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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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

Friday, 29 November 2013

What causes cancer?

I don't know what caused me to develop bowel cancer and then it's evil secondary cancers other than a genetic mutation. 

However I was listening to Jeremy Vine on BBC radio 2 earlier today and was reminded of an email I received off the back of my blog about another type of cancer. A cancer which is not the result of a genetic mutation, but is caused by inhaling one fibre of a substance.  

That substance is asbestos and the cancer is mesothelioma.

The mesothelioma campaign emailed me this fact sheet. I thought that I would share it with you as this can affect anyone. I was moved listening to the story of a school teacher who contracted this horrendous disease just because she was displaying her classes artwork on the walls of her classroom.

Thursday, 28 November 2013

Let's talk parenting

I've had a couple of interesting experiences over the last few days that I thought I would share with you.

I like to think I'm a pretty good mummy. I do shout, but mostly when I'm in pain and I live in pain so I don't shout as much as I could. When I do shout I always give the children a hug afterwards and say sorry to them. I explain that mummy's baddies are hurting her and she is cross with them and shouldn't shout at Isaac and Imogen. 

Sometimes they just push my buttons. It is hard to discipline in that case. You need to make a distinction between why you are cross with them then and not at other times. 

Anyway I digress. Let me take you to yesterday tea time.

It had been a long day, we got back from school, got straight in the car to go to the hospital to have my PICC line flushed and redressed. I'd already decided to treat the children to McDonalds for tea. We didn't leave the hospital until 16:30, so that made sense. 
I don't apologise for giving it to them. They enjoy it. There are worse things they could eat, but actually the experience I had this time relates to Hope. 

I'd given her a few carrot sticks and broken one of Imogen's chicken nuggets in half for her. She was happily chewing away when a lady launched herself at me and began a tirade about how irresponsible I was feeding my 'tiny baby' solid food, about how she was obviously choking and did I not know that. I was shell shocked. I have only ever had positive feedback about the way I weaned all three of my children. I think I managed to mutter something along the lines of 'as she's my third I think I know what I'm doing, thank you' but it didn't stop her sitting staring at me for the rest of the meal.

Why do people do this? Why do complete strangers feel that it is ok to judge your parenting? As a parent you can't win. You're made to feel uncomfortable breastfeeding or formula feeding. If you choose to co sleep you face harsh critics, but move your baby into their own room and you risk more judging. Wean with puree's and your told there is no need as you shouldn't wean until your baby can decide what they want to eat and when, but do BLW and you face the woman I did yesterday!!

I have a thick skin, but recent events have made me wary about doing things with Hope in public. I often sit feeding her wishing I was breastfeeding rather than bottle feeding. I wonder how many people are judging me for bottle feeding, because unfortunately I don't have a sign that says I'd rather be breastfeeding, but cancer means I can't. 

(Hmmm maybe there's a business opportunity there, dragons den here I come)

Experience number two came this morning, when cbeebies didn't work. My schedule in the morning relies on certain programmes at certain times. This morning my children had to entertain themselves. Thus resulted in Imogen eating breakfast while wearing her pajama's, Cinderella dress and devil mask and Isaac having Hope in fits of giggles while wearing a Dracula mask.

Then, as we left for school they decided to be robots and marched like robots the whole way to school. 

I might now leave cbeebies off and watch the news instead!!!

Tuesday, 26 November 2013

Some technical stuff!!

My current chemotherapy regime consists of an infusion of Irinotecan, an infusion of folinic acid and a 46/48 hour infusion of 5FU. 

This is generic chemotherapy and works on a range of cells within the human body. Including my peritoneal tumour and my liver metastases.

There are also a range of cancer treatments called monoclonal antibodies. These work by targeting the specific proteins on the surface of the tumour, latching onto them and stopping the blood flow to the tumour. This stops the tumour growing. 

However they are not suitable for every type of tumour. I received the news last Wednesday that the histology, or make up, of my tumour means it is suitable for this treatment.

It means next Wednesday, I add another dimension to my treatment, and another level of side effects. 

But this is specific treatment, let's hope it works and Avastin can kick my tumours butt!!


There are a lot of 'words' associated with cancer and it's treatment that all mean different things to different people.

They can be quite definitive. 

Terminal, treatable, manageable, operable, all clear, remission.

They can be ambiguous.

Inoperable, manageable, treatable, prognosis, reoccurrence.

Some of these words can cover both options and it depends on your outlook on life as to how you see them.

I have never known whether I see the glass as half empty or half full, mostly I am gagging for a drink and there is a drink so I'll have it. And with my treatment it is a bit like that.

My oncologist has not mentioned that word terminal, so to me that means at the moment the cancer is treatable. But it is inoperable. How long does inoperable cancer remain treatable. Am I going to come to a point where I say 'No, I can't take anymore treatment'. I have put enough poison in my body lets just let it run it's course. 

Will my body be strong enough to take course after course of chemotherapy, killing the white blood cells? I've lost so much weight already, can I tolerate more and more weight loss and equally the side effects associated with the weight loss and chemotherapy.

So, yes at the moment my cancer is treatable, manageable (to a certain degree) but inoperable.

But there will come a day when it isn't. 

I don't know when that will be. I will fight for as long as I can. I will keep going for my children. 

And living with that insecurity and doubt is one of the hardest things I have to do on a daily basis.

Thursday, 21 November 2013

Not coping with chemotherapy

Today I have definitely not been coping with chemotherapy.

The day got off to a bad start when a teething, screaming Hope woke just before 3am, had a bottle, some calpol, a clean nappy and then about 15 minutes later vomited the bottle back over me. Luckily it didn't hit out of bedding, only my t shirt and her gro bag. 

Prior to that and following it I still had several bathroom visits to make. Luckily my bathroom is so small, I can fall asleep on the loo lean forward and rest my head on the door. So I did get some sleep, albeit uncomfortable.

Some things just test you, like your husband having to go to Coventry for a meeting. The alarm went off at 5am, he left at 5.33. I was awake with baited breath hoping he had been sufficiently stealthy so as not to wake Imogen who appears to sleep like a gnat and wake at the littlest noise. 

She kept sleeping and did not wake until 6.45. I dozed for that time in between bathroom visits naturally.

I was surprised this morning to be visited by a side effect I didn't really experience during my first chemo experience of so far during this one. Nausea. 

Morning sickness during pregnancy I can deal with. I eat, I vomit, I feel better. This was not like that. I ate, to a background of Imogen coughing,  crying, whinging about not wanting to go to preschool and generally pushing every button I had. But no vomit was forthcoming and if has remained like that all day.

Eventually, Isaac and Hope were fed, Imogen refused her toast. Everyone was dressed, and we left for school. 

Imogen was still whining about not wanting to go to preschool. I ignored it. 

Somehow my children are terrible hypochondriacs. Imogen had a cough. But it is a cough, it is not life threatening. Isaac is the same. 

We made it to school, we reported the missing book bag to Mrs Sharp, who must have located it, as it came home this evening, and headed home with the tantrum escalating to full blown screaming, and hitting. Yes, my beautiful confident daughter was walking along hitting and punching me because she didn't want to go to preschool. All this time my stomach is churning, my nausea is escalating and I want to curl up into a ball and sob. But I can't I have to remain strong for my children.

We got home, we cuddled, we watched alphablocks & ra ra. Then went through the whole screaming and hitting on the walk to preschool. 

At pre school Vida took charge, Imogen, she said, why don't you help me count the children in. And she did. She stayed on the door with Vida, I dropped off her bags and fruit and water and that was that.

I felt like I had done 10 rounds with Mike Tyson, & I hate boxing, I actually complained to the BBC about its coverage in prime time during the Olympics as I had to explain to Isaac that although hitting people is wrong it's ok to do it for sport. Yeah, he didn't get it either!!

I thought things might get easier from there, Hope might fall asleep so I could at least rest if not sleep, no such luck. She finished her bottle, but wouldn't nap, she had a little play on the floor, but got bored, she had a cuddle, but wanted down on the floor. She was clearly fighting sleep.

I resorted to leaving for preschool 10minutes earlier with her screaming in the pushchair just to walk her to sleep. Which worked, but it wanted her to sleep earlier so I could rest.

Imogen had had a lovely time at preschool. She came and gave me a cuddle and said sorry for being so horrible. My pride in her returned, my faith restored. 

She had lunch, she played on my iPad, then she crashed out. I'd explored this option earlier and contacted my school pick up angel. Thank you Karen, I don't know what I would have done without you today. I called the school and explained the situation. 

I managed about 20 minutes sleep before Hope some up for feeding. One downed 7oz bottle later and my smiley baby was back, rolling, rocking all over the floor.

Isaac was returned to me with book bag. I gave the gorgeous Sadie a happy birthday hug. She is growing into a beautiful young woman and Karen and Simon should be very proud. And tall girls have all the fun!!

Too much cbeebies, a lovely Dunn Spag Bol, a worrying pain in my side (resolved with heat), 4 recorded episodes of Ben and Holly, and it was 6:45pm and Daddy was home. I got my 10 minutes of peace before having to help a constipated Imogen open her bowels (see I really am obsessed with poo).

Both children were asleep by 7:30, Hope has had calpol (50% of which I am confident went in) and teething gel, and is now asleep on her tummy in the Moses basket

Wednesday, 20 November 2013

Chemotherapy round 3

This morning was hard.

After a night of not much sleep due to teething and screaming from our beautiful Hope. I faced the rush of organising everything in 30 minutes less time than normal and have the added stress of arranging everything me and a 7 month old would need for at least 12 hours away from home.

What I hadn't factored into my preparation time was just how hard my last chemotherapy session had hit the children. I had Imogen in tears, because she was so worried about me going. 'Do you have to go mummy?' 'Will you come home this time mummy?' 'I'm scared for you mummy'

As my heart broke for the millionth time I again marvelled again at how articulate she was and how together she was. While at the same time remembering she is only 3.

Isaac showed his fear in a different way. He became very quiet and withdrawn and snuggled into grandma. He did come for a cuddle, bit whispered to me that he was scared too.

So, I found my little butterfly notebook someone gave me last time I was having chemo, which I keep in my handbag for short shopping lists (having chemo gives you terrible baby brain) and ŵrote them both a special little message that mummy loves them lots and will see them when she gets back. They both tucked them into their pockets and went off happier.

And so now I am sitting in the coffee shop, waiting for my name to be called to see my oncologist, discuss the side effects I am experiencing and the emergency admission to hospital. After that we will begin the long wait before going to the chemo suite for round three.

And then we are half way through!!

Monday, 18 November 2013

Dear Imogen

Imogen is 3 years 9 months old. In the short time she has been alive she has been through so much. 
A week before her first birthday we were rear ended and the car written off. We all took our first trip in an ambulance then.
6 months later, her mummy was admitted to hospital again via ambulance and she had to stop breastfeeding cold turkey. I order to get her to sleep without the comfort of breastfeeding Tony had to use controlled crying and I carried it on when I was discharged. I posted about at the time about how that made me feel.
Mummy then had to have special medicine (chemo),which was very well timed as her second birthday fell 2 days before the final session.
Now mummy's cancer has returned.

Throughout it all she, like Isaac has taken it all in her stride. She accepts that mummy is poorly and cannot do all the fun things she used to do. She asks the most insightful questions as well. 
She wanted to know why I got baddies and other people didn't. She then linked that to when she got her UTI and said that she had missing instructions - I've explained that her UTI was due to bugs, not missing instructions. But today we were talking about a friend whose daughter has type 1 diabetes and Imogen asked if it was a bug or missing instructions. SHE IS 3. She should not be worrying about this.

Throughout everything she has been through I am constantly amazed by how intelligent and thoughtful she is. Like with Isaac I am so proud as to how she has coped with all she has had thrown at her in her short life.

Today as we walked home from school she was telling me that when she is old enough to be a mummy she will have 2 children, a boy and a girl because that is just right and I can be the fun grandma and take them to do all the fun things that I do with her and Isaac. 

At this point my heart was breaking. My tumours are inoperable. I do not know if I will be around to see my grandchildren, but I can't let her know this. I asked her what fun things does she like the best.

It turns out the funniest thing we do is going to Crawley Garden Centre for soft play, then up to Maidenhead Aquatics to feed the fish. Never fear she also thinks going to the Bluebell is fun, but her and her babies daddy will take her children there!!

Today Imogen, I want to tell you I am sorry. Sorry that I might not be around to do fun things with your children, sorry that my body has failed so spectacularly before you were two and you spent so much time visiting me in hospital and sorry if I have passed on the faulty genes to you.

I love you, and am so proud of you, please forgive me.

Saturday, 16 November 2013

Strictly come dancing

I love strictly. I haven't followed it from the start, but as soon as I started watching it I was hooked. I think the first season I watched was the one with Zoe Ball.

It seems I am installing this love in my children.

This evening Isaac sat enthralled by Susanna and Kevin's Paso Doble. I happened to glance at him during it and he wasn't moving. Once it finished he said 'that was amazing mummy, it made me feel all special in my tummy'

We talked about the music. He said it made him feel powerful and like he was in charge. 

We talked about the dancing. He said it was beautiful and better than all that twirling!!

I love how my 5 year old expresses himself and I hope that when I am gone, he reads this and remembers the special moments that we've shared.

Isaac, I love you and am so proud of you. The way you express yourself fills me with joy. You are so articulate and clever. Let me reiterate, I love you.

Friday, 15 November 2013

Coming to terms with my changing body

I have posted a lot about the factors that led to me nagging my GP for every test under the sun to find out what was wrong with me. 

One of the big factors was weight loss. 

I have always been comfortable in my body. I have never dieted or religioùsly weighed myself ( apart from the 4 months before I got married when I used slim fast)

When I conceived Isaac in 2007 I was a size 18/20. I probably weighed about 100kg. However I was happy, I had no desire to loose weight, I did a lot of yoga, walked a lot and ate healthily. At 6' (1.8m) tall I carried it well. Ok, I was overweight but not scarily so.

After Isaac was born I lost some weight through breastfeeding. Yes, really, I did loose weight and then when Imogen was born in 2010 I lost more through breastfeeding and running around after a toddler. I was then between a 16/18, probably about 85-90kg. Still doing the yoga, not so much walking but eating a lot more healthily.

Fast forward to 2011 - more weight loss, people were starting to comment on it. I was doing nothing differently except for running around after 2 toddlers and using the car a lot less as petrol prices crept up and the Volvo drank fuel like it was water!!

I now know that the 2011 weight loss should have been a wake up call to get things looked at. I had a tumour growing inside me which was causing the weight loss. I was down to 80kg and a size 16.

Once I was diagnosed and started treatment things seemed to stabilise. I was a comfortable size 16 and celebrated getting the all clear with some new clothes. I felt good in my body, it had beaten cancer and survived 8 cycles of chemotherapy.

Then 4 short months later, even more amazingly I found out I was expecting baby number 3. At my booking in appointment with the midwife I weighed in at 81.2kg. However I did not have an easy pregnancy and clothes that fitted at the start of the pregnancy seemed to get bigger rather than smaller as I struggled to eat 3 meals a day due to a combination of sickness, pain and exhaustion. 

Once Hope was born I was back in my pre pregnancy jeans within days. I took Isaac to a birthday party on April 14th wearing size 18 jeans, that were too big.

Within a month of her birth I was buying jeans in a size 14. I was thrilled. According to my scales I was 75kg, and this meant I was no longer overweight. I was healthy. 

But the weight loss didn't stop there. By the time Isaac finished his first year at school the size 14's were too big and I was down to 70kg. I couldn't afford  to buy more new clothes. When you are as tall as me, you can't just nip to primary and pick up a few cheap pairs of jeans unless you want them to end mid calf. Charity shops are out too, there aren't generally tall ranges in them. 

Over the summer I tried to eat better. But I couldn't keep the weight on. By the time Isaac went back to school I was 60kg. I had lots of positive comments from people about how lucky I was to be loosing so much weight, how well I looked and what was my secret. Luckily these were people who didn't know me well. The people that know me knew how worried I was.. The tests weren't showing anything. Clear colonoscopies, clear CT scans, clear blood tests. But something was wrong. 

I hated my body now. Clothes hung off me. I looked gaunt and, to me, ill. The Ruth looking back at me was not someone I knew.. I was half the women I used to be. I joked a lot about feeling like a Trainspotting extra, a drug addict. I could fit my belt around me twice. The only benefit was I could occasionally go bra less (not that I did, I was still breastfeeding, but I did not need the support offered by my 38GG feeding bras, I actually got re measured in Debenhams as a 32E and had perky boobs again).

The cancer reappearing has been a blessing in disguise. I knew what was wrong. I was not imagining it. I really was proper poorly. This raised new issues for me. I started to realise that I wasn't going to put all the weight back on. 

In my new Box of Love was an envelope. I picked it up when we went across to Cardiff as I thought I might need cheering up. When I opened it on Friday night I was stunned. Several people had clubbed together a got me a voucher for Next. I couldn't wait to spend it. Imogen, Hope and I went shopping in Cardiff. We got something for each of the girls and then gleaned directions to Next. I'd decided I would get at least one pair of jeans, which I did, in a size 12. They were a little too big but I hoped I would put some of the weight back on. I also got a scarf and some long sleeved tops for layering as I knew that the chemo, cancer and weight loss were going to mean I was cold a lot. To the people that bought me that voucher, you know who you are. The thoughtfulness was amazing. You made me come to terms with my changing body.

I've been picking up a few more bits and pieces now. Mostly PJ's as they are comfy and multi purpose. I tend to put them on as soon as I know I don't have to go out again in the afternoon.

I still have a way to go before I am comfortable in my body though. Being slim, makes me feel taller and seems to make people more aware of my height. Today I went into Next and thought I would try some skinny jeans. I was not ready for that. A size 10 gaped at the back and was baggy around the thighs, as well as making my legs look like matchsticks. 

I'll be sticking to cosy PJ's and boyfriend fit jeans for now.

Thursday, 14 November 2013

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.

Wednesday, 13 November 2013

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

Tuesday, 12 November 2013

Tying up loose ends

The title of this blog is kids, KNITTING, and Guiding.

I talk a lot about the kids, I have talked about guiding, mostly I talk about cancer. But I don't talk much about the passion in my life, crafting, especially knitting, cross stitching and sewing.


11 months ago I started watching a fantastic drama on BBC 1, Sunday evenings called Ripper Street. At the same time I started a new project for the ever expanding bump. Nothing fancy, a baby blanket. Both Isaac and Imogen had blankets knitted for them by my mum and called them their Grandma Blankets. The new baby would need a blanket and I had found the perfect pattern in one of those books you see in Garden Centres across the country.

I had bought the book, I had the wool left over from other projects, this wool came from my bobble cushions. Which incidentally I have finished, but still need to buy the foam to go inside, I must get round to that soon!!

Ripper Street gave me an hour each Sunday to sit and knit which should have been plenty of time, but unfortunately the back pain I started to suffer during pregnancy meant I was unable to sit for long periods of time.

By the time Hope was born I had completed all but 50 rows. I was on the finishing stretch, but 3 children and the absolute exhaustion just put all thoughts of knitting out of my mind. I religiously carted the project around. It came to my parents house and back, it went on scout camp but it never left the bag.

A couple of weeks ago, Ripper Street returned for a second series. Suddenly there was the motivation I required to complete the blanket. I could not let two series go without completing Hope's blanket.

There is also the added bonus that my pain is much more manageable now with the morphine, paracetamol, oromorph combo, so yesterday and last night I managed to get to within 5 rows of completing it. And this morning at 10.25 I finally finished Hope's 'grandma blanket'.

I am so proud of what I have achieved. Hope has her blanket and I have a new found love of knitting again, fuelled by simple projects which can be completed quickly and are portable.

So next up, something Imogen has been nagging for for a long time. A pink, purple and cream scarf.

Let's get casting on!!

Monday, 11 November 2013

Back to reality with a bump.

My aim throughout all my diagnosis, treatment and complications is to keep things as normal as possible for the sake of my children. So today has been all about being normal.

Tony is working away this week, so my mum is staying again, but we still took Isaac to school this morning. It's funny in the playground. I stand and look at the mums, dads, carers and other people and wonder if they realise how lucky they are to know that they aren't living with the ticking time bomb inside of me. Most people have no idea about what I am living with. There are a few who do, but how do you introduce something like cancer, chemo and spending the weekend as an emergency admission in hospital into the conversation?

Simply speaking, you don't and you can't. So most of these people assume I spent the weekend with my family, doing normal things like shopping or having lunch out. 

So after dropping Isaac at school, we headed home to wave daddy off on his trip. But before that another unexpected turn up for the books. 

I am fast starting to recognise that community is not dead and this was proved as another local childminder who picks up and drops off at school and walks past my front door to do that came to offer here services if ever I needed help with Isaac. This was out of the blue, this was amazing and just reinforces the sense of community that exists when local people live, work and socialise locally. You know who you are, THANK YOU.

So, daddy has gone to work, and Imogen is a bit wriggley but she's 3 what do you expect?

Actually not the thing we are dealing with now. Turns out she has a UTI. After several visits to the loo and an unfortunate accident I call the GP and eventually fathom out that no, I can't just make an appointment for her today or tomorrow. I have to wait for a call back from the duty dr and maybe go to the other surgery. I have school runs and parent teacher meetings today so ask for a call back no earlier than 4. The DR calls my mobile and doesn't say anything, so I get home from picking Isaac up and find that the Dr has spoken to mum, confirmed a UTI and arranged a prescription for me to pick up from my surgery. Great, not quite as easy as that, the pharmacy near the GP & my local pharmacy don't have the antibiotic in stock, so a quick trip to Sainsbury's is in order for Imogen's new medicine. 

In and around that, there was the parent teacher consultation. I am so proud of how Isaac copes with everything he has had thrown at him in his short life and his is reflected in the comments his teacher gave me. She was positive and supportive and also told me how I can push him that little bit more.

So there is my normal day...

School run, UTI, parent teacher consultations. With a background of teething Hope and the one hiccup that occurred over the weekend a broken washing machine. Let's hope Imogen can find the potty in the night and we have enough disposable nappies to last until the machine is fixed.

Ohh, and the hospital manicure....ruined!!

Saturday, 9 November 2013

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.

Friday, 8 November 2013

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.

Thursday, 7 November 2013

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.