Silent Sunday

A months supply of medication!!

May the Fourth be with you and Revenge of the Fifth

Sorry, I don't pun very often but I couldn't resist this after seeing it all over twitter today. 

Also sorry for not posting much recently. I have been very caught up in my own little world and feeing kinda sorry for myself and just doing some reflecting on things.

So much has happened over the last month that I find myself wondering where the time has come from and equally where the time has gone. 

So round 5 & 6 didn't happen. Basically my bowel was on the verge of becoming obstructed again and so they deemed it prudent not to introduce any more drugs into my system and add to the pressures exerted on my digestive system. So once again I have not completed a course of chemotherapy. 

I can't decide whether this is a good thing or a bad thing. I have had some chemo which will have had some effect on the tumours, we hope, but I have not had the recommended amounts and so the effect on the tumour won't be as great or miraculous as should be expected.

It is bitter sweet, knowing that my body is failing, but can tolerate some treatment but not enough to complete the course.

But I cannot dwell on that, I had more important things to plan for... a certain young lady turned 1.

Yep, on the Thursday following non - chemo we headed to the West Country for some much needed rest, relaxation & family time. 

L-R Jamie, Sharon, Phil, Becci, Mum, Dad, Me holding Hope, Tony, Jo
Front Row Isaac, Hattie, Imogen, Alfie

We had a lovely time and managed to get this lovely family shot in my parents garden. In the afternoon we took Hope to her first Taunton Scout & Guide Gang Show, and their 25th show. This brings back all sorts of memories for me. I was in the first Gang Show in 1989, I've been an Edwardian Lady, an Alien and all sorts of things in between. I was presented with my Baden Powell trefoil by Betty Clay (Lord Robert Baden Powells daughter) on the opening night in 1994, setting a trend that had been followed by a range of guides and young leaders through the years. 

On our return back to Crawley it was time to start preparing for our next big adventure & one of our once in a lifetime events. It was time to think about Thomasland.

I think Thomasland deserves a post of its own, so i'll save that for later and just tease you with a photo....

Following Thomasland there was my Mummy & Isaac day. We went to Brighton and had a great time in the sea life centre, where Isaac overcame his fear and touched the starfish in the rock pool. We also took a trip on the Brighton Wheel and had some lovely chips on the beach while Isaac played and collected stones for our garden.

On the wheel

Looking at the turtles

Through the rest of the time I have been back and forward to Guildford to see the palliative care pain consultants, eventually got my 'emergency' CT scan, 3 weeks after it was requested!!!

And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.

Peripheral Neurophathy

Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.

When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital. 

The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.

So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold. 

Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.

Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.

I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it. 

I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.

Even the duvet and pillows being cold causes me problems and tingling.

Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold. 

I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing. 

Peripheral Neuropathy - Making life difficult for cancer patients

What happens after Chemo?



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



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

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

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

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

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

The top two are the most important.

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

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

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

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

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

So you see, chemo is much more than long day in Guildford!!!

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.

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.

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!!

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.

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

Silent Sunday

Hospital Manicure, to complement the blood taking bruises!!

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.

A 6 month old newborn baby

2 weeks ago, an angel arrived in Crawley and proceeded do something no mother, grandmother, parent or carer should have to do. Force a 6 month old baby to do something which goes against all their natural instincts and is completely alien to everything they have known so far.

This is not a bottle bashing, breastfeeding praising post. This is about the pain and struggles that my family, including my mum have been through in the last 2 weeks due to the reappearance of my cancer.

We had bought the formula a few days earlier and tried half heartedly to get Hope to take a little bit from a bottle. Tony had tried using the avent bottles that I had from when I went back to work after having Isaac. She took 3 oz at one point, but that was it. We would offer her the bottle at bed/bath time but if she didn't take it, no biggie, I still had my boobs and she was still more than happy to latch on and feed as normal.

All this changed on Tuesday morning. As soon as cancer, then chemo, then the aggressiveness of the tumours were mentioned I knew that this was it. My fabulous breastfeeding journey was coming to an end. 

When I say fabulous, I mean it. I never intended to be an extended breast feeder. I just wanted to do what came naturally. For Isaac that meant he fed until I was 5 months pregnant with Imogen and he was 16 months old. For Imogen that meant feeding her until I was admitted to hospital in 2011, she was 17 months old. I fully intended doing the same with Hope. 

I love breastfeeding, I love it's intimacy, accessibility, and the ability to be able to offer comfort to my baby. It is no faff, no fuss and quick, convenient and easy. 

I have never judged people that chose to feed their baby infant formula. I recognise that every one has a choice and what works for me, might not to for you. 

When I knew I had to stop, I knew I needed 2 things. My mum and some Tommee tippee bottles from my sister in law. Mum arrived on Wednesday and we sat down a worked out a plan.

The plan had 2 goals, by the following Thursday Hope had to be comfortable and able to take formula from a bottle. Also I had to drop feeds gradually enough to prevent myself getting mastitis or engorged and suffering from any of the painful side effects of stopping breastfeeding as I found out the drugs you can take to stop milk production are incompatible with chemo!!

I won't lie, I spent a lot of time hiding upstairs while Hope screamed at my mum. I sobbed my heart out, repeatedly, I felt guilt, I felt regret, I felt suicidal at one point. But after a little bit of trial and error Mum found that Hope liked a size 2 teat and very warm milk. 

The next step was Hope taking a bottle from me. We accomplished that over the weekend. Then on Monday, when I had my nurse led clinic appointment I took bottles and managd to feed her in the waiting area at the hospital. 

My final step was leaving Hope. I did this on Wednesday when I had my PICC line put in. 

I was heartbroken, I was not Hope's sole carer anymore. Now anyone could look after her. Some people are more willing to give her bottles than others. 

So on Thursday morning, I gave Hope her last ever breastfeeding. I sobbed, I couldn't stop apologising to her for not giving her the same opportunity that Isaac and Imogen had had. 

Now I am in a whole new world. It is like having a 6 month old newborn. I am having to learn a whole new set of feeding cues and associations. I need to plan, I can't just leave the house. I need bottles, formula powder, boiling water. Hope spends a lot more time screaming now because I cannot anticipate when I might need to feed her. Her sleeping is all over the place and I don't know how much she needs. 

Over the weekend she was having 4 7oz bottles a day. Today she has had 3 4oz bottles, 2 6oz bottles and a 2oz bottle. I don't know how many times she will wake up tonight. 

Then there are the nappies, ok so we are weaning as well, but no more lovely smelling breastfed baby poo. Formula nappies are unpleasant and far more frequent than her one every 2/3 days. 

Finally the cost. This is really annoying me. I don't want to feed my baby formula, but added to all the associated increasd costs with cancer I now have to add an extra £10 a week to my food shop, because of cancer.

So cancer, screw you, I will beat you again because of what you have robbed me off.

Information overload

So today was chemo information day. 

Chemotherapy is a bit like pain killers. It's not one size fits all. Different cancers require different chemotherapy drug combinations and regimes.

For bowel cancer as a primary cancer there are 2 different regimes. The oxaliplatin and capceitabine that I had last time or oxaliplatin and 5FU. As you might remember the oxaliplatin completely wiped me out and I only managed 4 cycles before the peripheral neuropathy became unbearable.

I have left today's meeting feeling much more positive about the chemotherapy I will be receiving this time as the side effects all seem much more manageable.

I am going to be having irinotecan which is an infusion which will be given through my PICC line and then a 48 hour infusion of 5FU which will be deliverd through a small pump. There is also a third drug that I may be able to have called Avastin. Avastin is a monoclonal antibody and attaches to the tumour and targets specific proteins. Whether I can have this or not depends on the histology (make up) of my tumour. There is no point having it if I don't have the correct type of tumour.

One of the most well known side effects of chemotherapy is hair loss. This is something I didn't experience last time as this was not a side effect of proxy oxi & capceitabine. This is a side effect of irinotecan.

So, what am I going to do about that? I don't care about loosing my hair, I can rock a hat or a headscarf, and ultimately I want the cancer gone and loosing my hair is a tiny sacrifice too make. 

But I have 3 young children who would be scared if mummy's hair suddenly started to fall out so like everything else I have told them.

So far they know that mummy has baddies back in her tummy and they can't cut them out, but mummy is going to have special medicine to shrivel them up like fruit that we leave too long in the fruit bowl. 

Today I told them that the special medicine is going to make mummy's hair fall out, so to make sure that it likes nice when it falls out Auntie Jo is going to cut mummy's hair short like Isaac's. Imogen didn't say anything but I think she is scared by mummy loosing her hair. Isaac thinks it will be cool!!

So keep your eyes peeled for the all new look Ruth, coming soon to a screen near you.

Cancer insomnia kicks in and pain prevents sleep

So, 2 days after diagnosis, cancer insomnia sets in. Actually that's a lie really it's not so much cancer related insomnia as pain prevents sleep.

And the beauty of this blog and my iPad is that I can blog when I feel like it and be honest.

Remember that, everything you read on here is the raw truth, there is no sugar coating, I tell it like it is. 

At the moment it's a roller coaster. 

On Wednesday , on my way back from toddlers with Hope, on my way to pick up Imogen I got a phone call. I was driving I ignored it. When I checked my voicemail it was St Luke's calling to ask me to arrange treatment. I thought I would have a week or so to get used to the idea that I was going to go through chemo hell again.

Nope, when in called them back it turns out they had had a cancellation and could I start next week.

Now starting chemo is not quite as easy as rocking up at the hospital and getting some drugs. 

My treatment actually started yesterday with my lovely blood transfusion. I needed to increase my blood count so I can actually tolerate the chemo. So I spent yesterday on the 6 th floor of Crawley hospital in a lovely private room, chilling with Hope and watching the planes take off at Gatwick.

This weekend the focus will be on reducing breastfeeding and getting Hope to take most of her feeds from bottles. I am hoping to do one last feed on Thursday morning, which will break my heart, but I know it is for the best.

On Monday I have to go to St Luke's to e nurse led clinic where they give you all the information that you need about your particular chemotherapy regime and what the side effects may be. This is the chance to ask any questions and I have a lot this time. The basic Macmillan info I have been given about my new regime looks intense and there are some inconsistencies with what I have read and what I have been told so I need to iron these out.

 I get Tuesday off, although Hotpoint are coming to fix my dishwasher which appeared on watchdog a couple of weeks as one that might potentially catch fire!!

On Wednesday it it back to Guildford, this time without Hope to get my PICC line fitted. You know, that annoying line that goes into my arm, under my skin and means no more baths, swimming or generally getting my arm wet for a long a time. Although I have decided that this time I am going to invest in something called a limbo Cover so I don't have to keep wrapping my arm up in cling film for a shower.

 Then Thursday, Tony, Hope and I will be starting my new chemo adventure, although I won't be able to feed Hope while I am having chemo I need my family with me for my first cycle. 

I am putting my body through all this again to kill these tumours so I can watch my children grow up and become parents. Watching my mum playing with the children today has scared me.

Because of the nature of these new tumours I am facing the very real (at 2.30am) possibility that I might not get to see my children get married or have children. I may never be a grandparent. I am trying to stay so strong for them, but this thought keeps creeping into my head and lodging there.

I know I can beat this, I have done it once, what I don't know is if I have the strength to beat it over and over again. If it comes back how many times can I keep fighting. 

If anyone knows, answers on a comment please. No postcards, the stamps are too expensive!!