I'm going to have to get stroppy

jenzie06

Got a letter yesterday cancelling my biologics appointment in August. There was no explanation and no other appointment offered. Now I'm going to have to ring up tomorrow and get an explanation and another appointment. When I booked it I was told the nurse who runs the clinic was poorly but they booked it anyway. Should my treatment be delayed because of their staffing issues?
I'm getting pretty desperate anyway. I'm struggling to look after my beautiful baby boy and I'm heavily reliant on my hubbie and parents to help. Its surprising how you find that you cling to these appt's, thinking if I can only hold out til then I'll be fine. I've got a horrible feeling that they are going to make me wait. Should I get stroppy?

only49

jenzie06 wrote:

Got a letter yesterday cancelling my biologics appointment in August. There was no explanation and no other appointment offered. Now I'm going to have to ring up tomorrow and get an explanation and another appointment. When I booked it I was told the nurse who runs the clinic was poorly but they booked it anyway. Should my treatment be delayed because of their staffing issues?
I'm getting pretty desperate anyway. I'm struggling to look after my beautiful baby boy and I'm heavily reliant on my hubbie and parents to help. Its surprising how you find that you cling to these appt's, thinking if I can only hold out til then I'll be fine. I've got a horrible feeling that they are going to make me wait. Should I get stroppy?

hi jenzie

i can understand how you feel i too think at some point will have to get stroppy as you put it, i would ask for a reason why they canceled your appointment, and if you dont think its good enough reason then i would get stroppy, after all you have met them half way, but you need that appointment, sometimes its a real shame that you have to get through to them that way, but if that what it takes then so be it, sometimes you got to think about your self.

skezier

Hi Jen,

I am so sorry they have done this to you. Its not fair and hopefully the next appointment will go head and you will get the help you need for the bones.

You do cling ti the appointments and they don't understand what cancellations or a bad appointment does to you but sending a ((( ))) and so many hopes it gets sorted for you soon.

I am sure your hubby and your parents are quite happy to look after Harry though. You hang in there and fingers crossed you do get the appointment next time. Cris x

dolittle

Hi Jenzi,
Have managed to pop back on for a little while. Heavans, what a weekend!!

I agree that they don't know what this does to us and I hope that you can claw an appointment out of them. I'll make a wish for you.

Glad to see your post, 'cos now I can pass on 'Congratulations' from Thomas, the gentleman who played You're Not Alone. He said to tell you how pleased he was about your little boy and sends his good wishes to you and your husband. He aslo said to tell you that he is also wishing that your health will pick up and you'll feel better .... as do I. I'll be keeping my fingers crossed about your appointment. Keep chin up, lass.
Dolittle

angel1

This is so unfair Jen. These appointments are like a beacon shining in the dark.

Before you go down the stroppy route, maybe you should try - and I`m sure it won`t require any acting! - the tearful route. Surely some understanding will be found for a new mum, trying her damndest to do the best for her little one.

If that fails, then strop away!!..............Ange.

speedalong

Hi Jenzie,

No wonder you are upset - you have been struggling along knowing the end (the apppointment) is in sight and now suddenly it isn't and you don't know when it will be. I would use any strategy at your disposal to get another appointment straight away. Surely there must be more than one clinic/more than one person running it in the whole of your area ... Get on the phone tomorrow and if you have no joy get your GP/Rhuemy on the case too.

Good luck.

I must say being firm, calm and unbudgeable does help as too as Ange points out crying desolately (which I have only done once before - it was quite genuine - and it did work.)

Let us know how you get on.

Speedy

barbara12

HI Jenzies
I am so sorry they have cancelled your appointment, this has just happened to me for the second time, I really hope they can offer you another one, It is awful what they expect you to do (beg maybe) you will have to get it across how important this is ti you, if it is crying then I am sure it wont take much.
Do let us know how you get on.
Lots of hugs (((((()))))
Barbara xx

trisher

Hi Jen

I hope your little boy is getting on fine.

To have your appointmet cancelled is very disheartening. I really hope you can go soon and get your treatment.

Surely you are not the only patient who needs this. There must be other staff.

More than lightly it is the children's summer holidays, as parents can now only have their children out of school at these times.

I hope you get it soon.

Trish xx

jenzie06

Thanks everyone.
I think the tearful route will happen anyway. I'm reducing breastfeeding in preparation for anti-TNF so my hormones are all over the shop. Poor hubbie is trying to keep his head down as I have been quite monstrous. Combine hormones, tiredness and pain and its a cracking mixture. He's also going away for a few days with work and my Mum is having to move in to help me. I hope Harry behaves himself!

There will be other people in the same boat as me at the hospital and they can't keep us all hanging on.

marion1952

Hi Jenzie

That's so disappointing.. Surely the anti-tnf clinic doesn't just rely on one person!! As the other peeps have said - if you have no joy over the phone yourself, get your GP to phone and emphasise how much you are struggling..

You've given Harry a good start and I'm sure your Mum will enjoy helping you with him..

Hope you get sorted soon..

Marion

dorcas

Hi jenzie,

what a rotten disappointing and maddening letter to get!

I'd phone them for sure..it can't just be down to one member of staff to deal with the anti tnfs. :shock: so demand to know what's happened.

tell them the lengths you've had to go to to prepare for starting the drug....weaning Harry being the biggest...

say that you could come in sooner ??? or take a short notice cancellation. (depends on which drug you're getting of course; which of the anti tnf's is it Jen?).

if that fails I'd phone my rheummy consultant's secretary....after all it's the consultant who prescribed the anti tnf and who expects that you will be given it.

do what you can and then some....let us know what happens tomorrow?

lotsa love for you and Harry.....and a pat on the back for your OH!

Iris x

jenzie06

I finally spoke to the hospital. They admit they have staffing issues and more than likely I'll be seen end of August beginning of Sept. So I've just got to hang in there.

It's frustrating as I've now stopped breastfeeding and Harry is doing brilliantly on the bottle (Struggling a bit digesting the formula - its going in but not coming out very easily -poor boy).

speedalong

Hi Jenzie, I would periodically (and regularly) ring the hospital to enquire about your appointment to ensure you get one of the first ones available.

It will be good for you and Harry to have some support from your Mum whilst OH is away.

Have you consulted the health visitor about Harry's problem with digesting the formula - she might have some alternatives or suppliments to suggest.

Speedy

PS suggestions to help are

Massage your baby's tummy
Start at the belly button and then massage outwards in circles in a clockwise direction. Some oil or cream on your fingers can also help.

Only continue if your baby enjoys the massage and is comfortable and relaxed.

Move your baby's legs in a cycling motion
Place your baby so he or she is lying on their back. Hold their legs and turn them gently in a quick cycling motion.

This will make the stomach muscles move and, in turn, put gentle pressure on the intestines to make them move.

Give your baby a bath
A warm bath can make your baby relax so the stools are passed more easily. Once your baby has relaxed in the bath, you can also massage their stomach (see above).

When you wash your baby's bottom, apply some cream or petroleum jelly (Vaseline) around the outside of the ****.

Give cooled, boiled water
You can give your baby extra fluids with bottles of cooled, boiled water.