New Member Struggling a bit....

I am a new member, previously just lurking. This is my first post.....I never felt that I had anything to contribute before now!   I had an open nephrectomy in October 2012, left kidney. 9 cm, invasion into fat and tissue but no venal involvement. T3a with 5% sarcomatoid differentiation. My surgeon suggested I might be a good candidate for a clinical trial. I am 51, and have enjoyed good health until this surprise. I have been involved in a Pazopanib double blind placebo study at Duke since December. I am pretty sure that I am on the active ingredient but have tolerated it well.  There are 2 tiny spots on my right lung they are watching and the first CT post surgery showed pleural nodular thickening. An April scan showed no changes. So far so good.  I am wondering if you might be a candidate for a trial Michelle? It makes me feel more in control that I am doing something rather than waiting for my next scan. It might be helping me, but more importantly it is helping fight this cancer long term. Perhaps you should talk to your doctor about it? There are several studies going on testing pazopanib/votrient and everolimus. Both are approved for treatment for mets but they are seeing if the treatment can be preventing the start of mets.     Meanwhile, keep moving forward slowly and take control of what you can. Diet and exercise and attitude make alll the difference.

Michelle,

It's about two weeks since your initial post.  I'm going through some of the same issues and wondering how you're coping. 

thinking of you.

good luck.

Izzy.

Miashelle1 said:

Hi Izzy
Thanks for asking I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow love to you all.....Michelle xxx

No, it doesn't matter, Michelle - from one at the other end of the UK at  5:15 a.m.  You seem to have it pretty well taped when it comes to what does matter and you now have another extended Family well placed to answer most of the questions you might have.

Miashelle1 said:

Hi Izzy
Thanks for asking I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow love to you all.....Michelle xxx

Hi Michelle,

It is good to see you are staying in touch, as you have discovered, this is somewhere you can come to for support or just to vent.  Everybody here understands how you are feeling, so you can speak freely, and there will always be someone here to listen!

I understand when you say you feel broken, in a sense you are!, but as time goes by you will learn how to live with this. Having had cancer doesn't have to dominate your life, but it will if you let it. I have lived with this for ten years now, it has been a concern, but not something I think about on a daily basis. No amount of dwelling on it was going to change the facts, it is what it is!

You seem to be discovering what and who are important to you right now. Life has changed, of course it has!, but at the same time, you say you realise how blessed you are. Just writing on here has helped to give you an understanding of how rich you life is. It is all there still for you to enjoy, don't let this diagnosis get in the way!....Just a thought!...If writing has helped you, maybe keeping a journal would be useful!

In my experience with anxiety and panic attacks, trying to focus on not being anxious is counter productive. The more you try not to be anxious, the more anxious you become!  Give yourself time, your body and mind are slowly adjustiing! You can't force yourself to feel a certain way, but you can gradually change your way of thinking, and you will, given time!

Djinnie x

*By the way did you manage to get hold of some Stevia?