About this Blog

This blog started as an online diary and place for me to rant about annoyances in my family.

However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.

On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.

October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.

It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.

It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.

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Monday, 14 July 2014

*** REMEMBERING RUTH *** TAUNTON EDITION ***

*** REMEMBERING RUTH *** TAUNTON EDITION ***
There will be a second celebration of Ruth's life on the 30th August between 4-6pm at St Andrews Church Hall in Taunton.

All friends and family are welcome.

It would be really nice if you have any photos to share of yourselves with Ruth at a young age (or older!), please write your name and where and when it was taken on the back - this can then be passed onto the children.

More information closer to the time, or contact Sharon Kinloch for anything more urgent.

We look forward to seeing you there, love from Ruth's Family.
xxx

Saturday, 12 July 2014

From Mr Knitting - A day of very strong emotions.  I was absolutely bowled over to see so many friends, in some cases not seen for years by either Ruth or Myself.  Thanks for coming and making the day so special, The Uni friends, the Horsham friends, the Bucks, the Hayllars, the Church friends, the Guiding friends, the Scouting friends, the NCT friends, the Northern Rock friends and the Jungle Tot friends.  Plus anyone else who doesn't really fit into one of those boxes.  Rest in Peace Ruth, well if you can with that railway line running past the end of the field!

Monday, 30 June 2014

** REMEMBERING RUTH ** DETAILS OF WAKE / CELEBRATION OF RUTH'S LIFE **

** REMEMBERING RUTH **
The details for the Wake / Celebration of Ruth’s Life as follows:

11/7/14, 3-6pm at Maidenbower Community Centre, Harvest Road, Maidenbower, Crawley, RH107QH.

It is open to all friends and family of Ruth. There will be a memory book for your comments and photos (if you do please write your name on the back of the photos and where and when they were taken). This can then be given to Isaac, Imogen & Hope to help remember Ruth.

Tea / Coffee / Soft Drinks and Cake will be provided; there is no bar facility on site so please bring a bottle. 

(A cask of Ale will hopefully be provided).
It will be a child friendly afternoon so please feel free to bring them along, Ruth was keen for children to be there - there will be a few things laid on for them too; plus there is a park a couple of hundred yards away as well as large open spaces.

To give us some idea on numbers attending please drop an email to remembering.ruthhayllar@gmail.com .

I would like to thank Ruths friends for helping with the organisation and running of this event. A subsequent event will be held in Somerset during the summer, further details will be released once they are known.

Please feel free to share this message!
Thanks,
Anthony
(Ruths Husband)

Tuesday, 24 June 2014

Hi this is Anthony, Ruths Husband.  I must start with an apology.  I remembered the facebook page, mumsnet and twitter but I forgot the actual blog!

First the bad news : Ruth passed away on Friday 20th June.  She had family by her side and friends had been in to visit her throughout the day.  She was not in pain at all and did not suffer, which was very important for us and Ruth.  

Ruths funeral is going to be Friday 11th July at Clayton Wood Natural Burial Ground BN6 9PD.  It is on the A273 about 10 miles north of Brighton, a mile from Hassocks railway station with plenty of busses serving the area too.

All are welcome to come along and Ruth would have loved to see children there.  

It will be a colourful day however please refrain from flowers.  Ruth would have wanted dontations to goto the amazing people who supported her right to the end, namely St Catherines Hospice in Crawley and MacMillan Nurses.

The children (Isaac & Imogen) have been told and like myself and the rest of the family they are heartbroken.  This has all happened a lot quicker than was predicted and goes to show that cancer has a long way to go before we can beat it.  

I am really touched by the kind words everyone has been sending us.  I am planning a memory book, more details to follow on this.

If you have any questions, please just email me on anthonyhayllar@gmail.com.

Sleep tight and I will miss you Ruth. xxx

Love

Anthony.
(Long standing (of 12 years) husband)

Fun in the snow Jan 2013.  Horsted Keynes, Bluebell Railway.

Monday, 16 June 2014

Was I actually a statistic??

Since leaving hospital last week I have been pondering about what happened while I was in hospital and whether things actually worked how I expected them too.

Let me explain that a bit better. 

I was admitted to A&E, and moved to the Acute Medical Unit, then a general ward and finally a gastroentrological surgical ward. Sounds OK, those were the problems I had and have. 

But here is the cruncher, I am also a cancer patient. I never felt like I was being treated as a cancer patient. The Consultant that I saw was not an oncologist, I am not even sure if they were used to dealing with cancer patients, or whether cancer was something that they were using in their diagnosis, treatment plans or ongoing care plans. 

I don't even think I should have been discharged from the hospital. I have to think that they should have been helping me look at long term options as I do not feel any better than I felt on discharge last week and the hospital should maybe have done more to look into the type of care I am going for now. 

Where does this fault lie. Not every NHS trust can have specialist cancer services. Services in this part of the country feel very spread out. When I was admitted where should I have gone? Would I have been better being admitted to Royal Surrey where they have the cancer specialists and wards to provide better care for oncology patients? Would I have ended up with better 'holistic' treatment? 

I don't know, I am not an NHS commissioning manager or who ever makes these kid of decisions. But what I do know is some of the decisions I have made over the last week have been incredibly hard and have almost been made more difficult because of some of the levels of care I did or didn't receive when I was in hospital.

Friday, 13 June 2014

Approaching the end

As the end approaches a lot of people are going to question the decisions I have made and the ones I have taken. 
You can judge all you like, some people may think I am being selfish or ignorant. Others will not understand why I am making the decisions I am.

Today I have made one of the hardest decisions I have had to make in my short, yes, short, I'm 34 years old, not 74 or even 54, i'm 34 remember that.

I have decided to go into respite care. I cannot be the burden upon my family anymore that I have become. 

I want my children to have happy memories of their home with mummy in & lots of love and fun and laughter. There is already so much pain for me in my house, where I have yelled at them for no reason other than that I can't cope. 

That's not their fault. My uncontrollable pain and suffering has been taken out on them for too long and now we can create happy memories in their home while I receive the round the clock 24/7 care I need.

So, on Monday I enter a new phase of cancer living. I am going into respite care at St Catherine's in Crawley. My new home, the place where I can relax and receive the specialist 24/7 care I need.

You might not understand this decision, it has not been taken lightly, but rest assured it is the best decision for me, my family and my health.

Thursday, 12 June 2014

Long time no blog,

That sums it up recently. 

We came back from legoland on the Tuesday after bank holiday Monday and my pain was so strong, I really thought that we were approaching the end. At times now I know it is not far off.

Hopefully, my new morphine delivery system which has to be recharged daily by the district nurses will help with the pain control, but will severely limit where I can go and what I can do. 

It seems safe to say, that overnights are out, and day trips are restricted to what we can do as a family, as all my strength appears to have left me too. 

Let's be realistic, soon I'm not going to wake up, but keep living for me, check your poo, and keep crafting those of you who have been inspired, help raise awareness of terrible, secondary cancer killers throughout the uk.