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.

9540384-large

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

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Colonoscopy Comedy

 

No more prep please!

Last year I wrote a series of blogs on the ‘coping’ side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I’ve had, I sometimes have a little laugh even although I wasn’t laughing at the time!  My favourite ‘treatment laugh’ is the ‘suppository story’ which occurred in hospital shortly after my first major surgery – it wasn’t funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer diagnosis.  Like the guy in the story below, I don’t remember a thing. However, what I do vividly remember (and clearly so did he!), is that the preparation for the procedure can be a ‘challenge’.  I can vouch for that.

I came across this real but anonymised journal which you may enjoy and hopefully have a little laugh too.  I suspect those who have had a colonoscopy (or two) will enjoy it more than others! I suddenly realised colonoscopies can be funny on the basis I laughed out loud reading this.  The quotes from doctors at the end are hilarious!

Colonoscopy Journal:

I called my friend Axxx, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Axxx showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Axxx explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.  I nodded thoughtfully, but I didn’t really hear anything he said, because my brain was shrieking, ‘HE’S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!’

I left Axxx’s office with some written instructions, and a prescription for a product called ‘MoviPrep,’ which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America’s enemies.

I spent the next several days productively sitting around being nervous.
Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn’t eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes – and here I am being kind – like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ‘a loose, watery bowel movement may result.’ This is kind of like saying that after you jump off your roof, you may experience contact with the ground.  MoviPrep is a nuclear laxative. I don’t want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ‘What if I spurt on Axxx?’ How do you apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Then a nurse named Exxxx put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Exxxx was very good, and I was already lying down. Exxxx also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn’t thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house down. When everything was ready, Exxxx wheeled me into the procedure room, where Axxxx was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Axxx had it hidden around there somewhere. I was seriously nervous at this point. Axxxx had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was ‘Dancing Queen’ by ABBA. I remarked to Axxx that, of all the songs that could be playing during this particular procedure, ‘Dancing Queen’ had to be the least appropriate. ‘You want me to turn it up?’ said Axxx, from somewhere behind me. ‘Ha ha,’ I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like……………

I have no idea. Really. I slept through it. One moment, ABBA was yelling ‘Dancing Queen, feel the beat of the tambourine,’ and the next moment, I was back in the other room, waking up in a very mellow mood. Axxx was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Axxx told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

On the subject of Colonoscopies……..

Colonoscopies are no joke, but these comments during the exam were quite humorous!!!!! A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

1. ‘Take it easy, Doc. You’re boldly going where no man has gone before!’
2. ‘Find Amelia Earhart yet?’
3. ‘Can you hear me NOW?’
4. ‘Are we there yet? Are we there yet? Are we there yet?’
5. ‘You know, in Arkansas, we’re now legally married.’
6. ‘Any sign of the trapped miners, Chief?’
7. ‘You put your left hand in, you take your left hand out…’
8. ‘Hey! Now I know how a Muppet feels!’
9. ‘If your hand doesn’t fit, you must quit!’
10. ‘Hey Doc, let me know if you find my dignity.’
11. ‘You used to be an executive at Enron, didn’t you?’

And the best one of all:

12. ‘Could you write a note for my wife saying that my head is not up there’

————————————————————————–

thanks for listening

Ronny

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Living with an incurable cancer – does mind over matter help?

mindmatter1

When I started blogging in 2014, it was relatively easy – all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian’s Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult!

In my early blogs, there were several ‘no go areas’ which were either too complex or potentially controversial.  I didn’t really have much time to think them through properly at that point in time. However, I’ve since dabbled in some of these areas to test the waters.   I’m not a healthcare professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;

Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.

It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer.  I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.

It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult.  According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here.  And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.

Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic).  If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission?  The latter is indeed very good news and will have impacted the survival figures greatly.

However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL).  These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment.  One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer or ‘cancer in slow motion‘ in respect the well differentiated versions.  In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment.  But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues.  Many people not only live with Cancer but they also live with the consequences of Cancer.

As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂  I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearful and blame every single ache and pain on my cancer (because most of the time it turns out not to be) –  this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial.  One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer.  NET Cancer needs an element of pragmatism now and then!  I also think exercise and nutrition can help body and mind – thus why I listed those factors above.

Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.

I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.

If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor.  In fact, you may appreciate this excellent video from NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.

I also liked this video by Dr Michael Burke, a Psychiatric Oncologist – click here

You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.

8 tips for conquering fear

Thanks for listening

Ronny

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Laughter is the best medicine

specticles

How many times have you heard it said that laughter is the best medicine?  I can certainly remember this phrase being said when I was a child.   There is some Science in Medicine (more applied than pure), so where is the scientific evidence for this claim?  Well after all this time, someone has decided to carry out a study.  Apparently when we laugh, we exercise our muscles, get blood flowing, decrease our blood pressure and stress hormones, improve sleep patterns and boost our immune system. It’s a new area of research known as ‘Psychoneuroimmunology’ – the study of how emotions affect our nervous and immune systems. It’s still a relatively new area of research, but the insights are promising.

The study looked at 20 healthy older adults in their 60s and 70s, measuring their stress levels and short-term memory. One group was asked to sit silently, not talking or reading and not using their mobile phones or tablet devices.  The other group watched funny video clips (personally I would have advised they watched the English football team 🙂 )

After 20 minutes, the participants gave saliva samples and took a short memory test. While both groups performed better after the break than before, the “laughter group” performed significantly better when it came to memory recall. Participants who viewed the funny videos had much higher improvement in recall abilities, 43.6 percent, compared with 20.3 percent in the “non-laughter” group.  The laughter group showed considerably lower levels of cortisol after watching the videos.  Cortisol is a key stress hormone measured via saliva.  The non-laughter group’s cortisol levels decreased just slightly.

Re the amusing picture, I received this in the form of a get well card after major surgery in 2010.  This person clearly understood my sense of humour and I hope you had a good laugh too. My surgeon’s secretary also thought it was funny and had her cortisol levels reduced 🙂  Laughter helps you feel both physically and emotionally healthy and could possibly be as good for you as taking a vitamin, who knows? Furthermore it’s prescription free!  More research is clearly still needed, but why not start to include laughter as part of your health regime?  Read my blog for starters 🙂

Thanks for reading

Ronny Allan

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