Chemo round one

I realise that this is a few days late and I actually had chemo last Thursday. 

But we will go back one more day to Wednesday when I left mum with all three children and headed to Guildford to have my PICC line put back in. While having the line in I was chatting with the nurse about how demoralising I had found chemotherapy before and I was worried this time because I would be bringing Hope and found it really uncomfortable to sit on the ward with the more mature people who were giving you their life stories, which I don't care about. I have enough going on in my life without hearing about how you have had chemotherapy for 3 or 4 different types of cancer, or about how your cancer keeps coming back quicker and quicker. I don't want to face up to the fact that in 30 years time I might still be going back and forward to St Luke's to have yet another round of chemo. I need to keep the faith that this will be the last time I have chemo.

Judith the PICC nurse, listened and when I came back from having the X-ray to check the line was in the right place she introduced me to Claire, who is a Macmillan liaison nurse who listened and completely understood where I was coming from and came up with loads of solutions. These solutions made Thursday ( and going forward Wednesdays) much more approachable and hopefully bearable.

The unit where I have chemo has a 'treatment' room which has a bed and private bathroom ( essential for someone with my unpredictable bowel habits). Last Thursday we arrived at the unit and were able to use this room for my treatment. 

This made things a lot easier and less stressful. Hope did not want to settle for a sleep and if I had been in the main room this would have ramped up my stress levels massively while she whinged and screamed at me. Instead I snuggled her into bed with me and rocked and cuddled her until she fell asleep.I can't offer her the ultimate comfort anymore as I am not breastfeeding (& that is a whole other post coming up soon). But I can provide a safe and secure environment where her needs are met to the best of my ability.

Back to the actual treatment. We started with a saline IV, then the irinotecan which took a couple of hours to infuse. Another lot of saline, then the folinic acid, and finally the pump of 5FU was connected.

If I hadn't had the pump, I wouldn't have known I had had chemo. I remember leaving the unit after my first dose of oxaliplatin and my face hurt, it hurt to breathe I would not have been able to drive. This time there was nothing.

Ok, not nothing, there was a little bit of nausea, but I know that the myriad of drugs can control that. 

So we went home and hatched our weekend plans. I would not have got through the last couple of weeks without my mum being able to stop everything to come and get Hope to take a bottle and drop children at school, pre school and just provide general support. But  our house is not big enough for her to live with us so we had to take her home. 

Friday after school we loaded the car and headed home to the West Country. I had a nap in the back of the car and was very grateful to the spaciousness of the car for this pleasure. 

We eventually arrived back in Somerset by 9.30 and it was a relief to everyone, we got the big 2 into bed and hoped Hope would settle down and go to sleep which she was not really happy with, so she had a little play with Grandpa. 

Bright and early Saturday morning the children were up, despite a late night so we headed to Cardiff for the real reason for our visit. Tony had 2 tickets for the Rugby league World Cup opening ceremony and first two matches. 

While Isaac and Tony went to the match,  Imogen, Hope and I took advantage of Cardiff's shopping and came back to meet them significantly poorer!!

Tony and Isaac were supposed to watch both matches, but the late nights had caught up with them and we headed back to our hotel for some much needed r&r. Not much chance of that with a 3 year old, 5 year old and 6 month old. But eventually everyone fell asleep and I spent most of the night battling, I think, an irinotecan side effect in the form of bowel issues. 

5.38am - the clocks had gone back. But the children did not agree and so they were up and we were counting down til 8am and we could go for breakfast and then head back to Somerset. 

The reason I have told you all this is to illustrate the massive differences between all the chemotherapy regimes. After oxaliplatin I would not and could not have contemplated this. It didn't end there. 

Back to Somerset to leave Isaac and Imogen with grandma and grandpa for a few days. 

And finally back to Crawley at 11pm on Sunday night.

There are other bits, but I'll surprise you with those later!!

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!!

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!!!