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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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, 30 December 2013

A handmade Christmas

4 pairs of Father Christmas socks, a pair of Nordic inspired socks for Hope, slightly to the right of he picture Hope's Nordic inspired hat!!

Friday, 27 December 2013

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.

Tuesday, 24 December 2013

Every cloud has a silver lining.

So, you probably want to know what happened. How I ended up spending 2 more days in hospital and getting yet another ambulance ride.

When I woke up yesterday morning, something wasn't right. I felt wobbly & drunk. I knew something was up, but hoped I'd be able to ride it out. In fact I thought I needed to eat something. My body had different ideas and decided what I needed was to collapse on the floor.

Before this happened I had had the presence of mind to make sure all my children were safe. Isaac and Imogen were eating their breakfast and I has put Hope into her highchair as I definitely did not want to fall on her. 

So I went into my kitchen to make my breakfast and collapsed. I do not know if I blacked out or not, but I can remember sitting on the stairs calling Tony telling him I had collapsed. This is where it gets scary. He told the ambulance crew later that he was not able to understand me. Luckily the children hadn't seen me on the floor. But this definitely worries me.

When he got home he helped me into the living room, then I really wanted something to eat, but my body was still rejecting that idea and as I was trying to make my toast I came over all wobbly again. I was definitely not dizzy. It was definitely more scary than that. Drunk or funny feeling, but not dizzy or light headed. 

So, he got on the phone to 111. They scared me slightly, they were asking me questions I think trying to ascertain whether I had had a stroke. No, I just felt wobbly and drunk. They decided yet again I needed an ambulance and so Tony helped me upstairs where I had another wobble and I waited. 

I'm sorry, Sonya, I was really looking forward to making cinnamon and raisin bread with Jake, Isaac and Imogen. Maybe next year. 

The ambulance arrived and the crew were in no doubt that I needed to be checked out in hospital. Imogen was not happy about this, but I gave her my chemo heart and she accepted that mummy needed to be made better.

So my blood count was 7.2, on Tuesday, before chemo, it was 11. There was something going on.

This time there was some unexplained bleeding, this has been investigated and has cleared up on its own although will need to be monitored. I have had 4 more units of blood and as I mentioned every cloud has a silver lining.

I came into hospital with one red and yellow sock for Hope for Christmas, 4 Father Christmas faces, 8 Father Christmas socks and 4 soles. I am leaving with 2 beautiful scandi inspired socks for Hope and 4 pairs of Father Christmas socks (2 pairs still require soles) and all 4 pairs require the finishing touches.

As well as that I have finished watching Ripper Street, and started my Breaking Bad journey. 

And very soon I shall be heading home for Christmas!!

Thursday, 19 December 2013

What happens after Chemo?

Apologies for poor quality of photo and the reflection of my hand.

I've talked alot about how my specific chemo regeime works but I haven't told you about all the other drugs I have to take to ensure that my body copes with the chemo. Before every chemo I get a nasty injection. When I say nasty I mean one that actually causes about 5-6 minutes of pain after it is injected. The nurses try to couter act this by slapping your arm after they have performed it. But it still causes pain.

Then there is the plethora of anti sicknes drugs. 4 tablets in total. I am lucky I do not seem to suffer with sickness during the chemo, but I have seen people vomiting while their chemo is being administered. It truely is horrible stuff. You cannot predict how someone will react until the chemo is being administered.

Once chemo is finished you get your bag of drugs. Yesterday, due to some of the staffing shortages I have mentioned before I had to collect mine from the oncology pharmacy. No great problem, it is on my way out, but it closes at 5pm and I was cutting it fine. The previous three chemo's I wouldn't have made it as my final infusion didn't finish til 5.30. As it is it wasn't ready for another 40 mintues so I was still waiting at 5.40.

So, when I get home I have to sort my drugs. Some have to be taken before food, some after food, some before a certain time. Some have to be taken 3 times a day, some 4 times a day and some twice a day. It is a real nightmare remembering what to take and when.

At the top of this post is a photo of all the tablets I took this morning.

The top two are the most important.

Morphine has to be taken 2 times a day, about 12 hours apart. This is slow release morphine and I can really feel it working now. I take this when I get up and before I fall asleep.
Paracetamol is standard over the counter paracetamol. No more than 8 tablets in 24 hours. What I also have to run alongside this is liquid morphine (oromorph) which I can take as and when I need it for 'breakthrough' pain relief. It works within 15/20 minutes and is amazing. The main problem is it is so liquid I need to take it with a syringe which looks a bit dodgy when you are out and about and need to take some.

The busacopan is a new addition this time as towards the end of this cycle of chemo I was suffering more and more with excessive cramping and discomfort. This has to be taken 4 times a day. I think that means Breakfast, Lunch, Dinner and before bed.

The next three are antisickness. All have to be taken with or around meals.
Domperidone is the nicest of the three. It has no nasty side effects and I can continue to take it if I feel sick through the whole of the cycle.
Dexamethasone is a steriod. Steriods keep you awake if taken to late in the evening. This I have to remember to take before 6pm otherwise I spend most of the night in fitful sleep rather than nice restful sleep.
These 2 I have to take for three days.
Ondansatron is another steriod. I have this before chemo and as a one of dose the morning after.

Finally Loperamide, better known as Imodium. I am sure you know what this is for!! However my dosage instructions are far more intense and to all intents and purposes I don't think it works. I take 2 after the first 'loose stool' and then 1 tablet every 2 hours, until things firm up. I normally only have to take this for 2/3 days as it is to counteract the evil side effects of the Irinotecan.

Finally I have my 5FU pump. Which some of you have seen and starts of as a hard tennis ball sized pump connected to my PICC line and gradually deflates over 46/48 hours when I go and see the most annoying IV nurse to get it disconnected.

So you see, chemo is much more than long day in Guildford!!!
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Tuesday, 17 December 2013

A very special quilt

Yesterday I went to what I thought was a normal grown up Christmas party. There was food, music, good friends, sober people (me & the other drivers), drunk people (people that had managed to arrange a lift) and a secret Santa.

So the time came for the secret Santa. I expect to be last at these kind of things, I was normally picked last at school for most things, and my name would never be picked for any of the extra curricular stuff. So it was no surprise when 'Santa's sack' was getting emptier & emptier and I was still presentless.

What I was not expecting was what happened next. 

I was given a card. There was a message inside from everyone there and then I was given the biggest present by far.

Inside was the most incredible, beautiful handmade quilt. It had been made by my amazing friends most of whom had not sewn since school days, I would imagine. Coordinated by the amazing Button Becky from her incredible stash of vintage and quirky, kitschy fabrics. 

I was speechless, again. Once again my coniving, devious friends have managed to reduce me to tears with their generosity of spirit, their thoughtfulness and the time that this must have taken. We're not talking people with amazing amounts of time on their hands. These are mothers, wives, people running households and errands for between 1 & 4 children. Juggling their lives, their husbands lives and their children's lives and they had made time in these lives to spend time making something for me. 

I am humbled by this. Words fail me (clearly not, seeing as I'm blogging about it!!) 

So to Carol, Sarah L, Sarah S, Becky, Debbie, Kathy, Karen, Charlotte, Emma, Alison, Rachel and Becky's neighbour who made my beautiful quilt thank you from the bottom of my heart. 

As you can see from the photo above the children and I love it, even Tony was blown away by your generosity.

Thursday, 12 December 2013

The power of email & what constitutes good customer service

Yesterday I had the misfortune to be treated absolutely appallingly at a local Garden Centre. However in the fairness of giving them the chance to put it right I did not blog about it straight away. Instead I let them know & have received assurances that the incident I experienced was a one off and will be investigated and not be tolerated again.

I love our local Garden Centre. It used to be a Wyevale and is now part of The Garden Centre Group. It has a lovely cafe with a small soft play area that only costs £1.50 for the children to play in for an hour. It used to be free, but it was obvious a lot of parents were abusing this by taking their own food and drink for their children and even trying to hold their children's birthday parties there. Now they charge £1.50, but don't kick you out after an hour, they donate the money to charity and hold official birthday parties. 

The food is lovely, fresh and great quality and I love all the deals and vouchers I get through their loyalty scheme. 

One of the other reasons I love them is the fact that every year they hold a Macmillan Big Coffee Morning. Macmillann are a charity that are really close to my heart and the fact that a large national company runs events like this is really important to me.

The final reason we (Isaac, Imogen, Hope & I) love going here is Maidenhead Aquatics. The children love being able to feed the big fish in the tank and look at all the little tropical and freshwater fish. For me this allows them the chance to see what they eat in their fish and chips first hand, and is a lot cheaper than The Sealife Centre in Brighton!!!

But the customer is always key.

If you work in retail, there are several things that are definite no no's. My husband works in retail, I have worked in retail and customer facing environments. Even people who have never worked in a customer facing role are probably aware of them. These rules were broken yesterday by a member of staff at Crawley Garden Centre.

Here are the rules:

  • No personal mobile phones on the shop floor. Even more importantly if you have your personal mobile phone on you, it should be on silent and should not be answered if you are serving a customer.
  • If you are in the middle of serving a customer and the above mobile phone rings, you finish serving the customer.
  • If said mobile phone rings, you should apologise to the customer, not answer the phone, then leave the till point and shout for another member of staff.
Yes, this happened to me. The member of staff answered their personal mobile phone having rung two of my items through, left the till point while shouting for another member of staff and did not apologise or complete my transaction.

I asked to speak to a manager about this treatment and the person who spoke to me was more concerned about making allowances for his member of staff rather than reassuring me that this would not happen again. He actually walked away from me, rather than addressing the issue.

Because I go here so frequently I knew that this was not the manager I was speaking to and resolved to email the Centre directly to express my disappointment and chronicle what had happened. 

Within a hour of submitting the feedback form I received a phone call from James, the manager, apologising for not being available when I was at the Garden Centre and asking me for my version of events. 

I gave him the facts about what had happened. Explained that I understood people had personal problems, but they were not my problem, as I customer I expect to be treated as first priority and not treated like an interference in their day.

He was very apologetic and understood my issues. I explained that having worked in retail, I understand that sometimes there are good days and bad days, but bad days are not my fault. 

He took everything on board and provided me with reassurance that these issues would be looked into and investigated and will come back to me with some outcomes. Obviously he cannot tell me everything that happens. But I am reassured that he is treating me, the customer as a priority, which if you work in retail is the key concern. 

As well as this I am relieved that I can still visit one of my favourite places with my children and don't have to boycott it because of poor customer service. 

James, you have restored my faith in the power of the customer.

Sunday, 8 December 2013

Silent Sunday

The Christmas tree is up, and the advent tree to the right is filling up nicely
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Tuesday, 3 December 2013

Pre chemo

Just over a year ago I posted about how much I loved knitting things for children. Since completing hope's blanket I have realised his true this is.

Children's projects are portable and quick to knit up.

Since finishing Hope's blanket which consisted of over 20,000 knit & purl stitches (no I haven't counted, but 125 stitches multiplied by 160 rows...) I have completed a scarf for Imogen, a Christmas present for someone and am in the middle of a Scandinavian inspired hat and sock set for Hope for Christmas. 

Then there are the Father Christmas socks for my big two and a new hat and scarf for Isaac. I really feel like my knitting mojo has returned. This may be because I can't bear to think of all the money I have spent on wool over the past 8 years going down the drain if Tony decided to just bin it.

So keep your eyes peeled for more project pictures coming when I can prise the scarf from Imogen's neck.

Sunday, 1 December 2013