What to do

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I saw the consultant yesterday who said my scan was mixed results the secondary liver tumours had not grown but I had a new tumour in the liver. Crap news, I have been feeling so well the last 6 weeks that apart from taking medicine you would not think I had terminal cancer and that is how I have been thinking. I was hoping that the consultant had made a mistake in the original diagnosis. it has been an amazing period in what has been hell 5 months.

He has offered me another course of a different chemo but I am so scared of feeling ill again. Yes, the first chemo kept me alive but at what cost - I felt so ill and spent time in hospital after chemo bout 5, so much so the consultant said not to have the 6th session.

my husband said he would prefer me here despite being ill as we will have more time together and as a family. Part of me understands that but part of me does not want to have treatment. But that is like saying I don’t want to live. I want to live which is why this is all so crap.

I am scared - it’s all real again.

I am a 54 year old woman so it feels odd to be saying I’m scared. It is such a hard decision as even though it is my decision it’s affects everyone I love. I probably will have treatment but how does everyone manage how they are feeling.

rant over

Candysmum 1 month ago in reply to Candysmum

Hi again Clare24

I forgot to say, there is a group called the Addison's Disease Self Help Group. They have a website full of info, and an online forum that you can join. They also sell a really good book about Addison's. There are regular social meet-ups too, but none where I live.

In my experience, you are lucky if you get an endocrine doctor who is knowledgeable about Addison's! Mostly, they are seeing patients with diabetes, so having Addison's is definitely a self-management thing. I hope you are getting some support with it!

best wishes

Kate

Coddfish 1 month ago in reply to Minmax

Even when you are off all treatments / drugs, some consequences linger. Other than replacement thyroxine, I am on nothing. My scans are clear. But I have a range of inflammatory effects, a desire to not go back on steroids, and a need to not get too dependent on NSAIDs because of the previous kidney damage. Have settled on a dose of long acting ibuprofen in the morning and topical ibuprofen rubbed into the area of my spine feeding the sciatic nerve of my left leg in the evening. This allows me to function but not do a lot of the things I would like to be able to do.

Minmax 1 month ago in reply to Coddfish

Hi Coddfish I am off treatment since June and get intermittent pains in head , kidneys liver etc. I feel very fortunate as can still function but I have to be realistic and things are more than likely going to get worse if or when tumours in neck , liver , lungs start playing up. I am doing very little also as when you dont feel 100% that's it. Oncologist said cancer usually has a 6 month break before coming back which isn't a good diagnosis as will need treatment again . On an up note great they at least can do something is the way I look at it . I wouldn't swap my illness for yours lol . All the Best Minmax