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.

 

 

 

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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

Wonderful Friends

Hellos and Goodbyes

Over the past 10 days Rachel has had visits from both university friends and ex-work colleagues. Jennifer and Leo have received various gifts and the carers have been provided with edible goodies. We have also had regular visits from friends of Rachel who live on the other side of the Pennines and who bring supplies of food to keep us from starving. The distances that these lovely people have travelled to see their friend is testament to them as people and to the friendship that they have had with Rachel. One of these wonderful people came from her home in Singapore and after travelling for 30 hours spent a short time with Rachel before going to her hotel to get some sleep. She then returned for visits over the next two days before leaving. Although others travelled much shorter distances they all came to say a last good bye to their beloved friend. In fact one of them said that at Girton Rachel was the glue that held them all together. I expect that their memories of Rachel will be what holds them together in the future. Tears were shed by everyone as they left knowing that they would not see Rachel again. We know that Rachel was loved and respected by all these friends and we are grateful to them all for coming to see her.

Health Update

Rachel has deteriorated over the past 10 days and her breathing has changed noticeably in the past 72 hours. She still drinks small amounts of water or diluted pineapple juice and despite not eating for about a week she can still respond to people with a smile or the occasional word. Rachel’s morphine dose was increased slightly last week primarily to relieve the pain she feels when being moved when being washed. Apart from that Rachel is peaceful and not distressed which is all we can hope for. A Marie Curie nurse has stayed with Rachel overnight for the last two nights and is coming back again tonight with a different nurse planned for Wednesday night. This gives Graham at least the potential of a more restful night.

Love and best wishes to you all

Keith and Anne (The Rents)

 

 

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.

 

 

Reliving the Nightmare

October 27, 2018

Update

It is 12 years ago today that Graeme, our lovely son and Rachel’s wonderful brother, died. Time really does not heal and this anniversary is the worst yet. As Graham mentioned in the last post Rachel’s stay in the hospice helped her enormously and she came home the week before last on October 17. A couple of days before that a hospital bed and other accessories had been delivered to the Hobbit House. Rachel’s needs and deteriorating health also meant that daily visits by carers and nurses had to be arranged. As a result it was no longer realistic for Leo and Jennifer to sleep in their own house and so they have both been sleeping at our house and visiting Rachel daily. Last week was the school half term holiday and so Leo and Jennifer have been around all day but fortunately the decent weather has allowed us to take them out for most days.

Although she now spends her time in bed, Rachel still talks to us and has a good appetite for normal (and unhealthy) food that she has not had for over 18 months. On the downside Rachel cannot concentrate for long and her short term memory is very poor. She does sleep a lot and for the past week was getting more headaches despite taking morphine orally with the occasional injection administered by on-call nurses. However earlier this week it was clear these methods of pain relief were not working as effectively as was needed. Hence the medical staff decided that Rachel should have morphine automatically administered by syringe driver to maintain a constant level. This has worked well although the dose may need to be increased in the coming weeks. Rachel takes all her other medication in tablet form which is good although arrangements are in place for these to be administered also by syringe if she cannot swallow anything.

Two weeks ago today while Rachel was still in the hospice one of her lawyer colleagues from her work in Newcastle visited her for a few days. The said lawyer now lives and works in Victoria in British Columbia, Canada and her visit says something about the friendship between the two of them. It was wonderful to see them spend time together. Leo and Jennifer were delighted to received lovely gifts from Canada and to meet Mammy’s friend. This is an identical situation to that of Graeme. When Graeme was in the Canadian arctic he met a lovely young guy from Israel called Oded. Just a few weeks before Graeme died Oded flew from his home in Israel to spend a few days with Graeme. It brings tears to my eyes now to recall this and when they said goodbye to one another they promised to meet up in Hell. Not the place of fire and damnation but a town in Norway that they both wanted to visit.

So Rachel is as comfortable as we and the carers and nurses can make her. How long we will have her we do not know but we do know that it is not long enough.

Thank you all for your continued support and good wishes.

Keith and Anne (aka The Rents)

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

Glioblastoma Multiforme aka GBM4 aka Grade 4 Astrocytoma

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”