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.

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!!!

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!!

Words

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.

Silent Sunday

 

Hope's first wedding

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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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!!

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.

Silent Sunday

Ready to roll!!

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.

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.

The complaint

So I have done it. 

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

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

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

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

So, I took a deep breath and pressed send.

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

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

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

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

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

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

More about support

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

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

Still to come before my next chemo appointment

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

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

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

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

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

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!!

Silent Sunday

Hospital Manicure, to complement the blood taking bruises!!

An apology

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

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

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

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

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

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

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

The weakest link

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NHS Communication problems

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The pressure on the NHS

I want to reiterate something before I write this. My blog is not about individuals in the NHS, it is about the massive pressure the system is under to deliver top quality health care with an ever decreasing budget. Today I experienced some of these pressures first hand.

Firstly, there are things about the system that are excellent. After some delays I arrived at St Luke's more than an hour before my appointment time. This is mostly so I could find somewhere to park but also because I hate being late and cannot rely on the M23, M25 and A3 to provide a delay free route to Guildford at 8am. If this was anywhere else you would be seen at your allotted appointment time. At St Luke's the notes of patients who have arrived are being constantly collected so you are seen when you arrive, meaning if you are held up you are not chastised for missing your appointment but seen in turn, and if you arrive early you are called for your appointment while you are on the loo!!

After the normal discussions with the clinician about the management of side effects and the effectiveness of the oromorph for the pain, I was told that everything looked fine and I'd be able to have chemo later on. 

A quick time check and it looked like it was nearly time for Hope to have a feed so settling down for the 4 hour wait, we found a secluded corner, I purchased a cup of tea and we got on with waiting it out. 

After lunch in Costa, during which Hope helped herself to her first piece of orange, I was getting increasingly bored and Hope was getting increasingly tried, I popped her back in the pushchair and tired to go the long way round back to the chemo day unit. There is a little waiting area outside and I figured although there was just over an hour to go before my appointment I could wait there until my time. 

Hope promptly fell asleep in the pushchair and I as I was walking through to the waiting area, one of the lovely chemo nurses spotted me and asked where I was going. Oh no, she said don't bother, your room is free, come and wait there. See above and beyond again. 

This meant that I got a lovely hour of uninterrupted sleep before chemo was supposed to start. 

Around 2:15 the nurse came and told me that my chemo hadn't come up on the 2pm box (my appointment was at 2pm) but it would be on the 3pm so she would make a start on changing my PICC dressing and flushing the line, so that when it & my notes arrived we were cooking on gas and ready to go. 

3pm came and went, the flush had finished and the machine was beeping at me, but couldn't be disconnected as the chemo had not arrived. Another nurse came in and switched the bleeping off and went to find out what was happening. 25 minutes later another nurse came in and asked if I had had any blood taken when my PICC was flushed. 

Yes I had, why?
Because I needed to come back in tomorrow for a blood transfusion of 2 units as my HB was low.
Not possible, I cannot possibly arrange that kind of childcare with less than 24 hours notice, but I could do it on Friday. Would that be in Crawley? 
No, Guildford as there might be additional complications due to chemo that Crawley cannot handle.

So now, I know I have low HB again, but no chemo and another blood transfusion looming.

Finally, at 3.45, the 3pm box of chemo arrived and there were my beautiful freshly made pouches of irinotecan and folinic acid. 

This is where the problems in the system lie. The reason I have to go to Guildford for chemo is everything is made fresh for you. So the 'chemists who make chemo' (there is probably a better, more technical term for them than that, but I don't know what it is and quite frankly can't be arsed to google it. You do it, if you want to know) have to make in 4 hours my chemo, chemo for everyone else on the ward that day, probably in excess of 70-100 people. Plus all the 2 day chemo patients chemo and all the inpatient chemo's. 

The poor nurses, and you don't have a nurse each, have to clean and redress PICC lines, portacaths and Hickman lines, make sure lines are being flushed between drugs where appropriate and not when necessary, dole out anti sickness drugs ( I take 5 tablets before my Chemo), carry out the injections of other side effect management drugs ( I get an injection that is supposed to help with he loose bowels!!) and monitor all the patients to check they are all tolerating their chemotherapy. 

There are 10-15 people in a room at any one time, 5 rooms, and 2/3 staff nurses per room and probably 2/3 HCA's.

Quite frankly they do an amazing job under an immense amount of pressure and uncertainty. The fault lies in there not being enough of them and enough of the people in the background because there isn't enough money in the system.

Think about that the next time you hear people talking about cuts in healthcare budgets.

Bucket lists

We all have them, things we'd love to do before we die. The thing with cancer is it kind of creeps up on you unawares and doesn't give you a nice handy expiry date. So you start thinking of things you've never had a chance to do and things you'd love to do. 

Then you realise, there are loads of things you'd like to do. So how do you narrow it down and make it manageable. 

I've done this. There are 8 things on my personal bucket list. Things that I want to do for me, either on my own or with Tony or someone else. There is also my family list. Things I want the children to experience and I want to do it too, to see the looks on their faces when they experience the magic.

So here is my bucket list. When I was writing it I tried to think realistically of things I would be able to do and, crucially afford to do.

1. Go to Aberdeen. Strange to some, but I have been to Inverness, Fort William, Glasgow & Edinburgh and have heard that Aberdeen is beautiful & so I want to go.

2. Climb Scafell Pike. Since we moved south we have done very little fell walking, but I still love being outdoors with just a map, compass and a backpack. Having climbed Ben Nevis & Snowdon, there is only the highest peak in England to tick off and I will.

3. Go to Camden. Again, strange to some. You would imagine that I have been to Camden, shopped the markets and hung out in the cafés. Nothing could be further from the truth. The closest I gave got to Camden is getting the tube there with my rainbows for LASER's 25th rainbow birthday celebration at London Zoo. Alongside visiting Camden I want to go to a gig at the Roundhouse. This might therefore entail 2 trips ;)


4. Go back to Amsterdam. Tony surprised me with a trip to Amsterdam for my 20th birthday. I was definitely to young and naive to enjoy it. Now I would happily wander aimlessly around the city. That's what I want to do.

5. Go to Italy. I love reading ancient roman fiction - Conn Iggulden etc. I would love to go to Italy and see some of the sites I have read about and become immersed in. Pompeii, Rome, Vesuvius. I don't know where or what yet. But one day.

6. Take Jo to Paris. Paris was the first foreign city I ever visited at 14. Our school was twinned with a school in Paris. I adore the city. The architecture, the history, the dichotomy. Jo has been all over the place, but has never been to Paris. I have always promised that we would go together. Now we have to.

These last 2 are fairly obscure and might not mean much to some people so let me explain. Girlguiding UK has been a massive part of my life since I was 7 years old. I have met some amazing people and have had some incredible experiences with both guiding & through Tonys activity in the scout movement. My connection to guiding is so strong that as Imogen was born during the centenary of guiding, one of her middle names is Olave, who was Lord Robert Baden Powels wife, & the first chief guide. 

There are 4 world centres of guiding. Pax Lodge, in London, Our Chalet, in Switzerland, Sangam in India and Our Cabana in Mexico. I have been to Pax Lodge & Our Chalet. So numbers 7 & 8

7. Visit Sangam
8. Visit Our Cabana.

There it is, written down in (purple) black & white. My bucket list. 8 things to accomplish for me. Over the coming months and years I shall update you on my progress!!

Children and Cancer

So, how do you explain something as complicated and all encompassing as cancer to your children?

I've already faced this dilemma once. Isaac was 3 years and 1 month old when I had my first operation and Imogen was almost 17 months. We explained it to them that Mummy had had a baddy in her tummy and the Dr had to cut mummy open and take it out. We explained chemo in the same way. We didn't want mummy's baddy to come back, so the Dr was going to give mummy some special medicine that would make her feel poorly, but it would make sure the baddies didn't come back. My PICC line became my wiggley, because it kind of looks like a wiggley worm where it goes into my arm.

But now that the cancer is back and inoperable it is a far more sensitive and difficult subject to explain. 

When we sat down after their bath on October 15th 2013 to explain that mummys baddies had come back. Isaac immediately said

'Are they going to cut you open again and take them out?'

We were honest with him and told him 'No, mummy has more than one baddy and they can't take them out'

His face fell. You could see his 5 year old brain processing the fact that mummy was not going to be getting better so easily. So we explained that mummy would be able to have some more special medicine. But this time the special medicine would be working on the baddies to shrink them and make them shrivel up like the fruit that we sometimes forget to eat in the fruit bowl. This made sense to him and he now talks about how my baddies are going to shrivel up and explode (I don't correct him on the exploding bit, but I really don't want exploding tumours!!!)

Then there was the blood transfusion. Imogen loved the fact that I would be getting new blood so I didn't feel so dizzy and sleepy anymore. She went around telling everyone that mummy was getting new blood today!!

On Sunday though I got the cracker. 

Imogen had obviously been thinking about this a lot and while we were at Crawley Garden Centre, having cake and soft play she asked

'Mummy why do you get baddies and other people don't?'

Now for a 3 year 8month old that is quite deep.

So I racked my brains for a child friendly explanation of cancerous genetic mutations and came up with this explanation.

Mummy's body is like the instruction books for Isaac's lego. There are lots of instructions for how to do things. Mummy's body is missing a few pages and this means that her body doesn't know how to do everything and so mummy gets baddies. 

She processed this, and then said 'does the same thing happen to everyone when they get poorly' 

'Sometimes, but sometimes people get poorly because they don't wash their hands properly after they have a wee or they get a cut and some nasty things get in. But sometimes peoples instructions are missing pages and they get really sick'

I am so proud of how my children are coping with all that is thrown at them and how well they respond to our explanations and equally that they are not scared to ask questions. 

I would never hide the truth from my children and I hope you can see that you can be honest without scaring them.

Silent Sunday - NaBloPoMo

 

The ultimate rollercoaster

No need to spend extortionate amounts of cash on days out to theme parks, no queuing, no bank loans needed for food. 

Does this sound like something for you?

If so you need CANCER in your life.

I can honestly say that this week I have gone from the biggest highs to one of the lowest points of my cancer journey.

We'll start with the highs. 

After a very lazy day on Monday with Hope and I just chilling and catching up on some sky plus, I accomplished a lot on Tuesday and Wednesday. This was not without its pitfalls. The trip to IKEA on Tuesday was more costly than I was anticipating, but toys need to be stored and I really want to create my rogues gallery of school photos. 

Wednesdays playroom decluttering and decorating was immensely rewarding, although there are still a couple of bits of the mural that need completing. Once it is done I will post a photo on here. 

Even Thursday and Friday left me with a sense that I had achieved something. Admittedly only rearranging a few bits and pieces in the kitchen and rediscovering my love of the bread maker. But these two accomplishments would not have been possible without the lovely people who organised and invited my children and me to Halloween activities meaning I didn't have to focus on ensuring the children were entertained. 

Today however has been a rock bottom moment.

I'm going to talk about it here, where everyone can read it and where people can share it, because I want thoughtless people to realise that cancer is an invisible disease and just because I may look normal on the outside I am anything but on the inside and your comments are really hurtful.

The morning started like most Saturdays as we made the shopping list before heading to Sainsbury's. For a change I had had a reasonable nights sleep (about 5 hours all in). My tummy was feeling a little tender and unsettled but hey what's new!

As we were going round Sainsbury's it became clear that the tummy tenderness was more than normal and with some urgency I needed to go. Luckily we were very near the toilets and as I pushed the trolley towards Tony and headed away I could feel things already starting to move. 

I very quickly walked through a checkout and headed towards the toilets overtaking two young people who were heading the same way. 

I made it to the cubicle sat down, and let go. I couldn't help it. It was noisy, it was unpleasant, I was doubled over in pain. 

Then I heard the door open to the toilets. The two young people I had passed earlier had come into the ladies. No problems normally. It's a toilet.

I am not going to repeat exactly what was said by these two girls, as the language was obscene. But it went along these lines.

'It f'ing stinks in here'
'Why can't people do that at home'

Then as I let rip again (I can't control it) 

'OMG, they are still in here, how f'ing disgusting'

Then the door went and I imagine they left.

Now, not only am I doubled over in pain and farting like a trooper I am also sobbing with embarrassment, because I genuinely have no control over this.

This is not the first time I have encountered issues in the toilets. I have had someone knock on a cubicle door and tell me to f'ing hurry up because people are waiting. That time when I went in there was no queue & as I left I apologised that my inoperable stomach cancer was inconveniencing her, but she might like to spare a thought for my 3 under 5's who have to live with a mummy going through this and the thought that one day my consultant might tell me there is nothing else he can do. 

So, why am I telling you this. I am embarrassed about this. I am mortified that I almost soiled myself in Sainsbury's due to my condition.

Because the next time someone is taking a long time in the toilet, or there is a queue or an unpleasant smell bare in mind that the bowel and stomach illnesses are invisible.  The size 10 (mostly) well dressed mum dealing with 2 exuberant children and an adorable 6.5month old is also battling stomach cramps that leave her unable to stand up straight, have her wincing in pain when she carries her baby and has a stomach that churns so much it feels like a washing machine spin cycle.

Maybe I should use the disabled toilets, I certainly am considering it, but would I then face the backlash of not 'being disabled'.