About this Blog

This blog started as an online diary and place for me to rant about annoyances in my family.

However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.

On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.

October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.

It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.

It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.

For more inane ramblings, follow me on twitter

To see my crafty loves follow me on Pinterest
Follow Me on Pinterest

Why not like my new Facebook page
http://www.facebook.com/thepoohstickqueen" data-layout="standard" data-action="like" data-show-faces="true" data-share="true">

Or follow my photographic craziness on instragram

Wednesday, 31 August 2011

Chemotherapy - a lesson in timings

So, we turned up a the hospital prepared for a wait this time. The appointment was at 2pm and we were seen fairly promptly.

It started with me being weighed and measured. I know a women shouldn't talk about her weight, but I have always been slightly overweight, although with my height I have never looked it. The last time I weighed myself was on the Wii Fit, so not neccessarily as accurate but I was between 95 and 100kg. Yesterday I weighed 85kg, coupled with my height I am now officially (according to the BMI charts) 'Healthy'

When we went in to see the oncologist he made some small talk about how I was feeling, how I was recovering and did I have any other health problems. At this point we did have too mention the low blood pressure and whether it was since the operation or not. Too be honest I don't really know. I went too the GP about it the Wednesday before all this started. It had been going on for about 6 weeks before that and coupled with the anaemia, who really knows what was going on!!!!

Then we talked some more about the tumour. The oncologist categorise them as 'A', 'B' or 'C'. 'A' tumours are very localised and don't benefit from Chemo, 'C' tumours have spread and definitely require further treatment & 'B' tumours, which is were I fall in, are difficult to treat. 

It depends on the features of the tumour. Because my tumour had spread through the bowel wall (T4) chemo would be recommended. Chemo however is not a wonder treatment. It is only going to give me a 5% EXTRA chance of not getting cancer again based on someone who had the same type of cancer and didn't have chemo.

So onto the chemo itself, which is not going to start for a while yet.

I am going to have a combination of an intravenous drug called Oaliplatin, which will be administered once every three weeks at St Lukes Cancer Centre in Guildford and a 14 day course of Capecitabine tablets with a one week 'rest period' before the whole thing starts again. I will have 8 courses of this which is going to take 6 months.

However before all this can start I am going to have 'ovarian preservation'

I know I am very lucky that I have 2 beautiful children and should not expect more. But what woman could say that she would not be devastated at the thought that she might not be able to have any more children & that the choice was taken away from her through no fault of her own. So, yes, I am doing everything I can to allow me the opportunity to have more children in the future. If you think that that makes me selfish, then that is your choice, but unless you have been in my situation you cannot make any judgements.

So thats it, 8 lots of a 3 week chemo cycle, which will last the best part of 6 months, will leave me feeling rubbish and wanting and needing support from everyone

Monday, 29 August 2011

Tomorrow is chemo information day

I am going to go back a bit before I look forward.

While I was in hospital, Tony had to put Imogen down to bed awake, because mummy was not there to feed and cuddle her to sleep. I knew all along that this was making a rod for my own back but I loved the cuddles and they are small for so long that I didn't mind. 

This resulted in her screaming for, I have been told, 30 minutes the first night, 15 the following and then 5 or less. This remained the same when I came out of hospital both times.

Now I am feeling the pain. Since I came out of hospital and even more since we came back from Somerset Imogen has not settled. As I type she has been upstairs screaming for nearly an hour, I have been and resettled her, Tony has been and resettled her, we have left her. This is becoming a pattern. I want to break it. I have googled controlled crying which is what we are trying, I don't like it and even less because it is keeping Isaac awake but we are at the end of our tether. I cannot physically sit and cuddle her anymore. I did this at Beautiful Days in a camping chair and was dosed up on paracetamol. I cannot continue to dose of paracetamol just to get Imogen to sleep.

If anyone has any ideas please share them below. 

Anyway looking forward to tomorrow...

I have to confess, I have misplaced the letter confirming the time of the appointment. It is either 2pm or 2.30pm. Either way we have enlisted the services of our childminder from 1.30.

I have a list of questions as long as my arm, most of which I hope will be answered in the course of the consultation, but I must write them down so I can eliminate them as we talk.

I hope to blog tomorrow after the consultation and will update you all then.

..... As an aside Imogen is still screaming, I have been up to see here, she is now sitting on our bed while Daddy ignores her to allow Isaac to go to sleep....

Wednesday, 24 August 2011

What a Beautiful Day

Thursday evenings Rainbow

What do most people do 4 weeks after major abdominal surgery & finding out that they have cancer?

Most people are probably recuperating and resting at home. Maybe taking it easy and starting to recover.

Not me. Not one to do things by halves -  me, hubby, a very determined 18 month old and a very excited 3 year old along with auntie Jo took off for Beautiful Days festival at Escot Park, Devon.

Monday Morning, we all survived

There were hiccups along the way. The 'tank' had a water leak and had been in the garage since I was in hospital and was due to be repaired and completed the week before the festival. The part didn't come and so we were resigned to packing extremely lightly and heading to a music festival in the Megane coupe cabriolet. Although it was surprisingly roomy, however I did still forget my wellies!!

I consider myself quite good at festivalling (is that even a word?) I have 'done' Glastonbury, and this was my 5th Beautiful Days & 2nd with the kids. But I had not anticipated the effect that the surgery had had on me. 

I am so used to being able to do everything that I felt like a bit of a spare part on the Thursday when first Tony and then Tony and Jo had to make multiple journey's between the car and the tent. The same feeling came over me on Monday when we were packing up and I only managed to make one trip to the car carrying my handbag and a couple of chairs. 

Isaac and the Wooden mushrooms
Imogen hiding behind the fairy arch
The biggest difference between festivals pre kids and post kids is how close you can get to the music, Last year this bothered me, as Tony got to be up the front while I was looking after Imogen (who was only 6 months old). This year I sat outside the tent listening but not seeing or at the back of the arena, sometimes even not seeing while I cuddled sleepy toddlers or rested a very sore tummy and back.

Some of the highlights of the weekend for me were.....
Imogen grooving

Isaac grooving
  • Learning to crochet in the kids craft area
  • Watching the kids playing around some of the 'fairy arches', wooden sculptures & water features
  • Watching both Imogen and Isaac dancing around to both Flogging Molly and the Levellers
  • Discovering 'fireworks' mode on my camera and getting some awesome shots following the Levellers set on Sunday evening

Fireworks mode rocks

Getting ready for bed

Tuesday, 9 August 2011

One week on - I am turning into my mum and dad!!

OK, so it isn't quite a week but a lot can happen in a week.

Isn't it funny when something happens to you suddenly it is everywhere? More on that later.

Last Thursday we packed Isaac onto a train with my mum and packed Imogen and a lot of stuff into Tony's car and headed west.

Tony loves his car - I hated it. He has a renault megane coupe cabriolet (I think that's right), which although it has back seats actually has no leg room in the back and when you have to fit 2 car seats in the back you need leg room in the back. I always end up sitting with my legs in funny positions which I can normally cope with, however the sitting bolt upright because you can't recline the seat was the worst thing. We got to Fleet services on the M3 and I struggled to get out of the car. That combined with the fact that I am still having mini blackouts when I stand up is not great. So I moved the seat forward and, nasty mummy alert, squashed Imogens legs, by reclining it as much as possible.

We arrived in the West Country about an hour or so after Isaac and mum although I think mum was hoping to have longer to prepare for us. 

Not much happened then, Jo came round after work to see my wound & if I am honest I felt like no one else cared.

I can't write about everything that has happened over the last few days on here not because I don't want too, but because I am aware that this is a public medium and we need to have a balance, which you wouldn't get if I put only my side of the story on here. 

I have done quite a lot over the last few days.

- Met my new niece, who you might recall was born about an hour after I came out of surgery. She is gorgeous, if massive. Huge respect to Becci, who is a foot shorter than me, for having her naturally. She was massive at 10lb 6oz. I do still need to finish her present though. It's nearly there, just I hate the making up part of knitting!!!

 - Done my last third birthday party for a while, Toddlers have so much energy it makes me consider bottling it and appearing on Dragons Den to sell it!! A lovely time was had by all.

 - Walked to the supermarket and back. This was all of a mile in total, but it totally took it out of me

- Realised last night while I was watching iplayer in bed, that I have turned into my mum and dad. Their Monday night viewing consists of University Challenge, Antiques Master, then New Tricks and 10'o'clock News & that was what I watched. I could have gone downstairs and watched it with them, but I am sleeping so appallingly at the moment that I prefer to be upstairs where I can drop off if necessary.

Anyway I mentioned at the top that Bowel Cancer now seems to be everywhere and I shall now explain.

My mum gets Take a Break magazine and I like to flick through them and have a look at what is in there. Flicking through the medical pages low and behold a whole article on a women who had survived bowel cancer, and then all the things you should either do or avoid to reduce your risk of cancer. The list was crap I do (or don't do) most of the things you need to do to reduce your risk and what do I have CANCER.

FYI here are some of the things on the list
- Always use sunscreen. I am incredibly fair skinned and lather factor 30 or higher on me and the kids at the first sight of the sun and very rarely burn
- Loose weight. According to my BMI I am overweight, however I have been my 'ideal weight' and people who see photos of me from that time comment on how ill I looked
- Eat Healthily. As a mum of 2, I cannot feed my kids stuff that I would not eat so although we occasionally will have a take away or a McDonalds, we eat a healthy balanced diet which includes all the major food groups (including Starbucks and Cake). I cannot make the kids eat fruit and veg if I don't & yet Cancer still got me.
- Keep Active. I have 2 toddlers!!!!!
- Stop Smoking, reduce alcohol consumption. OK I smoked when I was at college and when I was drunk at uni and was offered and occasionally at music festivals, but I haven't touched a cigarette at all since 2007. And yeah I used to drink, until I spent several years becoming quite suicidal when I drank and I am a proper occasional drinker. I can clearly remember the last time I was drunk because I tried to walk out in front of a car. It was January 2006. I have a very occasional beer or glass of wine


Wednesday, 3 August 2011

An upto date update

So this is actually about what happened today rather than me writing in the past.

The appointment was at 4.20, and at 5pm we were still waiting. Typical NHS really, although the car park ticket did run out at 5pm, but we figured that if we went back to the car we would miss our appointment so we didn't.

So we went in eventually and the consultant was there along with the cancer support nurse and a general outpatient nurse.

I told him about the fainting and showed the quite impressive bruise on my arm. then we talked about the serious stuff.

Now, we had prepared for it being cancer after the consultant had talked to me in recovery. Although we hadn't told many people it was cancerous we were prepared. I was more worried that it had spread and gone into the lymph nodes and I knew that they had removed some of those too.

But it hadn't, yes the tumor was cancer, but it hadn't spread to any of the lymph nodes at all. 

I think we were relieved. In fact I had been so prepared for worse news that I almost felt light headed. 

For all the technical/medical people out there it was a T4, N0 tumor. 
T4 means it had spread all the way through my bowel wall, but N0 means that no lymph nodes are involved.

After that I had a chat about my pain relief saga in surgical stepdown and how I kept having nightmares about it and the consultant is going to contact people so that I can have some 'closure'.

Then he had a look at my wound and was most impressed & told me I could have started showering after 2 days and didn't need to have waited all this time either!!

Then the way forward.....

Because I am so young ( I love that bit) I needed to have chemo to ensure that it doesn't reoccur and to get any tiny bits that they might have missed.
Also, I think my brother and sisters are going to hate me, they need to have colonoscopy's to check that they are not going to suffer too. Sorry about that Jo, Phil & Sharon.
& when they get older the kids will need to be checked too. They might even do some form of genetic testing too.

So its all over, well not over. I shall definitely be back on here to update you with the progress and the past once I know what happened in surgical stepdown. But I know where I am going.....


for drinking, sleeping, camping and lots of lovely live folky, hippy music.

Please leave comments if you want but I am so appreciative of all the support that you virtual, tweeters, FB ers etc have given me that I cannot express it.

Tuesday, 2 August 2011

20th - 22nd July - The Operation, the first night & agony

Wednesday was fairly uneventful. I got something to unblock me, I signed the consent form for the operation, A right hemicolonectomy, and I had to drink the worst drink I have ever had known as 'preload'. It was just really sugary water, but it was very unpleasant. 

I became fluids only from 6pm, other than the preload, I had one lot at 6pm, another at 9pm then was woken at 5.50am the following morning because other than a sip of water to take my pain killers I was now nil by mouth.

Thursday morning things were still up in the air. I was still an emergency operation so I could have been bumped if something else came up. Luckily nothing did so I had a visit from the anaesthetist, then the colorectal nurse, who I had seen a couple of times before to talk about things came along & then the porter arrived at about 9.45.

I settled down in my bed and was whisked off to pre op, where I had to repeat myself over and over again and confirm it was my signature about 3 times to ensure that they definitely had the right person and weren't going to remove a section of some poor unsuspecting persons bowel and associated lymph nodes.

At 10.15 I was taken to be anaesthetised. Here the constant pricking of the last two weeks caught up with me. Having had 4 canualas in when I had been in hospital previously as well as some stand alone blood tests both on the previous visit and current visit my veins had decided enough was enough!!.

Initially they couldn't find a tourniquet so one of the surgical nurses acted as a human tourniquet starting with the back of my left hand, then the back of my right. Nothing, Nada, No luck with that, my veins declined to play ball.

The anaesthetic doctor than bought out the big guns - the ultrasound machine - he scanned the inside of my left elbow, 'oh, lovely veins' he said, took out a needle and Nothing, Nada, No luck there either. So he scooted him and his machine around to the other side, scanned my right elbow and again 'Oh, more lovely veins' I even got to see them on the screen. He took his last needle, put it in, wiggled it around (yeah that sounds rude I know) and again Nothing, Nada

They had a little muttered conversation behind me, it was now about 10.30am and I was starting to worry about how they were going to anaesthetise me if they couldn't find a vein.

Then they came back. 'We're going to have to put a central line in'

It turns out a central line goes into your neck. 

This was one of the scariest things I have been through, at this point anyway. My head was covered with a plastic sheet, I had, in total, 3 injections of local anaesthetic into my neck and then was manipulated, proded, poked and manhandled for about 25 minutes while the anaesthetist inserted the central line. I was terrified. All your instincts tell you that needles and necks don't mix, but here I was voluntarily allowing someone I had met about 2 hours ago inject me and manhandle me to put something in. I am not ashamed to say that I squeezed the nurses hand incredibly hard, and cried quite profusely too. It got really hot under the plastic sheet and you feel very claustrophobic. 

After that I had to then roll onto my side while they put the epidural in. I didn't have much faith in this as I had had one when I had Isaac and it hadn't worked all that well. I don't remember much after that.

My next vague memory is of being made to sit forward, and I think they put something behind me and took an X-Ray, but I am not sure.

I did eventually come round and was in a slightly more sitting position and felt very drowsy and uncomfortable. 

I spent about 3 hours in recovery. Periodically I remember someone touching me with an ice cube and a needle. I think this was something to do with the epidural. Eventually the consultant came in and he told me that he had phoned Tony and told him I was out and then I asked the question that I was not sure I wanted to know the answer too.

'Was it a success?'

He told me the tumor was the size of a golf ball and he had removed a lot of the surrounding lymph nodes and tissue and that he was fairly sure that the tumor was cancerous, but it would have to be sent off for histology before we would know.

At the same time he set up one of mans greatest inventions, a PCA. PCA stands for patient controlled analgesia. It is basically a morphine drip that you, as the patient, control. You get a button that you can press and it delivers morphine into your blood stream. I could only press the button once every 5 minutes but that was enough.

About 5.30pm I was moved into the High Dependancy or Surgical Stepdown unit. 

This was a most unpleasant experience. It started with my epidural being turned off after about an hour in there. It eventually got restarted about midnight despite me being in tears due to the pain despite pressing my PCA button almost constantly. On top of this, I received all my belongings from the ward along with a note from Tony telling me Becci and Phil had had their baby at 3.30pm and he had decided to take mum and the kids to Somerset to see the baby rather than coming to see his wife in hospital. As soon as I got this message I tried to call him. He didn't answer his phone. I managed a one word message on his voicemail. I then called my dad at home and told him what ward I was on, what the hospital phone number was and to get Tony to call me as soon as possible. Tony didn't call me til 10.30 because they had been to the hospital first - again New baby comes before sick wife. Yes I was annoyed about this. 

After speaking to Tony and telling him what the surgeon had told me about the tumor I thought that I might get some sleep. This was harder than it sounds. I was in a lot of pain, I had to have my blood pressure, temperature and O2 SATS taken hourly throughout the night. As I said earlier someone finally came and restarted my epidural about midnight, and I managed to get about 3 hours sleep, until the morphine ran out. Then I encountered another power hungry doctor who obviously did not like night shifts. This doctor refused me more morphine and I had to make do with liquid paracetamol. 

This was not good and I think I might have blanked out what happened next because I want to speak to my consultant and see what actually happened so I  know rather than relying on my memory.

Writing this, although cathartic, has made me sob several times so I shall let you know about my day in surgical stepdown unit soon.

The Entourage and a Dr on a Power trip July 19th

If I thought Tuesday was going to be a quite day in hospital I was wrong. 

I had assumed that as I would not have been seen by the consultant until Wednesday if I had still been an outpatient the same would have applied as an inpatient.

I was wrong. 

They must start work really early in hospital because the entourage came around to see me quite early. It must have been between 10 and 11. I think I might have to explain 'the entourage'. It usually consisted of between 3 and 5 people maybe even more and was normally at least one consultant, although on Tuesday morning it was both consultants, & 2 or more others who I have since found out are the 'registrars', 'senior house officers' & 'house officers'. All of whom are really Dr's at different levels. There would normally be one of the staff nurses from the ward who would be in there as well. 

So 'the entourage' arrived and made some polite small talk about how was I feeling etc. Then they landed their bombshell. Just like that. The biopsy results were inconclusive, there might have been some traces of cancer (except they didn't say it like that & it is only now that I realise that they were trying to prepare me that it probably was) and because the results were inconclusive they wanted to operate as soon as possible, ideally Thursday or Friday.

I hate this bit of hospital. Visiting hours are all in the afternoon or evening, so someone can come and drop a bombshell like this on you and then you have to deal with it on your own and have to try and translate it and remember all the crucial bits to discuss with your family later when actually what you, or more accurately I, wanted to do when my family came in was forget where I was, play with my kids who had done nothing to deserve this and spend an hour to an hour and a half being mummy rather than a cancer patient. 

I spent the rest of the morning and time to visiting time watching the builders outside and generally just relaxing and trying to come to terms with what had happened earlier.

Mum bought the kids in and we explained about Mummy having a baddy in her tummy and that the dr's were going to have to snip it out of mummy but then she would be all better. Then they found some of my scraps of wool and the blue floor and had great fun pretending to go fishing and crabbing from the bed and the chairs. Lots of fish were caught and released, never say that I am not teaching my children good marine stewardship!!

Later once mum and the kids had gone and tea had been eaten - More sandwiches, Tony came in and bought some of the things I had forgotten to pack like my ipod charger and other things. 

I realised later on that the laxative I had been given the day before had still not worked and I was starting to be in quite a lot of pain from both the tumor and the blockage. I resolved to be brave and ask the staff nurse for something.

This is when I encountered the 'Dr on a Power Trip'

I explained the situation to the staff nurse and asked if there was anything I was able to take because of how uncomfortable I was. She explained that she would have to call the on call Dr and get them to prescribe something. She came back about 10 minutes later and said that the Dr had refused to prescribe anything because I should have asked my consultant that morning. How ridiculous is that. How was I supposed to know at 10am that I would be this blocked up and uncomfortable by 10pm? She was very understanding and went back and tried again. The response was the same. Tough, she should have done something about it this morning. If I had a crystal ball I would have. Lets face it, after childbirth you have very little dignity left but this was an uncomfortable situation at the best of times. In the end we (the staff nurse & I) decided that if I wasn't able to have something to relieve the pain and help unblock we would control the pain, so I got some more oromorph. But it worked and I slept.

Monday, 1 August 2011

Monday July 18th - Back to the Hospital

The pain remained on Sunday Evening, so after tossing and turning all night I decided I would call the hospital.

I called and was put through to the consultants secretary and explained my situation. She took all my details and said that she would get someone to look at it. While I was calling the hospital I realised that you could get through to the emergency department so I tried calling them, but they said I would have to come in and wait. I didn't fancy that. So I called my GP.

My GP has an emergency system whereby you leave your name and number and someone calls you back. The Dr that called me back could not have been better. I explained that situation and that I was taking the maximum dose of the paracetaol and tramadol and that they were not touching the pain anymore. He suggested a 'patch' that I could wear that would be stronger than what I was on already. What was even better was that he didn't want to see me. He would write me a prescription which I could collect from the front desk and I would have to go in the following day for an appointment to check it was working properly. I was waiting for Tony to come home from work so that he would be able to take me down to the GP's surgery to collect it. He wasn't happy about it as he wanted to go to bed, but sick wife takes precedent. We drove down to the GP's, I queued to request the prescription, got back in the car and then drove home. When we got back we had to locate the funds to enable us to pay for the prescription. This really annoyed me. I hadn't asked for any of this and certainly not this level of pain and then to have to pay £7.20 for the privilege of not being in pain anymore seems very wrong. 

Tony was dispatched to bed, and mum and the kids prepared to go to the chemist and anything else that grabbed their fancy while they were out. It must have been about 10.45 by now. I was beginning to have my faith restored in the NHS.

About 11.15 the phone rang, it was the consultants secretary she had spoken to one of the 'entourage' and they thought that it was worth me going back up to the hospital to SAU, Surgical Assessment Unit, to see him and to check there was nothing else wrong. 

As I hung up the phone, mum and the kids walked back through the door and I explained the new plan. 

We headed back to the hospital and I left mum and the kids with the car while I found the SAU and prepared to wait. While I was waiting they took blood, and 'obs' started again. I also had to go and have more X Rays to check that the tumor hadn't grown. 

Then I saw the surgeon/dr/entourage member - I am not sure what he was but he was familiar as I had seen him before. He prescribed a painkiller called 'Oromorph' and examined me. It appeared I had gone the other way and was 'blocked up' which was probably what was causing the pain. So we needed to 'unblock'.

 It was about 4pm now and I hadn't had any pain relief since 8am when I woke up. I managed to attract the attention of the nurse and she bought me some oromorph. It is a liquid painkiller which does not taste most pleasant, but it works. She also slipped something into my hand which I would use later and which wouldn't work.

At about 6pm I found out that they were readmitting me and the bed manager was trying to find me a bed. I didn't realise that this process would take so long. When the shifts changed at 7.30/8pm the staff nurse told me that I would probably have a bed in the next hour. This was the longest hour in history. I finally got a bed at 11.30.

So my ward - Actually this was the best part. I had a private room with en suite bathroom, and curtains 6 inches too short, with a view of the builders supply area and consequently the next day a lot of strange men walking past the window. My room also had one of the noisiest beds known to man!!

So, at 11.45pm I settled down in what was to be my home for the next 9 days (both the bed and the ward)