Just The One (you know you shouldn't do it.....)

The end of someone's life is a sad time and invariably leaves a big gap in the people remaining lives.  This is true for me too.  I am lucky that family and friends are supportive and continue to be so.  Through WAY (Widowed and Young) I am meeting new people all with their own stories of loss and it really puts life back into perspective.  I feel a lot of sadness for those who are struggling to come to terms with the loss of their loved one. 

However I need to be objective, I cannot change the past.  Ruth was my wife for 12 years who bore 3 lovely children who look like her (and unfortunately for them, like me too).  There are more progressive widows who I talk to a lot who have dealt with these demons and I find them the biggest source of strength and joy at the moment.

In 2 weeks time I will be heading upto Dudley to meet 89 of these more "fun loving" widows for a Christmas meal, disco and general chit chat.  I have been out for a meal as a group and also with a few people individually who have lost their partners and all of them want the same thing and that's the company of others.  I am smiling again now I have met like minded people who understand first hand what I have been through.

No one likes sitting at home alone in the evening drinking wine or beer.  I have proven to myself (and others) that I do not need the drink but I enjoy it - and for me there is a difference.  So the message in this rambling passage is grab a bottle of wine and pop around to any friend who is on their own this evening and have a chat.  They will appreciate the company.  (p.s. I have a thing for Red Wine, Cheese and Crackers!)

Night all.

x

A Bitter-sweet Symphony

A bit of a different post, apologies for the rant:

I must say that sometime I lack tact and talk over others.  This is at work and with friends.  It has been highlighted to me in my recent peer review feedback and is something that I am working on. Another thing I am working on is comments I make socially and on social media and the impact of those comments.  

I post a lot on Facebook, some are on how the kids are growing up, some are me just being me and a bit silly and others are requests for help with the challenge of looking after 3 kids on my own.  I have a life too.  Some people seem to think that I should be sat in the house every evening, even if the kids are asleep in their own beds.  

The "mums" have been great in helping me keep on Scouting.  Ruth would be distraught if I had of stopped it as she was when she had to stop Guiding due to her failing health.  Since September, 6 different people have helped me out on that front, thanks, Debbie, Nicola, Rob, Vicky, Emma & Lex.

I have joined a support group, again I see this as a positive thing.  All of the people I have met and spoken to via this have got kids, most work too.  The only time that like minded people can meet is therefore evenings and weekends.  To cover these, I have decided that I cannot use goodwill and am happily employing the services of a babysitter.  Unfortunately, someone has made the comment that they feel I should be staying at home with the kids.  Am I being unreasonable to ask to be out of the house 3 nights every fortnight for some stimulating adult company and conversation?  

I rely on MY mums (Geraldine & Barbara) a lot for support with childcare; which they do without any question.  Barbara (and Martin) are having the kids for the half term week.  This is giving me the opportunity to redo my bedroom, renewing furniture that is nearly 10 years old.  I am also getting the time to visit friends and go walking in Wales.  

I also got two things through the post today.  St Catherine's Hospice hold an annual remembrance service for loved ones in December, something I shall do with the kids.  The other was an email from MacMillan.  They are looking to become the charity of the year for Argos & Homebase's parent company Home Retail Group.  If you work for them, please vote and if you know anyone who does work for them, please mention it to them and make sure that they use their voice.

It is strange, I am sat here, 20 days since my last alcoholic drink and for the first time in 20 days I have not got the need to have a drink; please don't misunderstand this, I am not going sober all of the time!  I am looking forward to seeing friends on the 1st & 2nd November and having a beer (or two) with them.  

If anyone would like to donate to MacMillan they can do so (shameless plug coming) via my GoSober profile, or my good friend Rob Pullinger who suggested I did it!

www.gosober.org.uk/profile/anthonyhayllar

www.gosober.org.uk/profile/robpullinger

Until next time.  Best of health and luck.

Anthony.

Que Sera, Sera!

Everyone deals with things in different ways.  Grief is no different.  People who know me will know I keep things close to my chest but have a reasonably soft, squidgy centre (and not just the belly).  Emotions can and will bubble to the surface and I will be the first to admit I have a bit of a short temper which is just a bit shorter than it used to be.  

I mentioned in my last post, some 3 weeks ago that I had joined a support group called WAY, which is for the Widowed and Young.  Now this cuts out a massive part of society who are dealing with grief and loss, those who were 'just' boyfriend and girlfriend for a start.  I have a friend who falls into this section and they are just over a year since they lost their partner and finding it hard going for various reasons which are not mine to tell.

But there are some incredible people I have met online through this group, two of whom I have been fortunate enough to meet in person.  The first is a tenacious young lady who tragically lost their husband whilst they were pregnant and they have a strong mindset of not letting the world beat them.  The other lady is just over 2 years down the long road.  They're dealing with it in their own way; and to be honest that is the only way that I can deal with it too.

However I am not the only one to have suffered from Ruth's death.  There is her family, who to celebrate her birthday have released balloons, a really touching thing to do.  Then there are her (and my) 3 children.  Hope will not remember a thing unfortunately but at the moment that is also making things easier.  But with Isaac and Imogen (Imogen  more) you can see that they are missing her.  To this end I sat down with them at the end of last week and they asked to see a councillor.  I was in town, about to pop into St Catherines to arrange it and then the school rang.  "Hello Mr Hayllar, don't worry...."  Shit.  What's happened now? I thought, but "We have a vacancy with our play therapist and will have another coming up soon, would you be interested in Isaac & Imogen attending?"  So the intention is that Imogen will start now, Isaac when they can get him in.  

That brings me onto "Moving On".  Over the last few weeks, I have had a turbulent personal life but one thing has become clear.  You don't move on.  You accept the premis that you're alive and need to carry on living.  Does this mean you can't love again?  No it doesn't.  No two people are the same and you cannot compare them either.  But there needs to be an understanding that the past is there but it is that.  The past.  The future for me, who knows but one thing is certain Ruth lives on in her children and I cannot take that away from them.  Never.

I was also asked when I was going to change my Facebook status, which I have by the way, I am a Widower on Facebook but it is hidden so I have no status to the outside world.  I was also asked about my wedding ring.  That is staying firmly on my finger.  Technically I am no longer married but it is a part of me and I feel complete wearing it.  

So to end, to use the words of the mighty Doris Day, 

"Que Sera, Sera
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be"

Good night and sleep tight. xx

Anthony.

Silent Sunday

WILL Power!

Since 1997, my finances have been a little bit on the ropey side.  This was worsened when I met Ruth in 1998.  Spending increased and to be fair so did income; but at the same rate!  We lived reasonably comfortably in Newcastle after our student days and also when we moved down to Sussex too.  There was enough money for everything we needed but nothing left over for a rainy day.  

This was the same until the turn of this year.  Ruth became entitled to higher amounts of benefits and for once we had more coming in than we could spend.  I am in the process of tweaking the income and expenses so that we do not have to go without and there is money available for the kids to enjoy being kids.

But essentially this is all background noise, the main thing I want to put out there is around the finances of death.  Not a great or gripping read (or write) I must say but all the same, we are all going to die!

So what can you do to make life easier for those who are left behind?

1. Make a will - Seriously, make a will, I am in the process of doing mine now it's cost £120 via my bank but will save a lot of time and effort when the time comes to execute it.

2. Put as much into joint names as possible - this means that it automatically goes to your partner in the event of the worst happening.  Fortunately for us, nearly everything was in joint names!

3. Even put the kids accounts into joint names! - Halifax forced me to close the kids accounts and wanted me to bring in their ID again to reopen them!  Doubtless to say, I closed them, then moved them to another more(?) caring(??) bank!

4. Make a list of your financial holdings - obscure bank accounts, online shopping accounts, anything that has a value - makes it easier to track it down.  Also a list of passwords for your digital life will make life easier for those you leave behind.  Ruth had the foresight to email me a list of passwords when she moved into the hospice.

5.  Did I say, MAKE A WILL????

The benefits system is great in this country but they don't come to you, you need to approach them and tell them what has happened.  The only time they come to you is if you or your former partner owes them money!  Again people like the hospice and MacMillan are very supportive but you need to ask.  With all of the offers of help you get at this vulnerable time, what you really need is specific offers of help and not just the generic ones.  

I have joined a support group whom I will eventually meet up with others like me through but there is a very good list on there of things to say and not to say to a widow!  

http://www.widowedandyoung.org.uk/helping-others/what-to-say/

This leads quite nicely onto the next section in this little story, coping with / dealing with and moving on.  Until then. MAKE A WILL!!!

Rocks

I love rocks, I studied Geology at college and since then they have amazed me in the different textures and types there are that form our world.  Interestingly as I write this there has been a fascinating bit on Countryfile about the canals in the Midlands through the limestone quarries and caves, stunning and something I would love to see sometime.

Then you have the "human" rocks, the ones that have helped me to re-start my families lives.  Please do not feel offended if you are not on this list!

Joanne - My sister in law, someone who has been totally selfless in helping me with the initial bits of the funeral, for being there at the end, for coming to the pub with me and being exceptional with the kids.

Mum B - Putting her life on hold to come over and help with family life from the start of June until September.  Only today has she had the burden of the 3 kids lifted from her shoulders.  One thing is for sure, I would not have had to confidence or drive to clear as much of the house so quickly without her help and support.  I hope you have a lovely week in Blackpool x.

Martin, Phil, Becky & Jamie - For being there throughout this whole ordeal, for helping with the kids all summer and being genuinely nice guys and gals.

Sharon - For organising a lovely afternoon in Taunton for the "Western connection" towards the end of August, a fitting afternoon and possibly the first time ever I have chain drank cups of coffee (Thanks to Pauline & Sandra for lining the drinks up!).

Mum H - For your continuing support and offer to help with the kids on a daily basis going forward.

The School Mums - I would love to name you all, but for my own safety and not missing anyone out I am not going to! - Accepting me and talking to me and making me feel welcome in the playground, it is not just the kids who are intimidated by all the people in the morning - many many lovely ladies and ever so nice :)

The "Camden" Crew, the ones who helped plan and lay on a wonderful send off for Ruth in Crawley after the funeral.  The amount of personal effort that went into that is a testament to all of you and made it a special day.

I was asked if I was seeing a councillor by someone recently, to which I said, "Well yes and no".  You see I talk in the real world about what's happening in my life.  Since being back at work; I have done 6 weeks now, I probably have discussed my situation with 50 odd managers.  All are great listeners and some provide some excellent advice.  

Today is also a very poignant day too, as it was this day 12 years ago that myself and Ruth said "I do".  

So until next time when I will rant about finances, love to you all xxx

So, yesterday was talking about Day 0, today is logically the first day after Ruth died.  

There are many things that you say to your children that you don't want to; "Stop That!" probably being the number 1 offender.  However there is something that you never want to have to tell them and that is that their mother has died.  This was my task on the 21st June 2014.  I had been lent a book about Water Beetles and Dragonflies and this seemed to put it into a good context for me to help my kids understand. Isaac had stayed at his friends house overnight, so I went to pick him up and tell him.  His , reaction was that of total shock, then the tears.  Imogen too had stayed at a friends and she didn't come home until the afternoon.  I took her upstairs and seeing her face melt with the words that I was saying was, well, heartbreaking.

The next few days all seemed to blur into one.  All I can tell you is that the funeral was planned, financial affairs were started to be put into some sort of order (more about this at a later date) and life, well it just carried on.  Isaac went back to School on the Monday, then the Tuesday was his birthday.  Imogen & Hope went to the childminder as planned and then Imogen went to pre-school on the Wednesday.

Gradually the family migrated back westward, Martin first, then Jo and last but not least the fabulous Barbara.  I will talk about rocks of various types in my next post.  Until then, love to you all xx

I have decided that the best thing that I can do, for myself and the children and in the memory of Ruth, my wife to carry on this page.  I intend to write about how the kids are doing more than me, but this opening post from me is about one day, Day 0.  Lots of love, Anthony.

Everyone says I am doing well.  I hope I am and gradually things are getting back together.  A thick skin and a great smile put the illusion on that all is under control.  Getting the call from my boss to ring the hospice that your wife needs me urgently is not the call anyone should get. Less than 24 hours earlier Ruth was fine, well chatty and apparently over the funny turn she'd had earlier that day. Emotions ran wild, I grabbed my bag and ran for the door stopped briefly on the way out to tell the deputy manager I had to go. In the car I rang my mother in law and told her to go. I rang my mum and told her to go, I was stuck at a level crossing just outside Bognor Regis.  I screamed and cried and screamed to Ruth not to leave me, the journey back seemed to take hours. I got there, straight down the corridor with nurses looking at me as if the worst thing had happened and into the room I burst.  Ruth lay there motionless, silent but breathing.  Relief.  Then the tears. I held her close, talking to her. My mum and mother in law were there too. Emotions filled the room. Hours passed, a few friends popped in which was really nice (thanks Rob, Lex, Francis and Nicola). Ruth's dad arrived, Ruth's sister arrived.  Then she opened her eyes. It was a eerie stare no pain but full of fear. She needn't have felt scared. Around 10:30pm Ruth fell asleep and my world fell apart.

*** 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

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!

** 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. 

Becoming an animal

Things are not looking up.

What I thought was bloating is not bloating, but my tumour. Chemo has not worked, the tumour has grown and we can now see in my stomach is the cancer getting bigger. 

This means options are becoming more limited.

There is one more form of chemotherapy that my oncologist thinks I might be suitable for.  But here is the kicker, its not commonaly prescribed within the NHS and so my oncologist has to apply for funding for this treatment, which may be refused and so I couldn't have the treatment, or I would become one of those people you see on the local or national news, appealing to the NHS trust to try and obtain funding. 

Once that has been tried and seen if it works then I become a human guinea pig. This means phase one clinical trials. A phase one trial is the next stage once it has been through, I suppose, animal testing. Again my oncologist is hopeful that he has some colleagues locally (Guildford) that are conducting trials at the moment. But there is also the option to have treatment at the Royal Marsden. 

This also looks like it might entail some stays in hospital so that they can monitor the side effects and after effects of the treatments more effectively.

So 7 months down the line we are heading towards the end. However brutal that sounds its the honest truth. I have put my body through hell and back. I have spent 6 months having chemotherapy to no avail. 

Nothing has worked. How do I feel about that. How would you feel? How would you feel knowing that you had a time limit left? 

All I can do is live life to the full at the moment. 

So we have our trip to Legoland planned for half term and some more exciting opportunities coming up, all health dependant. 

And in the meantime I came across this BBC article. It makes me feel better knowing that if I get accepted onto a trial then although it might not save my life, hopefully it will save someone else's life.

http://www.bbc.co.uk/news/health-27323474

May the Fourth be with you and Revenge of the Fifth

Sorry, I don't pun very often but I couldn't resist this after seeing it all over twitter today. 

Also sorry for not posting much recently. I have been very caught up in my own little world and feeing kinda sorry for myself and just doing some reflecting on things.

So much has happened over the last month that I find myself wondering where the time has come from and equally where the time has gone. 

So round 5 & 6 didn't happen. Basically my bowel was on the verge of becoming obstructed again and so they deemed it prudent not to introduce any more drugs into my system and add to the pressures exerted on my digestive system. So once again I have not completed a course of chemotherapy. 

I can't decide whether this is a good thing or a bad thing. I have had some chemo which will have had some effect on the tumours, we hope, but I have not had the recommended amounts and so the effect on the tumour won't be as great or miraculous as should be expected.

It is bitter sweet, knowing that my body is failing, but can tolerate some treatment but not enough to complete the course.

But I cannot dwell on that, I had more important things to plan for... a certain young lady turned 1.

Yep, on the Thursday following non - chemo we headed to the West Country for some much needed rest, relaxation & family time. 

L-R Jamie, Sharon, Phil, Becci, Mum, Dad, Me holding Hope, Tony, Jo
Front Row Isaac, Hattie, Imogen, Alfie

We had a lovely time and managed to get this lovely family shot in my parents garden. In the afternoon we took Hope to her first Taunton Scout & Guide Gang Show, and their 25th show. This brings back all sorts of memories for me. I was in the first Gang Show in 1989, I've been an Edwardian Lady, an Alien and all sorts of things in between. I was presented with my Baden Powell trefoil by Betty Clay (Lord Robert Baden Powells daughter) on the opening night in 1994, setting a trend that had been followed by a range of guides and young leaders through the years. 

On our return back to Crawley it was time to start preparing for our next big adventure & one of our once in a lifetime events. It was time to think about Thomasland.

I think Thomasland deserves a post of its own, so i'll save that for later and just tease you with a photo....

Following Thomasland there was my Mummy & Isaac day. We went to Brighton and had a great time in the sea life centre, where Isaac overcame his fear and touched the starfish in the rock pool. We also took a trip on the Brighton Wheel and had some lovely chips on the beach while Isaac played and collected stones for our garden.

On the wheel

Looking at the turtles

Through the rest of the time I have been back and forward to Guildford to see the palliative care pain consultants, eventually got my 'emergency' CT scan, 3 weeks after it was requested!!!

And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.

School admissions

Yep, it's that time if year when nervous parents all over the country are finding out whether their children gave got into reception at their preferred school.

Some are disappointed as they did not get their preferred or catchment schools, some have the terrifying prospect of 2 school runs for 2 different children.

Some like me, still don't know. All West Sussex county council can tell me is 'check your junk folder' or 'wait til 3pm'.

I am a digital junkie, I was checking my junk folder every hour with my normal email and frankly waiting til 3pm is not acceptable. Surely with her name and date of birth, plus first preference, they can check whether the email was sent & whether I made a typo in my email address. But no, waiting is my option. 

And what about the fact that I have to do this again next year for Isaacs junior school place, & in 2017/18 for Imogen's junior school place & Hope's reception place. 

And then again for senior school, then there will be UCAS applications, job applications. It's a never ending cycle of applying online or paper. When will the process improve?

a quick update

This is just a quick update about chemo and treatment generally.

My FB and twitter followers will be aware that round 4 was really quite rough. I started vomiting while the oxaliplatin was being infused and managed to fill 4 bowls (thats about 4 litres) and kept vomiting like the other three times. 

What was different this time was despite taking all the anti nausea medication, the nausea did not go away. I have felt like death warmed up for the last two weeks. I was sick a couple of times as well. Proper gut wrenching vomit, which gave me back spasms and left me in an immense amount of pain as well as wondering what the hell was going on.

It got to the point where I was dreading yesterday as I didn't think I could put my body through another two cycles. 

To cut to the point. I didn't have too. I still spent the same amount of time at St Lukes yesterday, but I was deemed to ill to have another bout of chemo and so yet again it comes to an end before the natural conclusion. 

We are off to Somerset shortly and I will update further on why I was not able to have chemo yesterday.

5 year olds

It must be hard being 5 1/2.

You are no longer the youngest in the school, but doing proper learning, no more of this EYFS (early years foundation stage) learning through play. But reading, writing, science, literacy, numeracy & a whole host of other topics are covered over the typical week at school. 

If you are my 5 year old then there is another pressure on you. You aren't the baby and are expected to set an example to your younger siblings and behave in a way that proves one day you will be a responsible adult. You are learning the behaviours that are expected by society all the while battling the pressures placed on you by school (Micheal Gove has a lot to answer for here), your parents and your peers.

My 5 year old has another massive stress placed upon him. He knos his mummy is ill, his mummy has been ill since he was 3 years old. In all honesty he probably cannot remember what it was like to have a mummy who isn't ill. I know adults who are struggling to cope with my cancer diagnosis and the seriousness of it. We have never hid anything from the children so they too know how serious it is. At 5 years old this is mind blowing stuff. 

The way Isaac copes is outstanding. He is always smiling, and laughing. He has his moments. The big one at the moment is lying. Only little lies, for example 'did you sit on the windowsill and squash the coriander', 'No, mummy'. I know he did, I saw him do it, but he says he didn't, or he says Imogen did it. I cannot tell you how sad this makes me. 

Yesterday's squashed Corriander plant (how middle class does that sound!!!) was the final straw. I told him I knew he was lying, I had seen him do it and it made me so sad that he wouldn't tell me the truth. Then I couldn't help myself and I cried. I told him that he was making me so sad I was crying. Emotional blackmail, probably, but weeks upon weeks of 'Imogen did it', 'Hope did it,' or ' I didn't do it' had broken me. 

I'm not proud of the way I cried in front of him, nor of the way I lost my temper with him and sent him to his bedroom for 30 minutes. But it seems to have worked. 

This morning a light up balloon which Imogen got for her birthday was popped. When asked who did it (& I knew it was Isaac, Imogen loves balloons and gets distraught when they pop or deflate) Isaac owned up. 'It was me mummy, I'm sorry.' 

I gave him a hug and told him how proud I was of him for not lying and for owning up. 

Then we went to MacDonalds for breakfast as a treat.

Don't forget my children are trying to raise awareness of Bowel Cancer, by posting #bellyselfies, please get involved and post your children's #bellyselfies on social media too.

Baby Hopes Belly selfie

Isaac and Imogen's belly selfies

My belly selfie.

Silent Sunday

Peripheral Neurophathy

Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.

When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital. 

The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.

So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold. 

Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.

Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.

I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it. 

I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.

Even the duvet and pillows being cold causes me problems and tingling.

Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold. 

I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing. 

Peripheral Neuropathy - Making life difficult for cancer patients

Silent Sunday

One Outfit, Three Children, 5 1/2 years!!!

Hypocrisy

Hi, my names Ruth & I am a hypocrite.

As I sit here giving Hope her lunch of nice healthy carrot sticks, cucumber pieces, water, cheese, ham and fruit I realise that yet again cancer has given me something to beat myself up with.

I'd love to be tucking into a healthy salad with plenty of greens and veggies. However if I want to have a peaceful afternoon not in pain I will settle for some supernoodles, or a pot noodle or some other piece of processed food.

These are the foods that don't mess me up and mean I can function on something like a normal level. 

But there are some many sticks as a parent to beat yourself up with and one thing I always thought I would abide by was the saying that I wouldn't make my kids eat something if I wasn't going to. 

Nothing makes me crosser than people that make their child eat something but won't try it themselves. There are some exceptions to this rule. I don't like olives, I occassionally try an olive but I still don't like them, but I would not force my child to eat one either. 

However the number of children I have come across who do not have these boundaries enforced is insane. Children on scout camp who do not like potato wedges, but will happily eat chips. I don't like chicken casserole, but will eat chicken nuggets. 

So I am now a hypocrite. All too soon I will sit at the dining room table with my children while they tuck into a roast dinner with all the trimmings and I will try and force some down, knowing that it will wreck havoc on my digestive system and I'd far rather have a bowl of BBQ  beef supernoodles, sweetcorn relish and baked beans, followed by a muller greek style corner cherry yogurt (no other flavour will do at the moment).

Sacrifices

When you first pee on a stick and get that positive reaction you know your life is going to change beyond recognition. You know you are going to have to make sacrifices. 

No more long Saturday & Sunday lie ins with the papers and a huge bar of dairy milk. No more spur f the moment walking weekends to Scotland or the Lake District. Things need planning. 

However having a baby does not mean you have to sacrifice everything. 

Flicking back through thus blog will show you some of the amazing things we gave done with our children. Imogen went to her first music festival at 6 months old, we've been on scout & guide camps. Weeks in the open air with no distractions. My children gave  a healthy respect for outdoor cooking on open wood fires, they have been caving & to the home of scouting & guiding. They have celebrated girlguiding uk's centenary at he top of the London Eye. 

They are also well versed in British steam railway history, they love nothing better than the smell of coal and the slower pace of life illustrated by a steam train.

This is something you accept when you make the monumental decision to have children.

What I cannot accept at the moment is all the sacrifices I am having to make because of bloody cancer.

Everyday I have on this planet is now so precious to me, I am edging ever closer to that moment when my children and my husband will have to move on without me. The time I have left is all about creating memories. 

I did not ask for this. I did not ask to have my lifetime taken away from me. I did no ask to have to listen to unsympathetic doctors who have no idea of what you are living with, have no idea about the realities of living with death being just around the corner and the balancing act you play dealing with that and the demands of a running a household, with a very young family. 

Your life is no longer your own, it is dictated by hospital appointments, district nurse appointments, making sure you have enough pain relief or other drugs in the house or on you to ensure that you can get through another day without weeping in pain or snapping at the children because everything is just so exhausting. 

So today we created some beautiful memories for Imogen. I truly cannot believe that she has been in my life for 4 years. She is a whirlwind of tantrums and determination, of tenacity & love. Her smiles and intelligence are second to none and I would not have missed a moment of her life so far. 

The absolute delight I have experienced in being her mummy is incredible, from the way that she saved half her birthday presents on Thursday so that she could open some when daddy got home puts a lot of grown adults to shame. To the way that she chose her birthday party so carefully. Who would have thought that a group of 3 & 4 year olds would respond so positively to making & decorating biscuits and cupcakes this afternoon, but they did and I am pleased to say that there are some definite GBBO winners out there!!

More on customer service

I blogged a couple of weeks ago about some disastrous customer service I had received over a couple of days, and am pleased to say that some things have been resolved and some are still on going. 

The Long Tall Sally issue was resolved remarkably quickly. A lovely CS rep agreed that it wasn't good enough to leave me waiting 4 weeks before informing me something was out of stock so I got a more expensive item for the same price and had a refund of my delivery charges which I was very happy about. 

Southern Railway unfortunately have still not responded. I have chased them up today to limited success. But I shall keep blogging about them until they rectify the situation that left me embarrassed and out of pocket.

In the meantime the news last week that the NHS has drafted in Sir Stuart Rose to help with customer service is music to my ears. I have long wanted to write about the woeful customer service that I have experienced in the NHS and now at last I feel I can. 

Imagine this scenario.

You have decided to take advantage of one of THOSE sales, you know the ones I mean, that start at 8am Boxing Day and definitely end some time on a Monday. You've driven to the retail park, found a parking space, (persuaded the husband that you really need a new sofa/bed/dining room table), entered the store and found an assistant. You've chosen the furniture you want and it comes to sign the deal.

But instead of signing the deal there and then, the sales person disappears and comes back a few moments later and says that you can't sign the deal until Wednesday. 

Do you accept that? No, why would you. You are there to make a purchase and want to make a purchase there and then. 

Why, then do we accept this from the NHS?

My previous admission to hospital and subsequent transfer to Royal Surrey was, I was told, an emergency. Why then having been transferred on Friday did I have to wait until Wednesday to get any kind of treatment or test? Then having had the treatment and tests was I told that there was nothing they could do this time and left sobbing on my bed with no one (nursing staff etc) knowing that the Dr had even been in to see me. 

Imagine another scenario. 

You have £50,000 to invest (yeah, wishful thinking, I know). You call the bank/financial advisor to make an appointment to see them and discuss this. Rather than offering you a specific appointment they tell you that the only way that you can see someone is if you arrive at 9am on Tuesday morning and wait until they are free. This means that you might be seen at 9.15am or you might wait in the waiting room until 4,15pm. Do you accept this? Of course not, you call another company that offers appointments. 

But as an inpatient in hospital this is precisely the scenario you face day after day. You see someone who says you are going to have an endoscopy, or a CT scan or some other procedure. But no one can tell you what time it will be. Frequently I have found myself being taken for procedures during visiting hours. This leaves me wondering whether my visitors will turn up and then leave or what they will be told. Some procedures mean that you don't get taken straight back to the ward so you might miss your only bit of normal life due to the inability of the NHS to schedule, 

Now, I know there are emergencies and these take precedent. But what about the patients. These people are in hospital and are at their most vulnerable and there is no thought given to treating them like human beings. Because you are an inpatient you feel like you are not an equal member of society. 

I was transferred to Royal Surrey as an emergency, yet it wasn't to much of an emergency as I wasn't given any kind of treatments or tests until Wednesday. 5 days of waiting. 

This wouldn't be acceptable anywhere else, why is it acceptable in the NHS?

Why can the NHS not give people times for appointments as inpatients to ensure they don't miss out on seeing their loved ones, who may have travelled a considerable distance to see them. 

I could go on and on. I could tell you about the fiasco of dealing with multiple NHS trusts with different rules and procedures who can't communicate with each other. The contradictons and excuses given. 

What it comes down to though is that because the NHS doesn't have shareholders and profits, it isn't accountable in quite the same way as a business and so the 'customer' will never be the focus of the organisation in quite the same way. This is the real problem with customer service in this country.

Silent Sunday

Crafting in 2014

Customer service is dead

Yesterday I decided to take advantage of Southern Railways plusbus scheme for my journey to Guildford. There were several reasons for this.

1. It sells itself as being cheaper than the bus

2. It alleviates that need for the correct change on the bus

3. It should be nice and simple.

Alas that is not the case.

Despite checking at Three Bridges that the add on was valid on all bus routes in Guildford and being assured that it was, it turns out it isn't. So I get on the bus, show the ticket and am told 'Sorry Love, not valid on these buses'.

I scrabble around for my purse, sort through my change and eventually purchase a return ticket that cost less than the plusbus add on. Then I do what any 21st century blogger does, I tweet about it, in fact over the course of the day I tweeted about it several times. I still haven't received a response. 

So, while eating lunch I decided to resort to email and contacted them that way. This is what I received in reply.

We appreciate you taking the time to contact us. Thank you for your email. Unfortunately it is taking us longer than usual to respond following a much higher volume of contacts than usual. We anticipate responding to your email within 10-14 days based on our current volumes and we are working hard to reduce our backlog. If the matter is urgent please call us on 08451 272920 or tweet @southernrailuk or @gatwickexpress. Please note that if you have sent us a Delay Repay claim, our team will aim to respond within 28 days.

Kind Regards,
Southern Customer Services

How ironic, despite having tweeted them at least 4 times, they do not appear to be able to respond at all. So I'll keep you updated on whether Southern Railway actually train their staff on their products and care about the impact one person tweeting and blogging about them can have.

While I'm on the subject of customer service, I'm having serious thoughts about whether I order anything else from Long Tall Sally. At the beginning of January I ordered a few items that were in the sale to compliment my very small wardrobe of clothes that fit. Everything I ordered was in stock at the time, so I was expecting one lovely parcel to arrive. 

It didn't really work like that, and soon three of the items I ordered had arrived. I was just thinking I would need to chase them for the fourth item when all my hospital dramas of the last two weeks occurred.

Once I got home I contacted them querying the status of the order as it had taken so long to fulfill. I received several contacts from them assuring me that they were trying to source the item, and apologising for the delays. 

I was ever hopeful that I would soon receive the item in question, today I learnt that this is not going to be the case. The item is now no longer in stock. 

I have fired off a very cross email to them containing some emotional blackmail regarding aggressive cancer, very young children looking forward to seeing mummy in a onsie too etc etc. I shall keep you updated on the progress of this too.

I know I seem grabby and demanding, but as a consumer if something is in stock when ordered you do not expect to receive an email a month later informing you it is now out of stock.

Today's news

Well, the headlines.

The tumour hasn't grown, but equally it hasn't shrunk which seems to suggest that it hasn't responded to the current chemotherapy regime of Irinotecan, 5FU and Avastin. 

This means that I need more aggressive and evil chemotherapy. This means more oxaliplatin and 5FU. 

You may remember oxaliplatin or poxy oxy as it is known amongst the bowel cancer patients. It is the one that cause peripheral neuropathy, you know, the tingling in the fingers & toes and numbness in the cold. 

I cannot wait, luckily I don't have too. Dr Cummins wants this to start on Monday! yep like after the weekend!!

I will be having this fortnightly so at a slightly lower concentration than I had previously, and I'll have 6 initial sessions, then another scan to see what the progress is. 

Hopefully the removal of the Irinotecan and Avastin will curtail the bleeding and so that will alleviate some of my worries.

Don't be under any illusions though. I am still very ill. If this lot of chemotherapy does not work, we have to start looking into alternatives, radiotherapy, trial therapies, anything to try and target this awful disease. 

In the meantime I read about an app you can download to help scientists try and find a cure for breast cancer. So if you or your significant goer, or anybody else you know is a gamer, visit

http://www.cancerresearchuk.org/support-us/play-to-cure-genes-in-space 

and download the app. It's free, and helps fight cancer. 

On my 12th day in hospital, the consultant said to me

We have a plan to send you home.

But before we get to that let me give you a quick run down of my week in Royal Surrey. 

After 2 nights in a bay with 5 other women (mostly elderly, some missing some marbles, several deaf ones and most of them unable to use their buzzer and who insists on shouting for the nurses) I was moved into a private room. 

There are benefits and drawbacks to this. 

I don't spend the time my children are visiting telling them to be quiet etc, I don't have to worry about using my headphones for the radio or tv I am choosing to watch and can nap to my hearts content. On the negative side, it is very isolating. You don't have a constant nurse presence or anyone to chat to, even if I don't want to chat a lot of the time. 

A couple of times I waited 20/30 minutes for my buzzer to be answered or pain relief to be bought. But I am planning a post on this later.

Despite the fact that there are consultants available over the weekend nothing got done. Even on Monday and Tuesday nothing really happened. 

On Monday I got a chance to look at my CT scans and see both my liver mets and my tumour in my stomach. But I really felt like screaming, feet were dragging. After all I had been moved because I was and emergency and needed rapid treatment and in my mind nothing seemed to be happening. 

When I finally saw the consultant on Tuesday he told me that they had decided to do another endoscopy on Wednesday which may invovle having a shunt inserted into my small bowel to prevent it narrowing. The other reason was too look at the tumour and try and ascertain which blood vessel needed embolising to prevent further bleeding. 

I spent Wednesday morning waiting and was finally taken down to theatre at 12:30. The reason I was taken to theatre was because I was going to have a general anaesthetic. I am a bit difficult to sedate apparently and need quite a large amount of sedation relative to a normal person. But can someone please define normal for me.

I woke up in the recovery room with a huge needle in my left arm, with my fluids going through it. It was really sore and I couldn't wait to get it out. 

After about 45 minutes I was taken back to the ward and hoped to get the cannula out before the children arrived. Alas that didn't happen, but once the fluids finished you can bet I was on the case and buzzer to get it out. As I type (4 days later) I still have a scab and substantial bruise where that cannula was. 

I had hoped to see the consultant later that evening, but nothing. I had hoped to see Dr Cummins ( my oncologist) at some point as he was the person who requested my transfer, but nothing either.

I finally saw the consultant late on Thursday and he basically told me he was not prepared to do anything until I bled again. To be honest, he needs to work on his bedside manner. He had no empathy with my fears and did nothing to try and address how I was feeling. He just told me he was not prepared to operate at the moment and all he would do was send me home with a letter for me to give to anyone if I collapse again telling them to take me straight to Royal Surrey for emergency admission to be operated on immediately. 

I was in tears, it was like he was asking me to take my life into my own hands again and put it on hold, hoping I would bleed again. I tried to explain this, he just wouldn't listen and had no reassuran or anything. In all he does not deliver good customer service. 

The team must have been gone for about 5 minutes when Tony walked in and found me in tears. I was not coherent and could not articulate why I was so upset so Tony went and found Paul (one of the other Dr's involved in my care) and came back understanding how I felt and what had been going on. 

Shortly after Tony left Dr Cummins finally arrived to see me. I explained my disappointment at nothing being done and how slowly it appeared to have happened. 

On Friday I finally realised that they were going to let me go home, and so started the preparations for that. I saw Dr Cummins again and we arranged an appointment on Wednesday to follow up my scans. I told him I was interested to know the effect that the chemo I had tolerated had had on the tumour and what the future was likely to be. He thinks I'll be starting a new round of chemo fairly soon.

So, I was going home. I told the staff nurse looking after me that I really needed everything so I could be ready to go home by 4pm as my husband had an important meeting that evening at 6pm. She said that his would be fine. Of course it wasn't and you wait around and wait around. I understand that they need to get drugs from pharmacy, but honestly when you live an hour from the hospital you can't just ring someone once you have your papers. 

But eventually everything arrived (4:30) and I was out of there. 

I have spent the last two days readjusting to being out. I am now in control of my own pain relief which is a blessing and can take it when I need it. It is a big shock coming out of hospital and you need to time to reassimilate into family life. I am still ill, but coming close to getting some answers I hope.