I’m extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation’s blog site!
I’ve been following these guys since I was diagnosed. They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet.
The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit organization chartered by the State of New York for the purpose of encouraging and supporting research and education on carcinoid and related neuroendocrine cancers.
The blog is designed to explain why I’ve felt it necessary to learn a lot more about both my disease and my general health; and why I think others would benefit. The title is slightly ‘tongue in cheek’ but it touches on a lot of serious points for all Cancer patients. I hope you enjoy!
My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington. A particular display caught my eye entitled “Disobedient Objects” and I immediately thought it had a scientific sound to it. Imagining a set of everyday objects which somehow didn’t behave as you would expect, it sounded great fun so I wandered in. How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change. The term ‘disobedient’ was used as these objects were designed by grassroots social movements mostly for use in street protests. These ranged from bike locks for chaining your head to a fence to makeshift tear gas masks; to large inflatable cobblestones designed to act as a barricade between protestors and charging police without causing damage.
However, I found myself becoming interested in the story behind the display which focussed on protests by people who had taken to the streets because they felt they had no other option to make their point known; or simply to show mass support for a cause they believed needed a much louder voice – their mission was to effect change. My interest increased when the exhibit video explained that the expansion of the internet and social media had brought new ‘online’ ways of ‘protesting’ or ‘campaigning’ to ‘effect change’ and some of these are now particularly powerful in many democratic societies. They are also much easier and safer to do than taking to the streets! For example in the UK, e-petitions which have reached 100,000 signatories can result in the petition subject being brought before a House of Parliament committee for further action. Social media is also very powerful if you can get a high-profile supporter to post or tweet your ‘campaign message’ and make it go ‘viral’. Some of these online ‘protests/campaigns’ will make it into the national newspapers and national TV news – particularly powerful for the third sector if the campaign is associated with signatures for e-petitions and/or charitable donations (viz a viz ice bucket challenge etc).
Whilst I was in this exhibition, it suddenly occurred to me that these people had the same type of mission as I do except that I use a modern (and safer) version of ‘disobedient objects’ in the form of this blog and it’s associated Facebook page. I’m also a regular signer of e-petitions for causes I believe need my support. I’m certainly not alone and it’s a sign of how the internet has changed the way we live, the way we think of ourselves and how we interact with each other and our governments. My blog and its associated Facebook site is designed to spread awareness of Neuroendocrine Cancer and offer support to people affected or interested in the disease. However, it is also there to help ‘effect change’ alongside and in support of the mainstream Neuroendocrine Cancer organisations across the world. You will therefore be pleased to hear that I’m not inviting you to take to the streets in protest about the lack of attention paid to Neuroendocrine Cancer. There is no need to chain yourselves to railings, face tear gas or throw large inflatable objects at the police 🙂 So, go on……. be ‘disobedient’ and help me ‘effect change’ by raising awareness of Neuroendocrine Cancer and the issues faced by patients who are living with the disease. What do I need you to do?
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I’ve been reasonably lucky with my health over the years, suffering only the usual common ailments. I was slightly asthmatic as a child but this seemed to disappear when I left school going straight into military service. They say an army marches on its stomach… only partly true but the military did look after my health with regular check ups. I think the only medical emergency I had in my 29 years in that wonderful organisation was being knocked out in boxing training aged 16! When I left the military in 2001, I was fortunate to benefit from free health insurance at my new employers. However, I was now at an age where there was a bit of ‘wear and tear’ and bits were starting to fall off 🙂 I had a very pleasant experience fixing a tennis elbow problem in 2002 and then shortly after a 6 week recovery from pneumonia in 2003. The health insurance was handy with the former but the latter was handled by my GP (…antibiotics and bed!).
Boom! Neuroendocrine Cancer in 2010. The health insurance was suddenly extremely useful as I was able to get all my hospital ‘in-patient’ stuff in nice en-suite rooms. I’m not saying I had an easy time but the surroundings and resources probably made it more bearable. The ‘out-patient’ visits were always pleasant with nice tea and newspapers to pass the time away in the inevitable wait for the consultant meeting (even in private hospitals/clinics, appointments always seem to be later than published). I also had my Lanreotide injections done at home for 3 years which was extremely helpful.
As you can see from above, my experience with NHS hospitals is very limited. However, from 1 Jan this year, I no longer have health insurance and am now a fully fledged member of the NHS club!
Should I be worried? Not a day goes by without a headline (or several) claiming the NHS is in crisis, bankrupt, almost privatised, doomed……. I’m sure you see those headlines too? So with some trepidation, I set off for my first Outpatient appointment yesterday at NHS Bournemouth Hospital, incidentally only 7 days after I would have been seen (by the same Consultant) using my health insurance policy if it was still in force. I was meeting a Surgeon who was beginning the assessment of a ‘lesion’ in the upper left pole of my thyroid which was recently picked up on Octreotide and CT scans. I reported to reception, was dealt with and pointed in the direction of the Consultant rooms. I noticed the area had a nice looking Cafe and a large TV showing Sky News (heaven!). There was a 20 minute overrun of my designated appointment time but that is less than I normally found in private establishments! Expecting just an exploratory chat, I was surprised to have to undergo a Fine Needle Aspiration (FNA) biopsy and am now waiting on the results. In addition, he will see me in 3 months and suggested this is nothing to worry about. I’m sure he’s right but the biopsy result will still be anticipated.
I didn’t detect any sign of NHS chaos in this hospital, everything went very smoothly indeed – a very pleasant experience.
Good start to my new treatment regime. Well done NHS!
Now to sort out who will be doing my Lanreotide injection……… 🙂
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My plan for this week’s blog was to continue with a surgery theme using the story of a lady who had what was described as the “Mother of all Surgeries” after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog “to cut or not to cut“.
I suggested in a previous blog that ‘Surgery is a gift that keeps on giving‘ and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I’ve had my primary removed as part of a small intestine resection and a right hemicolectomy ‘en bloc’ – plus a bunch of mesenteric and retroperitoneal ‘stuff’. Other metastases were removed at a later date including a 66% liver resection (which included an opportunistic removal of gall bladder for treatment side effect control), 9 lymph nodes removed from my left axillary area (armpit), 5 lymph nodes removed left clavicle area and two hotspots are still under investigation. I’m now under constant surveillance but I’m doing OK …… and I intend to outlive my Oncologist 🙂
However, my experience would appear to be fairly straightforward when you consider the types of surgery some Neuroendocrine Patients with a Pancreatic NET (pNET) have to undergo. These include the ‘Whipples’, ‘Distal Pancreatectomy or ‘Total Pancreatectomy’. These are all long and complex operations which remove numerous organs or parts of organs – and no doubt there are variants of these for unusual scenarios. They are also used in the treatment of more common types of cancer involving the Pancreas (i.e. exocrine based).
Although there are long term side effects from my surgery, I’m gradually adjusting my lifestyle to cope (a work in progress, even after 6 years!). This is mainly through (not too drastic) diet adjustments and nutritional level surveillance. My other weapon is to learn as much as I can about my disease in order that I can learn how best to live with the side effects of both the cancer and the treatment. Despite the extent of my surgery (to date) and my cancer’s stage, I still consider myself fortunate to have been diagnosed earlier than the average for this disease (….sheer luck) and then had access to what some might describe as aggressive surgery shortly after. I suspect 6 years of ‘Lanreotide’ is also playing a big part.
My experience has given me the incentive to read a lot and occasionally I come across articles about cancer patients who have been treated surgically for very unusual cancers – even less common than NET Cancer. One which recently caught my eye was a lady who had been diagnosed with Pseudomyxoma Peritonei (PMP). This is a very rare condition (1 in every 1,000,000) characterised by the presence of mucin-producing tumours (and the mucin) in the abdominal cavity. There are a number of possible origins of PMP, but the most common source is appendiceal (appendix) cancer. If you’re interested in learning more, further information can be found here.
When I was drafting this blog a couple of years ago, I had been carefully watching the story unfold about the death of respected ESPN anchor Stuart Scott from an “appendiceal cancer”.
The media presented a confusing picture about the exact type of cancer Stuart had and some of you will have seen the debate on social media. It’s amazing how quickly and ‘assumption’ can circulate to thousands of people in a very short space of time. I read conflicting mainsteam media articles and social media posts; some referred to the disease as ‘gastrointestinal carcinoid’ and others insisted that it was unrelated to NETs. As the dust settled, it appears his appendiceal cancer was not a Neuroendocrine Tumor.
On the same subject, many NET patients claim Audrey Hepburn was a NET Patient but this is not accurate, she had PMP.
Back to the Mother of all Surgeries story ………
I was totally amazed by the extent of the surgery the lady had to undergo and wondered how she was going to cope with the side effects. She was clearly an extreme case and many patients are caught early on and treated accordingly. They removed her appendix, large bowel, most of her small bowel, gall bladder, spleen, womb, ovaries, fallopian tubes and cervix as well as most of her stomach lining and navel. Her surgery was described as the “Mother of all Surgeries” and included a 90 minute ‘chemo bath’ (formally known as Hyperthermic Intraperitoneal Chemotherapy (HIPEC)). Interestingly she was originally diagnosed with IBS, a similar scenario to many NET patients. I was also struck by the similarities of some of the symptoms with those found in NET Cancer.
The UK is very well equipped to deal with PMP and HIPEC with two centres in Basingstoke and Manchester renowned worldwide as treatment centres for this rare condition.
You can read more here about this amazing story where the patient had 9 organs removed.
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