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


mindmatter

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. Since my charity walk was completed:

The aim of this blog is to bring these 3 areas together to summarise and emphasise why they are important to me.  I believe 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 stating 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 even 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.

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‘.  There are worse cancers out there and 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 believe a positive attitude is important for anybody with cancer including those living with incurable diseases such as Neuroendocrine Cancer. I’m not suggesting a positive attitude helps kill cancer cells but it can be a useful weapon against the condition and maintenance of a good quality of life.

I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it!

 

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

 

Passive patient or active advocate?


Sorry to have been quiet for a while but I’ve been so busy with house, family and cancer campaigning activities.  Additionally, I’ve been continuing my research into Neuroendocrine Cancer.  Why do I do this?  Whilst I have a great medical team, I’d also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don’t want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd).

Passive vs Activated Patient

Passive vs Activated Patient

I actually enjoy researching neuroendocrine disease and I’d like to think it was all in one book somewhere – this simply isn’t the case! From what I’ve read in the past 4 years, I suspect the ‘all encompassing’ book would need to be about 10 feet thick. I also suspect I’m still at the tip of the iceberg! I don’t have room in my house for a 10 feet thick book, so I have to rely on ‘Professor Google’ a lot.  I learnt early on to be careful not to believe everything I find on the internet (…..including on patient forums).

Once you have been researching NETs for some years you learn which are the best sites and what is the sort of thing to ignore.  This wisdom came in handy recently when I was studying neuroendocrine tumours of the thyroid – apparently rarer than hen’s teeth.  To understand the subject, I also researched the Thyroid (in the anatomical sense) and then all types of Thyroid Cancer. It didn’t take long before my head was hurting but it will be the subject of a future blog post.

One of the issues with Neuroendocrine Cancer is the diversity of locations and symptoms in terms of the anatomy and presentational difficulties. Neuroendocrine tumours (NETs) are rare and they present complex challenges to diagnosis and treatment. Even in the case of metastatic spread to the liver and beyond, there are some important differences in the nature of these tumours compared to gastrointestinal and pancreatic cancers.  Many patients are first thought to be suffering from other ailments before finally being diagnosed with Neuroendocrine Cancer, thus delaying their treatment.  It’s not just confusion over vague symptoms leading to misdiagnosis of common ailments, I even found a story of someone who had been misdiagnosed with Pancreatic Cancer and been given 12 months to live.  One year later, the person asked a doctor friend why he was still alive and feeling OK which led to further checks and the discovery that this person actually had a Neuroendocrine Tumour of the Pancreas – a less aggressive form of cancer (normally) which was treatable and offered a better prognosis.  Amazing story but this person’s treatment was delayed by 12 months. NET cancer in any part of the body is best left to (or overseen by) Neuroendocrine specialists (in my opinion).  However, had this guy done his own homework, he might have asked some key questions making his doctors at least think of some alternative scenarios.  Food for thought?

Thanks for reading

Ronny Allan

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No flushes please!


I bet you my flush beats yours?

No flushes please!


Despite people’s expectations, diagnosing Cancer isn’t a two minute job. There is a whole host of stuff to consider and medical staff clearly want to get it 100% correct in order to plan and manage the patient’s treatment. I wrote a blog on 26 July “celebrating” 4 years since diagnosis – it’s worth a read, check it out at this link here: http://wp.me/p4AplF-c

Continuing with the ‘four years on’ theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cyto reductive (tumour debulking) rather than curative. I did have a 3 day Octreotide Scan midway within this 6 week period and this gave me some confidence that I hadn’t been forgotten! Despite being told my cancer was incurable, I vividly remember not feeling ill enough to be a cancer ‘patient’ and I therefore continued to act and work normally. After getting over the initial shock, a little bit of me still thought it was all a big mistake!

Then, on 6 Sep 2010, I was introduced to the world of ‘Somatostatin Analogues’ – namely Octreotide. Although I was working normally, I was experiencing worsening flushing episodes, some of which were drawing attention at work with one person asking if I had blood pressure problems! The flushing was a result of my metastatic Neuroendocrine Cancer and associated Carcinoid Syndrome. Check out this blog: http://wp.me/p4AplF-2w My Oncologist was spot on though, as the flushing had to be brought under control before I could undergo the cyto reductive surgery – an acute syndromic effect known as ‘Carcinoid Crisis’ during major surgery could be fatal. I was fortunate enough to have home visits from a Nurse as part of my treatment and ‘Ann’ turned up with a box of daily dose Octreotide (25 micrograms) plus a ‘sharps box’. Ann came to see me the first 3 days to make sure I was able to self administer – however, I volunteered to stick it in myself on day 1 – in for a penny in for a pound! It did eventually reduce the flushing and was sufficient to counter the risk under anaesthesia.

The daily Octreotide was a bit of a pain to administer though. The dose was in an ampoule which had to be ‘snapped’ open and the (very expensive) drug then had to be aspirated using a wide bore needle from the ampoule into the syringe. Then the needle had to be swapped for a smaller bore which I would then self-inject against a rota of left stomach, right stomach, right thigh, left thigh, and so on. I only messed it up once which resulted in a cut finger and a wasted drug dose. I’m no longer squeamish about injections though 🙂 In Dec 2010 after major surgery, I was converted to a monthly long acting injection of Lanreotide (same job as Octreotide). This is a thicker and larger needle and is injected ‘deep subcutaneous’ into the buttock by a trained nurse – check out this blog post: http://wp.me/p4AplF-cV and here: http://wp.me/p4AplF-6c I’ll most likely be dependant on ‘Somatostatin Analogues’ for the rest of my life but I almost look forward to my 4 weekly ‘butt dart’ (a brilliant term used by my American friends). I suspect these injections are the reason so many people say to me “You look so well”.

I haven’t had a single flush since surgery/start of Lanreotide – lucky I’m not a card player 🙂

Please help spread awareness of Neuroendocrine Cancer by sharing this blog.

Ronny

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Childhood Neuroendocrine Cancer – 1 in 7 million!


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September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many child cancer articles and I notice the UK’s top soap Coronation Street is already featuring such a story.

I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available.  I don’t know that much about Childhood cancers but the Cancer Research UK site has a nice summary on this page.  You will note that over half of childhood cancers are either Acute Leukaemias or Brain Cancer.

I do know a lot about Neuroendocrine Cancer and although you can develop it at any age, it does tend to be associated with those in later life with many statistics quoting ages in the region of 40 – 60 years at time of diagnosis.  So childhood Neuroendocrine Cancer is uncommon.

I recently had my survivor story (in the form of my blog) published by Carcinoid Cancer Foundation.  I was hoping to inspire people through my own story but ended up being inspired myself after discovering a survivor story from an eight year old who had a Neuroendocrine Tumour (NET) of the Appendix.  As a group of Cancers, I personally don’t believe Neuroendocrine based cancer is that rare but according to the survivor story, only 1 in every 7 million children will be diagnosed with a NET ……  now that is rare!  Check out the story here.

Children really are resilient and hopefully the medical team have caught this NET early enough for little Emily to lead a normal life going forward! The article not only put a smile on my face but gave me the inspiration to generate this blog.

Please help spread awareness by sharing this blog.

Thanks for reading

Ronny
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My Diagnosis and Treatment History

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