The three As

Black and white dog lying down on a brown, mustard and red carpet

As a cancer patient there are three things from which one has no escape, which I have come to refer to as “the three As”.

I will try to introduce them to you with examples of things I have had to do, many times over, since my diagnosis and certainly far too many times in the intervening period since finding out that I will be undergoing peptide receptor radionuclide therapy (PRRT).

Admin

I find that the amount of admin required to manage normal life is often boring and tedious, nevertheless none of us can escape or ignore it for too long; I hope I am not alone in feeling dread whenever I look at the pile of papers that need to be dealt with.

Photo by Christa Dodoo on Unsplash

Receiving a cancer diagnosis – I can only speak for my own experience, but I am imagining that people with any chronic illness might read this and nod in agreement – suddenly seems to generate a gazillion times more admin and paperwork that, because your life depends on it, must be actioned, chased, filed, noted, shredded or tracked without delay and with one’s full attention.

Nowadays when COVID is thrown into the mix, such paperwork must be produced when visiting hospital on account of there being people specifically employed to guard the entrance of healthcare settings so only those who are holders of an official letter are allowed in, once the obligatory questions regarding symptoms have been answered in the negative and one’s temperature checked.

It is at times an overwhelming task even before one takes into account the next A.

Anxiety

The NHS define anxiety as “a feeling of unease, such as worry or fear, that can be mild or severe”. This is usually a normal response to unknown or uncertain circumstances and is one of the many feelings and emotions involved in our instinct of self-preservation.

However, my personal experience when visiting a hospital or any medical setting is mostly associated with bad or negative news. Because I have an incurable disease, I will, as far as my consultant can assert, always be monitored regularly, either through blood tests or scans and the inevitable consultation to receive the results.

Living from test result to test result, and from scan to scan, means that I experience high levels of anxiety on a regular basis. I am not unique or alone in having this experience, it is very common amongst cancer patients, even those who are currently in remission, NED (no evidence of disease) or “cured” talk about “scanxiety“.

So as I prepare myself for the start of my treatment on 26 November, my levels of anxiety are, as I expected through the roof. I have used up all the tools in my box to try and manage it.

I have written down and asked, the consultant and nurses, all the questions and received, mostly, satisfactory answers. I have stocked up the deep freezer with easy meals that can be microwaved. I have asked friends to be ready to help should the need arise. I have made a list of things that I’ll need for my hospital stay.

Even Marlo is having as special sleepover courtesy of a very kind friend.

Black and white dog lying down on a brown, mustard and red carpet
Our Brittany Spaniel, Marlo

In order to keep a handle on the first two As, the next one is a must.

Assertiveness

I have often been told by those who know me well that I come across as a very confident and assertive person, however I must confess that in the presence of very clever consultants I seem to lose all my confidence, my brain goes into some kind of shock trying to absorb all the information I am being bombarded with, whilst at the same time making sure I ask all the questions I have written down.

This happens less frequently now with my oncologist as we are now on first name terms (that’s what five years of “loyalty points” gets you in the NHS 😁). But every now and then I get to meet a new specialist or the nurses who would normally be at the many scans are away or on holidays and I panic, because it means that the first ten minutes of the conversation are taken up by me having to recount my jOuRnEy from diagnosis, through surgeries, treatment and invasive procedures, side effects, symptoms and current medication.

So here comes assertiveness, in which I set boundaries as to what is acceptable for me as patient to comply with, I challenge whether the way things have always been done is the best way for me, try to make sure healthcare professionals consider my (the patient’s) perspective, and more importantly I do not take no for an answer.

Here comes an example. In preparation for the start of PRRT I needed to have a blood test, an updated CT scan and a COVID test, all within two weeks.

The hospital where I am going to be treated is nearly 40 miles away (roughly an hour’s drive) from my home. At the initial consultation I made sure this information, along with other personal details, were noted and we discussed the implication for my treatment. It was agreed that it would be more convenient for me, and in light of the current COVID restrictions, that all the required tests would be arranged by and carried out at my local hospital. It was also agreed that I would need to stay overnight at least for the initial dose.

Imagine my frustration on receiving a telephone call from someone I had never spoken to before insisting that I should drive the 40 miles to be tested for COVID. I calmly explained that it had been agreed this would happen at my local hospital as it seemed disproportionate for me to undertake a two hour round trip for a test that would hardly take ten minutes. The person at then end of the line was having none of it. This is the way things are done and I must submit to it!

I tried my very best to not be rude and I asked the person whether they felt that in the middle of a national lockdown it was reasonable to expect me to abide by such a rule. They had no answer to my question.

I started to doubt my own conviction and felt that my stubbornness might jeopardise my ability to start treatment. In the end I said I did not want to appear strong headed but logically whether I had the test 40 miles away from my home or at my local hospital did not make any difference to its validity as they would be carried out by NHS staff. This seemed to do the trick and they agreed to contact my local hospital to arrange the test. This conversation lasted the good part of fifteen minutes.

This is but a small example. I’ll leave the discussion about whether I needed to stay overnight for another day.

I can confirm that I did get a COVID test, which returned a negative result, last Monday, at my local hospital which is a ten minutes’ drive from my home.

This all probably makes me sound like an ungrateful, spoiled brat; please rest assured I pick my battles. What I describe here is merely a symptom of a system that tries its best to deliver excellent healthcare to everyone with limited resources.

I am extremely grateful to everyone in the NHS who have at some point cared for me physically and emotionally, without their unflinching dedication I know I would not be here writing about my experience. Over the course of the many invasive and non-invasive procedures I have endured, I have met so many passionate individuals who have treated me with compassion and humanity. I owe them my life.


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Guest blog: What NOT to say to a cancer patient

This is a great blog post from the brilliant Laura giving friends, family, colleagues and acquaintances some excellent advice on what NOT to say to …

Guest blog: What NOT to say to a cancer patient
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Unexpected, unsolicited, relentless…

I wrote this post on 29 January 2017, but never published it, it was too raw, too difficult for me to read back, let alone to allow it to be read by people out there in the ether of the online world.  I have done a lot of personal healing and growing since this very bleak day earlier this year, so now I feel I am ready to let it go and allow others to see the raw emotions that made me write it in the first place.

It was spring and something changed; I had survived my first winter in a foreign land. Cold like I’d never experienced in my life, the kind that gets inside your bones and sinews and no matter what you do it never leaves you. The culture shock! I spoke the language but somehow couldn’t communicate with people, words seemed to have a different meaning to the one assigned to them in the dictionary. Sarcasm, irony and mockery were the order of the day but it made understanding people’s intentions nigh on impossible, were they being friendly or trying to take advantage of me? I was working so hard just to keep the wolf away, money was tight (sometimes not enough to feed myself) and yet I knew that if I could hang on for a little longer I would make it a success. I hadn’t migrated nearly five thousand miles searching for a better life just to flounder at the first hurdle.

We met one Sunday morning, I had travelled from up north to London; for the first time since arriving in this country I had the opportunity to see the big city and marvel at its amazing buildings new and old and bear witness to what every migrant must feel when faced with its famous streets, that indeed they are paved in gold! Oh the opportunities!

My friend, your friend, our friend, had arranged a meet up for breakfast at your local cafe, where we were to meet you and his sister.  I assumed you and our friend’s sister were a couple, so was taken aback when your attention seemed to be solely directed at me and my daughter, but hey I was in a foreign land and when in Rome do as the romans. So I reciprocated by directing all my attention, out of politeness, to you, ignoring our mutual friend and his sister. That didn’t go down very well with our friend, so instead of building bridges I had burnt one. Of course I didn’t realise at the time that our friend’s interest in me was more than for friendship, I was naive.

Unexpected, unsolicited, relentless… you made your way into my life and took a keen interest in everything I did, planned and dreamt of. I had no idea what your intentions were and had far too much turmoil in my personal life to really pay attention, so I just dismissed your efforts. I didn’t know where admiration ended and mockery started, so I remained distant. But you didn’t give up, nowadays your behaviour would be considered stalking, back then it was just sweet, I was naive.

I was not looking for a relationship, I was already in one which I wanted desperately to end. So no jumping out of the pan and straight into the fire, I said to myself. But you wouldn’t give up, it was so hard for me not to give in. And when I did, your love was beautiful, gentle, tender, all-consuming, loyal; I was not used to it, until that point in my life love had been hurtful, deceiving, betraying. Your kind of love made me feel scared because it was so different, unexpected, unsolicited, relentless.

You showed me how to be kind to myself, how to accept the kindness of others, you brought calm to my soul and held my heart safely in your hands. You made me happy. You made my world complete. You made me a better person and because of your love I was able to love you back in the same beautiful, gentle, tender, all-costuming and loyal way you loved me.

And so we started our lives together, enjoying each other’s quirks, making each other stronger, making plans, falling in love.  You were in a hurry, you said, you were not getting any younger and until you found me you never thought you were going to marry or have a family; you were so happy to be a father to my daughter and proclaimed that I was the best mother you had ever met. Marriage, for better for worse, for richer for poorer, in sickness and in health, till death do us apart, we promised; followed swiftly by two beautiful children and making our forever home together, I still hungry for adventure, you content with allowing me space to follow my dreams, because as you said, yours had come true the day we met.

And so fifteen years of domesticity, every day hum drum, paying the bills, bringing up the children, “who is doing the shopping this week?”, “shall I cook tonight?”, “it’s in the calendar, so it’s happening”, just trying our best to keep the love alive.

And then everything changed, dammed blasted alien took hold of you, unexpected, unsolicited, relentless, invading your body and your soul. It attempted to destroy everything we had worked so hard to build together. It really did try its hardest to get in between us, and I had to put all my strength into reminding you of our sweet, tender, all-consuming love; our promise was tested, oh we were tested! And just as we thought there could be no more tests, we had shown our promise to be as strong as iron, the same invading alien took hold of my body. It devastated you, as you knew the alien was robbing you of your life and your strength at the very moment when I needed to be cared for, yet you couldn’t be there for me. Your body was ravaged, where once stood a strong, athletic, powerful man, the alien consumed you, leaving a paralysed mumbling wreck, taking you away from me, from your children, from your friends, to a land where we are not allowed to visit

And now you’re no longer here, I try so hard to hold on to the memories; eighteen years and yet all I can see is how everything changed.

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Shadows

I see these deserted shadows 
which touched my life
chimeras of a time once lived
without care nor worry
no pain or sorrow 

I see these shadows 
which touch my life
reflections of the light
projected from behind me
‘cause now I care and worry
For I have felt pain, grief
Loss, sorrow

These shadows follow me
they are part of who I am
despite the worrying and grieving
I am smiling, dreaming, hoping
dancing, loving, living

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

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

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 ÂŁ40 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

 

 

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.