** 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)

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.

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.

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.

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.

Silent Sunday

A months supply of medication!!

some random musings

Just over  a year ago I wrote a post about how much I hated being pregnant, but how I loved how my body bounced back and how much breastfeeding helped with the weight loss. I had found that after each of my children I had dropped a dress size without really doing much different, except running around after more and more children. I even speculated as to how many I would have to have to be down to a size 10.

How times change. I am now that fabled size 8-10 and have been since October. I hate it. I still look in the mirror and hate what I see. I look ill and drawn. I look tired and no amount of amazing make up or BB cream is going to improve that, especially when my body has me up and down several times a night and regularly waking in pain at 5.30am as all my medication starts to wear off.
Add in the 3 children under 6, who wake in the night because they are ill or who don’t go to sleep because they have had a nap during the day at the wrong time and I am permanently exhausted. 

Of course, I don’t show it all. I try and put a confident, friendly brave face on it but inside I am falling apart. 

The palliative care I am receiving is excellent, but while sometimes the pain relief is adequate sometimes it just isn’t enough. I see the consultants and have to be honest that sometimes I feel the pain relief is adequate and sometimes i am swearing and squirming in pain. If you took one look at me you probably wouldn’t guess it though.

At the moment though, as the weather warms up I am waiting for someone to congratulate me. 

Why? You might ask. Well I told you that my tumour hadn’t responded to treatment and hadn’t shrunk. The truth is, its not just bloating, but I look as though i am 5 months pregnant at the moment and I can only imagine that it is going to get bigger and bigger. 

Now that I have had time to come to terms with the fact that my tumour is growing I have been thinking about what the options are. I wonder whether surgery to remove part of the tumour might now be an option as it makes my stomach so tender and uncomfortable. 

I struggle with lifting my children and cuddling them. rolling over in bed can be painful and no matter how many wheat bags or heat packs I use, how many paracetamol I take I cannot seem to manage the pain. What i need is liquid paracetamol which works incredibly fast and well. but no one seems to believe me, when I have been in hospital i have had to fight for the liquid stuff as it works so much better for me than capsules or tablets. 

Anyway back to the matter at hand. I am slowly coming to terms with what has happened over the last week. But make no mistake I am still coming to terms with this momentous moment. So, i’m sorry if having a coffee or lunch is not a priority for me right now. I need to focus on my health and managing expectations over the next few months.