Hi Terry
I would say who ever did your first BMB was an amateur ,my husband has BMB every 2 months now ,it takes about 30 min,and his attertude is its bearable,except on one occation,when he said,it was a young kid she bxxxxy hurt.
Low platelets is part and parcel of the course,doctors only seem to worry about them when they are under 20,it is your HB that's way off,that is causing fatigue ,but at least you know what is causing it. My husband bloods are not bad considering his condition,exstream fatigue,lots of concerns about his condition,but no answers,sent home ,Monday back to hospital,to start 3 cycle of CDR.
I question everything, as good as any consultant is,he has many patients,as a carer and the fact that the only way to tell about Slims Myeloma is BMB,I have to rely on my instincts, unusual case he might be,but it's us who have to live with Myeloma.
I expect we will be heading for A&E before to long ,I told the consultant I will do my best to keep away from A&E in August,as all new interns ,ahaaaa.,the picture of the scream comes to mind.Eve
Hi Andy
Well that's good have you been on Toms vodka:-P ,CDR doe not seem to suit Slim,he is not well at all done 2 cycles on half dose and consultant wants him to start third,although when we went in,he said now you tell me why your husband looks so awful,felt like saying I,m not qualified ,but I was a good little girl,answered all the questions.:-D
Slims bloods hb 11.6 WBC 1.3. Plates 58 nuts 0.5 kt 2.8 phosphate 0.6 as HB not to bad starting to look for anything that is causing the fatigue.BMB 2 weeks tried to get a quicker one,but no.
Any way Andy have a lovely weekend,enjoy the beer. Love Eve
Hi Dick and Fiona
Thank you for both your comments,this disease is hard on all members of the family. What I was trying to bring out on my previous post,was the silence,when anyone starts out on this roller coaster,everyone has to be optimistic ,there is every thing going for a cure or long remission,as Andy said.
But there comes a time when you realise ,the roller coaster is having more lows,as Sue said another chemo and another chemo,and Slim will be first in the queue waiting,I do not know when carers begin to accept the change,may be because I have immersed myself in a Myeloma Bubble.it has hit home sooner.
I have had private E Mails from people on this site,who understand what I am saying,my problem is most of the people have Myeloma them selves ,carers with the same problems are in short supple.
Dick and Fiona,do not apologise for your thoughts,express them. I did not specially agree with an extra post on Death and Grief,mainly because my thoughts were it isolated these people in death.,but I can understand that people do not want to read what the future holds for them.
As carers we just do the job required ,and saying that after spending all morning with Slim in hospital,they have just rang up,to say he needs potassium tablets right away, potassium is 2.9 ,so 30 mile round trip again for me.Love Eve
Hi Alan
This is just a welcome:-)
I was trying to get my husband on Muck 5 trials,but to no avail,Nice rules CDT,CVD, SCT and now CDR, at the moment on CDR,but because his Myeloma is Non Secretor ,so if I am correct will make him illegible .:-(
Looks if no compassionate grounds,and I can not see our health authority paying.
I must ask is your photo a recent one as you are looking very healthy!!
Any way good luck,I no there is a new person on here who is getting it through bupa,under Marsden,if you look through new comers or treatments you might find her there. Eve
Hi Maureen
Glad your taking part in the survey:-)
The doctor in the practise who diagnosed Slim after 6 months,left to join another practice,over 400 patients left that surgery,my original doctor who diagnosed incorrectly retired at 56 years old,I am sure he will not run out of money in his retirement,and have to manage on a government pension.
When my husband dies,I expect to live on half the amount coming in at present,in the mean time Slim is to ill somedays to even get dressed.Tomorrow a big day,hospital for9am bloods in clinic,big wheelchair race down hill luckily to the other end of hospital,for more bloods,asked could they be done in one place,answer no:'-( ,Then consultant.then I have to push the wheelchair back to the other side of the hospital up the steep incline,to car,like to think I have muscles but its all bat wings:-P
Love Eve
Hi Vanessa and Eva
I got a bit lost on Vanessa,s explanation!!!
Helen,had CDR then a SCT then was randomised for maintenance treatment,the computer decided,it did not matter if you had Velcade or not!,!!!
All on trials
I understand the NHS will not pay for maintenance until you have had CDT CDV and CdR,my husband has had the first 2 on trials he is now on CDR, after normal cycles he will go on maintenance until it stops working.
I can assure you that is the standed treatment set by NICE,because I have tried to get my husband back on Velcade,and the consultant more or less said no choice,an MP in parliament stood up and condemned the fact that Consultant can be prosecuted,for not following NICE procedure ,under the law of doing harm to patients,so unless you are on trials they have to follow NICE rules. eve
Hi Jean
Well it's very good news,concerning compression of the spine,I did no think it was that,as it happens so quickly,some one I know her husband was in the car,and when it came to getting out,he could not walk that's why ambulances,and boards should be used .
I hope the raidotherapy goes well,and it gives some pain relieve,try to take this opportunity to get some rest,I am a fine one to tell you this,as I know what you should do,but I find it impossible myself to rest,but your body needs to reccouperate. Eve
Hi Gill
It's the little things that set you off or as you say bite you in the bum. It might make you cry,but all those feelings come flooding back,and it's the feelings that are the most important,but it's the knowledge,that he will never get on your nerves throwing the cutlery in the draw ever again.
If you could just bottle that emotion,and smell it every now and again! It would help in your grief.
You do sound as if you are coping well,Tina,s idea of joining her private group for people who have lost there husbands seems a good idea,my daughter is in a private group on face book for people who have lost a child,worth thinking about.
Love Eve
Hi Sara and Ellen
Spoke to Sara today,so mine is done,I hope all of you looking at this take the trouble to give Sara some help,as the need for doctors to be aware of Myeloma is very important,and it will make a difference.
POST IF YOU HAVE DONE IT. Eve.
Hi Peter
Some people have a reaction when they stop the dex,your body is not use to steroids in such high doses,or the dex could be hiding an infection in your body,as long as your temperature stays normal,if it goes a little high,paracetamol will bring it down,I have a blood pressure machine,I think it's good to have one,if you blood pressure goes very low,and I mean very low,you have something going wrong,make sure you do 2 arms plus standing up blood pressure,.
Slims blood pressure hits the deck some time with a pulse rate that is above average,so do ops every few hours when this is going on luckily it is not a regular thing,Slim has reduced Dex because of an earlier blip .
You should get a number to ring unless they have changed the system,usually,you can ring the unit,if its out of hours,there is an emergency number,but since this introduction of 111 aim out of date.,I had to ring 111 recently and it was awful,after many phone calls and hours later I had a doctor out,ambulance came within the hour,luckily a vascular team was on call at the hospital.
Hope this helps Eve
Hi Kim
Thank you,I hope you do not mind me keeping it short,I wish you well to.Eve
Hi Jan
Thank you for replying,I did read the story in the Daily Mail,but not his blog,so it's on my list,thank you.
I must admit it never crossed my mind in terms of photo,s specially my parents and family photo,s,and yes you are right,we have no children together although we have been together for 33 years,my own children 3 girls look on Slim as there Dad,but unfortunately his own daughter,although in sparing contact,has no interest in the whole thing,although Slim is her last living blood relative,and has no family of her own.it,s something I cannot put right,and I have tried,and seem to make things worse,so have stepped back,and hope they can solve the differences before its to late.
On the practical side a lot of that is for the future,and I do have a working knowledge ,but thank you for your thoughts,even though Slim was in hospital for 22 days at one stage,I nursed him from 8 to 8 ,the standered in ITU was excellent one to one,but I still did his personal care,but when he moved to a ward it was horrendous .
I have stocked up on pillows as his bones are painful and rub without being cushioned,he gets out in a wheelchair,but he is reluctant to have a buggy,I do understand,but I am no spring chicken with my own health problems,for pushing wheelchairs.
Jan I think you have hit the jackpot in your last paragraph!!:-)
Slims memory is in pieces,so all this time I am thinking,he does not realise how ill he is,and he does,we have been so busy trying to protect each other from acknowledgement pain and stress,and both of us realising time is no longer on are side,he now reads what I write on this forum,first he did not want to know,but now although he has lost the skill to use a I pad mainly because of his memory,he reads the posting,but alas he cannot concentrate for any length of time.
I will say one thing Jan,because of all the distress at the beginning ,,it's hard to talk about it for fear of upset,any good nurse will tell you,it's the patient who has to ask the question,or open the conversation,although I am upset,it's been bottled up inside me for so long,it's a relieve to have it out,my children know how we feel,so they are on board to help with are situation.
So to me that is all good.
As for the forum,my post does not fit into any of the titles ,and if I am honest I do not think my future post will,the consultant is all hunky dory,but common sense tells me 6 months remission chemo s not working,Slim is going through the motions,but like anyone he wants to live,and he is a fighter ,and stubborn as old boots,he is a terrible patient,they throw him out of hospital as quickly as they can,also I do not want to come across as someone who is always moaning and complaining,and this is what I feel recently ,I also think there are a lot of people who feel exactly the same as me,who give up posting on here,for the same reason,Andy explains it far nicer than I can,I am far to blunt,or as Dai says I do not suffer fools gladly .i need things to be more factual,but do not have the grammar to flower power the writing.
Jan you should write more on this forum,you have lots of common sense,and have the experience of dealing with a young families needs..I wish you well. Love Eve
Hi jean
We managed to get away before Slim started Chemo,but he was to ill and had to come home.:-S
Slim has gone down hill,I have posted in carers section,so I won,t repeat myself,all my games vanished off lap top,and new scrabble game is going,but it looks different,just do not have the energy to concentrate .
Good to see you are both fine.Love Eve
Hi
Have you phoned Ellen on the free number of this site
Have you got your dads permission to find out what is going with consultant.
These are important things,may be your Dad has chosen a pathway you do not like,he may not be prepared to tell you,until you at least get his permission to know what is going on,you will not get any were.
I suggest you ring his consultants secretary ,and see if you can speak to him,or the nurse who is in charge of him,make sure you ave your Dads permission. In writing other wise you are wasting time.
There is the data protection act,and unless you get something in writing you will not find out anything.
The older generation,sometimes want to handle it themselves ,does your mum know anything,
I wish I could be of more help,the only other thing I can suggest is be there when the nurse is due.Eve
Hi Sarie
Just a quick welcome,
Confusion is often a first symptom,once they get him on track you will see a big improvement.
It could be a number of different things,but blood or urine first shows it ,if right test are done,bone marrow biopsy confirms it.
In the mean time your father is in the best place for treatment. Good luck Eve
