Hi Pippin,

I am sorry to hear that you didn't get any further today. I can appreciate that you don't want to change surgeon at this stage - I would feel the same too. I hope that you can get further forward with private care and that you will find this affordable.

Jolamine xx

Good morning Jolamine, unfortunately going private isn't going to be possible. The prices I have been given are way beyond what we could afford. So I'll just have to be patient and wait it out. There's not much else I can do really. Feeling a bit down, especially as I thought my surgery was only a few weeks away. I hope you have a lovely weekend. Xx

Hi Pippin

Oh that's such a pain re your surgery.  Good news re bone density scan though, that's excellent. 

My kidney function has improved and is now at 48% (from the 19% in February) but they're not expecting it to get much above that now, as it's been stable for the last 3 tests.  I'm glad it's improved, but I can't deny I'm a little fed up that the treatment has had such an impact on what was a really, high functioning, healthy organ prior to all this.  The consultant did say that over 6 million people are living perfectly normal lives with a kidney function at this level and he was otherwise very upbeat and positive about it all.  I've been told I can now travel, so I am hoping to get away in May for a week to Spain.  Really need that break now!  The renal clinic were happy to leave my next check until May, but the immunotherapy nurses want a more regular check in between time, so I will be having fortnightly blood tests from 3 April, followed by a phone call from the immunotherapy nurses the next day.  I'm ok with this, as it means if anything does start to happen, they will pick it up quicker and can take action.  I am gradually reducing steroids and am now down from 8 to 3 tabs per day (40mg to 15mg) and will be reducing to 2 tabs in a few days.  

I had my second zoledronic acid infusion a couple of weeks ago and that seemed to go ok, with no adverse affect on the kidney as yet (but hence immunotherapy wanting to keep a closer eye, knowing my body can take its sweet time before it decides it doesn't like something!).  

In the meantime, I've decided life is for living and I'm just going to get on with things, start making plans again and deal with whatever comes along if and when it does. 

Now to find decent travel insurance that doesn't cost more than the holiday! 

I hope you hear something about surgery soon and they don't keep you waiting too much longer. 

Carol x

Hi Carol, so lovely to hear from you. Pleased to hear that your kidney function has improved. It has gone up a lot in such a short space of time. I understand  that it's upsetting that treatment has resulted in losing some of your kidney function, but it would seem your consultant is not too worried. 

Lovely that you are now able to travel, I hope you have a wonderful relaxing holiday in Spain, you certainly deserve it. 

It would seem everything is going in the right direction and good that your steroids are being reduced. I too have just had my second zoledronic acid infusion. I think we must have them around the same time. I have my next phesgo injection next week, after that only 2 left to go. I also have my first mammogram next week, which I'm a bit anxious about. My dexa bone scan came back normal, which was good news.

It looks like you are being well monitored with everything, which is reassuring. If you do find a reasonable insurance for your holiday could you please share. I was insured by my bank, but don't think they will insure me this year.

Take care and will talk again soon. Xx