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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Saturday, 28 January 2012

Another finished project

Just thought I'd show you these.

From knitting for dummies, the simple socks. I love the ease of the pattern, but not the way its written.

Next up.... Finishing the cube cushion

Tuesday, 24 January 2012

Be loud, be clear

This week is all about raising awareness about bowel cancer. Reading other peoples blog posts on this made me wonder how long I have been living with this without knowing. This post is going to look back over the last few years and point out some of what I believe were indicators which I ignored, or put down to other things. Let's go back almost 2 years to when I gave birth to Imogen. Something wasn't right in my nether regions. I can vividly remember going to my 6 week postnatal check and telling the doctor I felt that everytme I opened my bowels it felt like I was passing a hedgehog. That is the best way to describe some of the pain I was in. Sometimes it would take a long time to come and the pain would be quite long lasting. One time on the way to Somerset to visit my family I went to the toilet at Fleet and was still in pain when we left the A303 and joined the A358. For those of you whose geography is not to good, that's about 2 hours of pain. Not excruciating, unbearable pain, but the kind of niggling pain that you are aware of. Going back to the 6 week postnatal check, the GP had a look (not something I enjoy,but something I have experienced a lot over the last 2 years) and diagnosed simple piles. The solution - lactulose. This is supposed to work by softening your stools making them easier to pass. It did, but there was still pain. So I went back to the GP. Saw a different GP this time. I remember him being impressed with Imogen's sucking blister as she was about 10-12 weeks old. He was also impressed I was still breast feeding. But that is a whole other story. He had a look (see not even 6 months in and 2 people have had a look!!). He diagnosed a rectal tear and pescribed a rectal ointment which gave me incredible headaches about 25 minutes after applying, not good when you have a not yet 2 year old and maybe 3 month old baby. The rectal appointment worked, but I had to use it for about 6 weeks so kept on going back for repeat prescriptions. Now I am wondering whether the intermittant bleeding might have been an early warning sign. To be frank here this probe has been around for the last two years and in the end I tarted to just accept that I would get a bit constipated, pass some very painful stools and then things would clear up. Over the remainder of 2010 things settled then flared up and the settled down again. Towards the end of 2010 or the start of 2011 I spoke to my little sister, who was training to be a nurse about that fact that sometimes I would be constipated in the morning, but have unbelievably loose bowels in the evening. At the time she saidnothing. Since then she has said that it did raise some red flags for her, but she was dealing with her own issues at the time. Following our car crash in February, I started too notice a few other health problems. 1. I was loosing weight. Not massive weight dropping off me but enough that some of my clothes were starting to get lose. Several people commented on it. I assumed it was down to the fact that I was walking a lot and eating healthily with 2 toddlers to encourage to eat. 2. I was getting dizy spells. Sometimes when I stood up too quickly which is common if your blood pssure is low. However these were not exclusive events. Sometimes I would almost black out when hanging the washing out, or standingat the hob. Another thing that was not ideal with 2 young children. 3. Stomach and bowel problem were getting worse. Not only was I having constipation and loose stools in the same day at least one every couple of weeks, but the stomach pains that went with them were immense. I would be doubled over Iain. A couple of people have asked how I knew they weren't period pains.lets leave it with as a woman you know. 4. Finally the breathlessness. Pushing a pushchair with two toddlers is hard enough work, but I remember taking the children to Wakehurst and being absolutely exhausted so much so that they fell asleep in the car and whe we got home I fell asleep in the car too. Towards the end of May things came to a head on camp with Anthony's scout troop. I was camping with two toddlers at the tool of a massive hill and had horrendous diarrhoea and vommitting. But still I put off going to the GP. Eventually after another 6 weeks I finally managed to get a child free day and a doctors appointment on the same day. The outstanding diagnosis - low blood pressure and come back for blood tests next week. I never made it to those blood tests, by then I had been admitted to hospital and was causing a lot of medical professionals a headache. So, in hindsight, what would I have done? It seems such a easy thing to say but I would have badgered my GP. I would have gone every month and made a fuss about the pain I was in, the discomfort I was experiencing and I would not have taken no for an answer. If I knew the what I know now about bowel cancer and complications I would have lived at my GP surgery until I got investigations and knew why things were so bad. What do I want you to do? If there is anything worrying you about your bowel habits please go to the GP. Yes it might be cancer, but it moght not and if it is you want it caught it early so you don't go through the uncertainty that it have over the last 6 months.

Sunday, 22 January 2012

No longer a wip

So in the effort to live up to the 'knitting' part of the bog title here is my latest finished object.

From simply knitting May 2011, pretty post, knitted in Sirdar Summer Stripes, shade 0311.
It is a little big for her at the moment, but drapes beautifully and the colour changes make it really interesting to look at.
Next up finishing the dk socks from 'knitting for dummies'

Thursday, 19 January 2012

Drawing a (PICC) line under it

Sorry about that, I just need to let you all know that I have my arm back. So, on Wednesday I drove across to Guildford because I knew I would not be having any 'proxy oxy' as defined on many bowel cancer forums. On speaking to my oncologist it spears that i was given a higher dose/regieme than is normally used. I should have questioned this but didn't think about it at the time. I think I will in next time, if I remember!! Then he said those amazing words 'i think that your PICC can come out' This means that tomorrow morning I can have a shower and not wrap my arm in cling film. Although this is a useful skill I have acquired over the last 5 months I can't see it being something I will advertise on my cv! If you think it sounds easy I urge you to try and wrap your own bicep in cling film one evening and let me know how it goes. So the PICC is out, the skin is very dry and shares in palmers cocoa butter are going to go sky high as this is the only thing that tackles my really dry skin. I have also started thinking about the direction of this blog once the chemo has finished. I hope you will still stay with me because I think I may start boring you with some of my craftyness. There will be pictures, rants about difficult patterns and hopefully some finishing of long term UFO (unfinished objects) and an update on my WIP (work in progress). I shall tell you about what I have OTN or OTH (on the needles or on the hooks) and show you my wishlists of projects. My first UFO I really want to finish are the bobble cushions I started when Imogen was 6 weeks old. I can't find a link at the moment but will make sure i do before long.

Wednesday, 11 January 2012

Welcome to 2012, some answers at last

Happy new year. 

Yeah, I know I am a bit late, but hey, better late than never!!!

Today I have finally got some 'closure' on the fiasco that was my pain relief after my surgery in July. 

I can't believe it has taken this long to sort out, but appears that despite me having been to East Surrey Hospital to have Imogen (she'll be 2 next month), twice for the abdominal pains in the summer & twice in November for the 'blockage' and telling them my phone number on each occassion they still had it incorrect. They finally thought to use my mobile number so I managed to give them the correct number & arrange an appointment with the head anaethitist and the senior pain nurse.

To summarise what happened after surgery, and to save you having to trawl the pages of this blog to find it. 

  • My epidural was turned off and then not turned back on for about 6 hours despite repeated requests for it to be turned on
  • When my PCA (patient controlled analgesia) ran out during the night. I was told that I couldn't have anymore and I would need to have paracetamol.
Well, I actually felt that I was being taken seriously now. 

I had three questions I wanted answered. Here they are, along with the answers I was given

  1. Why was the epidural turned off? It turns out that epidurals move up the body and if they get too high, they can cause problems with breathing. My epidural had moved too high and so it had to be turned off. However this was not explained at the time and once it was turned off and the nurse walked away the call button was not left in my reach so I was unable to attract the nurses attention. 
  2. Why did it take so long for my epidural to be turned back on? The combination of pain relief that I had, eg PCA and epidural, is not common and so there is a high probability that the staff did not realise how much pain I was in. Also 'out of hours' there are only three anaethetists on duty - 1 for emergencies, 1 on the labour ward & 1 for theatre. If the theatrical anaethetist was busy then it would have taken time for them to come to me. I can accept this. But once they had started to contact them why did no one communicate to me that they were trying to contact them, rather than leaving me waiting and wondering.
  3. Why was I not given more morphine when I needed it? I was 'written up' for more morphine so the only explanation given was that the junior doctor who was on duty was worried about giving me too many 'opiates'
I also talked about the lack of communication during that first evening and how I felt that sometimes the staff thought that I was exaggerating things or that because I was younger I would be able to cope rather than treating me how they would treat a more mature person. However I also need to remember that there would have been people in the surgical stepdown unit that may have had breathing difficulties or other issues that were potentially more important than my pain. 

However because I was admitted as an emergency and already suffering pain my threshold would have been lowered and my pain receptors already firing. This meant that I needed a higher level of pain relief, hence the combination of epidural & PCA. The anaethetist and the pain nurse also agreed that more training was needed for the nurses on this type of situation. 

The experience has made me more nervous about trusting healthcare professionals. I used to trust what they said regardless. Now I ask more questions and do not take everything at face value. Despite this I still have a huge amount of respect for what you do and know that I could never do it.

One of the things I have learnt over the last 6 months is that there are stars in the health service but there are also things that can be improved. A one size fits all approach does not always fit. I always feel like an anomally. I always feel too young when I am on any ward and sometimes feel rushed or ignored by the doctors or nurses. 

I have, therefore, resolved that if I get readmitted to hospital for any reason I will ask questions and questions and questions. I actually don't care if it annoys people. I am an intelligent young women and also a customer and I deserve to be taken seriously and have my questions answered.