Arrangements+

Morning all

The Methodist Church at the bottom of Strathmore Road has kindly offered the use of their car park so that gives another option for those of you travelling by car.  It’s just a stone’s throw away.

G

 

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Arrangements

Evening all

Thank you for all of the kind thoughts and wonderful words written and spoken about my darling girl over these past few days.

I can now give notice of the arrangements for Rachel’s funeral.

There will be a service at St Barnabas Church*, Station Road, Rowlands Gill on Tuesday 11 December, beginning at 10:45am, following which the family will travel to Mountsett Crematorium.  We welcome those who would like to accompany us to Mountsett.

We then welcome you all to join us for a reception at Burnopfield Cricket Club, Front Street.

Donations in lieu of flowers can be made to the Graeme Turner Fund at the Brain Tumour Charity.

G

*St Barnabas does not have dedicated parking, so please be considerate whilst parking nearby.  There is a small public car park at the intersection of Burnopfield Road and The Grove as well as limited spaces outside of Rowlands Gill Library.

 

 

 

Rachel Cole, 22 June 1981 – 29 November 2018

Rachel passed peacefully this afternoon, with her family beside her, following a mercifully short decline which started this morning.

I cannot begin to describe the raw intensity of the grief that surrounds us, the disbelief, the devastation.

I will update you all re funeral details shortly.

G

Update*

Evening all, G here

We’ve had a difficult 48hrs.

Yesterday, Rachel vomited immediately after taking her afternoon tablets.  Not only was this unpleasant for her it brought to the fore our fears for her ability to take her, rather extensive (c25 tablets per day), oral medication**.  Thankfully the sickness subsided and we were eventually able to complete her daily dosing.  We finished the day exhausted but hopeful that a dicky tummy, rather than the progression of Rachel’s symptoms, were behind the day’s difficulties.

Alas, this was not the case.  Rachel was unable to take her tablets this morning as the act of swallowing them left her short of breath.  A short time after attemptng to take them Rachel had what, on reflection, I now believe was a number of small seizures, which caused her to become distressed.  In consultation with her nursing team, I cracked open the top-shelf drugs for the first time (Midazolam) which calmed Rachel and allowed her to rest.

Rachel is now served by two syringe drivers to both mitigate any pain and prevent further seizures.  In addition, the sizeable dose of steroids is now administered via injection.

As I write this, Rachel is calm and resting peacefully.  A second day ends better than it had started yet the inescapable reality of my darling girl’s decline over the past 48hrs is all that fills my thoughts.  I will wake tomorrow with renewed energy to continue caring for Rachel as best as I am able but tonight I feel lost, adrift in the darkness.

Oh, and yesterday was my 34th birthday.

Gx

*I haven’t the creativity to think of interesting titles at the moment.

**The plethora of anti-seizure medication Rachel needs cannot all be given sub-cutaneously and, therefore, must be replaced by a sedative to reduce brain activity, reducing the chance of seizures.  From this point on it is expected that Rachel will be very sleepy and less able to interact with the world around her.

 

 

Update

Morning all

It has been a while since last I updated you all regarding Rachel. As those of you who know me can attest to, keeping in touch with people via electronic media is not a strength of mine.

Since receiving the news that the chemotherapy had been ineffective and would be stopped, the symptoms Rachel is faced with have been in what I can only think to describe as a steady state of progression – no singular drastic moment but a series of small, almost imperceptible changes on a daily basis.  To ensure Rachel receives the best level of care available we made the difficult but necessary decision to move Rach into a Hospice just over a week ago.  Rachel ensures me that this had nothing to do with the (sub)standard of her care at home (I’m eargerly awaiting my trip advisor review) but was to simply get a grip of all of her emerging needs.

I’m pleased to say that the excellent, holistic care she has received this past week has really made a positive difference – so much so that we are currently planning for Rachel to come home towards the end of this week/early next.  In the darkness of our current situation this is truly a ray of light.

We are under no illusions – the next days and weeks will be challenging but Rachel remains stoic and in good spirits.  Rachel is also very grateful for all of the messages of support and love.

I will try to ensure that I update you as regularly as possible (not holding one’s breath may be advisable…)

g

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Over the last week, I’ve had a number of falls and an increasing number of serious headaches. The chemotherapy which I was on (PCV) did not appear to be working.

Continue reading “Glioblastoma Multiforme aka GBM4 aka Grade 4 Astrocytoma”