Hello, I am new to the group.

Hi Emma

welcome even though it’s under unusual circumstances it’s good to meet you. There are lots of us in a similar situation to yourself , who share a wide range of views and interests. A finer , more supportive group of people you could not wish to meet. I have been here since my incurable diagnosis in August and met wonderful people here who have helped me a great deal and I hope I have been of some help to others in a little way.  It a club you didn’t expect to be part of , but you will meet lots of kind and talented ted people here who are a lot of things which doesn’t just include their diagnosis. Great to hear from you.

other members will pop up to introduce themselves.Good to talk to you and good luck with the fund raiser. Take care hug   xx

Hello Tamencio,

Thank you very much, it is nice to meet you too. Yes, Macmillan is so supportive and I don't know where I would be without the nurses.

You take care too. Xx 

Good to hear fro. You and your positivity.

i am older than you and have brain mets but have had no fits I do get headaches helped by cocodamol 

pare you on any medication ?

Hello Ruth,

Yes, I am on chemotherapy tablets, painkillers when needed and I am also on tablets for motion sickness that I take all the time. 

I have had unsuccessful operations to try and remove my brain tumour and radiotherapy before starting chemotherapy. I have fits and have done for some time now.

I have struggled with medication due to a lot of allergies and sensitivity. 

On the good side I have a good outlook on life, I believe we are all here for a time and we have to make the most out of every day. 

How are you finding treatments/life?

Emma 

Hi Emma

Can I add my welcome to the group for you also as others have so eloquently done so, but boy-o-boy would I love to have met you elsewhere. However we're here and we will make the most of it.

From what I have picked up so far, you appear to have a positive slant on your life which is commendable considering your illness at such a young age. You'll find that your fellow members are much the same although it's understandable that from time to time we need an arm around our shoulders just for a little comfort, a gentle squeeze. I'd guess that you have your moments too.

It's times like that that this community comes together in support for those who have a little blip. We're a great bunch, from a cross section of society and what makes us great is the support we can give. If ever you have something that makes you sad then just say, there is always someone around to help. I have a small problem with alcohol and when I mentioned it to the group, so many people stepped up with a friendly word or two of support. I was overwhelmed, but life isn't always a bed of roses. 

That brings me nicely to let you know about the gardening discussion that is on site. A few nice photos of beautiful flowers that even if you're not a gardener, you will surely appreciate the photo. You can get to see Woody the scarecrow who's only up, yet the gods have blown him down again but he's recuperating nicely

Well, I hope we get to know each other better over the next few weeks and months.

Take care and keep safe Emma

Tvman xx

Hi Emma.

sorry to hear the operations and radiotherapy were unsuccessful.

i also have had operations and radiotherapy for head and neck cancer. I hated the mask.

i am on lenvatinib a targeted dug with lots of side effects and I am still trying to adjust to the side effects of lenvatinib and the other tablets to reduce the BP.

i have had no fits as yet but have been warned I may do so.

i take metaclopramide regularly for the nausea.

i expect you are also on a lot of tablets 

I do find the lenvatinib makes me tired in the afternoons I cannot drive any more due to the risk of fits and I also have double vision

which painkillers do you take..

it is good to enjoy life and I have a good life and enjoy the walks with my dog and the sunshine in the garden.

i am looking for ward to going to Greece in September I find it helps to have something to look forward to. X

Hi Emma 

So lovely to meet you I am so grateful for the support and experience I get from others on this journey I have incurable ovarian cancer its been both a painful and enlightening journey. Welcome 

 Hi Emma, nice to meet you and a warm welcome. amdublin Hi a warm welcome to you too. Am I right amdublin that you joined the group 2 years ago? If that is correct, I wonder why we haven't met before now!  Also Emma you have just recently joined but I see neither of you have filled in any details on your Profile Page! It's quite helpful to be able to read even a few sentences about how you got here and if you have a partner, spouse, children etc Even just to know a little helps you get to know people better. Emma you say you set up a fundraiser is that for 2 June? Maybe you could give a bit more detail and how we can donate!

A warm welcome to you both!

Thank you very much Tvman, it is lovely to meet you too. 

I guess it might be easier for me because I have never known a time of being well. I also have chiari malformation, that is a head and spine condition and I have had an operation for that too but CM never fully goes away. 

What I believe is living each day like it is your last, even the healthiest of people could die tomorrow. I feel blessed for every morning I wake up and have no regrets because life is short.

Hello Ruth, 

I am fortunate really because I didn't mind the mask, yes it added pressure on to my head but it made me feel safer when the radiotherapy started.

It is wonderful that you are going to Greece, I hope you have a nice time. With my motion sickness I can't go very far, just to the hospital and back in the car makes me bedbound the next day. 

Well I am very awkward regarding tablets because of my allergies. I was going to be on a chemotherapy that was half drip and half tablets but I took one tablet and it made me very ill. Please don't ask me the names of treatment as I can't remember and my carer gives me them at the right times because I would simply forget. Anyway I am now on a more gentle form of chemotherapy, sadly they had to be reduced for me.

As for pain, I take ibru cream and tablets, I take the cream more often because the tablets are too strong on my tummy. I have tried a lot of steroids but I am highly allergic to them so we didn't go down that track. I prefer to eat and drink the right things, like turmeric and matcha and for me they reduce the pain.

Take care 

Emma