Newly diagnosed but incurable.

I hope the radiology people are more communicative. I feel in a state of limbo just now. It does help so much to hear other experiences. I don't feel so alone, although I do wish you were all fit and well

You are right. I need a notebook to write things down. I'll ask my husband to bring one in tomorrow. Thanks. Xxx

There is so much going threw your mind, and i come out, and say to daughter should have asked this should have asked that, i now right them down, We learn as we go along.

Hello AnnaMary.

I asked how long and was told eight months to a year.

That was six years ago.His maths ability is worse than mine.!

Plenty on here like me.

Once your face is feeling better your mind will as well.

I guarantee you will become used to how things are. It just happens, your body goes into ' I can handle this' mode. We all have, why not you.

Best wishes.

I hope to be as strong as everyone here. 

We all start of this journey the same, and how we learn to cope is different for every one, i try and carry on as normal, as i, can b, and when i fill like S..t i take it easy.

You will find your own way of dealing with the situation, and what is right for you,

This site has been my life line at times, and would not have got this far with out the help of many good people. xx

That is good to know. I hope you are keeping well. 

Hi AnnaMary, A belated but sincere welcome to this terrific group. You have definitely come to the right place. The site does take a bit of getting used to with all the different buttons for things but you'll soon get to grips with it!

I'm one of the ones well past my sell by date. I have Malignant Melanoma which had spread to the lymphodema nodes, chest,pelvis, bones and latterly my right eye. I went straight to stage 4 incurable but my oncologist fought to get me on a Clinical Trial and it worked its magic. I was dx 2013,came off the Trial drug 2016 and before any other treatment which has been developed since my diagnosis, my oncologist and I agreed to wait and watch, which we are still doing.

There is always hope, as you see from the people here but it can be a bit of a rollercoaster ride at times. The best advice I can give is try to take it a day at a time and I would like to reiterate what Ellie said, to write down as you think of them, any questions for the oncologist and put a clue word to remind you of the answer. I have done that since the first time I saw my onc., I have been through a few notebooks, as you imagine. I've attended other clinics, Plastic Surgery, Dermatology, Orthopedic but the only one who gives me a straight direct answer (when she can) is my Oncologist! So write down all your question (and your husband/partners questions if you have one) and take it with you on Friday. Good luck but I expect I will be chatting to you before then!

If we can do this, so can you!

You are certainly right about the roller coaster. My right eye has been affected because I can't blink. I'm currently in hospital having the infection treated and the eye is sewn shut for now. I've never seen an oncologist yet, just the MaxFax chap and on this coming Friday a radiotherapist. That's all they can do for me,they say. Just buy a bit more time. I was hoping they could do more.

I am so relieved to have found this forum. Nobody else can do really understand how you feel. My thoughts are all over the place just now.

I hope life is treating you kindly just now. Xx

Good Afternoon

Well i would be asking the MaxFax, chap why?  Perhaps that is all  he can offer at this moment,

Though you do really need to see an Oncologist, every one has what they call an MDT meeting, when the whole team you have discuss your case.

Have you been assigned an oncologist as such, event though you have not seen them, i would also be asking the radiotherapist on Friday.  as well, when will you be seeing an oncologist , you must have one .

Questions to be written down, and you have to speak up for yourself at times, not easy but has to be done.