Neuroendocrine

Five years

An image showing the sun shining high on a blue sky, with the sea over the horizon and people walking on a promenade by the beach

I am writing this piece at the end of World NET Cancer day, an annual event created to increase awareness of Neuroendocrine (NET) cancers, and to provide a voice to the NET community for improved diagnostics, treatments, information, care and research.

Not all prognoses are equal

Five years ago, I found myself newly diagnosed with Neuroendocrine Cancer and very confused about what it all meant. As I tried really hard to get my head round the impact this disease was having on my life, November 10th 2015 hadn’t yet become an important date for me; being given a five year prognosis sent me into panic mode, I was very scared.

Five years on, I can look back and quantify exactly what Neuroendocrine Cancer has actually done to me. I have had countless procedures, some invasive and life threatening, others less so and so routine that they hardly register in my emotional spectrum.

Two major surgeries to remove some of the cancer, one other to deal with the consequences of the first two.

All the scans, at varied intervals, CT, MRI, PET, and some others which have involved being radioactive for a bit so the radiologists can see the cancer glowing inside me.

I have lost count as to how many times blood has been drawn from me. I have also lost count of the number of cannulas that have been inserted in my arms, hands and wrists; funnily enough, the ones that have gone wrong (three times) I definitely remember as my arm has been swollen beyond recognition and painful for a very long time afterwards.

I have seen the inside of my local hospital so frequently that I often joke with the nurses that they should give me loyalty points. I know this joke will land better with other cancer patients, however the gloom of having cancer is enough to make a person insane, so instead of insanity I choose very dark, snarky humour.

Cancer in a world pandemic

This year has been particularly hard. Whilst a world pandemic has undoubtedly touched everyone in so many different ways, I am not alone in saying that cancer patients on active treatment have had it really rough. I personally spent the months between March and July shielding, not seeing anyone face to face, other than the occasional delivery person who would stand at two metres from my front door whilst I grabbed essentials from my porch. As it was the case for others, the novelty of zoom parties soon wore off.

For those of us who have either an incurable or a terminal diagnosis, the main question remains “are we to live the remainder of our lives in isolation or socially distant from everyone else?”.

Cancer is always on the move

COVID19 stopped the world on its tracks, but of course, cancer didn’t get the memo.

The monthly Lanreotide injections, which I have been having since first being diagnosed, are no longer doing the job of holding back the cancer; this has been the case for nearly eighteen months. A further Ga-68 PET scan in July confirmed it. It has taken all of that time of toing and froing with my consultant, and other specialists who look after me, to reach the consensus that I need an alternative treatment. And so at the end of November I will get my first dose of PRRT (Peptide receptor radionuclide therapy)

I have been given a long list of side effects with the caveat that I might get some, all or none. One thing that has been said with certainty is that I will be spending a lot more time in self-isolation over (more or less) the next six months. I can safely say I am not looking forward to it.

I will be using the blog more regularly once again as a way to keep those further afield updated. Please go easy with the questions as I find it overwhelming at times to process what is happening to me and in turn put it into words that will make sense to the rest of the world.

Keep safe x

Enamoured 

I am not enamoured
Of hospitals, syringes, medicines
Or stinging
Or of the smell of disinfectant
On wounds slowly healing

I am not enamoured
Of you fucking cancer
As you slowly
Robbed
The father
Of my children

I am not enamoured
Of you fucking cancer
As you stealthily attempt
To take me away
From my children

I am enamoured
Of laughter
Of loving, of living
Dancing, prancing, kissing
Cuddling, hugging, thinking
Smooching, running, writing
Breathing

I’m not enamoured
Of you
Fucking cancer

I am enamoured of
Sandy toes, tangled hair
The smell of sea air
The sound of waves
The taste of salty kisses

I am enamoured of skies
The rumble of thunder
The flashes of lighting
The giggles of children

I am enamoured of chatter
Natter, gossip, friendship
Of a hot cuppa
Of companionship

I’m enamoured of my life
And you fucking cancer
Cannot defeat me

Counting days

10k medal

Today is an awful day for me. It’s one year exactly since I was diagnosed with Neuroendocrine cancer.  Just two days before I had run my first half-marathon surprising myself by completing it a good 13 minutes faster than my predicted time. So as you can imagine a cancer diagnosis was not what I had expected to receive when I was asked by the consultant endocrinologist to return to the hospital two weeks after a CT scan.

Since that fateful Tuesday all I ever  seem to do is count the days till the next appointment, or the days since I last felt well, or the days till the next injection. My life now revolves around meticulously recording symptoms and side effects so next time I see my oncologist or specialist nurse I can discuss at length whether the treatment is working or not. But the truth is no one knows, the truth is I must wait until the next scan where they will be able to see or not whether the cancer has spread. There’s no guarantee and sometimes the severity of the side effects is such that makes me ask myself is it really worth it? How much time is all of this actually buying me? I have been told many times “there’s no cure, your cancer is advanced”.

Having seen my husband suffer through so much invasive and debilitating treatment, I don’t think I want to go through yet more unnecessary pain and discomfort, nor do I want to be spending precious time away from my children whilst undergoing yet more treatment. I want quality of life.

I’ve had a whirlwind of emotions brewing up in the run up of this anniversary, compounded by my having to drive my eldest daughter back to her university accommodation earlier last week, as she prepares to return to the world of academia after a well deserved break following Michael’s death. I was able to keep it together all the way there, however once I was on the way back I cried constantly until I parked my car at home. I was emotionally drained for a few days after that.

At the end of last week I endured a heart wrenching 24 hours period when I realised I had lost my engagement and Michael’s wedding rings. I have been wearing his ring on my ring finger together with my engagement and wedding rings as well as one his ancestors wedding ring. That’s four rings on one finger. Luckily after posting a public appeal on Facebook a local couple contacted me to let me know they’d found them and I was reunited with my rings 24 hours after realising I had lost them. After this experience I’m now looking into how I can get four rings customised into one or two rings to make sure I never go through this horrible experience again. If you know of a jeweller in the sunny South of the UK who’d be up for the challenge, please let me know by commenting below, thank you.

img_8275As a last-minute decision I entered the 10k race part of the Bournemouth Marathon Festival. My aims were to:

  • test my body
  • complete the race injury free
  • run the distance without stopping
  • get round in 63 minutes

Well I can report I achieved three of the four aims. I ran the whole course, non-stop in 64:50 minutes and I’m injury free, I’ve got the medal to prove it too!. All of this just five months after surgery. I believe these are all good signs that my body will be able to cope with the 10 miles on 10 November; I’m counting the days.

Finally today has also been a reminder of how awful this grieving process is.  If the only way people can understand grief is to experience the loss of a loved one I wish I had a superpower that allowed me to stop anyone ever to have to go through it.

Last night the kids started complaining that he house felt cold, well of course it’s october and whilst the days are still mild, the nights are definitely not and as soon as the sun sets a chilly air enters our home.  So I started up the central heating system.

There’s a process involved with it, which Michael used to be in charge of, mainly by calling a plumber who would spend a good hour going up and down our attic, up and down our staircase, checking each radiator, firing up the boiler, turning off the boiler, etc, etc, etc. Michael (or I) never bothered to check what the plumber did, just paid the guy and off he went never to be seen again for another year.

Well this year I realised perhaps I had left it too late to call anyone in, they’re all already fully booked and I’d probably have to wait at least a week before someone could come in to get the heating going. Mmmmhh… maybe it was time to take action.  I bled the radiators, I knew that was an essential, I also knew that if I shut down all the radiators but the one furthest from the boiler any air bubbles would travel to the one still switched on and it would be easier to get the air out.  Well this radiator happens to be in the upstairs bathroom so cue frantic running up and down the stairs, checking the boiler, bleeding the radiator, switching on, switching off, back upstairs, back downstairs, whilst kids complaining it is still cold mummy!

Last night I was knackered, it was 9:30 pm, I hadn’t yet had a shower after cooking dinner, coming back from a run, feeding the children, the dog had yet to be walked, aaaaarrrrgh! so I gave up, but not for long.  This morning, I gave up my yoga class as I was determined to get the heating going before the children came back from school.  I did some research, Mr Google and Mr YouTube are lifesavers, found out that probably there wasn’t enough water in the system, checked the tank, aha! that’s why the plumber goes in the attic! Tank refilled, I proceeded to repeat all of last night’s actions until tadah! the heating started working.  Hence the reason I can sit comfortably in the study to type this post.

However at the end of this (minor) ordeal I sat down and cried, I suddenly missed Michael so much I ached all over.  He would have been so proud, he would have given me a big hug and a kiss and would have said that because I had saved him £40 on call out charges, he’d take me out to dinner or go out and get me flowers, or both.  I miss him, it hurts.

Instead I’m off to the hospital to be reminded once again how ill I am, to be given a very painful injection, which purports to be keeping the cancer at bay, to start counting the days until I must have the next one.

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

Grief with life in between

It has been a while since my last post, a lot of things have happened:

So this post is going to be longer than usual.
The thing with grief is that it is deceiving; it has often happened since Michael’s death when I think to myself that I am coping so brilliantly that I wonder what is it that people
complain  so much about the grieving process. And then as if to make sure I do not get so cocky about my own ability to overcome
adversity, POWit hits me squarely on the forehead and floors me, without notice, rhyme nor reason.

It is the smallest of things such as the fact that four years ago we were all in London enjoying the Olympic Games together as a family of five people, cheering on the amazing athletes and marvelling at their ability to perform at their sport making it look simultaneously easy and extremely difficult at the same time.

This time the Rio Olympics have brought home how different our lives are, without Michael here to watch the whole range of events, the little enjoyment I have experienced is always tinged with the acute sadness of his absence.

Meet Marlo, our puppy

A few months before Michael died, we were at the beach enjoying an unusual spell of warm weather; it was October 2015.  As we watched people walk by with a whole range of different dog breeds both youngest daughter and I begged him to agree to us getting a puppy.  It had been a recurring conversation whenever we went out for a walk, to which Michael always replied no; however this time the conversation ended differently, he said: “when I am gone, you can get a puppy, you can even call him Michael if you like”.

The night Michael died, our youngest daughter had been staying with friends.  She did not like visiting the hospice, as in her words “it was a sad place”.  I telephoned with the news that Michael had died, so it came down to our friends to tell her, after the initial shock and sadness, daughter reportedly said “it is ok as we can now have a puppy”.

IMG_7209So late in July we travelled to Brittany in France to collect our beautiful puppy, Marlo, he is a Brittany Spaniel.

He is the kindest, most placid and affectionate creature, very quickly establishing that I am the leader of the pack, to be obeyed and followed everywhere I go.  He manages to capture people’s attention when we are out walking by just looking at them with those beautiful puppy eyes.

He is a very quick learner (I have the dog trainer’s word on this one) and so far very well behaved when out and about; he is also exemplar at home, except when it comes to the sofa, what is it with dogs and sofas?

A birthday without daddy

So youngest daughter turned 12 in July.  We had agreed that Marlo would be her birthday ‘present’; however there had been discussions as to what she would like to do as a birthday celebration.

When it came to it she decided she did not want any fuss on the day, no birthday cake, no special event.  I understood how she felt.

I reached my 44th birthday this June and a combination of my birthday falling on Father’s Day and three weeks after major surgery, meant that I did not want any celebrations and instead wanted to scape as far away as possible from everything that reminded me that the love of my life is no longer here.

Whilst my daughter was unable to express her feelings about her first “without daddy” birthday , I could read the pain in her eyes, so we did exactly as she asked, nothing.

Time flies, yet stands still

On August 15th marked seven months since Michael’s death.  For some reason youngest daughter wanted me to watch “Miss You Already” which you might want to avoid if you or someone you love have been affected by cancer.  Of my three children, she has found it the most difficult to talk about her feelings during her daddy’s illness and after his death, so it took me by surprise that during the film she started talking about how chemotherapy had affected him, how she remembers the hospice and the effect his death has had on us.  The film acted as a catalyst for her; as I sit here analysing the experience I guess it became a non-threatening form of dialogue for her.  I was also surprised by how it was me who could not stop the streaming tears and had both the dog and my daughter comforting me.

I shed tears for Michael everyday, I am astonished by how many tears I can still produce and how very small things can set me off.  For example as we started out on our trip to France to collect Marlo, I had packed the children and our luggage in the car, stopped to get petrol and made sure I went through the “Michael travelling checklist”, money (tick), passports (tick), tickets (tick).

As we left the outer boundaries of our town the song we played at his funeral “Somewhere Over the Rainbow / What a Wonderful World” by Israel Kamakawiwo’ole came on the radio, cue streaming tears.  I couldn’t help but feel both his absence and his presence, as if this was Michael’s way of saying that what were about to do was ok, but of course he was not coming with us.

Every anniversary, landmark, event in our lives now has a bittersweet taste to it.  We are, as a family, doing things we did not do with Michael and it feels wrong and out of balance, an integral part of this finely tuned machinery is missing.   At times it feels as if the chapter of our lives together was somehow a dream that I made up, and then I look at our children and realise it couldn’t just have been a dream.

Running again

On July 30, nine weeks after major surgery, I ran at my local parkrun which are organised freeIMG_7930, weekly, 5km timed runs around the world. They are open to everyone, free, and are safe and easy to take part in.

I am a stats mad type of runner and keep a record for every run I do.  My personal best for 5km stands at 28:07 and it’s nearly a year since I set it.  Of course I was under no illusion that getting back to running after surgery was going to be easy and did not expect to even be able to complete the run, so I was very pleasantly surprised and proud to have completed the 5km without stopping in a time of 38:53.  I have been running twice a week since returning and have managed to get my time down to 32:48 in the space of three weeks.  I hope improvements will continue and aim to increase the frequency to three times a week very soon.

Sadly a side effect of my treatment is that my energy levels and reserves are depleted very quickly to the point that a couple of hours of normal activity, nothing strenuous, means I need to take regular naps during the day, so after running I am good for nothing for about three to four hours.  I am hoping this will eventually improve and I am in constant discussions with my consultant and specialist nurse as to the best way to manage.  I do not want to give up exercise or running, it makes me feel better in my head.

On the road

Oldest daughter is legal to drive, it was not easy and it took several attempts for her to pass but it is finally done.  Not that she is in any hurry to buy a car as to be able to insure young drivers in the UK a mortgage is required.

She had been practising her driving in Michael’s car which I had kept for that sole purpose, however as she prepares to return to university to finish her degree it is both impractical and financially non-sensical for me to keep hold of two cars, so “Stickers”, as it is affectionately known by us, has to go.

 

I didn’t choose bravery 

I belong to two private online forums, one for people diagnosed with cancer in their 20s, 30s and 40s, Shine Cancer Support, the other for people aged under 50 who are grieving the death of their partner, WAY Widowed and Young.

I’m yet to find one online forum combining both criteria, young cancer patient and young widow; I’m sure I’m not the only one going through the same circumstances but perhaps it would be too sad to find myself in an even smaller minority. [UPDATE September 2017]  I have since discovered that at least seven other young widows are going or have undergone cancer treatment, either whilst caring for their dying husband or since windowing…an exclusive club indeed.

In these forums we share our experiences in a safe, supportive environment with other people who are going through similar circumstances in their lives, without prejudices or fear of recrimination. It is remarkable how similar some of the discussions are in both forums. One that comes up often, and which seems to leave a lot of us riling, is people in general telling us how brave we are for carrying on with our lives, for still being able to function and I guess for not “having lost the plot”.

I want to dispel a myth, I didn’t choose bravery. The circumstances of my life just happened, there was no plan, heck who would plan such a life? Anyway, there was a time when I did have a neat little plan, an expectation which did not turn out as I’d thought.

But I digress, back to bravery.

No I am not brave.

Brave are the refugees fleeing war-torn countries, risking life and limb in the hope they will carve out a better life for their families in a far away land. Brave are the doctors and nurses who risk their health to care for sick people wherever their vocation takes them. Brave are those who speak out against injustice whichever form it takes.

I am sure there are many more worthy examples of bravery that you can think of.

No, I am not brave.

I continue with life as best I can. It is not perfect, and if ever you see me and have the compulsion to say “you are doing so well!”, please know it is just a facade, an illusion, the mask that I must wear everyday to make sure I am not left behind, because life still goes on. This is the performance I have become accustomed to so that I can make it through each day. As the saying goes, fake it ’till you make it.

This does not mean I never take the mask off or that I don’t stop performing, oh I do, everyday! And when I do, those around me get to see how brave really I am not. But I have had to plough through because there is no choice, because the world does not stop, because not carrying on would be cowardice, and that’s definitely a label I am not willing to carry.

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.