Busy couple of weeks coming up

Hi jamit

How interesting. Thank you for that - and your kind wishes. You’re spot on in everything you say. My plan is to implement Operation Have a Great Christmas. Get the treatment out of the way and on to living life. 

Isn’t it fascinating that we had the same diagnosis and the same cancer yet it’s so different. Apart from the initial treatment we have taken completely different treatment paths. The cancer I have is driven by a brca mutation so it was a PARP inhibitor that gave me the longest period free of disease progression whereas with you it’s been immunotherapy. Roll on the day of personalised cancer care where treatment is based right from the start on the drugs that work best for each of us based on the molecular profile of our cancers rather than the one size fits all based on its site of origin. 

Xxx

Good luck with all you have going on Daloni. You are a very strong lady although I'm sure some days you dont feel you are xx

Hi daloni 

I want to send u a big hug 

I hope all gos well 4 u 

Kym xxx

Way to go Daloni. So glad you're on the trial. You are so supportive and encouraging to others whilst going through total crap yourself. I'm delighted to hear something is going your way.

Oh Daloni, you can put a positive spin on this but my God, that's a lot for anyone to cope with, and all in 2 weeks. There are so many people here who are with you every step of the way, if all our good wishes were enough, you'd sail through. 

Wishing you the very, very best of luck. I hope things go as smoothly as possible, this treatment will keep you well and stable for as long as possible, and the pain will soon be a thing of the past. Lots of love and hugs to you and your girls xx

Well. After all the over excitement last week and then a week of waiting for appointments to arrive, I called the urologist’s secretary yesterday to be told they can’t do anything about my kidney until the end of October. 

It’s frustrating, not least as I’m feeling worse with each passing day. My GP has cranked up the pain relief and I’m mostly ok as long as I sit down but once I start to move I find myself doubled over within 100 metres. It’s not exactly pain, just my body saying “no. Stop. Pack it in” 

The trials unit will keep an eye on my kidney function as they are doing regular blood tests. And I guess I’ll know if an infection starts up and then I’ll be admitted via A&E. 

One appointment did come through - CT scan on Wednesday. 

Xx

That is so rubbish Daloni - why not till the end of October? Or is my newness showing up my naivety?!

Sending you lots of positive thoughts especially for Wednesday.

xx

Hi

This is nhs funding I’m afraid. It’s urgent but not an emergency. It may become an emergency, in which case I’ll cost the nhs a lot more than if they did it now. 

Xx

Hi,

At least you have the CT on Wednesday. If you are not coping  you can go to A&E and they can admit you and you will get it done quicker. I did that with my bad back and they admitted me there and then.

i am waiting for an MRI and a CT on the 15th October then 2 weeks later I will see the oncologist and I will start the targeted drug lenvatinib. I have now got it from the company on compassionate grounds. I am nervous about the side effects but have decided to give it a go. It will be good to have the scans to know where I am starting from with the size of the mets as they are now.

Hi ruthjp

You are spot on. I have various friends on stand by to take me to A&E should it come to that. 

That’s great news about your targeted drug. When the funding came through for me on compassionate grounds in 2016, my consultant told me to go home and open a bottle of champagne. I do understand your nervousness about side effects, though. I hope you don’t suffer too many. 

Xxx