Shame on you!

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 outIt’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

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

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Read my Cure Magazine contributions

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

 

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

patients included

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