Don’t tell me how to love

For I have loved before
I have learned
Love has many forms
Many tastes
Many shapes
Many ends

Don’t tell me how to love
Love is magnetic 
Poetic
Ugly
Visceral 
Life-force generating

Don’t tell me how to love
The scars in my heart 
Make it fragile
My heart which is bleeding 
Hold it kindly
As it’s healing

Don’t tell my heart
Who to love
It has seen many storms
Many rainbows 
The sun rise
The sun setting 
So it knows that this love
Is not eternal 

Don’t tell me how to love
’cause you might meet
Not my understanding mind
But my incandescent ire

And I will love
With passion 
Red hot desire
Forbidden, illicit?
Who are you to enquire?

Space

I need space?
Space to read
Space to laugh
Space to breath
Space to dance

I need space?
Or so they say
But when it comes
It’s cold
It’s grey
Uncomely

I need space?
Space, space, space
I don’t know
If I want it
But so it seems
I must
Abide it

I need space?
To toil?
To think?
To waste?
To expand?
To dream?
To swim?
To cook?
To bath?

I need space?
But it is lonely
Space
Without you

I need the space
Right here
Holding hands
Standing tall
Besides you

When you look at me 


When you look at me

Tell me what do you see when you look at me?
Do you see my skin, my scars, my beauty
Or do you see
A woman who has loved,
who has hurt, who has lived?
Without regrets, without resentment

Or do you see
The shape of my legs,
the width of my hips?
Tell me what do you see?
When you look at me

Do you see my hands
that have toiled, created, caressed?
Or do you see my mind
Troubled, agile, bereft
Tell me what do you see?
When you look at me

Do you see the child bearing body
Or do you see my heart
Expanding, accommodating, loving
Tell me who do you see?
When you look at me

Wings in my heart….

Today is 18 months since Michael died….it’s really hard to type these words, I haven’t been able to actually utter them in public, only one person has heard me say them (if you’re reading, you know who you are).

I have cried several times today; whilst not as intense as the first few hours, days, weeks or even months, the pain of the last 18 months of his absence is indescribable. My life, and the person I am today, has been irrevocably shaped by the 18 years I spent with Michael by my side. We moulded and changed to fit in with and compliment the other to the point that when he died I felt as if one half of my body, my identity, my being had died with him. I can safely say that, for at least the first year, I didn’t know who I was anymore, I was lost in a boundless, shoreless sea, constantly swimming against a tide that was forever changing, whilst at the same time trying to keep my children safe from drowning; it was exhausting.

I have encountered, at various stages of my grieving process, boundless kindness, the type that made me weep because I didn’t feel worthy of it (yes, grief has the ability to strip you off your self-esteem and sense of worthiness). If I should draw a positive aspect of grieving, this has certainly been one for which I am grateful because in the process some unbelievably amazing people have entered my life and made camp in my heart, and I have no intention of letting them go. I have also experienced deeper conversations and connections with people in subjects as varied as what is love, and whether it is fair that the UK is set on leaving the European Union; whilst not all conversations ended in agreement they have been all mind expanding and welcomed; keep them coming.

I have also faced criticism, judgment, and downright negative comments from people who, in their ignorance of what grieving can really do to you, have uttered the most unhelpful, unkind, and hurtful words I could ever imagine, and definitely didn’t need. I truly believe they did not intend nor understand the pain those words caused me. This experience has taught me to live by the maxim:

Before you say something about a person ask yourself:

  • Is it true?
  • Is it good?
  • Is it useful?

Socrates

So with this in mind, I set to justify my last paragraph, because admittedly it does not meet all the three criterion Socrates set.

It is true that the words and actions of some people I have encountered in my grieving journey have hurt me and have caused me to retreat into my cave licking my wounds.

It is not good that I am publicly decrying the words and actions of those people, although I am not naming them individually, I am not narrating specifics here, and would never do so, I am doing this because I believe it to be useful, to me at least, but hopefully to others too.

I will explain.  The person who is grieving the death of a loved one, is temporarily (and for an unspecified length of time) taken into a warped planet where all societal rules of common sense, politeness and normality are suspended and replaced by a warbled mass of confusion, pain, anger, desperation and hopelessness wrapped in barbed wire; imagined trying to escape that planet to get back to earth!  First of all it takes an insurmountable amount of strength and courage to want to escape, second when one has gathered the strength and /or courage, every time one tries to escape, one gets caught in the barbed wire, lashing the already lascerated skin. So next time you encounter someone who is grieving, make sure to either be prepared to speak through the barbed wire so the person doesn’t feel they have to jump through it, or get yourself really big wire cutters, cotton wool dressings and a big pot of kindness salve with you to apply to their wounds. They’ll need it and will be forever grateful.

Thankfully, I encountered many more kind people with big wire cutters and the most magical kindness salve, than unkind people.

These last 18 months have forced me to develop and use tools and skills I didn’t know I possessed or even thought existed. I have had to push through physical and emotional pain, turmoil, and sadness. I have had to re-assess my priorities in life, I have had to see my life’s own script being re-written with seemingly no control whatsoever as to the plot or the characters within it; but most of all I have had to learn to let go, to live each day as it comes, to grab onto every little moment of joy because I don’t know when the next one will come along, and to trust the journey.

There have been moments of utter sadness and desperation, but as time is passing I have learnt to live with the Michael shaped hole which is slowly becoming a scar in my heart, his mark forever there to be seen.

And as time is passing my children are also learning to live with joy too; continuing to develop into kind, rounded individuals, constantly challenging me as their only parent. I often find myself asking “how would Michael deal with this situation?” and actually voicing it to my children…. the truth is that there would have been a discussion between the two of us which would invariably end up with him saying “you seem to have it all under control, gorgeous” I miss that.

Their academic, sporting and social achievements have been many and as a proud mother I can probably write a whole essay enumerating them, but I won’t bore you with those. The one thing I am proudest is of seeing them, having had the roughest 18 months, pick themselves up, dust themselves off and walk with their heads held up high, whilst being aware of the world around them being kind, positive, polite, respectful and above all happy, it makes my heart swell with pride.

I am continuing to run as often as my body allows it and fitting it around my continuing treatment, combined with nearly every day yoga practice, I can see and feel the benefits. My body is coping with and recovering from treatment much better, my sleeping, eating and emotions are in balance and I’m managing to control my body weight. Today I ran my fastest 5 km ever, officially 25:44 (and came third in my age category!)…. as I was running every step was dedicated to Michael and the people I love who I believe give wings to my heart.

Those wings have recently been strengthened by a new special person entering my life and making me believe that it is possible to love again after widowhood. Eighteen months ago I would not have believed that my heart would have the capacity to heal and expand to accommodate a new love again; well today I know it’s possible. Loving again at the age of 45 feels no different to what it felt to love as a teenager, only now I have the life experience behind me which makes me more aware of making sure I grab every moment of joy, every smile, every word said, every moment spent together, and enjoy it. If you are reading, thank you for coming into my life, for accepting me, my past, my present and my uncertain future, and for loving me just as I am.

I now look at the future, which is in no way certain or without challenges, and I am not afraid because I have wings in my heart.

And still I rise…

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll rise.

By Maya Angelou

I am painfully aware that Maya Angelou’s poem is all about the African-American Civil Rights struggle, and would never want to fall in the trap of cultural appropriation to make a point, after all I have not had my dignity and rights as a human being thrashed or denied … nevertheless her words resonate so much with me as a woman, the defiance, ever rising against adversity and so the reason for the quote.

My blogging has diminished as my living in the real world has increased… a lot has happened since my last post, some events I am happy to report here, others will have to wait a little before they make it to the blogosphere.

Firstly, I am aware that I kept quiet a very serious event which took place on 11 November 2016; it has taken me all this time to process what really happened and to absorb it.  So now I am ready to talk about it more openly.  I ran 10 Miles for Neuroendocrine Cancer on 10 November 2016; as it turned out I got lost at the beginning of the run and ended up running a half-marathon instead.  I felt great at the end of my run as I had a lot of support from friends, people from the three charities I was fundraising for and staff at Poole Hospital.  I finished the day on a high.  Nevertheless early in the morning of 11 November I woke up in excruciating pain and was rushed to hospital with a suspected bowel obstruction, which after five days of investigations, tests and scans turned out to be a perforated small intestine.  Thankfully the consultants and nurses at Poole Hospital were amazing and took care of me with expertise and kindness. I was looked after by the Intensive Care Unit and after a total stay of 15 days I was home recovering from the second major surgery in six months.  Needless to say this was too much for my body to handle and I have only begun to feel myself again in the last couple of months.

I also had some of my closest friends step in and step up to support me and my children (and the dog) in what were really traumatic circumstances.  I am forever grateful for their generosity in time and effort as well as their love for us.

According to my consultant, what happened to me was just sheer bad luck, in no way linked to running, unpredictable and unpreventable.

There are unpleasant side-effects to this latest surgery, some psychologycal, others physical, all manageable but not without challenge.  I continue to see a counsellor on a regular basis as I have been doing for the last four years.  She is a very supportive, professional and intiuitve woman, who by now knows me so well that all I have to do is enter the room and she can guess my mood without me uttering a single word.  She’s a treasure to me.

So a little over six months I am running regularly again, getting faster and actually enjoying it.  Today I set a new PB (personal best for the non-runners) at my local parkrun of 26:39.  I am absolutely delighted to say the least as only in my wildest dreams did I ever imagine runing 5Km this fast.

In the meantime, my children continue to delight and surprise me with their maturity, their kindess and ability to just go with the flow.

Eldest daughter is in the middle of her final exams…. complete social media blackout, I keep sending her the most positive of my thoughts and energy which I hope go a little way in helping her get through this latest stage of her studies.

My son is now a fully fledged army cadet, an activity he is relishing and taking on with gusto.  Company weekends seem to be a favourite where he gets to experience life as a soldier, scrubbing floors! Yes he can and knows how to, can I get him to do it at home? You guessed right, nope! Nevertheless, I am pleased to report that the experience is having a positive impact on him as his bedroom is permanently (mostly) tidy.

Youngest daughter is a happy go lucky girl, enjoying school life, with the usual moans about how lessons are soooo boring.  She however managed to fracture her right arm whilst playing rough at school; a very painful experience for her and a very stressful episode for me as it happened just two days before we were due to fly out to Italy for a short break.

We were fortunate to visit Oslo, Norway for the Easter holidays and Lippiano (Umbria), Italy for a long weekend at the end of April beginning of May.  Both amazing and unique experiences which I’d recommend anyone to do.

In Oslo, amongst many things we learnt how far the Vikings really did travel, all the way to India bringing Buddhism back to Scandinavia, visited the Kon-Tiki museum, learnt about Edward Munch‘s life and what lead him to paint the Scream and were truly humbled by the stories of all the Nobel Peace Prize winners.

Lippiano on the other hand was a more relaxed and nourishing experience; we stayed in Villa Pia a beautiful house on the border of Umbria and Tuscany, surrounded by the most spectacular scenery, with delicious food and coffee served throughout the day, helpful and caring staff and a beauty therapist (Maria Giovanna) who gave me the most amazing massage.  HIghly recommended.

In other news, I have started to do some renovating work to the house, which after nearly five years of neglect really needs it, decluttering, new windows, painting, garden reorganisation, the list is long but I am determined to get through it to make sure I add value to the biggest asset I am likely to pass on to my children.

I continue to face the prospect of further invasive treatment to deal wih the remaining tumours in my liver.  At present there are no specific dates but it is definitely hapenning this year, so I will keep you posted.

More news to follow…thank you for reading, with all my love

Twelve months 

Twelve months have passed since you, my love, took your last breath. I thought in my naivety that, because I’d known for a long time that you were going to die, I was ready to face life without you. How wrong!
You brought light into my life, you always had laughter on your face and there hasn’t been a day since your dying that I haven’t thought about you, missed your hugs and wished that I would be granted another minute with you just to hear your voice.

So many unrealised dreams and plans, so many hopes dashed in one cruel moment.
You would be so proud of your beautiful children my darling, they’re honouring your life and your memory by being funny, kind and sensitive souls. Seeing them grow without you here to share my pride leaves a bitter taste in my mouth and my heart. So many milestones you will not get to see, I can’t bear this thought.
I thought I had cried enough tears and yet my heart is so broken and in pain that I can’t do no better but cry. I love you…

What’s in a name?

I’ve been hesitant to write about how this December is shaping up for me and my family but it struck me today that although we have received many good wishes, generous gifts and a few Christmas cards, only one person has actually said to me that Michael is being missed. Up to that point I had quite realised that people no longer mention his name when they speak to me.

I don’t understand people’s reluctance to say his name, it’s as if he never existed. People have got round by saying “we know it’s difficult” or “thinking of you” and whilst I appreciate the sentiments it makes me sad that people have stopped talking about Michael, and I’m finding it extremely difficult to accept it.
Life without Michael will never be the same again, more than 11 months after his death I’m still not sure what shape this life is supposed to be taking. Talking about him and the memories I have of him is essential to me and my children, when other people who knew him, far longer than I did, fail to mention his name it hurts.

Christmas has been cancelled in our home. There are no decorations, at the specific request of my children, we’re not having the traditional Christmas meal.  I was never bothered by turkey, but was happy to cook it for Michael for whom Christmas was the best thing that could ever happen to him, he relished the whole thing indulging excessively in food, drink and gift giving, but much more than that he embraced Christmas with the enthusiasm of an overgrown child.

As it is my children are going to have more christmasses without their father than they did with him. This is painful for me and beyond comprehension.

Tonight we sat down to watch Michael’s favourite Christmas film, “It’s a Wonderful Life”. I had never watched it from beginning to end, being as I always was busy wrapping presents, cooking, decorating or last minute shopping. I understand the moral of the story and now also get why Michael loved this film so much.

I’m not looking forward to Christmas morning without him by my side. I fear all joy has completely abandoned our family and I can’t bear the thought of him not being with us, being silly, singing at the top of his voice and getting overexcited at the prospect of opening his presents.

I have mixed feelings about the year which is about to end. Every day, week and month that passes is yet more time further away from the last time I heard his voice, held his hand, hugged him. On one hand I can’t wait to see the back of 2016 off, on the other I want time to freeze as I don’t wish that gap to continue to grow. It’s a dilemma I can’t seem to be able to reconcile.

#NETCancerDay the countdown 

It’s one week to go till NET Cancer Day, which I will mark by running 10 miles between my two local hospitals to raise money for three charities and awareness of Neuroendocrine Cancers. 

It’s getting scarily close. On the day I will have some support from staff and volunteers at Poole Hospital Charity and others have offered to run an information stall at Poole Hospital. 

I had my monthly Lanreotide injection today. I’m hoping that some of the more intense side effects would have started to wear off by next Thursday, otherwise it’s going to be a very slow run. 

I will be broadcasting live on Facebook and Twitter at various points of the run  I’m only hoping for dry weather. 

If you haven’t yet had a chance to donate to one of my chosen charities, it’s not too late, just visit www.justgiving.com/teams/10MilesForNETs

My next post on here will be after my run on 10 November. Till then, take care. 

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