Jenni

I am glad the second dose of cyclophoshamide was a little easier. The trouble with these drugs is that they are so invasive, it is no wonder you feel completely wiped out.

Yes I feel a failure but would not admit it to anyone other than on here. I have failed on two anti-tnf's and Rituximab. My Rheumy team are brilliant but I feel embarassed that I have let the side down. I also feel embarassed with my family and work colleagues. They all get exicted when I try new drugs and you can see them routing for you and then it fails. I know in my hearts of heart that I should not blame myself, but silly as it may sound, I just want to please everyone that I have finally found my "cure". I am waiting for the home delivery service to get it's act together and then will be trying Simponi. Another round of bright faces and encouragement looms.

Good luck with the knee replacement and I hope it brings the relief that it brought me over a year ago.

Take care

Jackie
xx

Good evening
I definately have some kind of reaction to the drug
I keep needing a wee!

It's sudden
The pelvis hurts
But no pinky wee

I think it must just annoy my bladder...
Then I wonder if the mesna makes you go more to try and rid the body of the stuff?

I'm in bed so much
But loved playing snap
Dominoes
And the dinosaur shapes game
With bernie boo this afternoon

I'm going to see the knee surgeon in the morning
Feeling grotty still
But
I'm trying to feel better!

Im trying so hard to make this work

Hello Jenni

Glad you managed to have your second round of cycl.. I hope that the bladder thing sorts itself out and
you don't get anymore trouble. Thinking of you , you are so brave.

Take care

Hi Jenni
Hope your appointment is worthwhile today and that you are feeling a little better.
Hope the ice and snow has not been a problem

Best Wishes
Sue

Hi Jenni,
So sorry you are feeling so very grotty from the infusion but well done for hanging in there. Hopefully the bladder will settle, I often get this after infusions.

Hope all goes well with the knee chap today, out of 22 ops, my knee replacements have been the most successful. My legs were totally deformed, stuck at 45 deg outwards from the knee and it was feared too late for correction, but they are great thanks to brilliant surgeons.

Its hard when the drugs dont work, most of all for you, but it is the word 'failure to respond' which we take to heart. Its just that we are all different with responses and side effects, but it isnt a test we have to pass, just a journey to try and help you have a better quality of life, which I so hope for you with all my heart.

Arent children a tonic!? They are so open too, our 4 y ro ld granddaughter is full of' death' questions at the moment which I remember is normal at this age, so I dont take it personally! \But she is so full of fun too.

High doses of steroids? Well they can be life savers and many people have to stay on high doses for all sorts of reasons. Reduction has to be carefully monitored or we can end up with an Addisons crisis as I did recently after my hand op. make sure the anaesthetist knows your dosage and they will boost the drip around the knee op time. I had no problems with that op at all, it was managed very well. Being discharged very quickly this time (at my request ) led to a too sudden drop for the adrenals -we live and learn!

Take care dear Jenni and stay strong,
Love Lizxx

Thank you all

I'm back from hospital visits and inbed again
Such a rock and roll life!

They did the pre op
I met the anaesthetist who asked a lot if questions Inc how I'd feel about having a spinal block and epidural
I said if you can be sure youll get it in first Time with no complications fine
But they took 7 goes getting my epidural in when I had bernice and I had to have my lumbar puncture under guided xray and I still had electric jolting and I still can't feel part of my big toe after having bernie! The spine is all tight and chewed by ra

I havent an objection to being awake
But I don't think I can manage a spinal

So instead I asked about a general and a block in my leg which he thinks is possible
It does depend on what mr grumpy surgeon (think of the dentist from my family!) says and how soon I'm to face the right knee operations

I did have a positive experience of sister there who was kind thorough professional and treated me with respect and caring
The other nurse who did my obs tests- different all together

What to you think about this
She asked me to stand for height and weight. Well I can't. So I said I can tell you. No she said l just say can't do
She had a thick African accent
I'm good at picking out what people say but I had a job

She then took me into a room no room for wheelchair as lots of desks chairs and a couch at the end
I struggled onto the couch which was a good 5 steps and she said she couldn't help me walk so I furniture walked it
She then told me to undress
I said I can't
Please can you help me
So she did

Took my top off and put it on my chair
Then she said now take your bra off
I said please can you help me

She said how do you manage at home then if you can't do this simple thing
I said that I have people help me
As she took off my bra
I asked if I could have a blanket
The door was unlocked
Anyone could have come in
She said they have no blanket but she would pull curtain
So I nodded
She did the ECG without a word moving my boobs about
Then asked if I was very Anxious (i said not really but a lot of pain on this couch)and did the ECG again
She then said she'd do blood pressure
Temperature
All of this she did to me with my boobs out!

I don't consider myself a prude
But I felt deeply uncomfortable about this

I didn't complain because the rest of the pre op staff were truly marvellous especially the sister
Am I being ott about the nurse who did the bp test?

Hi Jenni

You are definitely not being difficult about being exposed, it should be at the very basic level of nursing care that you are treated with respect.
Do hope that you manage to get a general anaesthetic if that is what you want. Sadly it seems you have to fight all the way and stand up for yourself.
Do hope the whole experience has not exhausted you too much.

God Bless
Sue

hi Jenni,

sorry to hear you've been through such an ordeal.

no way are you being OTT .. it's hard enough to do as she asked with all the pain and imobility problems let alone while feeling exposed and vunerable. i thought a hospital gown would have at least been offered !!

let's hope your knee op's come round quickly and are successful, you've been through more than enough,

sending my best wishes your way,

Suzanne x

Hi Jenni, no i don't think you are being ott about being undressed and no blanket /sheet to cover you while having ecg and bp. In my last job, in outpatients, we always had sheets or blankets to cover our patients as much as possible and that was in gynae clinic.

Bevxx

Oh Jenni,
You are definitely not being OTT. What an insensitive, uncaring 'nurse' she was! Whenever I've had an ECG, I've been given a gown ( not that I have much to hide unfortunately lol). At the least she should have helped you get dress after the ECG before doing the other obs.
I had a spinal block for both my ankle and knee replacement ops. I prefer them as I recover more quickly, I don't get along with GAs very well. We are all different though and if you have had problems with this procedure in the past, I think you re right to discuss other options. Hope you can have what you're most comfortable with.
Diane x