Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_4893" align="aligncenter" width="500"] Graphic courtesy of Ellie McDowell[/caption] There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don't know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post! I don't tend…
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Don’t worry, I really am OK!

Don’t worry, I really am OK!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6843" align="aligncenter" width="377"] I really am OK![/caption] I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer".  The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'.  For the uninitiated, I'm defining this as "One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence."  That perfectly explains the accompanying graphic!  That definition also covers the two key themes above, talking about it…
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“Trust me, I’m a Doctor”

“Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
One of the most frequent posts on forums is about the Patient-Doctor relationship (or occasionally a lack of it.....).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever. However, people with less common conditions can perhaps be more difficult to satisfy.  A 'generalist' doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at secondary care level, certain less common conditions still need dedicated specialists and these services…
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Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and Nutrition, Living with Neuroendocrine Cancer
Always speak to your specialist before taking vitamin and mineral supplements Featuring Tara Whyand. Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed. This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients - at least in the UK. As I said in my article 'I may be stable but I still need…
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I may be stable (..ish) but I still need support and surveillance

I may be stable (..ish) but I still need support and surveillance

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
With incurable 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…
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Dr Google will see you now

Dr Google will see you now

Awareness, Humour, Patient Advocacy, Survivorship
  Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me!  However, you need to be very careful in acceptance of what is credible information and what isn't. As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my aches, pains and unusual feelings (and I confess to using it to help others).  I mostly find there are no real or definitive answers online for patient issues.  Although I seem to learn something on each piece of research, I also find some really worrying stuff.  Some symptoms can have dozens of reasons and I often realise how…
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