[eveParticipant]

Well it started Yesterday

No longer on trials, 3 pm appointment for Zometa and start of Rividimid .
Agency nurse tried but failed to get a line in just like last time,so another agency nurse took over,you can always tell them as they never were name badges,Zometa was still not up on ward at 4pm,so nurse. Went to collect it,hitting 5pm before the job was done,why she could not have done the introduction to Rividimid while waiting on pharmacy I do not know.

Went through the procedure ,by this time Slim was just saying Yes and No,giving me the look (keep your mouth shut,let's just get out of here ) explained he has a bad chest infection,asked for sharp box asked for copy of bloods,she was more concerned about him taking supplements to help his weight,

Another nurse turned up with tablets,guess what !!! Wrong tablets,in the end they kept 2 boxers,I told them I would see my own doctor in the morning ,for other tablets.No print out of bloods,just what results of bloods do you want written on a scrape of paper,sharp box to small,no general health check done,this is just day one!!!.

I have bought a very large notebook,filled the first page,just wondering will it be large enough to note times and procedures on a one day a month visit to the hospital.
We got home at 6.30 pm. Eve

[PerkymiteParticipant]

Eve, You must write that down and send the information into the hospital. That was appalling. Are you in touch with PALS, it is an organisation to represent the Patient in all hospitals I understand. Have a word with them.

Make a few waves, I can assure you Slim's treatment next time will be taken a lot more seriously if they think things are being reported.

Kindest regards – vasbyte

David

P.S. As a rule I always note or ask for names and then make a point of using them, "nice to meet you Anita, busy to day". It registers every time.

[eveParticipant]

Hi David

To be fair to the department,a lot is because of pharmacy ,!!!!,the nurses have a hard time,when you start relying on agency nurses to support staff you will get good and bad ones.
The Zometa took over 1 hour to come up to the ward !! They had the bloods from last Wednesday,I do not know the shelf life of Zometa but its no excuse for Pharmacy,its the same old,nurses having to go and get drugs wasting there valuable time.

I do not think the nurse realised she would be doing the introduction to Rividimid and in theory she should not have done it,not much different from thalidomide ,except less tablets,dose age seems strange 25m every. Other day I take it that it low dose for first month!!!.
I did send in a complaint after Velcade,the main question was non Co Operation between departments,I had a reply,but the question was not addressed.
This lovely new black notebook,has times dates and all important info in,it lacked names,but I will make sure in future I get names thank you for the tip David.
Slim has a very unusual surname,so it could go against us or for us,lethargy concerning staff is understandable ,given the unco operation of different departments,plus wasting time having to collect drugs.Eve

[BADGERParticipant]

Gosh Eve

you and Slim have been though all this before it must seem like you are always going into battle at your hospital this is bordering on the rediculous I dont suppose you can change hospitals even if it is a journey
it might be better for you I am thinking of you both i just hope things get better
Love Jo x

[eveParticipant]

Hi Jo

Not feasible London,86 miles either way,the question begs, Why should we,surely they should get there departments in the hospital on a good operational level.

I have a bad habit of watching,there I am sitting waiting for Slim to be hitched up to the saline ,cannot say treatment has not started,then we wait and wait and wait,then the nurse goes off to get the Zormeta,I have heard they send a batch a time,and have to wait until batch is finished before procuring more,also told its pharmacy,but you do not expect to g o in for a 3 o clock appointment ,which should take around 30minutes for Zormeta then 15 min for introduction to Rividimid plus tablets,and be walking out of the door at 5.45pm
I think I have made my feelings very clear,you do get to a level were it becomes unacceptable,if this is the first cycle,it will either improve or spiral down to an unacceptable level,being deaf in this situation is an asset .watch make notes,timings are so important,saline drip pinging away with Slim pinging in tune with it for over 20 minutes,I actually felt sorry for the agency nurse,Slim and his Dex is not the best combination.

How are things with you Jo is it once a week or twice for Velcade,you must be near the end of the course,how are things going,with being in a London hospital I suppose bloods and Velcade are coordinated ,how long does it take????

Let us know how you get on Jo.Love Eve

[tomParticipant]

Aww Bu>>er and I know I spelt it wrong 😉
That Note book of yours is gonna be full 🙂

Love Tom xx

[DaiCroParticipant]

Hi Eve,

I know you don't suffer fools gladly so I will take your support of the agency nurses 'Good/Bad' with a pinch of salt because looking at the processes and procedures (nothing to do with the pharmacy) I have to agree with David that your service was utterly appalling. :-/

I hope you follow David's advice and get in touch with PALS… I had a chat with one of its advisors in a hospital Coffee Shop a couple of of years ago and she said that she and her colleagues were the medical arm of Citizens Advice… and I concur. 😎

Regarding Slim's surname I think we can safely discard something along the lines of 'Ahmalak-El- Marakim' given Slims army service but I believe that a safer bet would be something akin to 'Petr Czszepanski'. :-0

I wish you both well and hope that Slim is soon feeling well enough (after your period of force feeding) to seriously enjoy some time away in the camper. 😎

Much love… 🙂

Dai.

[eveParticipant]

Hi Dai and Tom

It's lovely to hear from you both,

Tom my spelling is bad and my grammar is none existent,between the agency nurse and me Rividimid was pronounced,in 10 different ways,!!:-P bit like your vodick, or vodka when you have had a few. :-S

Well Slim had no temperature but did he sweat,if I had to blame anything I thought at the time the Zometa was not flushed through with saline enough, usually 2 1/2 to 3 bags used,have to see,but for the last 4 visits he has had agency staff.Must make a note of that. !!! The poor women ! Took one look at Slims veins,her face said defeated before the needle went in, have to start using hot water bottles again. How are your arms Dai?.

Slim is not he easiest person on the dreaded Dex ,he had a slow build up of 10 m for 5 days,and he is only on 20m during this cycle,but that also applies to the Rividimid 1. 25m tablet every other day,I am assuming it will increase in the next cycle.

Dai have you been having a rest from us!!!, I understand as Slim starts down the same route,it does make you feel if you are joining a different roller coaster!!:-0

How are you getting on with the Rividimid ???

So nice to hear from you both.Love Eve

[BADGERParticipant]

Hi Eve

all goes well with velcade but UCH have decided after next week I will be put on an every other week regime do a 9 cycle regime I only have it once a week and this has suied me i have it sub cut so after long waits for blood tests two mins and out I am now on EPO so no cycle races for me!! as the treatment was destroying my Hb and I was needing blood transfusions every two weeks but EPO has solved that apart with the glich of pneumonia I have kept fairly well so we will be going to Dorset for a week on my week off yippee!! havn't be away for agaes I hope Slim will be good on Revlimid I know a couple of people who are doing really well on it
Regards Jo x

[eveParticipant]

Hi Jo

I hope the weather improves before you get there,I think we all need a little sunshine in are life's ,lots of vitamin D.

You were off every were before you relapsed ,but when you are not feeling ok you just want your own bed!!:-)

We took the van down to the beach,didn't,t do much just sat and watched the world go by,a friend baked a cake for us,so cake and tea were the order of the day,later on cooked Slim some bacon and eggs,people we new,popped in to say hello,opened the wine for me a bit early:-/ in France I would not even have thought about it,as everyone drinks in the day,but slugging wine back in the afternoon on the beach seemed a bit no no!!!!!!then I thought what the hell,if Tom was around it would be Vodka..

Must do it again soon. Love Eve

[tomParticipant]

Hi Eve

Me spelin ain t that goodeither but am sore you no what am saayin and that's me not on Vodka tonight 🙁 as am up early to get to airport did I tell you we the "Old Woman" and I are off on our Holls 😎 lets have some of that sun on the back of me fat neck Lol

Take care and will catch you all in about ten days time
Love

One Hope I don't Burn Tom Onwards and Upwards to Menorca 😀 xx

[eveParticipant]

Hi Tom

Well I hope this gets to you before you start your holiday,as its 3. 45am it might!!!

Go off and have a wonderful holiday,and tell the old woman to have a rest and enjoy some sunshine as well8-)

The grand kids can have a rest from you for awhile .love Eve

[HelenParticipant]

Dear Eve
I'm hoping things pick up a bit for you 2 once your big black book gets going!
I had zometa for 2 years, infusion drip of 4 mg in 100 ml, no other flush through needed. But advised to drink lots on zometa day. On a good day whole procedure was 30 mins, 3 hrs on a bad day. Bloods and bp all done at same time then down to clinic to see doc, this was in our supportive therapy unit.
Now I'm going twice a week to the chemo day unit for a blood sample, BP and an injection of Velcade. This takes upwards of 2 hours each time. When you add in the parking times it's an afternoon. There is approximately 10 minutes of contact time with a nurse.
I've kept a diary of my appointments so far and have sent it to the powers that be. I'll be very cross if there are no changes while I'm going!
Has Slim not been having Zometa before this?
Love Helen

[eveParticipant]

Hi Helen

I think your hospital is spoiling you 2 hour visits;-)for Velcade,I wish!!!!! see doctor!!!!,the only time you see one,is in A@E.I think Slim saw one once when he had pains in his scrotum,side effect of Velcade,needed scan.
Slim,s time was 9 hours once,you northerners don,t know your born.LOL. private rooms,Myeloma nurses,next you will wanting waitress service.

you have got to laugh.I was busy telling an agency nurse,why Slim no longer took Omeprazole,he is skinnny with man boobs which were very painful,this drug was the problem,she goes off 3 yards and explains to doctor in a loud voice,who thought it was funny,the rest of the patients kept there heads down.Good job neither Slim or myself are shy.

Slims been on Zometa for 2 1/2 years,they just changed it to every 2 months when it all came back,so they have said every month from now on again.
I now try to organise his appointments,so everything takes place on the same day.

The hospital changed his consultant appointment,so we went today,all for nothing,he did apologise,so I took the opportunity to ask questions.

As he is no longer on trials,apart from contacting unit when ill,who is my point of contact????? answer I am sure Trials nurses will help you.!!!

IS there a Myeloma Nurse I can contact?????,answer no we do not have one,but a recent appointment has been made,I do not know her name,she is responsible for haematology patients,!!!!

Did you read Jeans post from Cornwall her hubby has it administrated at home!!!!what am I doing in SEKent.

The same princible stands Revlimid quantities will not be made up until bloods plus urine function comes in……………..plus his body>:-(

Thanks for the explanation on IgG and IgM, doing my homework on this plus another issue outstanding,I might just E Mail you to pick your brains.Love Eve

[HelenParticipant]

Hi Eve
Sorry I didn't reply sooner, missed it! Getting very tired now had to take half day today, might have to go off sick soon.
I wish I could say we were spoiled up here, but no, I just try to fit all appointments in one day and go from work, but the Velcade and pharmacy has me beaten this time! Tomorrow I'm going for the whole afternoon and will make scones in the Maggie centre rather than waste my day!
Home treatment, now there's a novelty! They have that a lot in the SW. Not here.
Love Helen

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