well I thought I would try it…lol

I have finally relented to the new blog format… you have me… I cant go through life without my usual rants!! so here goes.

Christmas was quiet, presents were few but life is good!! I have a plan for the new year to make the rotting apple in my brain go away and give me a chance to move forward so I am getting together a small committee of cancer patients from Haywood House Day care centre and we are going to change the way patients at the City Hospital in Nottingham are given the news they have terminal cancer and make sure that the staff at the hospital do it in a prepared way.  Its become apparent to me talking to others that I am not the only one who has “slipped through the cracks” when it comes to being treated in a humane way so if we can change the way this news is delivered to patients in our own hospital we could create a proforma for all hospitals in the future. I feel so strongly that patients should not be left for weeks with this terrifying news with nowhere at hand or no-one at hand to help them in the first few weeks.  It is not good enough to just leave them adrift looking for their own information. So.. this is my plan..I know some hospitals already do this preparation and have a good standard of communication but they are few and far between and I feel it should be of a good standard in EVERY hospital!!!.  But we will start small with our own hospital first then move on.

Let me know if you have any good ideas to help build a template for a standard document that can be the starting point for the way patients should be told of their limited future. If anyone knows how a cancer patient feels they should be helped through this difficult period in their illness it is patients who have already had to deal with it. I personally cannot come to terms with how I was treated and I feel the only way forward for me is to change the system to incorporate more communication tools and to be handled with a little more compassion.

Posted under Lizzyd57

This post was written by Lizzyd57 on December 27, 2008

Tags:

The term the NHS use is – Breaking Bad News

 

 

Try Googling the above Lizzy and you will get loads of info. Also there is a policy called the Liverpool Care Pathway which is an end of life policy and I think gives some guidance. As always  with the NHS tere are lots of policies about everything  but getting them translated into actions is another thing.

 

This is a good site with an outline of what is being taught and what is MEANT to be happening when patients are given bad news…. I leave the expletives to you – we all know this is not happening everywhere – go get ‘em Lizzy.  

 

http://www.breakingbadnews.co.uk/

site made possible by Pfizer  ( coincidentally manufacturers of Sutent)

Health Professionals find it difficult to break bad news since it means telling an individual something that they do not wish to hear. They may have had little opportunity to learn the skills required and may feel ill prepared to deal with the patient’s reactions, which can include anger, guilt, and blame of the bearer of the news

 

 

Loads more content here Lizzy……………………..

 

http://www.connected.nhs.uk/index.php?option=com_content&view=article&id=9&Itemid=14

 

Hope this helps Lizzy. In case you are wondering where all this comes from….. My Cancer Group down in Cornwall has a couple of patients who sit on an end of life/breaking bad news Group so they  tell us what is going on

 

 You take care Lizzy, Love  from  Rose W xx

Posted under Rose Woodward

This post was written by Rose Woodward on December 27, 2008

Whoops….

Well , I’m not sure what happened to the bit of  explanation  I wrote to go with my Porthtowan photo, but wherever it is – it isn’t here on the page with the photo !! Must try harder.

What I tried to say when I put the photo up was that this morning’s sky should never have happened. My little house looks out over the beach facing north west – ergo – the sunrises in the East so why did Mother Nature decide to put the sunrise colours in the sunset place? Why did we get the most wonderful sunrise colours in the early morning at 8 am  in the north west??  My logic tells me it  is something to do with refracted light or some such explanation , but I much prefer the romantic explanation; that it’s a new way of looking at things?? start of a new year and all that!

I was so pleased to see Lizzy on the blog this morning, just when I had decided that I must try to do it more often – because there is so much going on and sometimes you just want to get it off your chest. 

The new support website should be going live soon – I hope people will find it fills a hole – everyone says that they want to get together and  help other patients – again such co-incidence that Lizzy should also say this… Jane  has also said it in her blog – so when the site goes live it will be great to see people able to find others who live close by to find friendship and  just to be able to talk freely to someone else who understands the never-ending roller coaster that you are on once you have been diagnosed with KC.

I am so fortunate, the world could have been so different had it not been for one super conscientious radiographer who decided to look a little more closely at a scan. What made her look at an area that wasn’t even being scanned? I do not know, but I am sure glad she did .  and here I am 5 years later, minus a kidney, adrenals and a rib or two  but still very much alive and kicking, some night say too much kicking !!

I’m  being bullied by the  dogs now  so it’s off up the cliffs for a dog walk now – its very cold here – time to break out the ear muffs!

Rose W

Posted under Rose Woodward

This post was written by Rose Woodward on December 27, 2008

Christmas at Porthtowan, Cornwall

early morning - this is what I woke up to this morning !!!

early morning - this is what I woke up to this morning !!!

Posted under Rose Woodward

This post was written by Rose Woodward on December 27, 2008

To the Future!

I am now almost 8 weeks post surgery, and doing really well I think. I am planning on going back to work in the New Year, as no one thinks it makes sense to go back just before the holiday.

A few weeks ago I went to see my Urologist - Dr Lawen, and he was finally able to give me my pathology results.. the tumour was 3.5cm, a T1, and margins were all clear, the tumour itself was at stage 2, but it is now out, so I like to think that it is irrelevant.

We are taking life one day at a time, trying to now return to focus on the things we were thinking about before all this happened.. like decorating our other house. Last Wednesday we went there to strip wall paper and some painting.. but then the snow really started coming down, and I don’t think the ploughs were prepared, so we headed back to town following a very slow truck.. which was the safest bet. I wasn’t going to be one of the lunatics that were overtaking in the storm into blinding snow.

I had read that keeping a journal was a useful/helpful thing to do, so my husband Jerry bought me one, and I have started. The aim is not to write in it every day, but to just note important things in there.

I am now waiting for my scan in January that will take another look at the lesion on the Liver, and not really thinking about it much, as I don’t have a date yet. I am also trying the method where you allow yourself to only think about the (Kidney) Cancer for a set period every day, and I find that some days I don’t think about it intentionally, it is usually something triggers to make me think of it.

I want to now focus on getting on with my life, and that this was just something that happened and it is now over.

Having said that, I do feel grateful that I had good news, and feel that I must look to help others in some way.

Posted under Gemma A S.

This post was written by Gemma A.S. on December 21, 2008

Something new just around the corner…….

Watch this space next week, something new for everyone!!

Posted under Andy Thomas, Events, General

This post was written by AndyThomas on December 21, 2008