Fed up

[claireLF]

Hi everyone.   I am on my 3rd week of UVB.   I go 3 times a week on Monday, Wednesday and Friday.   It is starting to work but I am getting fed up with organising my life around the appointments.

I have two small children and getting someone to care for them isn't always easy and the hospital are pretty reluctant for me to leave them in waiting room under watchful eye of a nurse.  

I wish I had a crystal ball to tell me how long I would have to have the UVB and whether it was going to work or not.   It would save alot of time and stressing out!

Has anyone else had this problem or felt this frustration?

Replies would be appreciated x

[elaineG]

i haven't had uvb but i can imagine how hard it is with the children (cos of my 2).  Only thing i can suggest is this:  A friend of mine had to go to hospital 3 afternoons for radiotherapy for breast cancer and social services arranged for her children to go to a childminder whilst she was at the hospital - bear in mind she had a 10 mile journey to hospital there and back and was relying on the ambulance to take her.  She didn't have to pay for the childcare either.  Dont know how far u are from your hospital, but it might be worth a try.

[twam]

I went for about three months, same routine, Monday, Wednesday, Friday, mine cleared up completely, I didn't have any real responsibilities bar work though, and my boss was very understanding, do you not have somebody who could babysit the kids while you go for your treatments?

[claireLF]

Thanks Elaine and Twam.    The hospital is only probably 2 miles away but the social services might be worth a phonecall tomorrow.

I only really have husband to babysit and he works shifts.  Sometimes he is available and sometimes not.   People have offered to babysit but when it comes to the crunch they are always "busy" or can't let me know with enough notice.   Where my kids are concerned I like to be organised and if I'm not I worry  

[lisalu]

Hi Claire, I can totally sympathize, I've been twice for UVB and had three children at the time, I had to arrange to go in the morning straight after dropping my eldest at school, and my mum looked after the other two, the second time I had to get back in enough time to take my daughter to Nursery for the afternoon! I was lucky that my dad would take me, drop me outside the hospital door then go and park up half a mile away whilst I had the treatment, then I'd phone him and he'd drive back round and pick me up!
It was still pretty mad though, I never had time to do much those days, but at least I didn't have to wait for buses etc or drag my children with me, you'd think the hospital would be more sympathetic to your plight, I have seen only one other patient who took her child and the child wasn't happy!
Let's just hope it is worth it and you'll be clear for a good while.
I'm supposed to be going back in the autumn, I shall have three in school then, but will have the baby!  let's hope mum comes good again!
Good luck

PS Love your hair

[claireLF]

So it's not just me then!    unfortunately, I don't drive either so it would mean getting a double buggy on and off a bus and that still wouldn't solve the childcare issue.    My 2 and a half year old would complain the whole time anyway.   Kids huh! who'd have em?  

[Alli_M]

Im waiting for my UVB appointments to come through & im dreading the thought off trying to get babysitters or if the appointment clashes with me taking kids to school or picking them up & the travel on 2 buses. Fingers cross with my appoinments ere.

[SJ]

It is a nightmare, huh?

And they are smallies, so it's not like you can wait until September and get them back to school  :-/

Although UV therapy is great for most people, it is a huge investment of time and energy.

I can imagine it is really stressful for you too.

Have you had UVB before? If so, how long did it take? Most people need 10 weeks or so (although by week 5 you should see a startling difference to the P).

Elaine's suggestion is excellent...

And I can empathise with the child care situation...particularly as it isn't a 'one off' thing - 3 times a week is toooo regular for many people.

Let us know how you get on. And if you are really 'stuck', talk to the derm nurse. They are normally quite sympathetic and perhaps if you explain you can't continue with the treatment unless you can bring the smallies with you for the few minutes you are in the machine on occasion, perhaps they'll relent? It would certainly be easier for you long term...

SJ

[SJ]

Im waiting for my UVB appointments to come through & im dreading the thought off trying to get babysitters or if the appointment clashes with me taking kids to school or picking them up & the travel on 2 buses. Fingers cross with my appoinments ere.

My experience of UV and derm nurses is that they should ask you when the best time is...if you explain your are taking the kids to school between 8.30am and 9am (or whatever) they should say 'well how about 10am then?'. If they say we have booked you into the 8.45am spot, make sure youtell them 'I can't because...'. They ought to be sympathetic and adjust it to you!

SJ

[Willow]

I find it hard enough to work around my appointments without having children. It sounds like Social Services may be able to help out or perhaps
your hospital has a creche?

I only go twice a week for my appointments so much easier to adjust work or
arrange appointments to get out of nasty meetings!    

Willow