You might be excused for thinking there shouldn’t be a problem with all that countryside available? Add the openness of the area; add the constant stream of walkers in both directions and the sum = not much privacy!  As an ex-soldier and a male, I’m used to using ‘natural’ toilets or at best temporary structures.  I ‘googled’ to check the availability of toilets along Hadrian’s Wall to find they are few and far between.

I do have a special card which I keep in my wallet but it’s not much use out in the hills! I’ve actually never had to use this card ‘in anger’ but I came very close to using it on Day 5 of this 6 day walk.  I was suffering quite a lot of pain for a good mile or so on the outskirts of Carlisle which was semi-urban. I walked past a dozen houses but my pride would not let me use the card – silly boy!  There was no way I was going to do a ‘Paula Radcliffe’. Things were coming to a head as we approached a bridge with a small copse over a tributary of the River Eden.  At last some cover!

NPF Toilet Card Back

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

wego-blog-2018-winner