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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Thursday, 17 April 2014

School admissions

Yep, it's that time if year when nervous parents all over the country are finding out whether their children gave got into reception at their preferred school.
Some are disappointed as they did not get their preferred or catchment schools, some have the terrifying prospect of 2 school runs for 2 different children.
Some like me, still don't know. All West Sussex county council can tell me is 'check your junk folder' or 'wait til 3pm'.

I am a digital junkie, I was checking my junk folder every hour with my normal email and frankly waiting til 3pm is not acceptable. Surely with her name and date of birth, plus first preference, they can check whether the email was sent & whether I made a typo in my email address. But no, waiting is my option. 

And what about the fact that I have to do this again next year for Isaacs junior school place, & in 2017/18 for Imogen's junior school place & Hope's reception place. 

And then again for senior school, then there will be UCAS applications, job applications. It's a never ending cycle of applying online or paper. When will the process improve?

Thursday, 10 April 2014

a quick update

This is just a quick update about chemo and treatment generally.

My FB and twitter followers will be aware that round 4 was really quite rough. I started vomiting while the oxaliplatin was being infused and managed to fill 4 bowls (thats about 4 litres) and kept vomiting like the other three times. 

What was different this time was despite taking all the anti nausea medication, the nausea did not go away. I have felt like death warmed up for the last two weeks. I was sick a couple of times as well. Proper gut wrenching vomit, which gave me back spasms and left me in an immense amount of pain as well as wondering what the hell was going on.

It got to the point where I was dreading yesterday as I didn't think I could put my body through another two cycles. 

To cut to the point. I didn't have too. I still spent the same amount of time at St Lukes yesterday, but I was deemed to ill to have another bout of chemo and so yet again it comes to an end before the natural conclusion. 

We are off to Somerset shortly and I will update further on why I was not able to have chemo yesterday.

Sunday, 23 March 2014

5 year olds

It must be hard being 5 1/2.

You are no longer the youngest in the school, but doing proper learning, no more of this EYFS (early years foundation stage) learning through play. But reading, writing, science, literacy, numeracy & a whole host of other topics are covered over the typical week at school. 

If you are my 5 year old then there is another pressure on you. You aren't the baby and are expected to set an example to your younger siblings and behave in a way that proves one day you will be a responsible adult. You are learning the behaviours that are expected by society all the while battling the pressures placed on you by school (Micheal Gove has a lot to answer for here), your parents and your peers.

My 5 year old has another massive stress placed upon him. He knos his mummy is ill, his mummy has been ill since he was 3 years old. In all honesty he probably cannot remember what it was like to have a mummy who isn't ill. I know adults who are struggling to cope with my cancer diagnosis and the seriousness of it. We have never hid anything from the children so they too know how serious it is. At 5 years old this is mind blowing stuff. 

The way Isaac copes is outstanding. He is always smiling, and laughing. He has his moments. The big one at the moment is lying. Only little lies, for example 'did you sit on the windowsill and squash the coriander', 'No, mummy'. I know he did, I saw him do it, but he says he didn't, or he says Imogen did it. I cannot tell you how sad this makes me. 

Yesterday's squashed Corriander plant (how middle class does that sound!!!) was the final straw. I told him I knew he was lying, I had seen him do it and it made me so sad that he wouldn't tell me the truth. Then I couldn't help myself and I cried. I told him that he was making me so sad I was crying. Emotional blackmail, probably, but weeks upon weeks of 'Imogen did it', 'Hope did it,' or ' I didn't do it' had broken me. 

I'm not proud of the way I cried in front of him, nor of the way I lost my temper with him and sent him to his bedroom for 30 minutes. But it seems to have worked. 

This morning a light up balloon which Imogen got for her birthday was popped. When asked who did it (& I knew it was Isaac, Imogen loves balloons and gets distraught when they pop or deflate) Isaac owned up. 'It was me mummy, I'm sorry.' 

I gave him a hug and told him how proud I was of him for not lying and for owning up. 

Then we went to MacDonalds for breakfast as a treat.

Don't forget my children are trying to raise awareness of Bowel Cancer, by posting #bellyselfies, please get involved and post your children's #bellyselfies on social media too.

Baby Hopes Belly selfie
Isaac and Imogen's belly selfies
My belly selfie.

Thursday, 13 March 2014

Peripheral Neurophathy

Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.

When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital. 

The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.

So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold. 

Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.

Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.

I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it. 

I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.

Even the duvet and pillows being cold causes me problems and tingling.

Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold. 

I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing. 

Peripheral Neuropathy - Making life difficult for cancer patients

Tuesday, 4 March 2014

Hypocrisy

Hi, my names Ruth & I am a hypocrite.

As I sit here giving Hope her lunch of nice healthy carrot sticks, cucumber pieces, water, cheese, ham and fruit I realise that yet again cancer has given me something to beat myself up with.

I'd love to be tucking into a healthy salad with plenty of greens and veggies. However if I want to have a peaceful afternoon not in pain I will settle for some supernoodles, or a pot noodle or some other piece of processed food.

These are the foods that don't mess me up and mean I can function on something like a normal level. 

But there are some many sticks as a parent to beat yourself up with and one thing I always thought I would abide by was the saying that I wouldn't make my kids eat something if I wasn't going to. 

Nothing makes me crosser than people that make their child eat something but won't try it themselves. There are some exceptions to this rule. I don't like olives, I occassionally try an olive but I still don't like them, but I would not force my child to eat one either. 

However the number of children I have come across who do not have these boundaries enforced is insane. Children on scout camp who do not like potato wedges, but will happily eat chips. I don't like chicken casserole, but will eat chicken nuggets. 

So I am now a hypocrite. All too soon I will sit at the dining room table with my children while they tuck into a roast dinner with all the trimmings and I will try and force some down, knowing that it will wreck havoc on my digestive system and I'd far rather have a bowl of BBQ  beef supernoodles, sweetcorn relish and baked beans, followed by a muller greek style corner cherry yogurt (no other flavour will do at the moment).