Busy couple of weeks coming up

Thanks Millie .

I hope your treatment is uneventful and your scan so bland as to be a positive snore 

lots of love 

Daloni

Fingers crossed for you, Noodle looks gorgeous and it will be fun

Shouting "Noodle" when you are on walkies. Pets are a great comfort

Xx

Dear Daloni

oh so like the expression a scan so bland as to be a positive snore!!!

you do have a way with words dear friend.

lots of love  

Millie

Hi

is right, your way with words is fab. I'm sorry to read that things are edging forward for you though - made me take a deep breath at the reality of all this. I'm thinking of you today in that trials unit - hope it's all straightforward despite the delay. 

x

Good morning all!

I am on the 14th floor of the UCLH tower block with a view across north London. Even this high and with the windows closed you can hear the traffic. 

I had the second immunotherapy yesterday. It was a long day as there was a query over a test result which delayed things. I’d arrived at 10am and it was 3.30 before we got going. My veins decided to play hide and seek and I ended up with three cannulas at one point, none of them prepared to dispense a single drop of the red stuff. 

Everything else ran smoothly though. Skin prick tests to check whether I’m likely to have a bad reaction were fine. The infusion ran smoothly. Hospital transport had arrived to take me round the corner from the trials unit to the ward. My doc had gone home, saying there was no need to come back in the morning if all went well overnight. And then...

I had another infusion reaction. My chest tightened up  and I started to itch all over as hives came up on my neck. Thankfully the team got it under control quickly with some IV piriton and the transport guy waited for me. They insisted on sending me with two nurses, one carrying an oxygen tank. 

There followed the usual broken night of observations and more blood tests triggered by the reaction. And now I’ll have to go back to the trials unit after discharge from the ward. 

I am probably making this sound more dramatic than it was but it’s disappointing as I have a feeling it might mean the end of my involvement in this trial. Next week I am scheduled to go home after the infusion. If the same were to happen again, they wouldn’t be able to send me home. Maybe I am putting the cart before the horse. I’ll let you know...

Xxx

Don’t count yourself out just yet. I had the exact same reaction to chemo once and it is pretty scary but not that uncommon. I got Benadryl (also antihistamine) and was alright very quickly. They certainly would not kick you off the trial due to that.

I will cross my fingers anyhow. Do not how you do those long days waiting, I would have gone out of my mind and kicked off a trial due to  behavioral issues. You are superhuman.

Jamit

That must've been pretty scary Daloni, and it's left you with more uncertainty. I agree with Jamit, you must be superhuman to deal with all that the trial entails. I hope it's not a deal breaker and you'll soon be back home with your daughter and Noodle, have everything crossed for you xx

Daloni you are amazing and take everything in your stride. What happened must have been frightening. I hope everything goes well from now on. 

Roll on home time and a cuddle with Noodle and a big hug with your daughter. 

Polly

That must have been terrifying Daloni. I hope you get home soon to your two gorgeous girls. ️

Hi Daloni, sending you a hug and keeping everything crossed for you.

Just keep thinking of your daughters and Noodle,you will back in no time.

       Take care.Peggyx