Abi and Me

The dust jacket is matt pink, scruffy black letters, which appear to have been scrawled with a sooty finger, or stick of crumbly charcoal, announce “This is not a Pity Memoir”. When the outer cover slips the sugar pink clashes with glossy bold yellow like a Battenburg cake full of E numbers. The words hidden beneath - “It’s a love story.” 

My copy is signed in the same scribbly hand – “To Sarah, Happy reading, crying (?) Abi Morgan”

Since trying to fashion my own story into a memoir I’ve been reading more true stories, especially those written by writers.

Abi Morgan is a screen writer and I confess I knew little about her except she wrote “The Split” for the BBC and I am a huge fan. Listening to her at discuss her memoir at the Primadonna festival with Kit de Waal I realised just how many similarities there are between my story and Abi’s.

Both of us were born in 1968 – I add her to the list of “famous” people born that year, Kylie, Jason, Catherine Tate and of course Daniel Craig. I note Abi’s birthday is in September, I am still just a smidge older than all of them!

Both us find our husbands collapsed after severe headaches – only Abi’s husband isn’t really her husband, they never married and the outcomes are starkly different.

Subsequently in the wake of one family trauma we both develop cancer – her breast, me bowel.

Yes, many similarities but also our stories are poles apart. We are like spinning tops which clash and career off in opposite directions rather than balloons benignly nudging each other on the breeze.

Am I waxing lyrical, of course, my writing so often coloured by the style of narrative I am reading, Abi’s stream of consciousness somehow taking my own words along with hers.

I didn’t like her style at first, I’m not sure I will enjoy this, I thought, but then something clicked, her lists, her pop culture references and her brutal honesty started to resonate as I tuned into her wavelength.

Grabbing some post-it notes I began reading like a writer (thanks Kit de Waal for that advice) not only noting what I enjoyed but marking the pages where our stories converged.

We had both written to Jim’ll Fix It – neither of us had our letters answered. We both count our blessings for that – phew! What charmed lives we led.

Although Abi never travelled abroad until she was eighteen, she has made up for it since and recounts many skiing trips and foreign family holidays. She even manages to take her two teenage children, one boy, one girl, away to their holiday home in Italy when her beloved Jacob is in hospital. 

Our family could never manage holidays when Andrew was still alive, I remember only too well the stress at the airport flying to Paris, defusing and calming what could have been a major incident. I still find holidays hard to do.

Do I envy Abi’s “glamourous” lifestyle? Perhaps - not really - I wish the home screen on my computer was Andrew and I standing somewhere more exotic than on Redcar beach. But that is my life and my memories, we can’t make anymore together because Andrew died.

Meanwhile Jacob lived and Abi wonders what it would be like if he hadn’t. Would life be better or just different? She ponders a carefree life as a widow - sorry love that's not all its cracked up to be!

I certainly don’t envy her looking after a man who is her “husband” and yet isn’t – he doesn’t even recognise her – she is NOT the REAL Abi Morgan. A side affect of his debilitating neurological condition.

My heart breaks at the thought and I know full well that I would not have handled that situation as well. If Andrew lived and needed full time care it would have driven me mad, I couldn’t have done it. Only I am allowed to say it but, I do believe it was for the best Andrew’s heart attack was fatal.

Jacob suffers from MS and then develops Anti-NMDA receptor encephalitis – 80% of people have a good outcome with treatment, but his prognosis is not so great, they never get fully out of the woods.

I’m not sure what the percentage is of people having heart attacks fully recovering?  I daren’t look it up. It probably quite high and Andrew could have been perfectly fine but from family history I know that his dad was never the same after his first heart attack at the same age of 48. I know how stoic my mother-in-law was but how looking after her husband wore her down and how the ripples scarred the family.

Abi’s grief is so raw and visceral, you can still grieve if someone survives, you still mourn what was lost. 

Many of our challenges were different, I was spared financial worries, the mortgage paid off once I produced the death certificate – I burst into tears when the letter arrived.

Coming on top of all we both lost our cancer diagnoses seemed a cruel twist of fate, far too dramatic for even a weekly soap opera. 

We both think of our children and the unfairness of the situation, already being a family with “one man down”. 

Abi appears to have struggled more than me with the procedures of her own treatment, but she was also caring for Jacob, two hospital stories knotted together – how I admire her for that.

I had been a widow for eight years when I was diagnosed and I had my dad beside me during chemo, we sat side by side being drip fed our individual poisonous cocktails  – “family outings”, that my mum now admits she was weirdly jealous of.

It’s strange what you see in others, you wonder if you would cope differently. Be braver? Fall apart? Stay or leave?

Ultimately Abi’s story is not a pity memoir but a true love story, just as it says on the cover. You will never know how you might react until it happens to you and I pray it never does, at least not as dramatically. It makes a good story but up close and personal is almost too much to bear.

Abi Morgan you have my full admiration.

Everyone else – go read this wonderful, honest, life affirming book and hold you loved ones just that bit tighter in gratitude.

Running up Those Stairs

As I sat in the dentist waiting room the other day I was astounded as I watched the dental nurse run up a flight a flight of stairs.

“I used to be able to do that” I thought to myself.

Part of me is mystified when I lost this super power but of course I know full well it went hand in hand a cancer diagnosis and life changing, life-saving op!

My current earworm is Kate Bush “Running up that Hill”, while never an ability or even an ambition of mine to go quite that far, running up a regular flight of stairs was always manageable.

The staccato sound of shoes on a hard floor or the muffled thud of slippers on carpet, carried out with the precision of a quick step in time to some unheard refrain.

            “I’d be running up that road

            Running up that hill

            With no problems”

Oldest son and I have just been away, for what has turned out to be our annual treat to see the end of year ATP tennis finals at the O2.

Oh boy there were a lot of stairs to climb.

Sometimes we relented and took the escalator, gliding to the next level with ease. But I want to push myself and get fitter, so we often took the stairs, not running, just walking, sometimes getting slower and slower until…

…there was a point where I just had to stop.

These were the stairs that took you to the highest level of seating. Once you start climbing there is no option to switch to the easy life. Other spectators floated past while I caught my breath and regained momentum.

It isn’t just a lack of fitness that makes me slow and steady, like the proverbial tortoise in the fable (always a favourite story of my youngest son).

My lack of pace also comes from Peripheral Neuropathy. An unwanted legacy of the chemo.

I literally, and I’m not kidding when I use that word, cannot feel my feet properly. They are in a perpetual state of tingly pins and needles.

Remember playing in the snow as a child, yes you might have had two pairs of socks on your feet and a thick pair of gloves on your fingers but if you are outside too long your extremities become numb. 

Oh how joyous it is to come inside and get warmed up. Feelings creeping slowly back into your fingers and toes. It happens so naturally you hardly notice.

Now imagine the feeling never comes back.

I have another earworm….

            “I feel it in my fingers

            I feel it in my toes…”

Only I don’t!

I carefully watch each step, knowing my legs work and are propelling me up or down but not entirely feeling when my feet land. I’m on autopilot.

In a way I guess it’s how amputees walk with prosthetic legs, trusting your own instinct.

It’s just something you get used to and maybe the nerve ending will repair themselves and the symptoms will ease over time. On the other hand, this might just be another permanent reminder of all that life has thrown at me.

There’s a bit of a campaign at the moment saying that not all disabilities are visible.You never know everything another person is battling.

I’m not after sympathy or a blue badge but hopefully I’ve given you an insight into what life after having cancer can be like for some. There are many varied symptoms of having poison pumped through your veins and most people just carry on, thankful to have another day before them.

As we were reminded, flashed up on a big screen at the tennis, 1 in 2 people will develop cancer over their lifetime.  Cancer research was the sponsored charity for this years’ event. I hope and pray they can find successful cures and treatment that is symptom free.

When the tennis was over, we negotiated more stairs, this time going down what appeared to be a never-ending spiral of concrete. Down an escalator to the tube, out the other end and then a weary walk to our accommodation for the night.

And then before bed – a final flight of stairs… hahaha

Remember, Remember the Fifth of November

How can I forget? Today a year ago I was “officially” diagnosed with bowel cancer.

I say “officially” because one of my GPs had already spilled the beans when I wasn’t feeling well as he could see the scan results and knew exactly what was causing my intermittent stomach upsets.

But the fifth of November was the day it all became REAL.

“We need to operate as soon as possible.” Said the consultant.

Petrified of any kind of operation I blurted out, “But I’m moving later this month.”

“What’s more important, moving or your health?”

Well I could have swung for him then.

He took me to another room and showed me the scan photo as proof that an operation was imperative, not that I have any sort of training to interpret the grey and black blobs of my internal organs. I gave up biology in third year preferring chemistry, much more maths involved and pretty coloured reactions to play with!

The image was bad, on so many levels, and at that point I totally lost if and got hysterical. My boys had already lost their dad it was inconceivable that they should lose me too.

The prospect was bleak and I couldn’t compute how I could both move and have an operation at the same time. I’ve double booked myself on many occasions and I knew this wasn’t going to work.

Fortunately, I had a friend with me, she took me to a nearby café, I had a cup of tea and slice of cherry pie while she calmly worked out possible scenarios for me.

She is very much the planner and as I sat savouring the pie, squishing whole cherries between my tongue and roof of my mouth, drying my eyes at the same time, she sorted out how I could rally around my local friends from church to help out. There must be someone I could stay with in this situation?

Mentally I went through a list of everyone I knew nearby, very dear friends, with spare rooms who might accommodate me while I recuperated and regained my strength after a lifesaving operation.

I discounted every one!

Moving nearer my parents was the best thing for my health – the consultant didn’t have a clue about my personal history, why moving was the important for my mental well-being and it finally sunk into my friend that family was the most important part of the equation.

My dad was, and still is, having regular chemo. There was no way him and mum could keep coming up to see me. They’d already made two trips in the past month.

On my way home I called in to see a friend who is a retired GP and told him what the consultant had actually said. He talked things over with me and agreed I should put the medical stuff on hold until I moved.

When I got home, I rang my own GP surgery. I wanted to speak, not to the doctor who had originally sent me for tests who was a fairly new addition to the practice but the one who knew me and the boys and had known Andrew and all we had been through.

He rang me back and was very honest with me about my chances. He even came around that evening to see me and give me the strongest hug I have ever experienced! Subsequently he wrote an amazing letter to my new GP practice, which the receptionist told me had her in tears!

And so my path was set before me. November was filled with things to do, excursions and visits to friends that were already planned and a moving date fixed in stone.

Somehow, I managed every single one before the trauma of having to be diagnosed all over again before finally ending up with emergency surgery.

I have to thank God for the way things worked out. On paper it all seemed unlikely and impossible and yet I’m still here a year on to tell the tale. But I’m crying as I type this, amazed by the miracle of my journey, from North to South, through cancer diagnosis, lifesaving surgery and beyond.

I’ll always remember that fifth of November, the fireworks, family and friends.

Pansies in my garden for thoughts and remembrance.
They are also sometimes called heartsease.

#Stoma66

Another new challenge, well you know me, I love to START new things, its finishing them that is tricky.

This time I am asking for your help to keep me focused at the task at hand by sponsoring me.

(I know there are many worthy causes and Just Giving pages out there to support so please don’t feel under any obligation. Raising money is good but so is raising awareness.)

I’ve signed up to #Stoma66 “66 days to reach 66,000km and a BETTER YOU”.

Thankfully I don’t have to walk, swim, cycle or even drive that distance all by myself. It is a joint effort as Colostomy UK’s big push to help ostomates live a healthier lifestyle and raise funds for the charity.

Colostomy UK is the national charity offering support and advice to people with stomas. Research shows that it takes on average 66 days to form a lasting habit, so if people are active for 66 days they are more likely to carry on afterwards.

The first 500 participants to sign up got a free Tshirt and pedometer – FREE STUFF – how could I refuse that?

Now there is as ever a twist in the tale… there have been some delays in getting the packs out, so I sent a polite email to enquire where my pack was….

An apology was sent and then my pack arrived in the post about an hour later! See it pays to complain – politely of course!

Although the challenge officially finishes on November 20^th my 66 days will be up in the first week of December or thereabouts. A year after having my life saving surgery and getting my stoma. What perfect timing, I explained in my email to say thanks my pack has arrived.

“That would make a great story for our website, can you answer a few questions?”

Never one to turn down an opportunity to tell my tale I promptly replied. Obviously, my answers were in essay format, but they have been neatly edited (thanks Oliver). You can read my story here - http://www.colostomyuk.org/sarahs-stoma-66-story/ 

This challenge has taken on a life of its own and I really have to complete it now or I will let myself and everyone  else down – oh the pressure! Hehehe – it’s really the push I need. As I said I am not good at finishing things.

Once my pack arrived I immediately pulled on my walking boots, clipped the pedometer to the waistband of my leggings and strode out into the sunshine to re-explore old ground. Memories came flooding back of school cross country runs, tracking with the Brownies and Guides - using twigs to make arrows and a sponsored walk once undertaken.

I managed just over 4 kilometres and was very proud of myself. Tuesday, I did a Zumba gold class – the pedometer measured that as three and a half kilometres. I then had two quieter days, but you have to build these things up slowly and I don’t want to overdo it! Me and my sofa are still best buddies. Today the distance didn’t add up but I did some gardening in the rain, so that’s still getting exercise.

Besides I have not set a measurable goal, I just need to be in some way accountable to push myself further and commit to getting out and being more active. Perhaps if week on week I do a little more, then if I get my coloured pencils out maybe I could draw a graph and convince myself I really have achieved something.

I’ve always resisted the Fit Bit revolution; I don’t want to be a slave to a mini computer chip on my wrist dictating my steps… but a pedometer…. well that’s a little different, a bit old school in the grand scheme of things.

I guess my main aim is to be able to keep up with my old walking buddies next time I visit. The 3 mile walk we did last time I met them was a killer! I am now so unfit, not that I have ever been in the super fit Olympian category.

Hopefully in 66 days, give or take, I might be back to the fitness level I was at before major surgery, and a year on that will be something special to celebrate.

1st September

I can’t believe it’s already September! Where has this year gone?

Oh yes it was stolen from me by cancer and chemo, all my hopes and dreams, all I planned to do when I moved, new adventures, possibilities, travel and maybe even some romance!

Don’t I deserve it?

Well life is never fair and I am far too much of an optimist to be bitter.

There were times when I wasn’t so positive, after my initial diagnosis I pondered how my life could be curtailed early and all I would miss and leave behind. Especially when I was feeling so ill I almost wished it was the end.

But since chemo started, with each one ticked off my hope began to expand like air filling a balloon, breath by breath.

And now chemo is over, there’s no picc line sticking out of my arm – yipppeee!

Then last week I saw the consultant and he had my scan results – everything clear, I’m cancer free!

To be honest it was a bit of an anti-climax, it was after all what I expected. The operation got rid of all the nasty stuff, chemo was belt and braces.

So now September arrives full of new possibilities and beginnings as it always has. New things are always stirring as the autumn leaves start swirling on the wind, kids prepare to go back to school, or in my case now back to uni and this is finally MY time! 

A time of change as you can see in the garden with some plants wilting and dying in the heat of summerdays

Meanwhile my clematis has new flowers, 

the fuscia is still adorned with jewel coloured flowers and I've spotted new buds on the geranium.

It might feel like some time has been taken from me but perhaps there is a purpose, I’ve had time to consider what sort of volunteering I want to be involved in now I've moved, to really consider my options rather than rushing headlong into something.

I know without a shadow of a doubt that I am called to write, I need to make time for that, it has to be a priority. No more excuses and hopefully not too many distractions.

I want to travel and I would like some romance…. But I’ll consider that another day.

God has promised “I, the Lord your God will make up for the losses caused by those swarms and swarms of locusts.” Joel 2:25

I translate that as the first swarm taking my husband and second swarm part of my bowel!

I found this prayer  today from Mandy Hale, who goes by the name of The single Woman on Facebook. I guess mostly she is thinking about new relationships beginning and ditching the old ones but I think it can apply to so much more.

I'm making this my September prayer... as I positively step forward into a cancer and chemo free life. 

LOST

I’m not supposed to be here today, sat on my sofa watching TV, reading a few chapters of my book, faffing on my phone.

I’m supposed to be at a quiet day, a kind of retreat with some painting and reflection.

I was really looking forward to it. I rejoiced when I realised that postponing my chemo for a week when my bloods were low meant this day was free.

This morning I got ready and set off, the venue was a quiet country church, only a few miles away. I’d checked on Google maps last night. I like to think I have a good memory when it comes looking at maps and getting the location lodged in my brain. Left turn, right turn, where the local landmarks are.

But this morning driving along the narrow roads, I made 3 U turns believing I’d driven too far on each particular route.

I was lost, not totally or hopelessly lost, I still knew my way back home.

I could have stopped the car, got out my phone and refreshed my memory of exactly where to go, but instead I did turn round and come home.

Having chemo affects your brain, I can’t remember things like I used to.

Having chemo affects your sleep, your taste buds, your general wellbeing.

Having chemo affects your whole social life, one minute you are planning something you know you will enjoy and the next you are cancelling your plans and retreating to that safe space on the sofa.

My chemo should be finished this time next week, bloods permitting and barring any unforeseen circumstances.

It will be time to get my life back on track, this wonderful life I planned for once youngest son had half flown the nest and gone to uni.

But just like driving on narrow country roads looking for something that I’m sure should stand out proud I fear I may still be a little lost and what I’m looking for will remain obscured.

When I used to regularly go walking with a group of friends, there was always delight in spotting an arrow pointing the direction we should go in. Especially on a long hot excursion when we were longing for a scone and a cuppa!

Yes there were times we would explore and take the adventurous route for the joy of it, we’d laugh as we navigated our way over fallen trees, under branches, down steep slopes and precariously crossing streams on slippery rocks. It was all part of the fun.

Chemo is not fun, being lost is not fun, losing part of yourself is not fun.

I feel like I’ve been living in a haze, especially these last few weeks when the symptoms of chemo have cumulated transforming me into a slob moulded to fit the sofa!

OK. I’m being a bit harsh on myself there. I have actually achieved a great amount with moving only weeks before a major op. My new house is basically in order, all bar the paperwork but when was I ever on top of that since Andrew died?

Ah now that’s another loss, excuse me while we detour up a different path.

I’m an empty nester with a nest for one, I want to explore, to travel and while being on my own doesn’t bother me, I do quite like my own company. Sometimes it would be nice to share experiences with someone, to have memories to look back on together when we grow old!

Anyway back to the proper path, where was I? I’m not sure where I should be going….

Where is the signpost, which way do I take at the crossroads?

It’s alright taking one day at a time and doing all you can manage in a day, that’s been my regime for a while now, I no longer plan like I used to.

But not planning means not dreaming and my dreams have got dusty, to be honest some of them have got lost in the process of dealing with cancer and having treatment.

I know that surgery was successful in removing everything and the chemo is just a mop up, of the harshest kind, but until I see the oncologist and get the results of my latest scan you can only hope and pray.

When you go for a CT scan, in the machine a voice tells you to “breathe in and hold your breath”.

I’m just waiting for the line “and breathe”.

Then I shall consult my maps, dust off my dreams and plan something I can actually achieve – I don’t think it will be finishing the paperwork!

Maybe I’m not really lost. Perhaps I should see this as a detour and this new path will actually lead me to my destination, only time will tell…

Present Tense

What seems like a long time ago I wrote a blog called Unravelling Edges… about how my life came undone when I unexpectedly lost my husband. About six months in I wrote a post about being caught between the past and the present.

    You can read it here - Caught between the past and future tense

About six months after my emergency operation and I find myself in a similar place.

I’ve been sitting in my lounge with the French doors open in the afternoons, sun streaming in accompanied by the laughter of children bouncing on a trampoline a few gardens away.

Oh those halcyon days of laughter, listening to the bossy child who dictates the play, I recognise my younger self. Those days are long gone for me. Even my own boys are so far past this stage. I can remember clearly but can never recreate such scenes.

And then at the other end of the scale, spring is wedding season and so many friends have been celebrating anniversaries and it honestly fills me with such joy but when I bumped into someone celebrating their sixty third wedding anniversary, I marvelled and yet…. my husband never even got to live 63 years!

The past cannot be reclaimed but my future is somehow limited in so many ways.

There’s always the fear the cancer might come back for a start but then there are other things that will probably never happen for me and I grieve for a life that could have been …

I’m not saying my life is total rubbish just that I need some readjustment to get me back on course.

On a larger scale I worry about, Brexit, global warming, the rise of selfishness and violent crime.

I guess life was ever like this.

Youngest son found out the other day they are making a musical of Back to the Future.

“WHY?” he asked!!!

Being a child of the 80s and the same age as Marty McFly I think it’s a great idea.

But however great the 80s were as a teenage we lived under the shadow of the cold war, a nuclear bomb could drop any day, AIDS was the pandemic to wipe out millions, there were miners’ strikes and civil unrest.

At school we learnt in geography all about greenhouse gases but somehow that was someone else’s problem to fix, we were school children. It would be sorted and by 2017 we would all have hover boards!

Obviously, we don’t have hover boards and now it the young people leading the way – how things have changed!

And I guess what I’m trying to say is that things are always changing.

The past often looks rosy and the future uncertain. Especially as we grow older with more responsibilities on our plate.

Or maybe there are days when the past looks bleak and the future is something to be embraced!

Perhaps a mixture of the two is the best approach to take?

I do look back with fondness at the past, especially with all the old photos I’ve dug up since moving. Memories made that can never be taken away.

I do look forward mostly with hope, the cancer is gone at least for now and the countdown to the end of chemo is beginning.

Sometimes it’s the little things, a bird singing, a flower blooming, something once lost now found.

We are all caught between the past and future but in the end it’s how we live today that really counts!

An unfair disadvantage?

Well I learnt something new yesterday.

It started with an innocent comment as mum and dad were watching the women’s FA Cup final at Wembley on TV. ( I was sat in the conservatory trying to read.)

“Is the Wembley pitch bigger than other football pitches?”

Dad said no, and I shouted from the other room, “Don’t be silly, of course they are all the same size.”

I texted oldest son, as a sports journalist he would find this banter amusing.

“Do you think It’s because the women are naturally smaller than male players and it is an optical illusion???” I queried.

“The pitch at Wembley is bigger.” He replied

“Liar!, I’m not that gullible.”

“Looks like the joke is on you. Haha.”

Well I am well known for being gullible but as a I have a degree in Library and Information Studies I do like to check my facts so I turned to Google.

I discovered that the Wembley pitch is bigger than some pitches, all Premier teams should conform to the Wembley standard if the size of stadium allows. However 5 of the premier teams have smaller pitches – Aug 2017.

Well I was stunned!

How fair is THAT????

After all an 800 metre running track must be the same length the world over? A tennis court surely has the same dimensions in Paris, Melbourne, New York and Wimbledon, even if the surfaces differ?

Talk about moving the goalposts with football! On one pitch you can judge your corner to perfection with the slice of a boot on the ball and on another pitch your aim is too hard of too soft!

I’m shocked that our national game is not totally fair, unbiased and beyond scrutiny!

But then life itself isn’t fair.

I’ve just had another spell in hospital. My gall bladder rebelled, I don’t think it liked being blasted with chemo every fortnight, I became ill and it needed removing urgently.

So the chemo is on hold, which is great as my body returns to normality, albeit without a gall bladder, but once it starts again it will probably eat into the summer months… no certainties yet until I see the oncologist on Thursday.

There are wins and losses.

But I was reminded during my hospital stay of just how unfair life can be. As I sat there basically cancer free, others in Ebay ( no bids on any of us we are all broken!!) still live with cancer in their bodies every day, festering, growing, or perhaps the chemo is shrinking it? Working its toxic magic.

But what of those whose chemo has been stopped for good, their bodies just can’t take it anymore? At least some of the women were in this position and one younger than me – how unfair!

How unfair that we should be sat inside hospital on a sunny Easter, treats of hot cross buns and Belgium chocolates were very welcome but its not the same as being at home with your family. Able to go out for the day or just potter in a much loved garden.

As one woman remarked, “other people out there have no idea.”

Then after my op I ended up back on the ward I’d been in before Christmas, some familiar faces among the nursing staff were a joy to see.

The operation went well, keyhole surgery, no big scar this time and I am recovering very well.

But others were still waiting for treatment, waiting to be seen, waiting for a diagnosis of why they feel so ill. And sat there through a weekend with fewer medical staff on call seems unfair, when you can’t eat because of the pain.

At least I was recovering. I.ve leaped another hurdle.

And now I’m home, well back with my parents recuperating and discussing the size of football pitches.

Life as unpredictable and unfair as it ever was, both on and off the pitch!