Hi Sarah
She is lovely Eve
Hi Jean Tom and Min
Thank you for the advice about the tooth,Slim went to the dentist the other day,was called in and sent out to fill in forms on previous illnesses and medication.in that time 4 other patients went in as slim was filling in forms.LOL.
Went in needed tooth extracting,sent to hospital for xray ,these days they give you your own CD to take back to dentist,already decided she would not touch him with a barge pole,with his medication,mention Velcade even in a different hospital department,they will not touch you,because never heard of it and mixing medication.
I have been told by the staff giving chemo I know more of the side effects of Velcade than them,THANK YOU DAI.This is were this site becomes useful,it keeps you up to date on things like this.
Do not know how long he will have to wait for tooth extraction,think paper work has gone to consultant.
So wait and see love Eve
Hi Everyone
I have a word,that I think is a good thing on this site the word is
OPENNESS Leaving ESS
on looking at the word it looks if it is spelt wrong,may be it,s because its a word not used very often.Love Eve
Hi Sue
Do not give up,you said your self you both have been in this position before not just once,so I would agree with Bridget,Ask for second opinion.
I know it is Michael and your decision,but he would not be here today if he was not a fighter.
I wish you well what ever you both decide Love Eve
Thank you everyone for your good wishers.
had last Velcade today,so BMB next blood test and Zometa all before Christmas,and one tooth to be removed along the way,sounds a lot but it,s less than we have been doing.
No marathons yet Dai,sleeping for England in the day awake all night,normality will be a bonus,what,s normal:-P I think I have forgotten. LOL
Will just be grateful for small mercies a better Christmas than last year.
Love Eve
Hi mari
So sorry to hear Steve, back on the roller coaster it is funny when you hit it again when Slim had his CTD and we went to see consultant,and he told us it had not worked in fact got worse we were both very calm,strange feeling,may be you get past the tears and anger first time you are told.
Velcade!!! its worked for Slim from 80% in bones to 10% in 4 cycles has it twice a week,2.3m.has had 2 more cycles. last day today until BMB and see consultant in new year.we can not tell by bloods or kappa light chains any more ,Slims blood results have always been great so its a bit of a bummer having to have BMB this will be his 4th in less than a year,but if needs must be!!!!!As Bridget said we now feel BMB is the only one to trust.
Velcade only takes 3 seconds to administer but because its not subcut,it takes 20 min altogether,you have blood test then amount decided,unless on trials it can be reduced if side effects are to much,Slim,s only side effect is lack of sleep,some heavy legs,he has had antibiotics twice while on Velcade,for chest,and testicles infection,one of the side effects a long way down the list LOL
There was an article on Velcade in the mail saying some batches of Velcade had been recalled,!!!!
Good luck lets hope the roller coaster has no steep curves Love Eve
Hi Christine
My name is Eve and i am a carer for my husband,first let me welcome you to your journey,and to answer your question,yes there are lots of people ahead of you on this journey.
As you must know by now people react different to different chemo and also people have different damage to bones.
my husband had 2 vertebra cracked plus tumour on spine,but his spinal cord was not compromised,he went through a bad time at the start and used a wheelchair for a short time,he is much better now although we limit walking to short and often.
The Zometa has worked wonders for him,from not being able to lift a small bag,he can do that now,although I do moan at him,because I worry he will do more damage to his bones,He has other damage as well on other pats of his body.
he is roughly at the same stage as yourself,he has just finished 6 cycle of Velcade and waiting on a BMB then consultant in new year.
In the long term I think you will fins someone on here will reply to you,as many people are further down the line have remission and have had bone damage. Regards Eve
Hi Everyone
It is lovely news at the moment my glass is half full!!!.
Slims been on zometa since February,the last six months every three weeks instead of four,he has not had many side effects from either CTD or Velcade.
This Christmas has to be better than the last,and this is the ,wonderful news he might just be able to sleep that is the only side effect that Slim has had,so we might just have some quality time together,instead of being passing ships in the night.love Eve
Hi Jenny
Good luck for today,I will not tell you not to worry,because we all do.
Hope you received the e-mail.!!!!!
Eve
Hi Min
How are things going with you,walking your dogs helps i do a lot of my thinking walking my dog,in Deal there is a great bunch of dog walkers there is always someone enjoying the sea air even if it is freezing cold.:-P
When Slim came out of hospital,I was the same as you,having to tell them what equipment I required,an OT told me I would not need a Zimmer and he could manage on sticks,I asked for her phone number so she could come and pick him up off the floor,as you might guess I got the zimmer.I found roughly the same as you,if you do not push,you will be left to manage any way you can,care packages just do not happen unless you stand your ground.
Looking back I am amazed at what we achieved,not only with Slim being so ill,and being so much better now,but because of his illness I new I had to make immediate improvement to the home,so bathroom became a shower room,new kitchen,new windows,and wooden flooring,and totally decorated,all this,and Slim being so ill.It showed me what I can achieve.I hope your year will be one of achieving .Love Eve
Hi Gina and Linda
I know it must be hard,but as a mum,I know the last thing you mum would want is for you both to be upset,celebrate all the lovely things about your mum,The goodness and kindness that gave her two lovely daughters,I bet she never told you but she was very proud of you both,mums the word, give your mum a good send off,all my love to you both.Love Eve
Hi Jenny
I received your e-mail but have no contact to be able to contact you,I know were you live,I do not want to put on an open e mail address on line.so may I suggest if you have the time,we meet for a coffee in town,I do walk my dog a lot on the sea front if you would like to meet up this is a good way,but if you just want to keep it to e-mails I understand,but you will have to give me your e-mail address through messages for me to answer you.Eve
Hi Jenny
I would agree with most of your comment concerning team approach,from what I can gather they have a meeting on Fridays were individual cases may or may not be decided on and then you have to fight your corner.
If you go in to my profile,you can e-mail me personally as I feel when you are dealing with individual consultants its better to come of this site.I will give you all the help I can .Eve
Today was a fine example of non co-operation.9am for bloods,home and back again for Velcade at 3pm,still waiting for Velcade to come down at 4pm,although I have sent a letter of complaint in,about non co-operation between departments.
we actually dread the first day of each cycle as chemo tablets are always late.,any way e mail me and we can chat. Eve
Hi Bridget
It did not seem a trauma at the time,more unbelievable,Slim was ready to let the whole thing go,but looking back he was already in a great deal of pain because he was wrongly diagnosed.
As I was not married to Slim at the time there was only so much I could do,his mum was a very difficult woman,she seemed to upset anybody in here path,but I felt the whole thing was awful,even her solicitor tried to rip her off,I managed to get him to sign the will over to my solicitor,but her solicitor still charged us £100 plus VAT for a signature ,it made a difference of charges for a small estate of over £500 pounds,as mine let me do all the ground work and filling in of forms saving on his time and cost.
Any way just getting off to hospital for bloods,Slim has not been to well these last couple of days,will just have to see how things go .Love Eve
Hi Everyone
I like the thought of bringing loved ones home,as a child I remember my nan in the parlour,it seemed very natural as a child.
A year September Slims mum died,we had taken a funeral plan out in case we were in nz,as he is an only child we wanted all the arrangements done in case we were away costing £3000.
She was in care and a few days before she died,I phoned her GP as to me she was ill,he came out,said to staff she was fine.She died on Thursday evening,there has to be an autopsy which was taking place on the Monday.
In the mean time on Friday I contacted the surgery plus Co-Operative funerals ,who said do not worry we will collect the body!!!!.WE had made arrangements to help my daughter,so went ahead with the plans,expecting the body to be picked up and cared fore.
The autopsy confirmed death,when we arrived home and rang the undertakers was told they new nothing about it,she had been left in Margate hospital,the doctor rang us on the Monday to tell us how well she was,it was unbelievable.when we went over the fine detail,we found the actual cost was only £2300,and as we had a months grace we could have cancelled and rebooked a cheaper funeral.
It took getting in touch with the head office to sought it out,the lady no longer works there,and later talking to friends,more horror stories came out,
So it is worth asking round about a good undertaker,costing as the last thing you need is a doctor thinking the patient is still alive although being informed she had died,and an undertaker loosing a body for 7 days.Then having a cheek to charge you,for jobs she should have done,I was just glad we were not in nz otherwise I dread to think how long her body would have been in the morgue.
It just might explain why I have a few doubts!!!! love Eve
