Magda,

I am very lucky indeed. I have a lovely wife who is very supportive. I also have two excellent adult daughters with whom I can and do discuss everything - including my suicidal feelings when I was in hospital. They are amazing and very mature in their reactions and support. Fortunately they are very different and help in different ways. In addition to that I have an excellent brother and sister in-law as well as a number of incredibly helpful friends - including one doctor. Apart from that I also have counselling on the NHS - and that is also very helpful. So all in all I am very fortunate and am far from alone.

You need to hang on in there and talk about your worst fears to Gregory and all the family. For you, your worst fear will most probably be that of being left alone. You need to talk about that to those that you care about - including Gregory. Have the strength to discuss everything. What will surprise you is that what you say will not surprise anyone. We are all good at denial and of maintaining that 'conspiracy of silence' in the belief that somehow it saves ourselves and others from the emotional pain. It doesn't do anything of the sort. Instead it just makes us think that our emotions are unusual when they are commonplace and need to be shared with others who understand. If you don't share those feelings, others cannot help.

Take care of yourself - Gregory is already being cared for so it is you that need to care for your own well being - both physical and emotional well being - and only you can make the first move. Don't wait to take those first steps as time is never with us and we never know how long we have the luxury of waiting. There is always a good time and it is usually now.

Patrick

Magda,

Your consultant oncologist truly does know all about Cetuximab. He/she is not living in a bubble. It is NOT a new drug and the usage protocols for it are well established. The Scots are a mean lot. They receive a disproportionate amount of OUR taxes and then just hand it our to students so they don't have to pay for tuition fees.

Here's the link to the NICE website for Cetuximab:

http://guidance.nice.org.uk/TA176

From that link, below is their Word document on the subject. I am pasting the whole thing here - sorry about the length.

Hope it helps,

Patrick

This leaflet is about when cetuximab should be used to treat people with metastatic colorectal cancer in the NHS in England and Wales. It explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with metastatic colorectal cancer but it may also be useful for their families or carers or for anyone with an interest in the condition.

It does not describe metastatic colorectal cancer or the treatments in detail - a member of your healthcare team should discuss these with you. You can get more information from the organisations listed on page 4.

Metastatic colorectal cancer

Colorectal cancer is cancer that affects parts of the bowel called the colon or rectum. In metastatic colorectal cancer, the cancer has spread to other parts of the body, such as the bones, liver or brain.

Cetuximab

Cetuximab is a drug that can be used in chemotherapy for people with colorectal cancer. It can be given in combination with other drugs, called 5-fluorouracil, folinic acid and oxaliplatin or irinotecan.

More information

The organisations below can provide more information and support for people with metastatic colorectal cancer. NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.

• Beating Bowel Cancer, 0845 071 9300
  www.beatingbowelcancer.org

·         Bowel Cancer UK, 0800 840 3540
www.bowelcanceruk.org.uk

·         Macmillan Cancer Support, 0808 808 2020
www.macmillan.org.uk

NHS Choices (www.nhs.uk) may be a good place to find out more. Your local patient advice and liaison service (usually known as 'PALS') may be able to give you more information and support.

National Institute for Health and Clinical Excellence
MidCity Place, 71 High Holborn, London, WC1V 6NA; www.nice.org.uk

ISBN 978-1-84936-067-8
N1980 1k 1P Aug 09

© National Institute for Health and Clinical Excellence, 2009. All rights reserved. This material may be freely reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the express written permission of NICE.

Magda,

It has failed to paste correctly so I'm afraid you'll need to follow the link I gave to Cetuximab on the NICE website.

Patrick

Hi Magda, Very pleased to hear your news and hope the chemo gets started soon. Scotland is under the

Scottish Intercollegiate Guidelines Network

Elliot House 8-10 Hillside Cres

Edinburgh

Eh7 5EA

Presently the guidelines for colorectal caner are being updated and recommendations due winter11. Given your husband's cancer does not have  the same guidelines then there does seem a case to be made. I suspect the "not knowing" your oncologist referred to was because they are waiting the outcome of the review.

D.G Health and Chief Exec nhs Scotland

Health Quality and Safety Floor G.Er

St Andrews House

Regent Road

Edinburgh

Eh1 3dg

You can get the current status of any drug at the above address.

Hope you have experienced  "a cup of kindness" in Scotland and wishing you both much success in getting the required chemo.

Kind regards Court

Hi all!  Patrick and Magda, I was so happy to hear that you both have wonderful support from family and very special friends.  My family and I often make the comment that we don't know how people cope without that support.  Of course here that is when you would call in the invaluable support of 'The Cancer Society' I think the same as your Macmillan cancer support.  Court - how is your Mum doing on her treatment?  I hope keeping that building team well feed at her house!  Ann hope Nev is still going well, he really is an inspiration.  Judy, we haven't heard from yon on hear for a while?  I hope things are going OK.  And Jash, hows Alex going?  And all others on here my love and support goes to all!  Keep trucking on!   XOX  - Jules  

Hi all, Hope you are all enjoying yet another weekend. All is well so far here. Chemo no two has taken place so we are now a third of the way through. I have a horrible cold so having to stay away for a few days. My mum experienced a bit of pain on her rest week so we have a better plan in place for the next time.

Jules ,  I will be thinking of you all on wed. I hope your dad is still enjoying his recovery.

Thinking of you all,

Love court

hi all.  I hope you are all well.  We have had the most hottest day here today in NZ, just to make you from the UK jealous!Hey thanks Court, that does mean a lot.  Great to hear that you have a plam inplace to manage your Mum's pain.  I believe that that is so important not to go through any more than what our loved ones have too.   I am so scared about the scan... I only want to know something good... Dad is doing well, but his feet and legs are still holding fluid after the last lot of IV potassium and magnesium they haven't gone down which is a concern.  The doctors don't seem too worried about it, but Mum gets upset as a friend of there's feet swelled near the end of his journey.  Dad is looking and feeling good except for this.  Well Wednesday will tell...  Well bye for now, I was just feeling a bit down and thought I would pop on and say HI! Love and well wishes to all!  I know a lot of you don't post on here but enjoy the read and info all the same - XOX to you also!  Jules XOX     

Oh I forgot to say, 'That my Dad 66...' is going to be 67 tomorrow - go DAD!!  - Jules  

Hi Jules, A Great big Happy Birthday to your dad. Hope he has a great day. Sorry you are feeling it. The pre scan nerves are hard to combat. I think your dad sounds as though he is doing very well.  I would think it would be normal to have a few remaining problems after what he went through. 

Glad you are having nice weather, we have about two inches of snow. The kids are sledging already. Causes a few problems on the chemo front though.

Magda, I hope you have had a better weekend.

Ann , Hope Nev's last chemo went well. Its great that he is able to work.

Hope everyone else is well.

Love Court

Morning all,

Welcome to the new My Dad 67yr old......  HAPPY BIRTHDAY JULES' DAD.  

We are promised snow but nothing yet, meant to be going away next week too.

How is Gregory doing Magda?

Nev is back on track with his chemo, then ,in a couple of weeks he will have a you know what!

Hope everyone else is well and warm (not you Jules, showoff)

Love Ann xx