Hypocrisy

Hi, my names Ruth & I am a hypocrite.

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

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

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

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

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

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

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

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.

Today's news

Well, the headlines.

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

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

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

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

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

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

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

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

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

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

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

We have a plan to send you home.

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

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

There are benefits and drawbacks to this. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dorothy, we ain't in Kansas anymore

To be more accurate, actually I am not in Redhill anymore. I'm on (I think) the first floor (C) of Royal Surrey Hospital in Guildford. 

Earlier today things took a turn for the worse. Not physically for me but in the interpretation of all the results of all the tests I have been having recently. 

Things appear to have been getting aggressive in my stomach and treating me was beyond the scope of the consultants and teams in East Surrey. 

The consultant rang and spoke to Dr Cummins (my oncologist) and he agreed that I needed to be treated, we were not and are not going to let this beat us this early on in the year. 

So, it was decided that the best place for me to be was Royal Surrey. They have the consultants, the experience, the oncology department and can treat me far more effectively here. The plan was for me to stay in East Surrey over the weeknd and move to Royal Surrey when a bed became available probably Monday. 

This all took place just before lunch this morning. Which incidentally I didn't get to eat as I am back on free fluids/clear fluids. Which basically means soups with no lumps, jelly, ice cream, mouse etc etc.

I spoke to Tony and he would come to the hospital as soon as he finished work. 

At about 3:15 the registrar came to take some blood from my PICC line and then the nurse came in with the news that there was a bed at Royal Surrey now. 

So, that was that. Luckily Tony arrived before I got whisked off and I got to update him on all the information I had been given in the last few hours. We quickly called my mum on the bedside phone to give her a quick update, skyped Isaac who had spent the day with grandma as he was sick this morning and had a cough (?) and then the ambulance crew arrived and I was being wheeled through the hospital and loaded up.

It turns out that out of all the ambulance crews available I get two gents. One of whom went to school with my husband and one of whom is a scout leader in Crawley, I mean what are the chances of that happening?

We left East Surrey at 16:23, we arrived at Royal Surrey about 30 minutes later. I have officially now been bluelighted through Reigate and around the M25.

At present I am waiting for pain relief because they can't use my drugs chart from East Surrey, but am clear that solving this problem is going to involve some fairly hefty medical procedures, maybe as an emergency if something happens over the weekend, but more than likely next week as long as I can get through the weekend with no WIFI now ;(

Living with cancer

Living with cancer is much more than just going to weekly, fortnightly or other frequency chemo appointments.

There is all the side effects and problems that tumours, especially ones that cannot be operated on cause.

Consider this, since December 23rd I have been admitted to hospital 4 times (3 of those via ambulance).

The latest admission rounded of a lovely evening of drinking tea and teaching some of the people who made my very special quilt how to knit.

Here's how it happened.

I ate a biscuit (never again), got up to go to the loo, and face planted into Emma's under stairs shoe rack, unconscious. I imagine panic ensued. You don't expect your friend, even if she is suffering cancer to faint when she has seemed fine all night. I also have several small cuts to my chin and lip to show for the ordeal.

An ambulance was called, but Emma lives on a new estate so someone had to chase the ambulance up the road, while the lovely Jennie had been woken and came to provide some medical reassurance. 

Luckily for Emma I managed to contain the nausea I was feeling for the ambulance and I'm glad I did. 2 and a half bowls of blood later and I was worried. Blood remains in your body, vomiting blood is never a good sign. 

I was then hooked up to enough painkillers to fell a small elephant (entenox and my favourite liquid paracetamol) and took another trip to A&E.

A&E was pretty uneventful, until the vomiting started again, Tony arrived and was greeted with the sight of his wife being rushed into resuscitation while vomiting blood. 

They gave me some anti sickness drugs, one of which gave me an awful rash up my arm and so now needs to be added to the list of allergens (along with penicillin & liquid tramadol). They also took a chest X-ray and then Tony was allowed to see me. I can only imagine what had been through his head and I apologise with all my heart to you my love. I do not ever mean to scare you and I am sorry about that.

I was moved to the Acute Medical Unit where I am now and 48 hours later have not vomited anymore blood, but am still suffering from Melena (Google it if you wish).

I have had a CT scan and another endoscopy (camera down the throat), but came round from the endoscopy to the most beautiful thing in the world, back on the ward with my husband and children just arriving. 

This uncertainty about whether I will collapse, when I will collapse and what happens dogs every step of my life & panics me everyday, thanks to those closest to me, my amazing friends who so far this week have looked after my children so Tony can go to work and continue to earn, rather than taking the time off either unpaid or cutting into our precious holiday time together as a family.

Finally, after reading this please do one of two things

Visit www.blood.co.uk and register to give blood 

Or my very good friend Emma Patterson is completing dryathlon for cancer research uk, please sponsor her and make my dreams of an artificial stomach come even closer.

Dinosaurs suffered with cancer and a cure will not be found in my lifetime, but other research can help patients suffering from cancer, and giving up alcohol is a massive sacrifice to raise money.

What cancer does to you

When you have cancer eating becomes very important to you. You eat what you want when you want. Because I have lost so much weight this is even more true for me.

This afternoon I have been in tears because I wanted emmental cheese to go with some crackers. Tony couldn't find what I asked him for, so he bought me Brie. Which normally I love melted onto a bagel or toast. But I wanted emmental.

I cannot get over how pathetic I'm being about cheese.

There is no point crying over missing cheese.

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.

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.

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

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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

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!!

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!!

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.