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;
- I asked people if they are a ‘glass half empty’ or ‘glass half full’ mindset’;
- I discussed whether NET patients should be a ‘passive patient or an active advocate’ – the feeling of being in control can help for some;
- I suggested that exercise can help – it’s not about how high, how fast, how long, it’s about direction, about going forward;
- I suggested that diet and nutrition support can help. Not just about what to eat, also about ensuring you are getting the minimum levels of nutrition into your body.
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.
Thanks for listening
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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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14 thoughts on “Living with an incurable cancer – does mind over matter help?”
Thank you so much for writing this. I, too, have neuroendocrine cancer (liver mets, etc). It’s difficult to differentiate between straight up depression and hormonal imbalance due to the active tumors. I feel I’m in survival mode 24/7. I’m 43, a single mom to two teenagers and have trouble “fitting in” with the human family. It’s just a lot to live with emotionally and when people tell me to think positive all I envision is a bandaide that gets ripped off when I lose my grounding so the result is living with a post it note of uncertainty…on my forehead! And positive thinking (for me) means denying the really important questions and learning to live with all that comes with any lifelong disease. Acceptance might be a good word for it and it’s a daily commitment. And one I find exhausting sometimes. Thanks Ronny. 🙂
Thanks for taking the time to comment Marcy. I’m not really one for the hormonal imbalance theories although I don’t know your full medical history etc. I don’t think we should automatically tie the two in together simply because our cancer has a connection to hormones. I do think NET Patients can have issues with depression and anxiety and the latter can sometimes be caused by the emotional aspects of living with this disease including the trauma of diagnosis, treatment, side effects of treatment. I also think the former (depression) can present (silently) if nothing is done about the anxiety aspects. It’s not easy and I appreciate you have a lot to contend with on top of bringing up two teenagers on your own. I’m not suggesting the answer is simply to deny any questions (importance is relative to each mindset), in fact quite the opposite. You need to accept it, find a new normal and them try to improve that normal. You may need help getting to that normal. I really hope you can work though this and please keep in touch.
This blog post was informative. I have not read any further, however, with time will do so. I was diagnosed with neuroendocrine cancer in mid October, 2015. I started an online journal about my personal journey. Not all my post are not about cancer…because my life is more than cancer. I would be pleased if you read a bit, but not necessary. I will follow yours and read as I have time.
To your continued good health
Thank you, I followed you back and will take a look. Good health you too!
[…] Living with an incurable cancer – does mind over matter help? September 30, 2014 […]
I much prefer this post to your last one. This makes infinite sense. The last did my head in a bit.
5 or 6 years ago the forums were pretty much as you describe. Now they are much better especially the FB groups, which on the whole tend to be self moderating so to speak, but its still about finding one that suits you. To my mind its a bit like joining a club, or making new pals if you move to a new area. Hope that makes sense, also lots of folks like the zebra but if others dont that’s ok too.
Perhaps I’ve found different groups from you. Or
Perhaps you could start a dont mention zebras here group?
Sounds like the ‘Monster Raving Loony Party’ Linda LoL. I have no intention of starting a forum group of my own, it had crossed my mind – I would rather support NPF to make theirs better. Zebras are a distraction in my opinion. If we want to be taken seriously, we need human being stories.
I re-read my forum post again and consider I have been balanced – covering both sides of the fence – the forums can be frighteningly good and also good at frightening some people. My forum experience is based on the past 18 months so we must be members of different forums if you think none of what I said is there now – perhaps we can share notes at some point 🙂
So right Ronny. The depression is obvious in many whose posts we read in the online groups for NETs patients. I find myself trying to blame all kinds of health issues on Carcinoid Tumor and then have to back off and think about it rationally and with research.
thanks Cy. I wouldn’t go far as to say some of the posts in the online groups are as a result of depression which is a recognised medical condition – I can see where you are coming from though. I sometimes wish I could do more to help people who are suffering with NET Cancer related issues. I’m hoping my blog and my input to the online systems will help in some way. Some people think it’s weak to go to a doctor about anxiety or depression. I personally think it’s a very strong thing to do.
One of your best blogs to date Ronny, particularly the emphasis on mental attitude. Thankfully, I have not had the cancer illness, but I have suffered from it in terms of losing both my parents and close relatives/friends to this dreadful disease. One of my observations is that negativity can be a form of cancer on it’s own, eating away at a person’s mental state. If you tell yourself enough times that you are “jacked off”, it can easily convince your mind that it is the case. My father who died at a young age was very positive right to the end and despite how much he suffered. Which not only had a positive impact on him, but those around him who loved and cared for him.
thanks Tony, as you know I’ve been struggling to get the words right!
Brilliant blog post. I am sure many cancer patients will be helped by this. You might want to follow my posts on http://www.dimindmatters.WordPress.com for strategies to overcome depression. Some of your followers might find it helpful. Keep up the good work!