Hi Posie
Welcome to David and yourself,everyone is welcome on this roller coaster,patient family and carers,many just look in,some ask questions and are never heard of again,lots stay and try to help one another:-)
I tend to think its rather sad when people just stop posting,no one knows what has happened to them,some do not like to post bad news,but this is what this site is about the good and the bad. You will notice yourself people from Australia ,NZ Holland Germany,even Far East ,its not about we're you are it's about coping with Myeloma.
As good as relatives and friends are,it's only people who have Myeloma ,and Carers who know what this roller coasters about.,my husband had CDT. Then CDV ,then SCT all considered failed,and had started CDR,fatigue ,stubbornness ,is the order of the month,I hate the Dex more than he does,but it does give him an appetite ,:-(
Posie I hope you and David enjoy your ride with us ,it's nice to have people around who understand, the father of the house is a man who is ahead of most of us,but still takes time to help people,:-P
He writes and composes. Some lovely music, Eve
Hi Vicky and Helen
Vicky hope everything goes OK for you,just keep saying everything is going to be alright:-),when it wants to rear it,s ugly head again Myeloma does not hesitate.
As for the wine,it just feels different abroad,but i am also aware when Slim is hovering with a temp,about 38,I have to be able to drive to hospital,and a woman smelling of booze,is not a good case for putting info forward.
Helen your body is adjusting to the Velcade,I think when you have had one line of treatment plus SCT,it does get harder physically and mentally on another regime ,Mentally the Dex has a lot to answer for,have you thought about asking can you cut it down,or are you still on trials?????
Helen I have lots of questions for you,so I hope to send that e mail,but i will leave it until you are feeling better. Love Eve
Hi Lizzy
When any one is first diagnosed,the rush to just get on with treatment comes to the fore,but it will not help if other urgent medical problems are apparent,the experts will see first to the one that is most important.A number of people have had to stop treatment for awhile because of different illnesses,so do not worry about the Chemo side.:-)
I cannot help with your problem,but i do advice you to ring Ellen or Maggi,they might be able to answer questions,or at least put your fears at rest.
Lizzy this is a large roller coaster ride we are all on,and it last the whole lifetime of the patient,some manage to get off and have remission,but are very aware they could be joining it anyday.So take everything one day at a time,try not to look to far ahead,and try to make every day special even if it is in a small way,like a walk in the park.Eve
Hi Young Tom
Well you are right s+++t does happen,but everything should have been double checked I take it there is going to be an enquiry!!!!,
The only thing I can think of is a machine breaking down!! if this is the case,yes its just on of those things
I tend to think,when things go wrong,there is always someone in a worse position,it does help,enjoy all the food you love this week,put some fat on your bones,next week will come round very quick,evrybody must be in a position were there treatment has been put back,if it effected everyone,so its a lot of people effected,than plan ahead. good luck Tom.LoveEVE
Hi Dee
So sorry about your Dad,its a lovely picture of him,so treasure it,he looks to be a bit of a character, so I am sure you have wonderful memory,s,which will see you through the coming years.
Dee you are very young to watch some one pass away,take comfort in the fact he died peacefully,as time goes by you will not have any regrets about being with him,your mum needs you to be strong now,specially if your dads death was not expected.
At the moment you are expressing angry which is to be expected,just remember your mum needs a little calm around her, I send my condolences to your family.Eve
Hi Phil
How have you got on with your test for stomach and back pains???
The chemo takes a lot out of the body I think bowels and gut is the one that takes a long time to regulate it,s self. One year after SCT I still question Hubby on his body as I know he forgets things and it is an important marker to your general health ,so I keep on at him to take movical ,reason being it gets the gut working rather pushing waste through.
As you say summat or nowt, chemo destroys many things,hope you at least have peace of mind after test.Eve
Hi Maureen
Dai fooled me,should have known, (its the way he tells it ) 😛
Well you are getting organised !!! While all this is going on,do not forget,yourself,I know how hard it can be to take alittle time for yourself ,but you do have to find some time:-)
I hope it all goes well,Enjoy your meal out.Love Eve
Hi Angie
I remember its only me,the shock and not knowing if mum should know? Mum chose her own path!!!A year so soon,time passes quickly but memory,s stay as if it was yesterday ,
It,s really nice of you to think about us,and for you to remember people are still here living with Myeloma,things happen which no one has control of,you just make the best of every thing you have.
So glad family is coping with the loss of your mum,she was unfortunate getting another cancer ,it is known and one of the pit falls,but you have to make decisions which ever path you chose.
Make it more than one glass!! Life is for living so enjoy.Eve
Hi Dai
Dex has a lot to answer for!!!!!!,Slim had 40m when on CDT,so when he had pneumonia,his blood pressure dropped and hid the infection,hence all his problems,plus lungs scarred.
This time on CDR he has started on 20m with Revidimid every other day,each month it will be decided how much by his bloods,but as I said to the consultant today his bloods have always been good!!!!!.
wbc 11 HB 14.9 plate 70 neuts 9.2 creatine 150,as a woman my HB has never been 14.9,you can understand why they do not believe he has an infection some times apart from his plates at 70,a tiny bit low,
I do hope they keep him on 20 and not go up to 40,I do not think I could cope,with the devil of Slim on Dex,and the sad thing I think is I could be left with these horrible memories,he is a lovely man but stubborn at the best of times,but on Dex,you just cannot talk to him.
So glad you have picked up,the last few months have not been great for you,.Love Eve
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
Hi Terry
I have just come on in this post,must have missed it some how.
My husband has a consultant who leaves a bit ti be desired ,some times I look at him,and think after 2 1/2 years the relationship between patient ,carer and consultant should be far better than it it is,he had never had to deal with a weepy woman,or a patient and carer who does not understand the implications of this disease.
He knows Slim leaves all the questions to me,I can only assume from his culture,he does not like to be answerable to a woman,he does not want to deal with me,I actually wrote my questions down and politely asked for answers back in writing,still waiting!!!!
The answer your consultant gave I would have been happy with,he told you straight,and you know we're you stand,make sure you ask lots of questions,
My attitude to anyone who is like are consultant,is I do not care,I want the best for my husband,so I leave my dignity outside his office and pick it up on the way out. It works for me. Eve
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
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
Hi Jean
Lucky,!!!! That's star treatment,it would suit us!!!
I like thr Rex instead of Dex,Food free food,my you are spoilt :-S ,in all 2 1/2 years of going to hospital Slim has been offered food twice,most times I take banana,s in plus cans of fizzy drinks as he finds these easy, I can remember. Once he was admitted after. Being in A&E for ages, I asked had they some food because he had not eaten most of the afternoon and evening,the nurse came along with a pâté sandwich I explained he was NP so no pâté or any processed food,I found some weetibix for him!!!.
The high,s and low,s of Dex are many I was talking to my daughter today,she suggest I should write everything down,there is a book in there some were, it would have to be called Living With Dextitude. Love Eve
Hi Pat
I think treatment before Velcade varies depending on your hospital plus how good the person who is dealing with you.
I would like to see general ops done every time,treatment is administrated,they do general questions,are you eating!!!!but who looks at it !!!!
Slim had 6 cycles twice a week,and I can honestly say never had his blood pressure taken once,they did weigh him,asked general questions ticked the green boxes.
He,s just started Rividimid ,all though I said 3times he had a chest infection ,(you would think that would be a hint!!!) they did not,take blood pressure,temperature,but that's Slims hospital,they seem to have different procedures in different hospitals. Eve.
