About this Blog

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

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

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

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

It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.

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

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Monday, 17 February 2014

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.

Thursday, 6 February 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.

Wednesday, 5 February 2014

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


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

Sunday, 2 February 2014

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.