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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Wednesday 21 November 2012

What else can I do?

So you know a little bit about my volunteering experience as a Guide Leader, Rainbow Leader and all the passion I have for that. 

But that's only a few hours a week, so with only 2 children, and 22 weeks minimum to go until number 3 arrives I need a bit more of a challenge.

In July 2011 when I was taken into hospital & told that I had cancer one of my major worries (which in hindsight was rather silly) was that I wouldn't see Isaac start or graduate from preschool (I hadn't even thought about real school).

The preschool were fantastic in supporting Isaac and I through that horrible time of chemotherapy & numerous appointments so I knew I wanted to give something back.

Our preschool is not local government funded, it is not centrally funded, It is funded by the  generosity of the parents and the tireless efforts of the volunteer committee to raise awareness and money.

So, in April once I knew I was cancer free, I spoke to the staff and offered my services. September & the new term arrived and I was being introduced to all the new parents as the chair of the preschool committee. 

I am in a slightly strange position in that Imogen is not due to attend the preschool until April 2013 (3/4 weeks before bump is due to make an arrival, well timed Ruth!!) so I am not interacting and meeting the parents everyday and am not an ever present force. But I am passionate about the preschool & raising as much money as I can for the benefit not just of my children, but all the children who will go on to attend the preschool in the future. 

Something that has been taking up a lot of my time recently is recruitment. The manager of the preschool has recently decided that the role is not what they want and has asked for the opportunity to step down. As a committee we agreed and so I have been thrown into a whole new world of recruitment.

I do have some experience in this matter. I have dealt with staff & staffing issues before. You can't manage a bank, even a tiny branch like I did, without having to recruit staff & interview them.

But this was a whole new kettle of fish. I have, in the last 6 weeks,

  • Written a job advertisement 
  • Negotiated with the local paper a reduced rate for placing the advertisement
  • Placed an advertisement with the job centre
  • Written a candidate specification & job description
  • Read, reread & analysed CV's
  • Written interview questions
  • Sworn at google a lot!!!
Alongside this I have still been 'mummy' on call 24/7, I have still been running my Rainbow unit, and juggling the multitude of hospital, Dr, Midwife and other appointments that go with being pregnant, being in remission from cancer and having 2 children who have both had chicken pox.

Now I am coming to the conclusion of this process, I am about to start the interview process. I could not have got here without the insight of the committee & a certain person with a lot of experience in this matter. So thank you.

Yes, its hard work & it doesn't always fit in around family life. I was hoping to get lots of the work done in the evenings. Unfortunately a lot of the companies that I have had to deal with do not work evenings. This has led to some stress on my part as I tried to negotiate a toddler, school run and numerous phone calls.

Do I think I have taken on too much? No absolutely not. Not only am I giving back to the community, but I am gaining transferable skills that when I come to resume my job hunt & enter the world of work I can say I haven't just stayed at home. Look at what I have done!!

Monday 19 November 2012

Volunteering is hard work

Don't get me wrong, I love having the opportunity to help others and giving people other opportunities but sometimes it is incredibly draining.

I have the privilege of volunteering for some amazing organisations and really helping other people but also gaining invaluable skills for when I am eventually in the position to return to the work force.

Lets tell you about what I do...

1. Girlguiding UK. 
I have been involved in Guiding (Girl Guides, when I joined) since I pulled on a brown dress, at age 7, not dissimilar to this one here, and have loved it ever since. 
I loved the Pack Holidays to random church halls, often with not much to do locally but lots of washing up, cooking & cleaning. 
I loved camping even when it was raining and muddy and everything I had taken with me was wet. 
I love the opportunities it has given me from the opportunity to discover I love climbing, but hate abseiling, the chance to go to Poland not once, but twice to the chance to really find out things about myself as a person.
The international camps, the chance to cook wonderful food on open wood fires and discover that there is no temperature control and some food that you would not eat at home tastes absolutely wonderful when eaten outdoors with slight (read burnt) charring.
Who am I to deny these fantastic opportunities to a new generation of girls & inspire a new generation to reach their full potential?
So I hit 18, gained my warrant and promptly left to go to university where it was difficult to fit in the regular weekly meetings, so I joined SSAGO and had some fun. 
Then I graduated and started working - shift work is not conclusive to Guiding, but looking back now I realise that just working is not enough, I needed another challenge.
When we finally moved back to Sussex I could not wait to get stuck in. A friend needed an Assistant Guider and that was it, I was back in. It was great to get back into giving back. I had a chance to walk it the Lord Mayors Show, visit Our Chalet in Switzerland & attend my first Catholic Church Service. 
When I fell pregnant with Isaac I started looking for a unit closer to home and found a fantastic unit where I made some fantastic friends and created centenary memories not just for me, but for Isaac & Imogen as well. 

Our family on the 2nd Crawley Down Guides Centenary Trip to London, July 2010. Riding on the London Eye

When I had Imogen, I found that helping run a Guide Unit was not conclusive to family life, especially when I had a husband who works night shift. Eventually after much sole searching I decided I needed an option that fitted with family life. 
After a quick meeting with some NCT friends it became very apparent that there was a need for Rainbow Units in Crawley and several emails later I appeared to have agreed to help set one up. Which we did. 
That unit is still going strong and has helped rejuvenate a fellow guider. In the meantime I became aware of a unit that was going to close. This was a far more local unit to me & the one that I probably would have wanted Imogen to attend. I had a couple of meetings with the guider there and was all set to take it over & then BOOM Bowel Cancer struck (see it creeps in everywhere) & I had to take a back seat. I could not have run a demanding rainbow unit and dealt with all I have. ,
But when chemo ended in April 2012 I was raring to go. So I have joined a new unit (the old one had to close unfortunately) and already met some lovely people and done some incredible things. 
So what is involved in volunteering for Girlguiding UK? 
Honestly as much or as little as you want.
I probably put in a couple of hours a week plus an hour long meeting. But its not work, it's browsing sites like Pinterest, iChild & activity village for ideas & crafts that might work. It's being able to delegate the paperwork (now mostly on-line) to someone else ;)
And it is about giving those girls the time of their life and giving them the spark that I was given so many years ago.

That was a lot longer than I anticipated, so I shall tell you about my other work later.

If in the meantime you are interested in finding out more about Girlguiding UK or volunteering & inspiring a new generation of young people, why not visit The Girlguiding UK website

Wednesday 7 November 2012

Ignorance can be Lethal

Here at Knitting Novice Headquarters we have spent almost the last 4 weeks dealing with a common childhood illness that can be fatal to some.

We had the dreaded chicken pox. 

I was lucky. Isaac had so few spots I wasn't sure it was chicken pox and got Tony to take him to the GP to confirm. He didn't complain of being itchy, he hadn't been ill beforehand, he wasn't ill with it. Exactly two weeks after Isaac came out in spots, Imogen did the same. She had (I suppose she still has) a lot more spots than Isaac, far more on her face and in her hair. This made brushing her hair which she hates at the best of times a trial (& I gave up, I will master brushing her hair, but that is a battle for another day). When asked though she wasn't itchy either, she wasn't ill beforehand and wasn't ill with it either. 

So all we did was stayed at home - for 6 days with Isaac & 5 for Imogen. I did have to take Imogen to Horsham for the day as our next door neighbours have the builders in & she couldn't hear Peppa Pig due to the Jackhammering (?)

I was shocked though by the attitudes of some people who didn't understand why we stayed in for so long. I had various comments:

'Everyone has to get chicken pox, it doesn't hurt to take them out'
'They have to touch him/her to get it'
'Chicken Pox isn't dangerous'

Well, actually all of these are false.

Here is the NHS Choices page on chicken pox.

The reason I am so cross about this misinformation is that this time last year if I had come into contact with someone with chicken pox (which I very nearly did) I could have ended up back in hospital. One of the most serious complications with chicken pox in people with suppressed immunity is meningitis. Yep, if I had been exposed to chicken pox while undergoing chemo I could have developed meningitis. I know it is probably a very low risk, but really would you want to take that risk? 

So, you can tell if someone is pregnant and you know that chicken pox is dangerous to pregnant women. But you can't tell if someone is having chemo or has a weakened immune system for any other reason.

So I urge you, if your child has chicken pox, please keep them isolated until they are all scabbed or crusted over. You can't tell if the person in front of you in the queue at Sainsburys or Costa is having chemo and has a weakened immune system. But your failure to follow the HPA guidelines on keeping your child isolated for 5 days could result in someone's mum or dad or child being admitted to hospital with something much more serious because 'chicken pox is a common childhood illness'

Thank You

Friday 2 November 2012

Amazing

Lets take a second to think about all that I have put my body through in the last 18 months.

Before I even knew I had cancer there was the 'anaemia' & 'low blood pressure'
Then there was the Cancer, and not just cancer, lets not forget I had a stage 4 tumour. The only saving grace was that it hadn't spread and was confined to my bowel. 
There was surgery involving an anaesthetist unable to find a vein to inject the anaesthetic and having a central line put in while concious (something I never want to go through again).
Then there was the chemo - only 4 rounds of oxaliplatin as my body just couldn't take it and 8 lots of capcecitabine. It all took its toll.

And now the most amazing thing has happened. I thought that this would never happen again.

I'm currently 15 weeks pregnant with my third child. Against all odds I have managed to not only beat bowel cancer, suffer chemo and all the side effects but about 4 months after getting the all clear my body felt sufficiently healthy & strong to go about the incredibleness that is creating another life. 

So to quote an incredibly annoying cbeebies programme which made me incredibly cross when I was going through hell last year

Brilliant Bodies