New to the Group and want to say Hello

• Hi  and Welcome to the incurable section, of Macmillan.
• You have done really well, as you say, cancer is always in the back of your mind, though it is not the be and end, of your life.

• My hubby and i both had Reiki, and both got a lot from it, in one way or another.
• I was stage 4 from day one, with lung cancer. not sure what immunotherapy your are on, i was on prembo and did the two years. with good results and finished in 2018. no further treatment, until 2021/22 then 13 sessions radiotherapy
• Well here do like the word incurable, . rather than terminal, that is used mainly when no treatment can be offered, and sounds better.
• Glad you have found us all, every one here is to support the other.
• Go on any thread you wish and join in, you are always welcomed.
• Nice to met you. xxx.

Thank you for the welcome Ellie and I will it your comment about incurable :0)

Sorry Ellie - I meant note your comment. Not easy on a mobile with numb fingertips ;0)

LOL no problems, every one just thinks, it does not fill so final, even though it is used some times.

You have done well, and the immunotherapy, is dong its work, i had good results from mine, it is the way forward in a lot of different cancer these days. Kinder than chemo.

I am still on 3 monthly scans, until such time, things change.

My fingers go numb and tingle though only finger tips, but we do what we can to get us threw.

Just to say, if you click on my icon or others it tells you all about that person and their journey, saves keep writing it, you can do it in a profile xxx

Hi Ellie - great advice on my profile and I’ve fone a copy and paste to update that now as well.

The fingers and toes thing seems to be often referred to as pins and needles and that was fair to describe how things were for a week after each Chemo session.

For me, what this feels like now is that the nerve-endings of my fingertips, toes and just under the front of my feet feel hyper-sensitive to hot and cold, but just under the skin (the epidermis layer) feels numb. Took me a while to figure out the feeling but it’s like half an hour after an injection at the dentist when my mouth feels half numb and half back to normal. My feet generally always feel cold even when I’m assured they are warm!.

Hey-ho ;0)

You have.earn so much as we go threw, this journey, it is hard, but is  doable.

We do compensate for effects, of different treatments,where there is a will there is away.

It is very quit here tonight, but i am sure others will come in.

If you have a certain think you need to know or a topic, always start another thread, then people can see, the topic and if they have an answer can go in.

Once things are more set out easy for every one, you have done well so far, so its onwards and upwards.

Every one is so help full and we all support each other in good times and bad, it is like you have gained another family, threw a bad situation, which really helps, well has me, been here a long while, would not have got this far with out every one.

It is easier some times than talking to family, as we truly know what you are or maybe going threw, x

You get that holiday booked, i finished treatment and  hubby and i had a cruise booked, though he got diagnosed and i lost him, i so wish we had both had time to do the cruise.

xxxx

Hi there and welcome!!

I am incurable stage IV since October 2015!!!! Had immuno therapy also Nivulumab. And see, still here and living!!!

Hi DekH, A warm welcome to the group no one wants to join but once they have, they are glad because you will get a lot of help and support here. I think things were a bit quiet because it was the weekend but others will reply in due course. As you can see by the time, I am a night owl!

I see Ellie has already given you good advice, especially about using Incurable but treatable instead of the old fashioned word of terminal! They have come on in leaps and bounds in creating new drugs for all types of cancer these days. I, like Ellie, have been here longer than even my Oncologist can believe, due to a Trial I went on as a last resort! That drug is now licensed and available on NHS to use.

The other reason you should use the word Incurable is when you get Travel Insurance, (as you are talking about a holiday you will need this) if you say Terminal, they will not give you anything but Incurable and being treated makes all the difference!   I am insured with www.insurewith.com and before that with MIA but if you put "Travel Insurance" or "Holiday Insurance" into the Search Box at the top of the page it will take you to a page with lots of advice, just click on any topic you fancy. The other thing is it is best to phone these companies because if you start to fill the form out Online, at some stage it will tell you a phone call is needed and you have wasted all that time filling in a form!

This journey is a roller coaster of appointments etc but stick with it and eventually things can slow down for a bit! Keep in touch!