Eight years ago today, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this “non-issue” was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour – after all, I wasn’t actually ill!
Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (……. “I think I’ve lost a bit of weight“). My haemoglobin was low (even lower on repeat testing). The GP compared my results to someone in their eighties with malnutrition. In hindsight, I should have been alarmed by that statement but instead I went on holiday to Barbados. Apparently low haemoglobin is a sign of iron deficiency anaemia. I suspected it would pass, either my blood results would revert to normal naturally, or they would after a prescription for some pills. That’s what normally happens, isn’t it? I was so indifferent to the issue, I even delayed the blood tests by three weeks.
Back to 8th July 2010 ….I hadn’t really given him many clues but within minutes of chatting with the secondary care consultant (who was armed with the results of the negative colonoscopy test), he said “what are you doing this afternoon“. I had no hesitation in saying “whatever you want me to do“. I’m still not getting it as I saw this as a chance to get an all clear, get some pills, get back to normal. To cut a long story short, the results confirmed I had a metastatic cancer. If you can see it, you can detect it.
Following the scan results, I had a dozen other tests to narrow it down to Neuroendocrine Cancer (eventually confirmed by biopsy). During these 2 weeks of tests, I finally confessed for the first time that I had been experiencing facial flushing and intermittent diarrhea. In those days, I wasn’t really in tune with my body.
I had been sitting on a beach in Barbados sipping piña coladas with my wife and neither of us had any inkling that I had a serious life threatening illness and that it had been growing inside of me for some years. Slow but sneaky? You betcha. They did some damage too – check out my treatment summary here.
I remain thankful to all those involved in the triggering of my ‘incidental’ diagnosis. The Nurse who ordered the ‘just to be sure’ blood tests, the GP who immediately referred me to secondary care (increased my chances of being diagnosed with cancer), the secondary care specialist who was instrumental in getting to the bottom of the problem in double-quick time.
My intransigence, denial and withholding vital symptoms from the doctors didn’t really help – there’s a lesson for all there.
Withincurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.
It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.
One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’.
I also believe patient expectations need to be managed although improvements are still possible. In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard.
HOWEVER …….. The specialist view of ‘stable’ will be looking at tumour and hormone makers. The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers.
So ….what is stable for me?
Looking at my medical documents, I was not really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers. Nothing has grown since 2012 although I have a thyroid lesionbeing tracked on watch and wait. My key NET markers have been solidly in range since 2012. Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated. I feel well, I look well (but you should see my insides ….). I think I’m on top of things.
I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios. In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings. I’m fairly certain other countries have similar setups. Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more! The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona.
OK … I may be stable (ish) but I still need support!
However ……. my stability does NOT mean I’m complacent. For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist. They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios. Patient-doctorcommunicationis vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse. All NET patients should have the same.
The best advocate for you is YOU (or someone very close to you)
Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’. Whilst we are on that subject, did you hear the one about the constipated NET patient? This article contains a summary of my attempts to gain a decent quality of life.
Although I read patient forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, have other issues going on, it can end up as a tangled mess as people try to compare apples with pears. To help with this issue, I created my own private Facebook group and I try to emphasise these issues through moderation.
I like to do my own research as I want to be in control of my own QoL. One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e.managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only a few dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..
NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.
This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas. I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch. The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable). I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome‘. I personally feel I’ve been able to harness this knowledge to improve my QoL.
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 hormonemeasured 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
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I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should’ve seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that.
You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP’s Surgery in May 2010, see blog post ‘Diagnosis – I’m no longer in control’. That nurse was professional, thorough and she clearly went the extra mile for her patients. She has my eternal thanks for sending me down a different path in the game of chance that is life. I often wonder where I would be now had she not ordered the ‘just to be sure’ blood test that ended up being the trigger for my eventual diagnosis of metastatic Neuroendocrine Cancer. Perhaps she was the thing between me and a hearse?
Following that episode, I have since met many Nurses (male and female) and my respect for them knows no bounds. I spent around 35 nights in hospital over the period Jul 10 – Feb 12 and most of my memories involve something a nurse has done to help me.
It was a nurse that:
held my hand when I was in real pain and discomfort during a liver biopsy
met me on each hospital stay and put my mind at rest with their caring nature and big smiles
brought me my medicine when it was due 24 hours per day
carried out observations on me when they were due 24 hours per day
washed me when I was in no position to do anything for myself
got me out of bed when I was not able to do it myself
washed my feet and changed my hospital socks when it was still too sore to bend down after surgery
did a hundred other things I could list, some of them not very nice jobs
I still depend on them today! Every 28 days, I rely on them to give me my anti-tumour treatment and my specialist Nurse is always on the end of a phone if I need to speak. And I just love it when I see a specialist or a consultant and there is a Nurse also present. It makes me feel safer, more comfortable and I’m likely to ask more questions.
So – to all nurses out there, a big thanks from the bottom of my heart ♥ Not a hearse in sight!
‘Diagnosis‘. The dreaded moment when you’re looking at an Oncologist and waiting to be given some news. I’d been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests and now referred to an Oncologist.
Rewind 2 months to May 2010…… I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I’m happy as a pig in the proverbial! My annual Asthma clinic comes along and it’s an opportunity to work at home for the day….yahoo – no commuting! “Hi Ronny” – “Hi Liz”. Blah Blah Blah. However, glad Liz was taking it seriously – I just wanted to get back to my laptop, things to do…… After the usual tests and checks, we commenced the AOB (any other business) – “I think I’m a bit lighter than I thought I was”….”Did you mean to lose the weight?”…..”no”. Just to be sure, Liz gave me a blood test form. Had I known at the time that this was probably the most important document I might have ever held in my hand, I would have driven straight down to Bournemouth Hospital and had the test done. However, that form sat in my in-tray for around three weeks…… I was too busy on my laptop, things to do…….. To cut a long story short, my blood results were not right and the discrepancy needed further investigation. I even went on holiday to Barbados not thinking anything was wrong. In hindsight, I’m glad I didn’t know. One thing led to another and on 26 July 2010 I met with an Oncologist. He dispensed the news that I had a metastatic and incurable Cancer and without treatment I would eventually die and perhaps pretty soon (…. I did ask!). p.s. I’m still here though!
I no longer felt in control
But thank you Liz – I often think what might have transpired without that blood test.
Listen to me explaining my diagnosis here: CLICK for the video.
Check out my entire diagnostic, therapy and surveillance story here.
The picture below is me in Barbados a month before I was diagnosed. Glad Chris and I didn’t know what was coming, we had a great time. My ‘hamster cheeks’ are no longer there!