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.

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.

Hospital patients

I've been spending a lot of time in hospital lately, and have been using my keen powers of observation to notice that the same patterns occur amongst patients!! Whether in Somerset or Sussex, surgical admissions or a proper ward, there are some characters that get everywhere. 

I thought I would share this with you. It is intended to be lighthearted and tounge in cheek and not designed to offend at all.

1. The queen bee (remember there are no mixed sex wards so I can only comment on women's things!!)

She has normally been on the ward for a few days and has an opinion on everything. I mean everything; the nursing staff, the clinical staff, the food, the support staff. Given half a chance she'll even have an opinion on your medical condition and care. She spends a large amount of time talking about her numerous and varied medical history dating back to her giving birth in 1901 when you stayed in hospital for a month etc! You really need to tune her out.

2. The rule breaker (May very well be the above, but not always)

Visiting hours are 2 - 8, but her visitors rock up at 11am, always with some sob story. Throughout the course of the day more and more are added until you wonder whether you have crashed a family party. The most I have seen is a total of 15 people coming and going. They are generally loud and will spend a large amount of time talking to other family members on mobile phones. Yes, visitors are lovely, but spare a thought for us who do not have that many people to tag team, or who simply want to spend the morning sleeping and processing what the consultant has told you.

3. The long termer

This patient has been admitted several times to the same ward, or is generally elderly and is awaiting additional support from the community to enable them to go home. They have a lovely relationship with the staff and are always treated with absolute respect & dignity. I always feel a little bit sorry for them as I am sure they would recover better at home, but resources are so limited they have to remain in hospital.

4. The emergency admission.

Again this is normally an elderly patient who has maybe had a fall or been taken ill at home or in their care home and been brought in by ambulance. They spend a lot of time moaning as they have nothing. They don't have their glasses and home comforts. Even a pair of slippers or nightie that is familiar. Their possessions that they came in with are normally bagged up in a patient bag and staff spend time phoning friends or relatives to try and get them some home comforts. 

5. The mystery admission

A person who has a range of symptoms that mean they could have anything and are under a completely different team to the rest of the ward. So when rounds are done, their consultant is either really early or really late. This is normally me - I have been on gynaecology wards, urology wards and sometimes the correct surgical ward!!

6. The Phoenix

When you arrive on the ward this person looks like they are at deaths door. They have probably had major surgery and are recovering well. 2/3 days later the transformation is incredible. They really are a testament to the amazing power of the NHS and it's caring staff.

Then there is the postnatal ward. There are generally three types of mums on these wards. Again this is lighthearted and no offence is intended!!

1. The first time mums.

Nervously gazing at their new additions in awe. Terrified of doing the wrong thing. Sleep deprived as they don't dare sleep in case their precious bundle of joy wakes up. I am so jealous I will never experience that again.

2. The second time mums

Slightly jaded, having been through it all once before. But terrified of having forgotten it all and very nervous about introducing their elder child to their new sibling, especially if the eldest is still a baby themselves (under school age)

3. Third time plus mums

Taking advantage of being able to get a rest from the running of the household and delegating to Dad for a change. When Dad does make it in the children are wearing last years summer clothes despite the fact it is October, there is evidence of a healthy diet of sweets, fruit shoots and fast food and the only thing you asked him too bring for you was clearly forgotten!!

Obviously there are the mums who don't have their babies with them as they are in NICU or SCBU. My heart goes out to these mums, it must be awful for you to have to sit there without your baby, I hope that in the future the NHS can have a private space for you where you are not faced with the heartache.

There you go, a lighthearted guide to the patients in the NHS. If you are ever in hospital, have a listen and a look. I bet you'll see them all. If there are any you think I have missed please leave me a comment and let me know.

The complaint

So I have done it. 

This morning I re read the email I typed on Monday regarding my treatment on Friday night and bit the bullet and pressed send.

I was a bit apprehensive. I had felt really positive about complaining when I was in hospital following the visit from both the sister from SAU and the surgical matron. But I wanted to make sure that the email had the correct tone. 

I re read it several times and felt that it conveyed the right amount of objectiveness and emotion. I hoped I had set the facts out clearly and concisely, I have been known to waffle!! 

I had tried to keep emotion out of it. I have dealt with enough complaints in my time to know that emotion does not help you when complaining, facts do.

So, I took a deep breath and pressed send.

Nothing happened, I wasn't struck down by fire & brimstone! I was able to go about my normal daily activities.

At lunch time I got a phone call from PALS at East Surrey confirming receipt of the email and to let me know there were two ways that my complaint could be handled. 

It boils down to whether I wanted a response in writing or not. 

I had already decided I wanted to make it a formal complaint, whatever that entailed. 

It turns out that that makes at a complaints matter rather than a PALS matter. The reason I want a response in writing is because, although the NHS say both are treated and investigated the same, I think there is a greater level of accountability with a written response.

So now it is in th system, and is being investigated. I will keep you posted on the outcome.

More about support

It's almost a month since my new cancer journey started. I have been thinking a lot about that timeline today and I need to put it down to demonstrate just how amazing the NHS is.

October 15th 2013 - Secondary Bowel Cancer (Peritoneal disease & Liver Mets) diagnosed
October 16th 2013 - St Luke's called to arrange my first three appointments
October 17th 2013 - 4 units of Blood Transfused in Comet Ward at Crawley Hospital
October 21st 2013 - Initial nurse led chemotherapy information appointment at St Luke's
October 23rd 2013 -PICC line in (St Luke's)
October 24th 2013 - first chemo & last breastfeed (St Luke's)
October 26th 2013 - 5FU Pump disconnected (Cardiff!!)
October 30th 2013 - first PICC line flush and redress (Crawley)
November 4th 2013 - Family flu jabs (GP)
November 5th 2013 - Pre Chemo bloods (GP)
November 6th 2013 - Chemo round 2 (St Luke's)
November 7th - November 10th 2013 - Emergency Admission with acute pain (East Surrey), including 2nd 5FU pump disconnection, and 2 unit blood transfusion.
November 11th 2013 - Imogen gets UTI (GP)
November 13th 2013 - Counselling for the children at St Catherine's Hospice, Crawley & PICC line flush & redress (Crawley).

Still to come before my next chemo appointment

November 14th 2013 - Isaac's first play date ;)
November 15th 2013 - Tony comes back from Liverpool!!
November 18th 2013 - washing machine to be repaired!!
November 19th 2013 - pre chemo bloods (GP)
November 20th 2013 - chemo number 3 THE HALF WAY POINT.

We would not have got this far without everyone who has offered their services to us. Whether it has been doing a load of washing, hosting a Halloween party and feeding the children, cooking meals for our freezer, coming round to make me do something creative, providing all the generous and unexpected items for our boxes and bags of love, picking up the children, dropping off the children and just being there and helping me feel like a normal member of society. 

You know what you have done, if we have not taken you up on your offer, do not be offended. Unfortunately cancer is not a sprint, it's not even a normal marathon, I am facing marathon upon marathon upon marathon. Several things have happened this week to remind me that this is not a project with a definite end date. This is an unknown quantity that is going to be hanging around for years and years. 

We are so grateful for all the support and help we cannot say thank you enough, but if I don't get back to you straight away or I ignore you for a couple of days, it's nothing personal, sometimes I just need space to process things alone. Keep pestering me and I will respond it just might take me a while. This has hit like a tonne of bricks, and I have not really had the time to just sit so please indulge me if & when I do.

But incase you didn't get it yet.....THANK YOU FROM ALL OF US

Silent Sunday

Hospital Manicure, to complement the blood taking bruises!!

An apology

Last night, I posted about the treatment I received at the hands of a member of a caring profession. 

I do not want this blog to become about nurse bashing, because by far I have not come across any other people who should not be in this profession.

Even today, the system works. I have been sought out by the sister who handed over my care last night in SAU. 

In turn I have spoken to the matron in charge of surgery and will be submitting a formal complaint about the way I was treated and the things that were said. 

I do not intend to air it in this public forum as you would only get my side of the story and that does not present a balanced argument. 

I hope that this will not dimish your respect for me in telling it like it is. Hopefully you understand that my aim is to present a balanced argument and I cannot do that without inviting that person onto my blog to comment, which I do not intend to do.

Suffice to say, my aim in submitting a complaint is to prevent another, potentially more vulnerable person suffering the humiliation and embarssment I did last night.

The weakest link

Throughout all of todays activities the weakest link has been me and my crappy veins. 

After a lovely 6 hours of uninterrupted sleep, and then several more hours of dozing the failure of my veins to give up a drop of blood has resulted in me having to spend a second night in hospital.

After seeing my colorectal surgeon and his minions this morning, and maybe showing off a picture of baby Hope. He decided that he wanted me to have the blood transfusion that St Luke's had cancelled yesterday because the new HB level was worrying and we needed to stem the decline.

A blood transfusion should be a fairly simple straightforward procedure. This would be my 4th so I thought I knew what to expect. 

However you learn something new everyday and today's revelation was that before they transfuse the blood they have to do a crossmatch. This means that they need a sample of your blood to mix with the blood that they are going to transfuse and check it is not going to clot or react. Far bette for this to happen in a test tube, than in my body.

This meant that they needed one tiny little pink lidded vial of my blood. Could we get one, not before lunch. 

It reads like a bad joke, what do you get if you cross one secondary bowel cancer patient with crappy veins and low HB levels with 2 very experienced ward sisters in SAU? Frustration!!

I am now modelling several new bruises where butterflies (which are tiny needles) have been inserted into promising looking veins, the wiggled around a bit and no blood was forthcoming. I think there were 5 or 6 attempts this morning. I had more a patches than the Black Pearl!!

The last resort was to call an anaesthetist or Dr, but before that the sister had one last try, in the back of my hand there was a vein. This vein yielded enough blood to fill the vial and we rejoiced. I have never been so happy to see my blood.

This blood was o precious she walked it to the lab herself rather than rely on the normal systems. 

So blood taken, time to disconnect chemo. This also overjoyed me greatly as it meant that my blood transfusion could go through my PICC line, which means far less beeping when you move as you do not 'occlude' the pump so much.

Here we encounter another drama. Apparently it is fine for Tony to disconnect my cytotoxic chemotherapy pump in a hotel room in Cardiff and leave the sharps bucket knocking around the boot of my car for a week. But here, I have to be wheeled to the chemotherapy suite, where I am surrounded by curtains and the pump is disconnected all officially by an oncology nurse who is not used to this kind of pump as they don't deal with this type of chemo in East Surrey. Why I don't know, my life would be a lot easier if my chemo could be done in my local primary care trust, but that is a whole other story.

So back on the SAU, and time for the observations before the blood arrives. But that is rudely inteerupted by the arrival of my family. Perfect timing.

Here the nurses were superb. I needed to have my cannula removed as the blood was now going to be going into the PICC line, so the children went and hid behind the curtain while it was taken out. Then we needed to do my BP, O2, pulse and temperature. The sister was fab, she asked Isaac to read off the numbers from her machine and check that everything was ok. 

While we waited for the blood to arrive I enjoyed the freedom of not being plugged into anything, I cuddled and played  with my children and enjoyed the sense of normality they provide. 

The blood arrived and is decided it wouldn't hurt for the children to see what was going to happen. The sister let Imogen feel the bag of blood and how squishy it was and how it looks like ketchup!! Imogen asked how they were going to take mummy's old blood out and we explained that it is more like topping the car up with disease rather than taking away old blood and putting new blood in because I need my old blood too!!

More BP, O2, pulse and temperature checks with Isaac doing the reading and checking all the figures. We also checked Imogen's pulse and daddies pulse, but Isaac was not ready for that yet.

My first unit of blood finished just as the nurses hand over so the lovely sister was prepared for the night staff to start the second unit about the same time I would need my next dose of morphine. 

That didn't happen. Instead I am sitting on a new ward, with liquid paracetamol, considering making a complaint about one of the most uncaring members of the nursing profession I have come across. Someone who left me sobbing and screaming in pain on the floor and made no offers of help to me to move. & who told me that as I was complaining about the noise last night,I should have the decency to keep the noise down as I couldn't possibly be in that much pain. But that is a story for a later date. I need some time to reflect.

NHS Communication problems

Shortly after posting last night things took an unpexcted turn for the worse.

Around 3am as I was making another bathroom pilgrimage I was gripped by some of the most intense pain I have ever had. I felt like something was swelling up on my right hand side and nothing I could do would alleviate this. 

Let me get one thing clear I can deal with quite a lot of pain. I have been in pain while making bathroom visits on and off for at least 4 years now. The cramping I can deal with as I know it is generally short lived while my bowels evacuate. This was a whole new level of pain. I was screaming and crying with the intensity. It hurt when I moved, it hurt as I breathed even opening my bowels did nothing to alleviate it.

I was screaming and crying so loudly that I woke Tony, luckily it didn't wake the children. Tony did the only thing that seemed sensible dialled 999.

He relayed all my symptoms to them as I screamed and cried and honestly thought that this was it. I couldn't believe that the irinotecan side effects were kicking in this soon. The delayed diarrhoea is not supposed to kick in until about 24 hours until after the chemo ends and that was about what happened before so I was worried.

The ambulance crew of Ben and Jules were lovely. They brought some gas and air. Normally entenox is a fantastic pain killer. I have had it for all three births and when I was admitted to hospital via ambulance before and it was fab. I love the slightly light headed feel you get and how you gauge how well it is working. This time it was not touching the pain. I think at one point they said I was an 11/10 on the pain scale.

I got in the ambulance and Ben gave me a canula and some lovely liquid paracetamol, while I continued to suck on the gas and air. The paracetamol is 10 times stronger than normal paracetamol and started to make a dent in the pain. But then we upped the ante and hit it with the morphine and gas and air.

Things continud along the same lines as yesterday throughout my stay in A&E.  I had some blood taken to check infection & HB levels. You can tell the NHS is under pressure, but the nurses absolutely deliver. However I could tell that the to the Dr's and registrars I was dealing with had very limited knowledge of cancer and chemo and I did have to explain things like I was explaining them to the kids again. 

After a chest and abdominal X-ray the Dr came and told me there was some distension in my colon and I was being referred back to the lovely Mr Campbell-Smiths team to investigate.

Things swiftly started to go down hill from here. As I was seeing the registrar and running through all my history and symptoms again someone was knocking on the curtain saying I needed to be moved to SAU. The registrar did tell them they would have to wait as I was being examined and she told me she wanted to carry out a rectal exam, but due to their pushyness she would wait until I was on SAU. The reason for the urgency for me to be moved. TARGETS. I had been in A&E for 4 hours and that was it my time was up. If I stayed longer there would be a fine. I mean how stupid is that. I was being examined by a Dr and the powers that be have determined that I have to move now. So the rectal exam was postponed, and I was moved to SAU.

We got to SAU and the nurse was lovely, she would look into me being able to get something to eat. It was about 9.45 and some toast would have been lovely. She tried to get hold of the ADR, with limited success. 

Tony and Hope had arrived at A&E about 6am and were still with me, but it's fairly boring so they headed home and the long night caught up with me. I took my morphine and oromorph as I wasn't written up for any pain relief yet, and Tony had to take it home with him because it is a controlled drug. 

About 11.30 the Dr came and woke me up to do the rectal exam. I went to the loo (as usual) and came back to find she had disappeared and been replaced with a Macmillan nurse who made a lovely sounding board. The Macmillan nurse listened to me off load for the best part of an hour and left with some next steps and to find out when I could have something to eat. 

One of the staff nurses then came and apologised, there had been a major trauma and she was trying to bleep the Dr to find out when I could eat. When I still hadn't heard anything by the time my next lot of observations was done at 2.30ish I again asked when I could have something to eat. This staff nurse didn't acknowledge the question, but I assumed she would go and find out. Still nothing. 

At this point I was tired, I was hungry. I didn't dare go back to sleep in case the Dr came back and woke me up. Finally Tony and the kids arrived. I was overwhelmed with joy and started crying. He knew something was up and asked why I hadn't been pushing it.

 I just hadn't. I can't explain why. I think it goes back to the feelings of invisibility I have had before. I am in my 30's, I am surrounded by people who generally require a higher level of care as they are in generally 70+. I feel like sometimes the nurses ignore the needs of younger people because we can cope.

I cracked, I pressed the buzzer. Even then no one came immediately. We had the curtains drawn for a bit of privacy. We heard a member of staff say, someone's buzzing, but no one came for about 6 or 7 minutes. Good job I wasn't bleeding uncontrollably of something.

When a nurse arrived I let rip. I told her I was tired, I was hungry. I hadn't eaten since 6.30pm the previous evening, I had been woken up for an exam I hadn't 't had, what was going on. As a patient undergoing chemo and cancer I would have though ensuring my blood sugar remained stable and I ate would have been quite high priority.

Finally at about 4.30 I got some food, there was a choice - tuna pasta salad or corned beef sandwich. I opted for the salad, it wasn't great, but it was better than nothing.

Finally the Dr came back and I asked her why she had not been back to exam me. Turns out she had forgotten all about it, but she had been busy. The team had looked at my X-ray and it appeared that the distension was actually in my stomach so I would need to have an NG tube inserted to try and see if it would take the distension down. I would also need a blood transfusion. I knew that. I was supposed to be going to St Luke's to haveq one tomorrow. My HB levels have dropped down to 7.something again.

So now, I have connected to the free wifi! listened to the new 3 Daft Monkeys album, Of Stones and Bones and had my NG tube inserted and am waiting to find out whether I am speeding the night on SAU or if I am going to be moved to a ward.

Never let it be said I don't live an exciting life.

And people - stop apologising, you have nothing to apologise for. You are reading this, you are thinking of me, you are giving me incredible support. I should be apologising to you for giving you way to much detail about the everyday nuances of my bowels and talking far to much about diarrhoea. But if it makes you think about your bowel habits and go to your GP, or makes you get that lump or mole checked out, it is worth every cringeworthy thing I have shared with you.

Thinking outside the box

Thank goodness for managers and people who can think outside the box. I'll elaborate more in a second.

On Saturday I had my colonoscopy pre assessment appointment. This was basically a tick box exercise which I found very unsatisfactory. The lack of understanding about breastfeeding amongst healthcare professionals never ceases to amaze me. 

The nurse who completed my assessment was very dismissive of my need to breastfeed Hope before & after the procedure and TOLD me that anaesthetics and breastfeeding don't mix, you have to express or give formula. When I told her that wasn't really an option as Hope resists the bottle I was told that I'd probably have to wait until I'd finished breastfeeding as you CAN'T feed for 48 hours after a general anaesthetic. 

I questioned this as I know people have babies under general anaesthetic and feed pretty much straight away and was told that doesn't happen!! 

The appointment was left that she would speak with an anaesthetist and call me on Monday.

Monday came and went & no phone call. Today I was gearing myself up to call, when my phone rang. 

It was the endoscopy department. After confirming who I was she launched straight into her rant.

'We need to know whether you are having your colonoscopy on 17th as we have been told you refuse to stop breastfeeding'

Wow, talk about confrontational. I stopped her at this point. 

I am not refusing to stop breastfeeding, I was waiting for a phone call to confirm whether a suitable anaesthetic was available for me as a breastfeeding mother. 

She told me...I am not a clinician, but no anaesthetic is suitable for breastfeeding you have to express for 48 hours or give formula. 

Again I said that I thought this was not correct and would like to see what an anaesthetist said.

She reluctantly agreed and I prepared to vent my spleen on here about how breastfeeding unfriendly my local hospital was, when the phone rang.

It was the manager of the pre assessment unit, she was not interested in ticking boxes, but interested in working with me to find a solution. 

I explained what I saw happening, so that we could make this work. It's simple really.

Tony & Hope come with me, I feed before I go under, Tony & Hope wander around the hospital, I come round and pump, dump, then feed. 

Fine, she said no problem. 

In reality, I have to be at the hospital for 7:30 so, we will all go to the hospital and drop me off, Tony will bring all three children back and drop them at respective childcarers, then come back, see where I am and follow the plan.

All I can say is thank heavens for managers who have common sense and can think outside the very narrow boxes the NHS seems to use.

Today's dramas!!

So, at 5:10 this morning my beautiful little girl decided that it was time to get up for the day. This is alongside me running backwards and forwards to the toilet all night.

I fed her, she was definitely not going back to sleep so we watched some Airline USA, there is really nothing on other than news at that time in the morning!!

About 5:45 I went and put the kettle on in preparation for my final drink of citramag. 

By 6:45 it was ready to drink and I sat back and thought positive thoughts and it stayed down. I chased it with some water and sat back and waited. 

By 9am, we were all ready to leave, big two breakfasted, laundry hanging on the line, multiple toilet stops completed, you get the drift!!

We dropped the big two at grandmas house and headed to the hospital. 

Little one decided tactics at this point were to scream her way to the endoscopy department as suddenly she was starving.

I booked in, fed Hope and started waiting. The nurse called me in about 10:45 and went through all my details. He also tried to insert a cannula.

I asked him if I could wait in the waiting room and have about 10 minutes notice before my procedure so I could feed Hope again. 

Back in the waiting room, we watched some more BBC daytime TV and waited. About 11:40 I got my 10 minute warning so attempted to feed Hope and waited.

And waited, 40 minutes later I still hadn't gone in so fed her again and checked with the receptionist what the situation was. Then my nurse left, clutching a bag of carrot sticks!!

A different nurse then came out and seemed slightly confused about where I was and despite me being pointed out twice by the receptionist still seemed slightly confused. 

The next bit is slightly surreal, I had not been sedated, but felt fairly sure this new nurse was one sandwich short of a picnic. As we walked up to the treatment room he kept staring at me, finally I asked him why. 

'I have never seen a women as tall as you'  he said. I mean WTF, talk about random!!

I won't fill you in on the details of the procedure, mostly as i can't remember, but unfortunately it was not very successful. 

It appears I had double the amount of sedation and was sucking on the gas and air like it was going out of fashion. But due to my surgery I have a very twisty colon which means that I cannot tolerate the procedure like normal people and am now going to have to go through the preparation all again to have the procedure under a general anaesthetic.

So, having finally got a bit of sleep this afternoon, I am facing another weekend in the not to distant future cleansing my colon and another 4-5 hours waiting and waiting.

Really bowel cancer and its subsequent complications never end.

Hoping for a miracle

Ok, I'm sorry there are lots of puns out there using my new daughters names and I can't help but want to use them.

I thought that I would tell you a bit about her arrival into the world. 

If I am honest, I can't remember much about Isaac's birth other than the pain caused by the ventouse tearing me and the fact that the epidural was not overly successful.

I remember a lot more about Imogen's birth but still cannot remember pushing at all (& I only had Gas and Air and Pethidine for her birth).

Although being induced into labour is not fun and is very time consuming I felt a lot more in control with Hope's birth and hope (ha ha) that by writing it down it will help me appreciate just what I have been through.

When the induction was booked on the Monday I was told I needed to phone the antenatal ward on Thursday to check that I was able to go in. So at 7am I was on the phone and desperate to go in. 

Yep, no problem, come in for 9am. 

So children dressed & breakfasted and bags in the car, off we went. The family dropped me off at the hospital and Tony took the children over to Horsham while I made my way up to the antenatal ward via the new WHSmiths (a newspaper is an essential purchase).

Then began the show. All my observations were done and I was placed on the monitor to check that the baby was ok and I was ok. 

Monitoring done, I was examined and the pessary put in place. 

Then the waiting began. 

When Tony got back to the hospital after dropping the children off we wandered around and tried to get things moving. Then we went back to the ward and had a sleep, then we wandered around the hospital some more (at this point I wondered whether antenatal wards should have treadmills in them to make this slightly easier). By now Tony was bored. I don't blame him I was bored and looking for anything that might be a sign that the baby was on its way. But there was nothing, so I sent him home. Honestly I love my husband, but I know he hates hospitals and sitting doing nothing so him being there was just pointless. It must have been about 5pm by now and I was getting frustrated with a lack of progress. 
I know that this has been less than 24 hours but labour with Isaac was under 12 hours and labour with Imogen was less than 5 hours so having been in hospital for 12 hours and having no visible or even invisible progress was really frustrating me. 

I spent the evening wandering about the hospital and bouncing on a birthing ball trying to get things moving. I wanted to try and get some sleep but my back was not cooperating on that front, although I had been able to have some much stronger cocodamol while admitted so every cloud has a silver lining etc etc.

Later that evening the midwife who was on duty over night hooked me up to the monitor again and we could see baby moving but nothing appeared to be happening with me. 

As the night wore on and the night time wanderings and bouncings continued things started to happen. I was definitely starting to have some contractions, but they were not showing on the monitor. In hindsight I think that there was probably a problem with the monitor not picking up my contractions as once I moved into the delivery suite the contractions were being picked up. 

Around 5.30am I asked to be examined and was over the moon to hear that I had got to 4cm dilated and would be able to be moved across to the delivery suite. 

I phoned Tony and told him to come back in, probably to the delivery suite as things were starting to move. If I had known it would still be another 12 hours I don't think I would have been so chipper!!

I moved across into the delivery suite and was allocated the room with the pool. I was really happy about this as I was keen to try water as a pain relief option. The midwives were just in the process of changing shifts and so I had a midwife for about 20 minutes and then my 'new' midwife came in. 

I had honestly never been so happy to see someone familiar. I had spoken to this midwife previously about my concerns about coming into hospital and about being in control during labour and here she was, my angel - Jennie Hatton, supervisor of midwives. 

I asked Jennie if I could get in the pool yet as the previous Midwife had said I had to wait until I was 5cm, she told me to get in and make the most of it. 

The pool was lovely, once the temperature and depth was right it did feel really relaxing and did help with my back ache and pain control. However as time went on I found that I needed the gas and air as well.

I stayed in the pool until 09.30ish but by this point I was starting to get annoyed that it wasn't quite long enough for me to stretch out and move where I wanted and I also wanted to be examined.With both my other labours by this point I was already 8 or 9 cm. 

I got out of the pool and Jennie examined me. To my disappointment I was only 6cm and things were tailing off. There were 2 options now to get things moving onwards, both of them were going to involve more intervention and not being able to get back in the pool, but I really wasn't bothered. 

It was decided to break my waters and see if that had any effect on the baby making an appearance. If that was unsuccessful then I would have to have the syntocin drip which would ramp up the contractions. 

I moved into another room in the delivery suite and settled down for another nap, while Tony napped in the chair and on a bean bag I seem to recall. 

After lunch Jennie decided that we needed to focus on getting the baby out and so set about organising the drip.

This was definitely the most stressful part of the whole experience. Pre chemo I had good veins and was quite easy to cannulate and take blood from.You may remember that when I had my bowel surgery the anaesthetist could not get a cannula into my arm for the General Anaesthetic and had to put a central line in while I was still concious. We had a similar dilemma while trying to cannulate me this time. After 4 attempts in my hands and wrists the anaesthetist admitted defeat and cannulated me in my foot.

Looking at the trace while this was all going on was pretty interesting and if I hadn't had Gas and Air I don't think I would have coped very well. 

These are some of the bruises that I incurred as a result of crappy veins and the final cannula in my foot.

It took just over an hour to finally get the cannula in and the I was connected to the drip and again waited for things to happen.

The drip was increased every 30 minutes and things really started to get going as it got higher and higher. 

Prior to being in labour I had been quite keen not to have an epidural as I had had bad experiences with them both times I had had them previously. But I am also not an idiot (this might come as a surprise to some of you). I had read about induced labours and knew that it would be more painful and that I was more likely to need interventions and an epidural. 

I had chatted about my epidural worries with Alan (the lovely anaesthetist who cannulated me) and he had allayed a lot of my fears so when it was obvious to Jennie & Tony that I wasn't going to be able to cope for much longer we made the decision to get one in. 

I would like to tell you all about how long this took, but to be honest I don't know. 

When I had been in the pool earlier I had been obsessing with the clock and to prevent the same thing happening again Tony & Jennie had taken the clock out of my eye line so I had no idea of timings of anything. 

Back to the epidural, it was wonderful. It dulled the pain enough that I was able to relax and concentrate on getting to the final stages of labour. 

The epidural seemed to wear off and I remember that I needed to push. 4 pushes later and Hope Kathryn Hayllar arrived into the world at 17:12pm on 12/04/2013

This was a long, drawn out experience which is very different from both my other birth experiences. 

However I cannot fault the excellent care I received from both Jennie & Alan (?) the anaesthetist. I really felt in control with them both and that I was making informed decisions rather than being railroaded. 

& here is another beautiful photo of Hope at minutes old.

Everyone needs to have Hope

So, you all know I was due to have a baby.

Well, I did, 

Hope Kathryn Hayllar arrived at 17:12pm on Friday 12th April 2013, weighing a tiny 6lb 2oz (or 2.78kg) and is amazing. 

I will post more about her induced arrival in a couple of days, there is something I need to get off my chest first.

Although my pregnancy started off fairly easy with far less sickness and general 'feeling crapness' than the other 2, as it progressed I felt worse and worse. There was the permanent backache that I was discharged from physio for as the physio could do 'nothing else'. I ended up taking cocodamol & tramadol to try and control it (unsuccessfully) and sleeping for no more than 4 to 5 hours a night as the pain would wake me up.
I also had a chest infection at about 30 weeks which led to me coughing so much I would be sick. During the last few weeks, some days, I was bringing up breakfast, lunch & dinner and was feeling so run down it was unbelievable.
Then the piece de resistance. At my 35 week midwife appointment I had glucose & protein in my urine. There had been some traces of glucose in my urine before but this seemed to send my midwife into a panic. Off the back of this appointment she booked me an extra scan to check the size of the baby, despite the fact that I was measuring fine for my dates & an appointment with a consultant.

The scan was lovely. Its always nice to have an excuse to look at your baby. At 35 weeks the baby was guestimated to weigh 5lb, so based on the common assumption that foetus' put on about 1/2lb a week I thought I would be having a baby smaller than my previous 2 (Isaac was 8lb & Imogen was 8lb 7oz). The consultant appointment was another matter all together.

WARNING THIS MAY NOW BECOME RANTY, I DO NOT APOLOGISE FOR THIS, I NEED TO HAVE A RANT!!!

Before I rant, I would like to say this.

If you miss, or turn up late to an NHS appointment you know that there will be consequences. I think that it is disgusting that in this day and age you can book in for your appointment and not be told that the clinic is running 60 minutes late and when you finally get in to see your consultant you are offered no apology for the clinic running late. Not even a polite 'Sorry you were kept waiting.'

So, I drove to East Surrey Hospital for my consultant appointment, which was at 10.30. I arrived about 10.15. The midwife took my blood pressure & sent me off to produce a urine sample and then I waited. Now with the lower back pain I had been having, sitting for a long period of time was really quite painful, but you can't walk around a waiting room too much as their isn't much space for that kind of thing.

I was finally called in to see the registrar at 11.40. So 70 minutes after my appointment time. She told me to sit down, I quite politely said that I would prefer to stand as after so long sitting in the waiting room my back was really quite sore and I needed to be able to mobilize and stretch. At that point she could have apologised for the wait that I had had. No, not this women. Instead she launched into an attack about how she would be unable to examine me if I refused to sit down. I said that I wasn't refusing to sit down, I was uncomfortable sitting down and would be able to lie on the bed to be examined. She told me to get up there then. She offered me no help to lie down or after she had finished examining me to sit back up again.
She then asked me if I had doing my BM pricks. I had no idea what she was talking about and told her this and also told her that I didn't know why I was at this clinic. At this point I'll admit I was quite upset, I was hormonal (& pregnant) but also genuinely confused as to why I was at this clinic and why she hadn't looked at the blood test results that I had had 3 goes to try and get (a whole other story there) and I ended up crying and asking her why was I here and what was she talking about, again. She kept repeating that I needed to be doing BM pricks (still no explanation) and why wasn't I. 
Then I lost it - I told her (again) I had no idea what she was talking about, that I did not appreciate being kept waiting with no apology, that her attitude towards me was quite appalling and (very rude I know) why was I 'only' seeing a registrar rather than a consultant. At this point she went and got the consultant.
I tried to calm down while she was out of the room, but all the pent up fear that this panic had generated was hard to ignore. I have a history of depression & although I tend not to google health symptoms I am a member of mumsnet and spend too much time reading pregnancy and childbirth threads and had panicked my self that I might have a problem with my fluid levels or something else. 
When the consultant came into the room she was not a people person. She called me a silly girl (!) and told me that if I had seen her at the start of my pregnancy rather than the consultant who had signed me off as low risk I would have been deemed high risk due to all my history. I was furious. The women had not even spoken to me and was now making me feel even worse, like I was putting my unborn baby at risk. I told her that I did not appreciate this kind of panic at such a late stage in my pregnancy and that I still did not know why I was here, I told her that I thought it was unacceptable to talk to me like that, to not apologise for keeping me waiting for so long. I also told her that I would have appreciated someone actually looking at my blood results and telling me what I was doing here. 
finally, I got an explanation. There seemed to be some assumption that the glucose in my urine demonstrated that I had gestational diabetes. However this was not backed up by my blood results, from my Glucose Tolerance Test at 28 weeks or the BM prick test they did next or the scan that I had had on Tuesday (& I now know what a BM prick is). But they wanted me to see the diabetes nurse & consultant again.


So, we had Easter, mine involved 2 false labour scares and an Easter Egg hunt with an Easter Bunny and a Butterfly at Standen, a gorgeous National Trust property near East Grinstead.

So, the diabetes nurse. 

Well, she was 30 minutes late, but apologised as she had been called to deal with an emergency. Not a problem, SHE APOLOGISED. Then she had a look at my results. Shock Horror, she thought that it was all a bit of an over reaction. All my blood results were normal, the glucose in my urine was not a concern as it might be that that is the way that my body processes it. There was no reason for me to see her again and she wished me all the best with my pregnancy.

And then back to the consultant ( I was now almost 38 weeks). She was not happy with the diabetes nurse. I had to relate to her (the consultant) that there was nothing showing in my bloods that concerned the diabetes nurse and she was of the opinion that the glucose in my urine was how my body processed it. Again the consultant took her anger out on me. She said that it was not the nurses remit to be telling me that there was nothing to be concerned about and she should have been getting me to monitor my blood sugar (this is what a BM prick is all about) for a week to see if there were any indicators. At this point again I was unhappy. How was I supposed to know that this was what the consultant had expected? I am not a mind reader, and I told her that and maybe she needed to work on her communication with her colleagues (I really can be quite rude when upset and being blamed for things I have no understanding of or control over). She then told me that due to her not knowing whether I had gestational diabetes or not I would need to be induced at 38 weeks.
That turned out to be Thursday, so I had a date and knew that I would be meeting my baby soon.

This has turned out to be longer than I anticipated so I shall let you know about baby Hope's lengthy arrival in a new post very soon.

Resoutions

Now most people have made their resolutions and broken them by the 2nd of January. However I promised myself at the start of the year that I wouldn't make or indeed break any resolutions until I was free of chemotherapy.
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow

Paranoid Android

Wow, this weeks feels like it has been so busy.


Monday I had a follow up with my consultant at East Surrey. I know the NHS is free, but I waited almost 75 minutes after my appointment time to go in. Luckily I didn't have the children with me, otherwise I think we would have gone stir crazy. 
I have to admit something now. Since November when I went back into hospital with the adhesion/blockage, I have been paranoid about what is going on inside me. And not just me, with the children as well. Someone on a well known parenting forum linked to this and I have been over analysing everything since. Particularly with them, I am so worried about them and especially the likelihood of them getting cancer in the future and it all being down to me and my crappy, faulty genes. It was good to see my surgeon and hear yet again how well I was looking and talk to him about the over analysis I am doing and the paranoia I feel about everytime something is a little different I worry about having to come back into hospital again. I never used to worry about going into hospital but having been in so often and having to go for chemotherapy has really made me, not scared about being readmitted, but annoyed more than anything that this cancer has taken over once again and I am not in control. 
He was very reassuring, and helped me realise that things are probably not going to be normal for a while and it is usual to be overanxious, especially given the fact that I had been readmitted. 
It has also forced me to reassess some of the things I do and more specifically my sedentary lifestyle. 
This Blog is written by a friend of mine, who I really admire for putting this on the internet and chronicling everything. It has inspired me to unearth the Wii Fit board and associated game and also start back with my yoga practice. Its also made me look at my diet and I realise that I need to set a better example to the children. After all how can I expect them to eat things that I don't. So I have started feeding them, and hence me, more fruit and veg. 
I have realised that I do actually enjoy the taste of fresh, seasonal produce and can make a real difference to my health if I continue with this. 
In other news, I am due to have chemotherapy number 7 on Wednesday, which means that after the obligatory 2 weeks of tablets I will have one left. That last one falls 2 days after Imogens 2nd Birthday. 


I can't quite believe how far I have come. When I think back to October and having my birthday, PICC line inserted and first chemotherapy session all in one week, I look at where I am now and know that this blasted disease has made me a stronger, determiend person who is assessing what they want from the next few years of their life. 


Watch this space!!!!

Welcome to 2012, some answers at last

Happy new year. 


Yeah, I know I am a bit late, but hey, better late than never!!!


Today I have finally got some 'closure' on the fiasco that was my pain relief after my surgery in July. 


I can't believe it has taken this long to sort out, but appears that despite me having been to East Surrey Hospital to have Imogen (she'll be 2 next month), twice for the abdominal pains in the summer & twice in November for the 'blockage' and telling them my phone number on each occassion they still had it incorrect. They finally thought to use my mobile number so I managed to give them the correct number & arrange an appointment with the head anaethitist and the senior pain nurse.


To summarise what happened after surgery, and to save you having to trawl the pages of this blog to find it. 

• My epidural was turned off and then not turned back on for about 6 hours despite repeated requests for it to be turned on
• When my PCA (patient controlled analgesia) ran out during the night. I was told that I couldn't have anymore and I would need to have paracetamol.

Well, I actually felt that I was being taken seriously now. 

I had three questions I wanted answered. Here they are, along with the answers I was given

1. Why was the epidural turned off? It turns out that epidurals move up the body and if they get too high, they can cause problems with breathing. My epidural had moved too high and so it had to be turned off. However this was not explained at the time and once it was turned off and the nurse walked away the call button was not left in my reach so I was unable to attract the nurses attention. 
2. Why did it take so long for my epidural to be turned back on? The combination of pain relief that I had, eg PCA and epidural, is not common and so there is a high probability that the staff did not realise how much pain I was in. Also 'out of hours' there are only three anaethetists on duty - 1 for emergencies, 1 on the labour ward & 1 for theatre. If the theatrical anaethetist was busy then it would have taken time for them to come to me. I can accept this. But once they had started to contact them why did no one communicate to me that they were trying to contact them, rather than leaving me waiting and wondering.
3. Why was I not given more morphine when I needed it? I was 'written up' for more morphine so the only explanation given was that the junior doctor who was on duty was worried about giving me too many 'opiates'

I also talked about the lack of communication during that first evening and how I felt that sometimes the staff thought that I was exaggerating things or that because I was younger I would be able to cope rather than treating me how they would treat a more mature person. However I also need to remember that there would have been people in the surgical stepdown unit that may have had breathing difficulties or other issues that were potentially more important than my pain. 

However because I was admitted as an emergency and already suffering pain my threshold would have been lowered and my pain receptors already firing. This meant that I needed a higher level of pain relief, hence the combination of epidural & PCA. The anaethetist and the pain nurse also agreed that more training was needed for the nurses on this type of situation. 

The experience has made me more nervous about trusting healthcare professionals. I used to trust what they said regardless. Now I ask more questions and do not take everything at face value. Despite this I still have a huge amount of respect for what you do and know that I could never do it.

One of the things I have learnt over the last 6 months is that there are stars in the health service but there are also things that can be improved. A one size fits all approach does not always fit. I always feel like an anomally. I always feel too young when I am on any ward and sometimes feel rushed or ignored by the doctors or nurses. 

I have, therefore, resolved that if I get readmitted to hospital for any reason I will ask questions and questions and questions. I actually don't care if it annoys people. I am an intelligent young women and also a customer and I deserve to be taken seriously and have my questions answered.