Newly diagnosed but incurable.

Keeps us all sane at times, so your not alone on that one, Glad your home now, and your dogs will keep you company.

Would it be possible for you to get an eye patch as such they do  fancy  ones, , see what you may think.or ask the Doctor if you can, you cannot be the first one, with an eye problems, that's for sure.

Don't forget to put pictures of your dogs on here. Good luck for Friday.

I think few things sound scarier than cancer affecting your sight. You like me have had a very swift conversion from a cancer virgin into a lifer. At the time I felt that it's just about the most wretched thing that can happen in life, to suddenly find years have gone missing from your future, to have to deal with life itself ending. 

I would echo others that say I have got more used to it over time, though don't get me wrong, I still struggle with it often... at the beginning,not only was it all horrible and all new, I wasn't organised with it, I didn't have support in place, I didn't know how services worked and couldn't access the support I needed I didn't even have time to sort out a new bra once I recovered from my lumpectomy, for goodness' sake, or buy any clothes to fit over my huge ascites. It was miserable.

I know I can unfortunately look forward to more dark days ahead but I tend to find now that when I have a knock back I am more resilient, not because it's got any easier but because I have already dealt with some grim times and will surely do so again, I have already found sources of support and can more easily turn to them. I don't tend to stay down for long. I am learning all the time how to do my illness, and I hope that you too will find that things settle, things bed into place,and you can go forward with a plan.

It helped me a lot to set up a supporter's group on social media. I used a platform which sounds a bit like What's up?! It worked for me because you only need the app and people's phone numbers in your smartphone,and if you send out a message everyone in the group gets it,unlike on some platforms where not everyone may see the message.

Also when people offered to help I said yes please and asked them to cook. For Mrs. Sarah49 when I was in hospital,and for us both when I got home. This was massively helpful. My supporters soon set up a rota and those who felt they could were soon delivering meals on wheels most nights of the week. It really was a lifeline,and the cooks were glad to be able to do something practical. At other times I messaged the group to ask for drivers and even for people to stay with me the first time Mrs.S had to go away for the day, to make sure I got safely up and down stairs and didn't forget my tablets. And finally I didn't hold back from giving would-be helpers jobs like helping me move things up and down stairs and even decorating. We don't need this sort of support at the moment but we know it is there to call upon should the need arise. Some of the people who wanted to help were people I'd never have dreamed of asking, and they surprised me by turning out to be some of my most active supporters. Finally, it surprised me how many organisations are prepared to help in big or small ways - free parking here, a grant there, waiving a fee perhaps. It can be well worth explaining your circumstances and saying what you need. So my top tips are,set up a supporter's group if you can,and accept every offer of help no matter how small.

Hi Sarah, that's great that you have so much support in place. I must say that I haven't heard of that before but as I don't do Facebook or similar if that's what you mean. I did for a while but only because I needed to sign up for something that I can't even remember but that's not surprising as my short term memory is dreadful these days.

For example, I have my appointment to see my haemotologist this Friday and I always make an appointment for the early part of the week with the GP's surgery to have bloods done so the results can get put into the system for discussion on Friday. So yesterday I realised that I hadn't made the appointment to see the nurse and I rang in the afternoon in a bit of a pickle because I usually ring the surgery the previous week to make it. So you can imagine my surprise (shock) when I was told not only had I already made the appointment but it was for yesterday morning at 10.10 and I hadn't remembered although I had written it down on the kitchen calendar! I was very lucky that there had been a cancellation for this morning at 11.30 and I was speaking to the most helpful person (for me anyway)in the surgery. I apologised profusely and she said it was ok as she's aware of my situation. A real gem.

Tvman xx 

Yes I've also found that my GP practice has been especially sympathetic since my diagnosis. It's one more thing that helps a little and makes a big difference. I'd definitely say to AnnaMary, get as much as you can out of your GP and/or any other helpful health care professionals you are referred to. There is a lot of help out there for the likes of us.

Hi Annamarie, sorry about my late response but just read you post, well what can I say that my friends have not, I'm a relatively new boy on here only 2years in and yes I've past my sell by date, what ever you felling is quite normal we all felt the same after diagnosis, 

If you touch our icons beside our names you can read our profiles, mines a flower pot man, with A little flower beside me.

Just to let you know Annamarie is one of my favourite songs

Thanks. I will learn to navigate my way around this site eventually. Does anyone else find that waking up in the morning is a bad time? It takes me a moment to realise that my diagnosis wasn't all a terrible dream. I am so grateful to everyone for replying. I will see what Friday brings along at my appointment with the radiographer. The eye doctor reckons he can help with my eye but doesn't want to yet with everything else that's going on. Take care everyone.

My primary cancer shrank only after RT and the hormones keep it in check.

I can understand how you feel being recently diagnosed, its an terable time, why me what have I done to deserve this, you're not to blame it's human life, generally the medic's are ok and give great advic, but sometimes you have to make some noise be assertive to get what you require, shy girls get nowt, I keep notes and ask the question and i l always have my wife with me.

You will get used to living as an incurable, but most importantly just get on with your life.

My husband will be with me on Friday. There's a lot I don't understand. So far, I don't have a Macmillan nurse or an oncologist, that I know of anyway. Hopefully all will be made clear on Friday. Thanks for your advice. It makes sense. Life is hard to navigate just now.

Hi AnnaMary, I can now understand why your eye doctor doesn't want to do anything right away. As I said, a melanoma was found in my eye and I could not see out of it. It was like someone had pulled a net curtain in front of it. All I could see were distorted shapes. I couldn't understand at that time why the Eye Specialist wanted to wait before starting to treat it. However now I know. Only 6 weeks after starting the Trial for the  Target Drug, I had an eye scan and it had almost faded away to a shadow! That's when he said that was what he was hoping for! It is possible your eye doctor wants to wait and see if anything else affects it. Good luck on Friday! That morning feeling will go, it just takes a bit of time!