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

 

 

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.

 

When even sunshine can’t lift the cloud

So today is a beautiful sunny day in Dorset…I’ve been able to appreciate it from my bedroom window; I can feel the warmth of the sun on my face.

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The view from my bedroom

My body aches all over, I’ve had a change in my treatment to deal with some of the most unpleasant side effects, but the new medication warns that muscle and joint aches are common side effects. I can vouch for that! Every movement is a huge effort.

Nevertheless I put on a brave face this morning to take my kids to school; since Michael’s death they’re finding the act of getting ready to go to school extremely difficult so I’ve figured that when I get up and encourage them to get ready they are more likely to go to school.

I returned to my bed to a very deep sleep, which has not taken away the achy feeling. So, although the weather outside is beautiful, a dark cloud hangs over me today. I think I’m going to need more than just sunshine to lift this one.