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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Sunday, 18 September 2011

I just found a cola bottle sweet in the washing machine

But unfortunately that's as funny as it gets today. I feel the need for honesty about how I am feeling before I loose the plot and collapse into a quivering wreck on the floor.

I am a wreck. I feel emotionally drained, tearful & on a rapid downhill rollercoaster I can't stop. 

So lets think about why I feel like this and what has bought it on?

1. Imogen. Or more specifically her sleeping. I have already talked about how, since we came back from Somerset at the end of August she has taken an age to settle and routinely woken in the night. I am at the end of my tether, her screaming breaks my heart but I know I need to let her learn how to settle herself. I just wish it wasn't so painful. More than that though I am fed up with everyone giving me an opinion and telling me that I just need to let her scream it out because by going in to her I am encouraging her.
Firstly I do not believe in letting her scream uncontrolled. I believe that it is harmful for the child and does not teach them anything. When Imogen is screaming I am sitting in the room providing reassuring words and keeping calm. I cannot do this in the middle of the night.
Secondly if I let her scream for to long she wakes Isaac up. Then I have 2 awake toddlers not one. Isaac can settle himself but if he is too awake he struggles on his own and cannot understand why he can't come into mummy's bed too. 
Thirdly although we have a third bedroom it is in no fit state to put a child in and let them scream it out. It needs at least a week of 'decluttering'. I fully intend to eBay, car boot, nearly new sale and recycle the things in there (and in the attic come to think of it) but at the moment: 
(a) I have more important things to do
(b) I have 2 children to look after and they need my attention, although I do do some things in the evenings.
Finally I like having the kids in bed with me. Although they wriggle and fidget there is nothing lovelier than when they snuggle in to me. I love being woken up by the children in bed with me rather than a screaming Imogen or the immortal toddler phrase 'Mummy, I need a wee wee'

2. The whole Cancer thing. This week has been a long one, awaiting decisions. There was the whole Wednesday 'pre chemo' appointment with the real information about how the treatment would work and the hope of the fertility referral. This was followed by the bombshell on Thursday from the fertility clinic, that because I have 2 children I would be ineligible. I do understand, honestly I do, that there have to be rules. But I also think that every case should be considered on its individual basis. 10 weeks ago I thought I had years left to expand my family; I thought I would be able to go through the pleasure and enjoyment you get from watching a new little person develop its own personality and traits; I was looking forward to breastfeeding another baby and watching the contented look on its face as it unlatched and stayed asleep. Yeah, after the screaming & things with Imogen it has crossed my mind that I may have another 'demon' child on my hands, but I still wanted another & now that choice may have been taken away from me. I know that it is not guaranteed that the chemo will make me infertile but I have to work on the worst case scenario and that is that there will be no more little Hayllars.

3. The final thing that is helping to fuel the exhaustion is the constant repetition of everything. When I come out of an appointment it goes like this. Tony and I talk about the appointment and the way forward. Then I call my parents and go through the whole process again. Then I maybe call my sister or brother or little sister and go through the whole thing again. 
I might then blog or tweet about it to get it out of my system. It does help talking about it and by putting it on the Internet I hope that I can help people who are going through the same thing or anything similar can get some support or comfort from the fact that it can hit anyone. 
What I find draining is explaining different aspects of the treatment, or the process or procedures again and again. 
Now, I am so overwhelmed by the support that I am getting from people. The offers of help, childcare, taking me to appointments etc are overwhelming. I also do not mind explaining things over and over again, but it is draining and I want to curl up under a blanket and sleep until it is all over. So please do not stop asking about how I am, what is going to happen, how am I feeling but bear in mind I may have explained something countless times and if I seem bored or disinterested then that is why.