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. 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.
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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