Ruthjoy - Recently diagnosed, 1st treatment this Friday in Cambridge

[ruthjoy]

Hi all I have been recently diagnosed too and start my 1st treatment this coming Friday in Cambridge any one else near there and anyone who new to this look forward to hearing from u

[s162216]

Apr 6, 2014 17:37:43 GMT ruthjoy said:

Hi all I have been recently diagnosed too and start my 1st treatment this coming Friday in Cambridge any one else near there and anyone who new to this look forward to hearing from u

Hi,

I infuse at Addenbrookes as well, so we might see each other at some point (I'm going this Thursday unfortunately). I know a few other members on here infuse there as well, so hopefully you might be able to meet a few other people having it as well (its unfortunate how Addenbrookes do it as you never really know when anyone else who is also having IVIG is going to be there).

Good luck with Friday, as its your first IVIG it'll likely take a few hours so I would recommend taking a good long book etc as it can get rather dull otherwise. Drink a good amount of water the night before, and keep well hydrated as that will help them find a vein, and also reduce the likelihood of minor side effects. Also I would strongly recommend booking several infusions in advance as the time-slots fill up quickly, and it can end up with you having not a lot of choice otherwise.

I'll probably be booking my next appointment for 30th of April or the 1st of May so we may be able to meet if you get an appointment on one of those days (If you want I can message you with when I'm having it so you choose your next appointment to be at a similar time?)

Sam

[s162216]

ruthjoy I know you've not logged in for a while, but I really hope that everything went well for you last Friday!

Sam

[ruth]

Hi Sam thank u for reply it went well just had a long wait before started as doc haven't signed form but told me to complain so I did I got my next 1 this Friday and yes how do u know who has same treatment ?as no one spoke

[s162216]

Apr 28, 2014 15:52:36 GMT ruth said:

Hi Sam thank u for reply it went well just had a long wait before started as doc haven't signed form but told me to complain so I did I got my next 1 this Friday and yes how do u know who has same treatment ?as no one spoke

Hi Ruth,

Its great that it went so well for you, unfortunate about the wait though. Generally its fairly easy to tell who else is having IVIG there as its one of the few drugs which still comes in glass bottles (as its pre-made for infusion unlike many drugs which come as a concentrate and are then diluted into a bag of saline or dextrose etc). I will admit that I did prefer where I used to have it as it was a dedicated weekly clinic where we were all having the same thing so it was quite a 'social' atmosphere as we would see each other every time, in comparison to Addenbrookes where I find it to be very much 'individual' as obviously most people don't tend to meet more than once or twice and the arrangement they have doesn't exactly promote interaction between people.

I'm coming this Thursday again unfortunately, but I'll see if I can book the one after for Friday in 3 weeks. What sort of time do you generally book your for?

Sam

[ruth]

Yes is a shame and I'm trying for Friday's as I work full time and I tend to go now for half 3 that way I can still work in the morn and as it's a fair way for me to come as live in Kings Lynn u r have to let me know if u can make that as would be good to meet people with same as me how long have u had Ruth

[s162216]

Apr 28, 2014 16:57:06 GMT ruth said:

Yes is a shame and I'm trying for Friday's as I work full time and I tend to go now for half 3 that way I can still work in the morn and as it's a fair way for me to come as live in Kings Lynn u r have to let me know if u can make that as would be good to meet people with same as me how long have u had Ruth

Hi Ruth,

I've been having IVIG for about 3 and half years now, Kings Lynn is quite a way to come from! I have to travel over from just outside Bedford taking several buses as I don't drive yet, at the moment I'm trying to find a job (I'm a recent graduate) so it I'm not too critical about when I can get an appointment although I'll probably end up working in Cambridge anyway as a lot of biotech companies are based there.

I'll see if I can get a 14:00 or 14:30 appointment, and as I'm usually there for about 2.5 hours we'll very likely be able to meet. I'll message over to you when I'm coming later.

Sam

[ruthjoy55]

That be good to see u at some point then at adding brooks ill give u my mob and let me know via text as can't always get on hear Ruth look forward to hearing from u x

[ruthjoy55]

That be good to see u at some point then at adding brooks ill give u my mob and let me know via text as can't always get on hear Ruth look forward to hearing from u x

[s162216]

Apr 29, 2014 15:17:55 GMT ruthjoy55 said:

That be good to see u at some point then at adding brooks ill give u my mob and let me know via text as can't always get on hear Ruth look forward to hearing from u x

O.k thanks, I'll text over when I'm next coming (if its available I'll try and get 14:00 or 14:30). I hope you don't mind, but I've removed your mobile number from your above post (I have noted it down) as obviously anyone would be able to see it otherwise.

Sam