NETs

I’m a zebra

Hello and welcome to my latest post in which:

  • I explain some of the side effects of my treatment
  • There’s a preview of what I’ll be wearing to run #10MilesForNETs, and
  • I say thank you to those who have contributed to my fundraising.

 

I am not drunk, promise

I have been trying to clock as many training miles as possible in preparation for #10MilesForNETs but my efforts are being hampered by some nasty side effects from my latest Lanreotide injection, the main one being severe fatigue.

Severe fatigue for me means that I wake up in the morning feeling as if I am drunk. Now if you don’t know me you would probably assume that I’ve been on the bottle and therefore shouldn’t be complaining about the side effects of indulging in a drink too many; however the truth is that I hardly ever drink. I gave up drinking wine of any kind over ten years ago as even a drop left me feeling awful and nauseated. I can tolerate real ale and vodka but in small quantities, typically no more than two in one evening and definitely no more than once a week.

Severe fatigue also means that after waking up I have a two to three hours window within which I have a reasonable amount of energy to do essential things such as showering and getting dressed, preparing and eating breakfast, seeing my children off to school, feeding the dog, tidying up around the house, taking the dog for a walk before I collapse in a heap and need around two to three hours of very deep sleep to recover, and then the whole cycle starts again in the afternoon with children back from school, evening meal to be prepared, driving the children to the different activities, walking the dog, paperwork and bills to sort out, food shopping, before I start flagging again and need to sleep and it is not bed time yet! Sometimes I push myself beyond the point of exhaustion and go for a run even though my whole body is screaming STOP!!!

Some of the other side effects are not very pleasant to describe here but it involves getting acquainted with the colour of the walls and tiles in my bathroom, if you get the gist.

Hoofbeats

And all of this because I am a zebra. Whatdayamean?! I hear you shout, a ZEBRA?!

Let me explain. In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers.

Medical students are thought to assume that the simplest explanation is usually the best, in other words, it is usually correct to look for common rather than exotic causes for disease.

Doctors learn to expect common conditions, hence the phrase
“If you hear hoofbeats, think horses, not zebras.” (NETCancerDay.org), so there, I am a zebra. I always knew I was different!

This is the reason why I will be wearing all over zebra print when I run the 10 miles on 10 November and you lucky people get to have a sneaky preview of my outfit.

I might be biased but, I think the lovely Jackie over at Festival Running has excelled herself by making an outfit that will make me look stylish whilst I’m out there pounding the pavements.

Thankyou, thankyou, thankyou

My fundraising efforts have taken off and I am really grateful to those of you who have contributed; a thousand thank yous coming your way.

Woman holding pink flower
A thousand thankyous

I have also had offers of people wanting to join me for part of the route, which I really appreciate as well as it would make the run much more enjoyable.  Others have offered to be at the start  and finish lines and I have also had offers of cake! It all helps.

The charities I have chosen to support are not very big, they do not have the benefit of huge budgets to spend on advertising campaigns and they do things which make a real difference to patients’ lives.

Every penny donated is put to good use and not spent on running costs, so your donations really make a difference.

If you haven’t yet had a chance to donate there is still plenty of time visit www.justgiving.com/teams/10MilesForNETs

To find out more about the work the charities do, please visit:

NET Patient Foundation: www.netpatientfoundation.org

PLANETS: www.planetscharity.org

Poole Hospital Charity

 

 

The route

So here’s the route for 10 Miles for Neuroendocrine Cancer.

There are three versions:

 

Static version

You might be able to right click and save the image to your device or print it

Screen Shot 2016-08-30 at 22.06.06

Dynamic version

I used MapMyRun© to create the route and thankfully they provide the code to embed a link on this page. Click here to view it

Step by step description

If you want to cheer me on, or join me for a section of the run this is probably your best option.  I will be running at around 10:30 min/mile pace (or 6:30 min/km) or slower at times.
Start 11:00 am BOURNEMOUTH HOSPITAL
0 mi Head east
0.02 mi Turn right
0.06 mi Enter the roundabout
0.06 mi Head southwest on Deansleigh Rd toward Castle Ln E/A3060
0.14 mi Continue onto Chaseside
0.14 mi Head southwest on Chaseside
0.2 mi Enter the roundabout
0.21 mi Head southwest toward Chaseside
0.22 mi Exit the roundabout onto Chaseside
0.42 mi Head southwest on Chaseside toward Cowell Dr
0.43 mi Turn left onto Cowell Dr
0.44 mi Turn right Destination will be on the left
0.46 mi Head southwest
0.71 mi Head southwest toward Harewood Ave
1.12 mi Head southwest toward King’s Park Dr
1.47 mi Head southwest toward Ashley Rd/A3049
1.48 mi Turn left onto Ashley Rd/A3049
1.64 mi Turn right onto Tower Rd
1.65 mi Head west on Tower Rd toward Barham Cl
1.79 mi Turn left onto Palmerston Rd
1.85 mi Turn right onto Borthwick Rd
1.85 mi Head southwest on Borthwick Rd toward Churchill Rd
1.97 mi Head southwest on Borthwick Rd toward Walpole Rd
1.98 mi Turn left onto Walpole Rd
2.04 mi Turn right onto Carysfort Rd
2.15 mi Head southeast on Hamilton Rd toward Christchurch Rd/A35
2.31 mi Turn right onto Christchurch Rd/A35
2.45 mi Head southwest on Christchurch Rd/A35
2.45 mi Turn left
2.55 mi Head southeast
2.74 mi Sharp right
2.75 mi Head east
2.8 mi At the roundabout, take the 1st exit onto Undercliff Dr
2.83 mi Head southwest on Undercliff Dr toward Toft Zig Zag
3.38 mi Head west on Undercliff Dr toward E Cliff Zig Zag
4.26 mi Head west toward W Undercliff Promenade
4.27 mi Turn right at W Undercliff Promenade
4.27 mi Turn left toward St Michael’s Rd
4.57 mi Continue straight onto St Michael’s Rd
4.6 mi Head northwest on St Michael’s Rd toward W Hill Rd
4.6 mi Turn left onto W Hill Rd
4.63 mi Slight right
4.67 mi Head west
4.81 mi Head west
4.82 mi Turn right onto Durley Gardens
4.91 mi Turn left onto W Cliff Rd
4.92 mi Head west on W Cliff Rd toward Chine Cres
5.46 mi Head northwest on W Cliff Rd toward W Overcliff Dr
5.62 mi Turn left onto Alum Chine Rd
5.76 mi At the roundabout, take the 2nd exit onto Western Rd
5.98 mi Head west on Western Rd toward The Avenue/B3065
5.99 mi Turn left onto The Avenue/B3065
6 mi Turn right onto Western Rd
6.3 mi Turn right
6.3 mi Head south toward Western Rd
6.31 mi Turn right at Western Rd
6.34 mi Turn right onto Leicester Rd
6.54 mi Head northwest on Leicester Rd toward Bury Rd
6.97 mi Turn left onto Canford Cliffs Rd
6.97 mi Head north on Canford Cliffs Rd toward Leicester Rd
6.97 mi Turn left onto Penn Hill Ave
7.56 mi Continue onto Woodside Rd
7.7 mi Turn right onto Sandecotes Rd
7.71 mi Head northwest on Sandecotes Rd toward Balmoral Rd
7.75 mi Turn left onto Balmoral Rd
7.86 mi Balmoral Rd turns slightly right and becomes Windsor Rd
7.88 mi Continue onto Osborne Rd
7.96 mi Head northwest toward Alton Rd
7.98 mi Continue onto Station Rd
8.22 mi Head northwest on Station Rd toward Commercial Rd/A35
8.23 mi Turn left onto Commercial Rd/A35 Continue to follow A35
8.74 mi Head southwest on Parkstone Rd/A35 toward Sandbanks Rd
8.76 mi Turn left onto Sandbanks Rd/A35
8.77 mi Turn right onto Parkstone Rd
8.79 mi Sharp left
8.82 mi Head northwest
8.83 mi Sharp left
9.03 mi Head southwest
9.3 mi Head southwest toward Kingland Rd
9.45 mi Slight right onto Kingland Rd
9.5 mi Enter the roundabout
9.5 mi Head northeast on Mount Pleasant Rd toward Seldown
9.55 mi Slight left to stay on Mount Pleasant Rd
9.56 mi Continue onto Seldown Rd
9.64 mi Head northeast on Seldown Rd toward Parkstone Rd
9.69 mi Turn left onto Parkstone Rd
9.79 mi Head west on Elizabeth Rd/B3068 toward B3068
9.83 mi Turn left onto Elizabeth Rd
9.84 mi Head north on High St N/B3068 toward Shaftesbury Rd Continue to follow B3068
10.01 mi FINISH (approx 13:00) – POOLE HOSPITAL

10 Miles For Neuroendocrine Cancer

10 November is Neuroendocrine Cancer Day and to mark it I will be running ten miles between my two local hospitals dressed in zebra print to raise awareness of Neuroendocrine Cancers and money for three charities, PLANETS, NET Patient Foundation and Poole Hospital Charity.


I would really welcome your support either by sharing this post as widely as possible or by putting your hand in your pocket to donate as much or as little as you can through www.justgiving.com/teams/10MilesForNETs

Surviving surgery 

So I made it!

I’ve undergone major surgery and have come through the other side.

I’ve had surgery in the past in fact six times in total, each one as difficult as each other and recovery time was always far too long for my liking. But to be honest the term “major” does mean that.

And whilst improvement in modern surgical techniques means I’m home after just ten days in hospital, it still remains that, as my surgeon put it, major surgery, and particularly the type I had, carries around a five percent chance of death. Ok that means that a lot of people make it but statistics don’t care whether you’re number one or number 100 in the queue, it can still be you who doesn’t make it.

My major surgery involved nine hours, two surgeons (bowel and liver), a specialist neuroendocrine anaesthesist, and all the other theatre staff, followed by six hours in recovery and 48 hours in a high dependency unit where I had one nurse assigned to look after me all the time. I had some machines attached to me monitoring my breathing, heart rate and blood pressure; others delivered essential pain relief, medication to stabilise my cancer (it’s temperamental) antibiotics, all of which I tried really hard to record in my drug-addled, sleep-deprived brain so I could recount it in this post.

I’m pleased to report however that within 24 hours of surgery I was helped out of my bed and was able to sit in an armchair for 43 minutes, and repeated it a day later, this time for four hours.

I’m battered and bruised, in a lot of pain, with more wounds than I care to count. But I’m happy to be home, in my own room, bed and clothes (no more hospital gowns).

I’m totally dependent on others doing everything for me. I can use the toilet by myself and that’s about it, for now*. I can walk 300 metres with a walking stick, although I surprised myself and everyone else by climbing the stairs in my house in one go but that was as much physical exertion as I could take.

The pain gets me down and I do have the right stuff to manage it, but it’s early days. At least I got a good night’s sleep for the first time in ten days.

*not quite true, I can clean my teeth, brush my hair and get in and out of a nightdress. Small mercies!

My cancer diagnosis

Originally posted on Facebbok 18 November 2015

Hello everyone…. There are some news I must share with you; some of you already know.

Those of you whom I haven’t managed to tell you in person I’m really sorry that you’re finding out this way…

On 6 October 2015 I was diagnosed with Neuroendocrine Tumours (NETs) a cancer in the small intestine with metastasis in the liver and lymph nodes.
I started treatment straight away and have been told there’ll be surgery (January/February) to remove the primary tumour and debulk the liver. Further treatment will be needed after surgery but I’m focusing on the here and now.

Most of you know that in the past 2 years I have accomplished great things, marathon, half marathon, 10k, triathlon… As well as raising a considerable amount of money for charity.

Running keeps me sane. My oncologist has encouraged me to carry on running and I intend to do so; although it’s frustrating as I’m starting to slow down and not able to run long distances any more.

I don’t believe in miracles and it’s been a long time now since I lost my faith in the existence of a deity or the purpose of religion; to those you who do have faith I hope you’ll still be my friend after such a revelation.

I understand how cancer behaves because of the experience we’ve had as a family with Michael’s own cancer. I’m also a realist but an optimistic one.

I trust my oncologist and other consultants have my best interests at heart; I also trust their knowledge and experience. I also want you to know that this is not a fight, nor a war, it’s neither a journey, I’m not a soldier and I have nowhere to travel… I’m a pacifist so the language of war does not inspire me.

People ask me what can they do for me and my family… This is a difficult one to answer, sometimes we ourselves don’t know what we need. But one thing is certain please do not become strangers; I might not always be able to reply to messages, it takes a lot of energy just to keep up with normal life, but please do not give up on us!

I also intend to have as much fun as I can, life is hard enough as it is, I intend to laugh, dance and jump for joy at every opportunity.

I’m signing off now must catch some 💤💤💤😴😴😴 have a big hug from me.

Aside

imageSo you know what they say, “lightning doesn’t strike twice…” Well, it’s a lie, or should I say a myth?

I was born in Venezuela where, by the Catatumbo river, lightning strikes not just twice but up to 280 times an hour… You don’t believe me? Read all about it and watch the spectacle.
So now I’ve got your attention here’s my story.

On 6 October 2015, two days after completing the Bournemouth Half-Marathon, I was given a diagnosis of cancer, more specifically Neuroendocrine Tumours (NETs) in the small intestine with metastasis (spreading) to the liver. The symptoms I had felt for the previous nine months were so common that my doctors were baffled, and to be honest so was I.

Up to that time I had been supporting Michael, my husband, who 30 months before had been diagnosed with advanced bowel cancer. You see, lightning does strike twice… Michael died on 15 January 2016; I now know he found it difficult to cope with the news of my diagnosis.

So this blog is about living, in every sense of the word, with cancer. I’m trying my best to stay alive for our beautiful children.

The views I express here are my own, unless of course I’m quoting another source in which case I will make sure to acknowledge it.

Thank you for reading,

Marbellys

When lightning strikes…twice!