Hi, 

Thats goid to know but I thought you had a MDT allocated to you and that was it. 
 

I met with the surgeon who did my op 10 years ago with my original bowel cancer. He told me he has two oncologists onboard on the MDT team But he has the final say on the treatment. 
 

I just don't know what to do. This has taken over my diagnosis. 

Cath, hi. I was told by a surgeon that "in 2 weeks time I will be performing an operation to remove and rebuild your upper jaw using your shin bone. I shall be replacing lymph nodes in your head with ones from your leg. I will also be removing your eye and patching over with skin from elsewhere". This was BEFORE any meeting with any oncologist or MDT. I have since refused treatment from him based on the fact he caused me mental trauma. I told my nearest and dearest who were all shocked to the core.

None of that has happened. He had no right to tell me that at that time. If you're unhappy with them, change. Make it known. It's you who is dealing with it, not them. 

Hi Matt,

Im so sorry you had to go through all that. If things are not bad enough this is the last thing you need.

As I have previously said I had my original cancer 10 years ago and I never had one complaint. 
 

This time I'm not impressed. They know how I feel about him as I have already made severs calls regarding my concerns regarding the oncologist. I will give him one more chance on my next appointment 25 th November although it's a while away. 

Hi sausage, im still grinning alot. When i was first diagnosed i arranged my funeral plans for me and Brenda so my darling wife will have nothing to do as all sorted and paid up, we both decided for cremation as we know our family won't look after the graves so we're going to fertilise the plants. I keep thinking of the interest our money is making for the funeral company after all these years, we could have a good holiday on that. 

Take care try to keep positive and keep chasing them up. 

Billy 

Hi,

My hospital is Forth Vally and it's the oncologist and Colectoral nurse it's the one I saw on my first visit and strangely enough it was the same colectoral nurse I saw from 10 years ago but she tends just to sit there and agree with the oncologist. The oncologist comes to our hospital from the Beetson in Glasgow. She said we really don't want to start chemotherapy to early, I said really that's your go to? I said well this is a decision which will be made with me included. 

Hi Cath

Im further a wee bit further North from you and Im nodding in agreement with our shared story as I know where you are coming from! And I don't mean in geographical terms either?

I saw the GP earlier this week after she phoned me at 8:15 in the morning to find out how I was feeling!

I think it's squeaky bum time.

I had two options open either I let my anger flow forth or I honestly told her I wanted the diagnosis turned on its head.

She commented yours clothes were falling Aff ye Quine!

My response was...it's a bit better than some GP telling you over the phone you were fat! and that I do t need a GP who has never seen me to tell me over the phone that I'm fat.

That broke the ice in a bizarre manner.

Anyway GP asked me how I was ( she last saw me end of June)and I calmly stated ....l don't want to die...(well not in the near future anyway.)

I then said the magic words..

I don't want to get involved in the blame game which just slows down treatment,wastes time and entourages the practice of defensive medicine.

You don't need to apologise as it is what it is and I just hope we all have enough time to turn this diagnosis around as soon as it lands on your desk.

That made an immediate change and I mean immediate.

I know we should be treated with all that is available in the medical arsenal from the onset but the NHS does function like this anymore.

I had written out a list of about 25 odd sentences about what I would like to be offered if possible.

For example

being allocated a different oncologist.

being allocated a MacMillan nurse at the breast consultant meeting ( Macmillan nurses just listen and support YOU the patient)

being considered for any clinical trial that I would  be eligible for.

being considered for an Oncogene DX test

A letter from breast consultant had already appeared on her desk indicating I was to have bone scan and a full body CT scan.

If this letter had not appeared I would have been asking for a CT scan/bone scan etc.

 Your list will have the questions and options you wish to have and ask if you are eligible.

Personally as soon as I indicated that I was not going to purse perceived failure of treatment but wanted to draw a line under this setback and move forward rapidly the entire scene has changed.

Hi Billy

im glad someone else has organised their own send off as it had crossed my mind I was being morbid .....well I thought I was being pragmatic but it was my husband who said I was being morbid hence the thought crossing my mind.

I feel I'm in control of a small part of the space I find myself in.

Hi,

I totally agree with you, 

In my next oncologist appointment I will spell out what I would like to happen see if we can all be onboard. 
 

As far as I'm concerned it's not terminal till I'm not here. 
 

I want them to throw everything at this so I can as long as possible here and not be written off just because it's incurable. 

Hi Cath

I am going to tell you something that perhaps you may already know or in fact you may not be aware of.

The Beatson Clinic is THE centre of excellence regarding cancer care.

You ARE in great hands.

Trust me you are...also a better idea to suggest taking part in any clinical trials that are running should you feel like taking part.