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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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

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Monday, 28 October 2013

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!!