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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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

For more inane ramblings, follow me on twitter

To see my crafty loves follow me on Pinterest
Follow Me on Pinterest

Why not like my new Facebook page
http://www.facebook.com/thepoohstickqueen" data-layout="standard" data-action="like" data-show-faces="true" data-share="true">

Or follow my photographic craziness on instragram

Sunday, 18 May 2014

Silent Sunday

A months supply of medication!!

Friday, 16 May 2014

some random musings

Just over  a year ago I wrote a post about how much I hated being pregnant, but how I loved how my body bounced back and how much breastfeeding helped with the weight loss. I had found that after each of my children I had dropped a dress size without really doing much different, except running around after more and more children. I even speculated as to how many I would have to have to be down to a size 10.
How times change. I am now that fabled size 8-10 and have been since October. I hate it. I still look in the mirror and hate what I see. I look ill and drawn. I look tired and no amount of amazing make up or BB cream is going to improve that, especially when my body has me up and down several times a night and regularly waking in pain at 5.30am as all my medication starts to wear off.
Add in the 3 children under 6, who wake in the night because they are ill or who don’t go to sleep because they have had a nap during the day at the wrong time and I am permanently exhausted. 
Of course, I don’t show it all. I try and put a confident, friendly brave face on it but inside I am falling apart. 
The palliative care I am receiving is excellent, but while sometimes the pain relief is adequate sometimes it just isn’t enough. I see the consultants and have to be honest that sometimes I feel the pain relief is adequate and sometimes i am swearing and squirming in pain. If you took one look at me you probably wouldn’t guess it though.
At the moment though, as the weather warms up I am waiting for someone to congratulate me. 
Why? You might ask. Well I told you that my tumour hadn’t responded to treatment and hadn’t shrunk. The truth is, its not just bloating, but I look as though i am 5 months pregnant at the moment and I can only imagine that it is going to get bigger and bigger. 
Now that I have had time to come to terms with the fact that my tumour is growing I have been thinking about what the options are. I wonder whether surgery to remove part of the tumour might now be an option as it makes my stomach so tender and uncomfortable. 
I struggle with lifting my children and cuddling them. rolling over in bed can be painful and no matter how many wheat bags or heat packs I use, how many paracetamol I take I cannot seem to manage the pain. What i need is liquid paracetamol which works incredibly fast and well. but no one seems to believe me, when I have been in hospital i have had to fight for the liquid stuff as it works so much better for me than capsules or tablets. 

Anyway back to the matter at hand. I am slowly coming to terms with what has happened over the last week. But make no mistake I am still coming to terms with this momentous moment. So, i’m sorry if having a coffee or lunch is not a priority for me right now. I need to focus on my health and managing expectations over the next few months. 

Thursday, 8 May 2014

Becoming an animal

Things are not looking up.

What I thought was bloating is not bloating, but my tumour. Chemo has not worked, the tumour has grown and we can now see in my stomach is the cancer getting bigger. 

This means options are becoming more limited.

There is one more form of chemotherapy that my oncologist thinks I might be suitable for.  But here is the kicker, its not commonaly prescribed within the NHS and so my oncologist has to apply for funding for this treatment, which may be refused and so I couldn't have the treatment, or I would become one of those people you see on the local or national news, appealing to the NHS trust to try and obtain funding. 

Once that has been tried and seen if it works then I become a human guinea pig. This means phase one clinical trials. A phase one trial is the next stage once it has been through, I suppose, animal testing. Again my oncologist is hopeful that he has some colleagues locally (Guildford) that are conducting trials at the moment. But there is also the option to have treatment at the Royal Marsden. 

This also looks like it might entail some stays in hospital so that they can monitor the side effects and after effects of the treatments more effectively.

So 7 months down the line we are heading towards the end. However brutal that sounds its the honest truth. I have put my body through hell and back. I have spent 6 months having chemotherapy to no avail. 

Nothing has worked. How do I feel about that. How would you feel? How would you feel knowing that you had a time limit left? 

All I can do is live life to the full at the moment. 

So we have our trip to Legoland planned for half term and some more exciting opportunities coming up, all health dependant. 

And in the meantime I came across this BBC article. It makes me feel better knowing that if I get accepted onto a trial then although it might not save my life, hopefully it will save someone else's life.

Tuesday, 6 May 2014

May the Fourth be with you and Revenge of the Fifth

Sorry, I don't pun very often but I couldn't resist this after seeing it all over twitter today. 
Also sorry for not posting much recently. I have been very caught up in my own little world and feeing kinda sorry for myself and just doing some reflecting on things.
So much has happened over the last month that I find myself wondering where the time has come from and equally where the time has gone. 

So round 5 & 6 didn't happen. Basically my bowel was on the verge of becoming obstructed again and so they deemed it prudent not to introduce any more drugs into my system and add to the pressures exerted on my digestive system. So once again I have not completed a course of chemotherapy. 

I can't decide whether this is a good thing or a bad thing. I have had some chemo which will have had some effect on the tumours, we hope, but I have not had the recommended amounts and so the effect on the tumour won't be as great or miraculous as should be expected.

It is bitter sweet, knowing that my body is failing, but can tolerate some treatment but not enough to complete the course.

But I cannot dwell on that, I had more important things to plan for... a certain young lady turned 1.

Yep, on the Thursday following non - chemo we headed to the West Country for some much needed rest, relaxation & family time. 

L-R Jamie, Sharon, Phil, Becci, Mum, Dad, Me holding Hope, Tony, Jo
Front Row Isaac, Hattie, Imogen, Alfie

We had a lovely time and managed to get this lovely family shot in my parents garden. In the afternoon we took Hope to her first Taunton Scout & Guide Gang Show, and their 25th show. This brings back all sorts of memories for me. I was in the first Gang Show in 1989, I've been an Edwardian Lady, an Alien and all sorts of things in between. I was presented with my Baden Powell trefoil by Betty Clay (Lord Robert Baden Powells daughter) on the opening night in 1994, setting a trend that had been followed by a range of guides and young leaders through the years. 

On our return back to Crawley it was time to start preparing for our next big adventure & one of our once in a lifetime events. It was time to think about Thomasland.

I think Thomasland deserves a post of its own, so i'll save that for later and just tease you with a photo....

Following Thomasland there was my Mummy & Isaac day. We went to Brighton and had a great time in the sea life centre, where Isaac overcame his fear and touched the starfish in the rock pool. We also took a trip on the Brighton Wheel and had some lovely chips on the beach while Isaac played and collected stones for our garden.

On the wheel

Looking at the turtles
Through the rest of the time I have been back and forward to Guildford to see the palliative care pain consultants, eventually got my 'emergency' CT scan, 3 weeks after it was requested!!!

And very soon I shall be off to see my oncologist to determine what happens next. Keep your eyes peeled for that revelation.