The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Research, Survivorship
Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my immune system may be compromised and having got this far beyond diagnosis, with an outlook to keep going further, I don't want to let my guard down. So an annual flu shot is personally MANDATORY. As I've said to my doctors a few times, I don't believe the cancer will get me, it will be something like a pneumonia, a bad flu or a chest infection. There's a lot of 'fake news' and 'conspiracy theorist' whispers going around about the dangers of the flu…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship
I have a lot of be thankful for - I'm still here for starters! BUT ......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for! Thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness, Living with Neuroendocrine Cancer
On 8th July 2010, 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…
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Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Opinion: Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement. Stabilised Following diagnosis, I got quite a lot of attention in…
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25 Life Lessons From a Two-Time Cancer Survivor

25 Life Lessons From a Two-Time Cancer Survivor

Inspiration, Survivorship
Sometimes, a blog post comes along and it just resonates!  I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below. Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated them into one very powerful list.  I'm not suggesting they all apply to everyone but perhaps even a 'pick n mix' approach would be useful.  For example, I couldn't do number 8…
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Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was gong to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which . seems to have turned rather international) - well done NCSD.Org - you should check out the site and sign up for their newsletter What is 'Survivorship'? The definition differs slightly between national cancer advocate organisations but it would appear it also…
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Shrek and Princess Fiona

Shrek and Princess Fiona

Humour, Inspiration, Survivorship
[caption id="attachment_480" align="aligncenter" width="640"] Shrek and Princess Fiona[/caption] I was looking through some old photographs and came across this one I thought you guys might like.  It's pre-diagnosis, 2008 I think. As you can see, despite being an ogre, Shrek is actually quite a handsome chap :-) However, more to the point, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris was in fact not very well at the time. This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (a mad ex paratrooper) and his lovely wife Babs.  Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit peaky…
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