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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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

Monday, 28 November 2011

Another eventful weekend

Things are never quiet in my life. Just once I'd llke a nice restful weekend, where I can look after my kids and not rely on others. Ut not this one it would seem. Two points here.... 1. This post will be graphic, squeamish people may not want to read it 2. It is written from my hospital bed using my fancy new iPad! Things kicked off on Friday with more stomach cramps. These were different to the summers cramps and were more all over. Oh great I though, nice after weeks of loose motions courtesy of chemo now comes the blockages!! Phone call to the gp, emergency appointment and a prescription for suppositories and movicol followed with instructions that things should be moving over the weekend. So we went home and started operation 'get Ruth's bowels moving'. Suppositories went in & then came straight back out again, almost like there was some sort of force field preventing them working. I took the movicol, and although it tasted unpleasant it had no noticeable effect. That evening things went from bad to worse. Ate about three mouthfuls of tea before I bought it back up. That started to worry me. The gp had asked if I had been vommiting, and I started to wonder whether this was more than just a bit of constipation. I took another dose of movicol and thought that would be that. How wrong I was. Almost immediately it came back up. This pattern continued all night, I must have vomited about 6 or 8 times & I still hadn't been to the toilet, despite sitting on it for what felt like hours. I resolved over night to go to a&e in the morning because I knew this wasn't right. So he next morning we drove up to Redhill and found out what a magic word chemo is. No waiting around for me, straight to assessment. I explained about the vomitting and feeling blocked up, so they sent me for some X-rays to have a look at want was going on. This doctor didn't seem to concerned about the vommiting, which worried me as I was mow concerned about this. He decided to give me and enema and wait and see if it worked. They also gave me an IV drip and some senna, then sent me home with more senna, movicol and some painkillers and instructions to come back if things hadn't moved by Monday. Thanks at this point go to the lovely Sophie, who came all the way to East Surrey to collect me and took me home. I tried to have some tea, then sent Tony out to get the prescription. After a Strictly Come Dancing fix and a Merlin perv I bit the bullet and took some more movicol & the senna and vomited he movicol straight back up, and then spent the night vomitting what looked and smelt like senna tablets. Sunday was a repeat of Saturday, back to Redhill, back to assessment, back on fluids, back to x ray. They seemed to take the vomiting a lot more seriously and I got moved into surgical assessment unit. The consultant I saw said that they were concerned about a blockage caused by my summer adventures & scar tissue, so by were arranging a ct scan and I would need to have an NG tube and a catheter to monitor my outputs. Having an NG tube is a very unpleasant experience. There was a lot of vomitting and choking having a tube inserted through your nose and down the back of your throat. Watching what comes out is an interesting experience! There followed another ct scan, with a difference this time, the contrast leaked into my vein and so there was some pain and swelling in the back of my hand. The ct scan showed an obstruction in my small bowel linked to my scar tissue which needs clearing. So it looked like I was in for the long haul again. Finally at midnight I got moved onto the ward and things became explosive and remained explosive all night! So now I am sitting here in my hospital bed, with the NG tube disconnected, and am on free fluids, which I think means jelly, jelly, jelly!!

Tuesday, 22 November 2011

And so it goes on

We are now nearly a week into round three and I can definitely say that it doesn't get any easier. The worst thing is the sensitivity to cold. Just when you think you are getting used to it, you pick something up or go to hold a child's hand and it is too cold and the tingling is back. But we are keeping things normal too. Hard to believe, but Isaac will be starting school in September so we have been visiting. Tony and I are terrible for only looking at one option!! When we bought our first house we bought the first one we saw, when we were looking for a childminder we saw one (I emailed a few, but we saw Fran and loved her from the off!!) So far we have only been to our 'catchment' school but we both loved it and Isaac and Imogen both enjoyed having a look around and hearing about the different ways that they teach the children and the opportunities they will have. We do have two more that we need to visit but 'he'is in charge of arranging that. I am just shocked that there are not formal open days which the schools promote on their websites, and that there is not more support for parents. All we got was a letter telling us which our 'catchement' school is and to log onto the web site. The was nothing about how to contact the schools or even dates of open days to help you out. But with all the government cuts maybe they are making us work for it. There has been another development this week. On Wednesday I was given an injection to stop me ovulating and hopefully increase my chances of conceiving in the future. This is still a new treatment and there is no telling whether it will work or not, but in for a penny, in for a pound!! This injection has to be given every 4 weeks, the nurses have shown me how to do it myself, but the needle is quite large and it does scare me slightly. I am wondering whether the if nurse will be able to do it for me ;(

Monday, 14 November 2011

Keepin' it.....

People that know me, either 'in real life' or 'virtually' will know that I am not the type of person to sit back and let things pass me by!!

With this in mind I have had a week of 'keepin' it real!!'

Things started well, this appeared in the local paper on Wednesday. It took a while to come to fruition, but was worth it due to all the positive comments I have received and all the new people who have come to read this little old blog.

On Friday I bit the bullet and went along to my first yoga class in a long time at The Olive Tree Cancer Support Centre, which was so relaxing. I really started to feel normal and have even booked to go back next week despite it being 2 days after the start of round 3.

But the real highlight of the week was Saturday. 

You should by now have realised that I am a bit of a music junkie. 4 weeks after surgery I went to Beautiful Days. So, on my rest week off we went to Tunbridge Wells Forum, for an evening of organised choas courtesy of 3 Daft Monkeys, who released their single yesterday. Check it out on you tube.

It was a great evening. The Forum used to be a public toilet, but is a fantastic venue. Small, Intimate, but with plenty of space for dancing!! It was also great to finally meet some twitter friends, Jeff & Lukas. It was also great to see Rich back with 3 Daft Monkeys. 

Rich, Lukas, Athene & Tim - AKA 3 Daft Monkeys
If you haven't heard of them, check them out. Fantastic Fun and lots and lots of dancing!!!

We are off to Guildford this week for round 3, so I can see lots more cold sensitivity, sore hands and feet, sickness & loss of appetite in my future :(

Sunday, 6 November 2011

Something on Side Effects

I am rapidly coming to the conclusion that the side effects are far worse than anything I have been through so far. 

A new one hit me today - painful soles of feet. I had forgotten that this might happen until it hit me this morning that my feet shouldn't really hurt. 

After a quick trip to Sainsburys to invest in Milk, Bread, Oil and some insoles, which might or might not work. I decided to look at the interweb.

I have found the forum on Beating Bowel Cancer really helpful and was not disappointed this time either. 

It seems that this particular side effect is going to get worse and I might have some days when I am going to struggle to put weight on my feet. This will be .....mildly inconvenient to say the least with 2 active toddlers who need entertaining. 

However I have also found out that reflexology may be helpful with this particular side effect and the local Cancer support centre, The Olive Tree, offers reflexology to cancer patients. So now I have to find time to locate my Olive Tree information pack, find out when they offer relexology, call them, book it & crucially attend the session. But I will, I have already managed to book a Yoga session with them for next Friday & more importantly it allowed me to invest in a new yoga mat, because mine was looking a bit the worse for wear.

So what other side effects have their been?

Well the weirdest one is the sensitivity to cold. That kicks in as soon as I leave the hospital. When I am walking down the corridor some moisture on my lips makes them start to tingle. It gets worse. I can't go in the fridge, freezer, pick up cold clothes, use the wet wipes, take wet clothes out of the washing machine, touch the wet car etc etc etc. I thought that it wouldn't last too long, but I am only on cycle 2 of 8 and there is still a little bit of tingling going on every now and then. 

Then there are the 'conventional' side effects 

- Tiredness normally kicks in about 2-3 days after the treatment and is sheer exhaustion. I need to sit on the sofa and sleep, but 2 toddlers do make that difficult, but I can then go to bed and try and get a full nights sleep.
 - Nausea can be controlled by the multitude of pills I am given and by the 2nd weekend I am normally eating normally, although the quantities are smaller so I am loosing more weight. I know most women would be excited by the prospect of loosing weight, but I have never bothered about my weight. I think with my height I can kind of pull it off and if I am too slim I think I look ill rather than healthy.

There are other side effects too. I think my hair is starting to thin, because I am certainly fishing more out of the shower than I used too. This doesn't really bother me. 

I am also a lot more irritable than I used to be. I am not happy about this. I am snapping at the kids and don't want to do that. Its not their fault. I am hoping that the yoga and maybe a massage well help reduce my stress levels and henceforth reduce my irritability although I also think that a good nights sleep would probably have the same effect!!

I am sure I will have more to say on this subject as my treatment progresses and things get worse, but for now I am done!!