Moving forwards

Earlier this week following my disappointing colonoscopy, I managed to get one of those rare things, A same day GP appointment. I don't quite know how I managed it? I wasn't on the phone constantly pressing redial at 8am when the lines opened, instead I called about 9.10, when we got back from dropping Isaac at school and was able to get an appointment for later that morning.

Please don't hate me.

Why did I feel the need to go back to the GP? Well, I weighed myself again & was shocked to say the least, ready for it??

58.4kg, that's under 9.5stone, that definitely makes me underweight. It means I've lost about a stone in the last 6 weeks. This shouldn't have happened, I've been eating better - jacket potatoes, salad, soup, chilli, tuna and lots of fruit - plums, apples, pears, melon, grapes, bananas.

When I walked into the GP's room he took one look at me and made me stand on the scales. Finally someone agreed with me.

'There is definitely a problem he said.

We talked some more about my bowel issues, the clear colonoscopy, the referral for an endoscopy.

He agrees with me that my body is not processing something. He kept mentioning malabsorption issues. I bought up the coeliac connection and he has agreed to test for it, alongside a plethora of other blood tests and stool samples.

So, my endoscopy letter came today, it's on Friday. Not sure whether to go for the local anaesthetic or the sedation again? I am inclined to go for sedation given the discomfort I experienced when having an NG tube inserted almost 2 years ago. 

Blood tests are also on Friday, it does take a couple of weeks for results, but hopefully we are moving towards some answers.

Colonoscopy round 2

At 7.15 yesterday morning Tony dropped me off at the hospital for another go with the colonoscopy. 

Having been up most of the night with the preparation going on, the moment I walked through the doors I HAD to go. If I had known how much of a problem this was going to cause later on, I would have rather waited. Alas hindsight is a marvellous thing.

I got to the unit and gave my name, was asked where my baby was and then took a seat. A this point Tony was dropping the 2 bigger children off with childcarers who would be able to look after them and drop them off at school etc. 

After about 45 minutes waiting I was called to meet my anaesthetist who was lovely and went through a few questions about me and my history. We talked about my crappy veins and she reassured me that this would not be a problem. 

I went back into the waiting room and then was called to be admitted by a HCA. Again the bowel related urgency struck and I needed to go. She gave me a sample pot, and I really tried, but having not drunk anything since about midnight, all I could produce was bowel motions. 

I went into her room and went through all the questions again. I mean the NHS could be so much more efficient if one person did this rather than the 3 that I eventually saw, who went through the same thing. She told me that I really needed to try and produce a sample.

About 9am Tony & Hope arrived, as the anaesthetist had told me I was first on the list I decided to feed Hope fairly soon. Just after I had finished feeding her I was called to meet the consultant who would do the procedure. I signed all he consent forms and was told to change into a hospital gown and the lovely stockings. 

Then a nurse came in and told me I couldn't go until I had passed urine. At this point I had tried three times and was not able to pass urine. I couldn't understand why it was so important and told her I had passed urine when I entered the hospital as due to the colonoscopy prep I had had to go, and was not able to produce anymore.

As I was explaining this, the nurse walked out of the room and I could overhear her talking to a colleague about how I was shouting and abusing her. I DID NOT SHOUT AND I CERTAINLY WASN'T ABUSING HER. I had calmly pointed out that this was stressful for me due to having just fed my baby because I knew I was due to go up, and I could not always produce urine on demand. 

Eventually, probably about an hour later, someone else, I don't know who she was, came in and told me I had to pass urine. I explained I couldn't. All they wanted to know was whether I could be pregnant. I can definitely confirm there is no way I am pregnant. All someone had to do was ask. 

Eventually I was taken up to theatre and met my anaesthetist again.

She couldn't find a vein, so gave me some lovely gas, which I took three puffs and  I was out. 

I woke up in recovery, with a cannula in the crook of my elbow and a lovely nurse checking all my vital signs.

I was eventually reunited with Tony and Hope, who had refused the bottle he offered her, and then the consultant came round.

I'm still processing what he told me.

My colon is clear, no problems, nothing to worry about. But he did take some biopsies for microcollitis.

We had a bit of a chat about my symptoms and he is referring me for an endoscopy, to check my stomach, but he agrees something is definitely  wrong with the way my body is processing my food.

In the meantime I am the proud owner of a photo of the inside of my colon!!

Thinking outside the box

Thank goodness for managers and people who can think outside the box. I'll elaborate more in a second.

On Saturday I had my colonoscopy pre assessment appointment. This was basically a tick box exercise which I found very unsatisfactory. The lack of understanding about breastfeeding amongst healthcare professionals never ceases to amaze me. 

The nurse who completed my assessment was very dismissive of my need to breastfeed Hope before & after the procedure and TOLD me that anaesthetics and breastfeeding don't mix, you have to express or give formula. When I told her that wasn't really an option as Hope resists the bottle I was told that I'd probably have to wait until I'd finished breastfeeding as you CAN'T feed for 48 hours after a general anaesthetic. 

I questioned this as I know people have babies under general anaesthetic and feed pretty much straight away and was told that doesn't happen!! 

The appointment was left that she would speak with an anaesthetist and call me on Monday.

Monday came and went & no phone call. Today I was gearing myself up to call, when my phone rang. 

It was the endoscopy department. After confirming who I was she launched straight into her rant.

'We need to know whether you are having your colonoscopy on 17th as we have been told you refuse to stop breastfeeding'

Wow, talk about confrontational. I stopped her at this point. 

I am not refusing to stop breastfeeding, I was waiting for a phone call to confirm whether a suitable anaesthetic was available for me as a breastfeeding mother. 

She told me...I am not a clinician, but no anaesthetic is suitable for breastfeeding you have to express for 48 hours or give formula. 

Again I said that I thought this was not correct and would like to see what an anaesthetist said.

She reluctantly agreed and I prepared to vent my spleen on here about how breastfeeding unfriendly my local hospital was, when the phone rang.

It was the manager of the pre assessment unit, she was not interested in ticking boxes, but interested in working with me to find a solution. 

I explained what I saw happening, so that we could make this work. It's simple really.

Tony & Hope come with me, I feed before I go under, Tony & Hope wander around the hospital, I come round and pump, dump, then feed. 

Fine, she said no problem. 

In reality, I have to be at the hospital for 7:30 so, we will all go to the hospital and drop me off, Tony will bring all three children back and drop them at respective childcarers, then come back, see where I am and follow the plan.

All I can say is thank heavens for managers who have common sense and can think outside the very narrow boxes the NHS seems to use.

Today's dramas!!

So, at 5:10 this morning my beautiful little girl decided that it was time to get up for the day. This is alongside me running backwards and forwards to the toilet all night.

I fed her, she was definitely not going back to sleep so we watched some Airline USA, there is really nothing on other than news at that time in the morning!!

About 5:45 I went and put the kettle on in preparation for my final drink of citramag. 

By 6:45 it was ready to drink and I sat back and thought positive thoughts and it stayed down. I chased it with some water and sat back and waited. 

By 9am, we were all ready to leave, big two breakfasted, laundry hanging on the line, multiple toilet stops completed, you get the drift!!

We dropped the big two at grandmas house and headed to the hospital. 

Little one decided tactics at this point were to scream her way to the endoscopy department as suddenly she was starving.

I booked in, fed Hope and started waiting. The nurse called me in about 10:45 and went through all my details. He also tried to insert a cannula.

I asked him if I could wait in the waiting room and have about 10 minutes notice before my procedure so I could feed Hope again. 

Back in the waiting room, we watched some more BBC daytime TV and waited. About 11:40 I got my 10 minute warning so attempted to feed Hope and waited.

And waited, 40 minutes later I still hadn't gone in so fed her again and checked with the receptionist what the situation was. Then my nurse left, clutching a bag of carrot sticks!!

A different nurse then came out and seemed slightly confused about where I was and despite me being pointed out twice by the receptionist still seemed slightly confused. 

The next bit is slightly surreal, I had not been sedated, but felt fairly sure this new nurse was one sandwich short of a picnic. As we walked up to the treatment room he kept staring at me, finally I asked him why. 

'I have never seen a women as tall as you'  he said. I mean WTF, talk about random!!

I won't fill you in on the details of the procedure, mostly as i can't remember, but unfortunately it was not very successful. 

It appears I had double the amount of sedation and was sucking on the gas and air like it was going out of fashion. But due to my surgery I have a very twisty colon which means that I cannot tolerate the procedure like normal people and am now going to have to go through the preparation all again to have the procedure under a general anaesthetic.

So, having finally got a bit of sleep this afternoon, I am facing another weekend in the not to distant future cleansing my colon and another 4-5 hours waiting and waiting.

Really bowel cancer and its subsequent complications never end.

Colonoscopy prep, this might be graphic!!

So, at 2pm today operation preparation began.

The 10 senna tablets went down during the first episode of 24 series 8 that I had decided to watch to pass the time and keep me close to the toilet. 

Coupled with the copious amounts of water I have been forcing myself to drink this kept me on the loo for a while, although things were not really moving as well as I wanted. 

Come 4.30 I went and put the kettle on for the preparation of the citramag (ok I lie, Tony actually did it, but I went and made the stuff). After letting it cool for the requisit 30 minutes I attempted to drink it, which I managed. And then added more water into the mix, as well as a strained vegetable cuppa soup. 

This had the effect of making me feel very bloated and almost looking pregnant again!! 

Come 7pm it was time for more citramag, which my loving husband prepared and delivered to me. I took one sip and that was it, I knew that this was not staying down and boy was it not staying down.

Other than returning to bed to briefly feed Hope I have been vomiting & defecating with alarming regularity and ease for the last two hours.

I have missed Dragons Den ( thank goodness for BBC iPlayer) and am now trying to catch up on Dexter, but having missed the last two episodes and with no time for a sky plus catch up, I have no idea what is going on.

Things appear to be calming down now, and hopefully I can settle down and get some sleep in.

Send me sleep vibes please ;)

My body has given up

Since December 2007 I have either been pregnant, breastfeeding or battling cancer and as a result I think my body may have decided it is time to throw in the towel.

No, no, I am not dying but there are a lot of things wrong with my body and I am annoyed that in this quick fix era there is no quick fix for the human body.


Before Hope was conceived I was a comfortable dress size 16. I was happy with this and had started running and doing yoga to try and tone up some of those Mummy Wobbly bits, but was not planning on loosing any more weight. Fast forward to today. I am wearing a pair of size 14 jeans that I bough when Hope was 6 weeks old and they are too big. I have lost at least 15 kgs since she was conceived and I am worried. 

I know that this statement puts me at odds with the vast majority of my sex. Most women would kill to loose weight without having to watch what they eat and excersise, but not me. I have never worried about my weight. Other than 3 months before my wedding where I used slimfast to try and loose a few pounds I have never dieted. Yet, I cannot keep weight on at the moment. I look in the mirror and see an ill looking stranger looking back at me. According to the NHS BMI calculator here I am healthy, but I was also healthy when I was 15kgs heavier and I was also a lot happier.

Add to the unexplained dramatic weight loss all the other health complaints I am suffering and you would be forgiven for thinking that I am on a one woman campaign to use every bit of the NHS!!

I am still having physio for the back pain which came on when I was pregnant.

Then there is the bowel stuff

If you do not like poo related discussions you might want to stop reading now :)

Since having Hope my bowels have become somewhat unpredictable again. I almost feel like I have regressed to how they were acting post surgery. It is explosive, unpleasant smelling, urgent and frequent. Combined with incredible bloating & stomach cramps like I have never experienced before my GP has been able to refer me for another colonoscopy (on Monday so I am starting my preparation tonight) and I have seriously considered cutting things out of my diet.

No, scratch that I have cut something out of my diet. On Wednesday I made the decision that the agony I have been suffering after a sandwich is something not worth the pain so I have decided to cut out gluten/wheat. Actually I do feel better for it. But it is unscientific as I have no diagnosis to confirm whether or not I need to do this. But it does help. 

What doesn't help is this TV advert which has me crazing a large slice of hot buttered home made toast and marmite.

But hopefully come September we will have some answers or some tablets and I will be able to move further away from the toilet!!!

24 months is really quite a long time

They say a lot can happen in a week (or a week is a long time in politics).

I am definitely not a politician and a week to me is far too long, mostly because of bickering children and the weather being far too hot for all of us. 

But I want to look even further back than a week, to Thursday, July 21st 2011. This was a date that will forever be etched in my memory as the date that I found out I had cancer. 

But, if you remember even then it wasn't definitely cancer. It was just a stage 4 tumor. The cancerous nature of it was not known. 

I have been reminiscing a lot over the last couple of weeks about this and how I feel now. I have to be honest since having Hope (14 weeks old and looking lovely) a lot of fears have resurfaced. 

Prior to my cancer diagnosis and since having Imogen I knew something was not right with my body and kept going backwards and forwards to the GP trying to get them to agree that it was more than just 'ovulation pains' or 'IBS'.

Since Hope was born, these fears have resurfaced. My body appears to have regressed to a post surgery state again. I veer from having very uncomfortable blocked bowels to liquid ones in the space of 36 hours. I am loosing lots of weight and am feeling tired, dizzy and rundown. 

My GP's are great at reassuring me and running goodness knows how many tests to try and put my mind at ease and constantly reminding me that I am breastfeeding a very hungry 14 week old as well as running myself raged looking after a 5 year old and a 3 year old. 

However the heat, coupled with the never ending back pain means that I am not looking after me properly. Some evenings I don't eat as I can't face any food. Other times I will eat three decent sized portions of food before midday .

At the moment I am feeling fairly confident that the cancer has not returned, but I cannot shake the fear that it will return and I won't know about it. It has snuck up on me once before, what is to stop it doing it again. 

Sometimes I look at the three beautiful children I have been so privileged to have and wonder whether it was fair to have a third knowing that she might carry my faulty gene and have the inherited risk of bowel cancer? I do have these fears for Isaac and Imogen, but I had them before I knew of my cancer. Was I selfish to have a third child knowing that I might pass on that gene?

Only time will tell, but if my children read this I am sorry if you have inherited the gene's that make you predestined for bowel cancer. I am sorry that I have exposed you to this nasty, evil disease. But I love you and you have made my world complete (sounds really cheesy).

So, 2 years on, I continue to live in fear, but also surrounded by the most wonderful things in the world

Isaac, Imogen and Hope and my fantastic husband