Still incureable

Great to have you back Phil.  You've been missed.

Gragon.

Thanks Gragon

Its good to be back. Phil

Welcome back Phil. I second Gragon, you have been missed.

Some time after my incurable diagnosis I received a letter from the Cancer Care Centre inviting me to attend for a Mammogram 'as early detection of breast cancer saves lives.' It was more than a little disconcerting considering the amount of time I spent there.

Other than that I've had excellent care throughout, and I can't imagine dealing with the news that your treatment is no longer working AND the shambolic experience at the Marsden. You must have taken a battering. Thank God for Brighton, I hope this will be the way forward for you and wish you the very best of luck. xx

Thanks Tinalay

Another welcome contact.

Phil xx

Hi Phil

So sorry to read of your experiences at the Marsden, Sutton, Phil. I too had bad experiences there and would not recommend  the Marsden for lung cancer treatment. It is difficult saying this as the Marsden is held up as a centre of excellence. So glad your local hospital is supporting you and you are happy with their approach. It makes such a difference and l suppose in all walks of life you have people you can connect with and others you cannot. One of the oncologists at the Marsden gave the impression she was bored and l felt my cancer did.not engage her. There was nothing l could do as my local oncologist was friends with this Marsden oncologist. It doesn't matter now l am beyond oncologist's help but so pleased for you your local oncologist looking into further treatment for you and so speedily. Hope new treatment goes well x

Hi m-j

Gives me no pleasure to know you also had problems but Im pleased it isnt just me experiencing problems.

The oncologists, especially if they are involved in research appear to know each other but I have already passed on my thoughts. Its only their egos that get bruised, it is, quite literally, my life. They have to realise that the NHS isnt there for their benefit, its to provide a service to us, the patients. I realise that budget cuts are a major problem, it was the same in the police when Theresa MAY was slaughtering them. But simple realisation that cancer kills and cancer untreated kills faster, would be a good start.

Oncologists of the World take note, you are here to look after us. Without us you dont have a job!  

Absolutely!!!!!!!

xxx

Hi

It is good to see you back. The Marsden sounds utterly shambolic. It’s weird. I hear great things from others including that they do report scans very quickly - including within the visit to the ct scan unit.

My experience of trials is that they require a number of frustrating visits before you finally get underway. I sit on a trials group as a lay member and the thing that’s struck me is just how complicated they are. So for example there will be a fairly straightforward set of inclusion and exclusion criteria then along comes someone with an unusual history and that upsets the whole thing. Then there’s another telephone conference to agree a change, redrafting, signing off from the sponsors and back to the patient who by that time has gone off to another trial. 

Anyway. Brighton sounds much more like it. It seems to me that when you have good research nurses involved then things just work better. 

Xx

Hi Daloni Ive just written something very similar on the Lung thread. Its true my experience is of one small group of people and you cant draw conclusions from that.

Anyroadup

Its good to be back.

Phil

Sometimes being on a trial can have more than one meaning of the word "trial", if you get my drift! You are tested for patience and endurance! But you are "getting somewhere", so that much is good. Keep on keeping on.

Lots of love

Alison xxx