Did you miss me ;-)

Hello Jo,

It's good to see you back again.  It went very quiet for a while when the website was updated but it seems to be improving again now.

Sorry to hear about the new met, I have no experience of bone mets to date but hope that it can be resolved OK for you.  I understand that they often treat bone mets with radiotherapy quite successfully despite the fact that kidney cancer does not respond to radiotherapy.  I'm not sure that I can get my head around that.

It's lovely that you had so many family events just as things eased off even if we still have to be a bit careful.  I have been struggling with anxiety for a year or so now and funnily enough it was easier to manage in lock down as I had no contact with anyone.  Since that has eased and I can go out again I now get very anxious at how many people seem to be quite happy to cram into a pub with a load of strangers around them.  I have been to the pub twice but both times they were really quiet pubs and we had no one else within two meters of us.

I keep my hair really short now so I don't get so much of the zebra effect and even when my colour grows back in now it is a dirty grey so people tend not to notice so much.  I can tell from the colour of the hair when I am cutting it but I doubt others would notice much difference now.

My symptoms have reduced every time after I have had a break and I am now rarely troubled by much.  I still get a reaction to foods causing diarrhoea but the food that triggers it can vary each time.  Thanks to experience I make sure that I try the usual suspects when I am planning to be at home for a day so that I can manage the experience better.  I think that I don't sleep as well when i am on the tablets but it is difficult to say if that is the psychological impact of taking the meds, the tablets themselves or other issues like my anxiety so I can be definite about this one.

I hope that you enjoyed your Turkish meal and had a good week end.

Talk to you again soon,

Gragon x

Hi All

I have only just found this page again, been searching and searching since they changed the site.

I don't know where I left off at when I was on here last, but I had radiotherapy on my pelvis and my last scan came back ok so managed to get away with starting the treatment.  Had another scan last week and my results on the 20th so got everything crossed.

So nice to find you all again

Sue 

Great to hear from you again . I'm now on 400mg of Pazopanib too - with no breaks - so we shall see how that goes. Gotta clot on my lower left lung ( discovered at last CT scan) so am now on meds for that for the duration - at least 3 weeks.

Good luck re the bone met. Hope u don't have to change meds xx

Jo great to see you back and hopefully all will get sorted with new met. I know you don’t come onto site too often, now it’s changed I don’t think anybody visits as much as they used to. I get my scan results on 29th and I think I will have to start treatment then, it will be 800mg though, and not 400mg. One thing I can’t understand is Oncologist did not want me to start treatment before, but why not put me on 400mg, just so I’m doing something, I will need to ask when I speak to her. I hope you can still enjoy a gin, if so try putting a few jelly babies in your drink. They kind of get infused with the G and T, and you eat them when you finish your drink. They are very tasty.  Has to be proper jelly babies not wee cheapies.

Ian

Good luck Ian436 for the 29th

Sue x