[eveParticipant]

Hi Les and also Janey

They say grief has different stages ,the frustration of not being able to do anything,the anger that the death has caused,and the emotional side of coming to terms with everything that has gone on,some are able to talk about it many are not.

I do not think you can learn these things or get any experience until you go through a death of a loved one,so the emotions you are going through are very normal,but what will come out of your experience,is a lot more understanding in the future of people going through the same thing,

Les if you feel the need to talk about your Dad this forum is always here,but remember the good times,!!!

Janey you are still at the Why!!! Stage,your ex husband is like most men,general health!!!! There are lots of different symptoms,Myeloma is usually picked up in hospitals not the GP surgeries,by then,damage to the body is very clear and Myeloma is at stage 3.it does sound if your husband had other complications as well.

I can only say to you both,Myeloma can make people confused,and patients often can not remember much about there illness,so your loved ones did not know they were suffering,some times it’s harder on the person watching than on the patient,I hope you take some comfort from that.

Eve

[eveParticipant]

Hi Everyone

I suppose as I have been on here 3 years I am an older now,as some of the people who use to post,there partners or themselves have passed away,

I always use to reply to a new comer even if it was just a welcome,but a lot of general information has changed in three years,so I am out of date with new info.plus it really bugged me,when you make the effort and they do not reply plus all my news is going from bad to worst and newbies do not want to hear the bad side they want hope and knowledge that’s up to date!!!

May be wrong but I like to see and have some knowledge of the person I am speaking to,I remember when I first joined,Min telling me not to be shy and show my face???? It was not intentional I just did not know how to do it,in fact if I wanted to change photo,I don,t think I could do it again, it’s grey matter.

To me it does not matter if you are 30 or 86,we all live in this Myeloma Bubble and over a period of over 3 years,it’s the people on this forum who get you through the hard times,I also understand when people get remission,they lock the Myeloma away ,and go out with renewed vigour and enjoy life as much as possible.thats the way it should be. Eve

[eveParticipant]

Nice to hear from you Princess Fiona

My husband says my daughters are clones of me!!!!but I see them as children I am very proud of,so cannot complain.they hate to hear that they are like there mum. Lol

We had good news today,Slim is coming home tomorrow ,have arranged Slims new appointment at the Marsden,thought I had arranged with consultant locally a programme for Slims blood test and platelets to be done locally until appointment at Marsden,only to find he changed his mind,says he will not need platelets before the 17 June ,!!!! It’s scary.

Looking forward to Slim coming home,and the dog also,he has been at my daughters,.

Fiona,you will step up to the occasion !! Because you have no choice,you can only do your best,believe in your self at the end of the day you are the expert on your husband.
My fear was Slim would think he was making my life awful,and give up,you have to be firm,I told Slim if he gave up,because of me,I would hate it.
There is so much goodness that has come out of this situation,so plod on,Slim is one of the people that SCT has not given him much time,the future is getting better and better so keep buying time,as much as you can,.Love Eve

[eveParticipant]

Hi John

Without are lovely Dai it has gone flat,a great loss,.

Hope your still laying cement without to many aches and pains,may it go on for a long time,
Never asked you what part of mersyside do you come from,or are you a wooly back!!!!!
Eve

[eveParticipant]

Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and everyone’s point of view should be respected,but why post if you are just expecting people to agree with you,this site I thought was about information,helping people who feel they are all alone,plus just replying to say welcome,we can help you!!!!!
If you look off Topic I think you will find what promoted the friendly reminder?

Many months ago I said that there is no place on here,for people in the position of loosing there loved ones,I have since then always been in to minds about posting,as I said before this when people need support,plus knowledge as things go from bad to worst.
I would have liked to have known how difficult it is concerning many of the aspects we are facing now ,but most people just fade away,from this site,what a lonely place to be in,Sue said it when her husband was given 3 months to live,friends,niebours ,found the biggest stone they could hide under,the O/T tells my they hear of this so often,people just do not know what to say!!!,this is one place were you should be able to come on and be forthright,or say it as it is,with no offence ,and expect support

• This reply was modified 10 years, 5 months ago by  eve.

[eveParticipant]

Hi DXS and lovely David.

I think may be I should have said it’s your right to apply and even appeal a claim.

Except my apologies David. Lol.

This in its self is a difficult subject,on one hand you have all the negative press releases people claiming benefits!!!?, and the other side of the coin many people who need this help who are not claiming!because they will not apply.

When we first put in a claim for AA,my husbands attitude was,why bother the likes of us will not get anything!!!?,well he was wrong!and over this period of around two years!I cannot tell you how grateful I have been and so glad I made him apply!it was a fight just to get him to apply!I married a very stubborn man!!!!

So DXS and David it’s not just a matter of applying as you know,the might turn you down first time,you have to appeal,get the NHS or GP behind you,and fight,it is automatic if you have only 6 months to live,but also if you need help in any form,putting socks on????,you should be at least entitled to the day rate. You do have to think about what you are like on a bad day,when the missus is fetching and carrying for you,night AA is when you are unsteady on your feet,and need some ones help,all this will come with Myeloma,so worth considering

Slim lost half his leg this month,so I do not think now it’s so visible,we will not have anybody questioning his entitlement. Eve

[eveParticipant]

Hi

I do not think the dosage is the same for all patients!!! It is decided on an individual bases,for example my husband had his main chemo at half dose as he had had kidney problems previously,but they had regenerated to a fairly good level.

As for remission, numbers do not mean anything,!!! You have to go into this knowing all the facts and possible outcome!!.and also the fact that some hospitals have better results than others,also you have to take into account,the type of Myeloma you have,some are more treatable than others. May I suggest you go into back issues on this sight,if you cannot find them under a library section,contact Ellen,I am sure she will point you in the right direction,the number is free at the top of the home page.

Many people decide not to go down the SCT route,they save it for later,many for personal reasons like the wrong time,or children it’s a major surgery on your bloods,and takes around six months to recover,many people gets years of remission,many people do not,it’s a very individual choice,which only you alone can make,as a carer I refused to say yes or no to my husband having SCT,because if anything had gone wrong,I would have felt responsible !!!

My husband achieved 0.00 myeloma cells after 100 days,but it came back within less than 6 months,they say you get half the remission time second time round,so for the last couple of years,it’s been treatment,or wait and see. ,so not good for us.in this time he has become none Secretor plus I consider him high risk,meaning as soon as he stops treatment it comes back,he does not qualify for trials,consultant reluctant to ask on compassionate grounds,plus lot of damage to cell growth.which in its self causes extra damage to different pats of the body,I would have loved to have a crystal ball 3 1/2 years ago.

Knowledge will power and hope will see you through your journey,enjoy something about everyday,and be positive and look for the good in day to day things.Eve

[eveParticipant]

Hi Maureen

Velcade takes a little time to get going,so try not to worry,light chains,can vary,we no longer go by light chains,as they did not show a true reading after Thalidomide ,they read normal,but BMB showed it had gone up to 80 percent in bones.
I now tend to go on how Slim feels in himself then wait for BMB results,his has gone down to 10 present in bones,but as you know,we have extra problems.

At the end of the day,you will become an expert on Ian,so use you own judgement,Love Eve

[eveParticipant]

Hi Sharron

When you are ill and trying to come to terms with everything it’s hard to be told,”sorry you have not got Cancer we cannot help you”. Did you laugh or cry?????

I would go to your local CAB,they have experts who will help you fill in the form,get a letter from the hospital for support to your case,jump over the first hurdle,and appeal if you fall over!!!!

They do not make life easy!!!
Red tape and paper work,I think,that they make life difficult to make you go away,just my opinion.
Have been sitting here this morning,phoning,and getting deliveries ,fro my husband to come out of hospital,wheelchair is the biggest problem at this moment,they will supple one weighing 18 kilos,husband weighs 68 kilos,and they expect me to be able to push him,up and down a ramp,to get out,65 with bad back unable to lift 18 kilo in to car,plus ramps are heavy,good fun,will have a 4 week wait for assessment and delivery of a lighter chair.

I have had my moan,Eve

[eveParticipant]

Terry

I did say it takes nothing from you!!!,believe it or not we are on the same roller coaster with the same problems,yes we are old age pensions and you are a young man with a family.

You would be very wrong to sign off from here,because we all understand your position.

I am sorry you find my opinions hard,I was just trying to explain it from the older persons perspective,and I do understand it from your perspective,there is no apology needed,financial it’s hard on everyone,and I would be the first to say take every penny you can get this is your right,
We should not have to jump over hurdles for financial support,or hospital treatment,it’s just a sad fact that we do.
Why not join the under 50 were they could give you support plus many have young children.Eve

[eveParticipant]

Hi Everyone

I felt compelled to give my input on this,and I can tell you it is so annoying trying to get on line,!!!!

Terry let me explain,when you reach 65, you are entitled to very little,everything except attendance allowance,is considered by the amount of money in your bank account,money that you have worked and saved for your old age!!!
Attendance allowance,is given for personal care,washing dressing and the need for some one to help,I’d you have a career who is of retirement age and gets a pension you do not qualify for careers allowance.

We spend an awful lot of money travelling for my husbands treatment,I can say with petrol plus food parking,it’s around 100 pounds every week!!!
I do not have to tell you about all the extra that are involved,my husband is in hospital,and money is just seeping out ,he needs a chair that is light enough for me to push,as his bottom half of his leg has been amputated,side effect from Myeloma,more money!! I could go on,but I think you get the idea. I think what DXS is trying to say,is after 65, you have paid in to a system for 50 years,worked all you life,live on a small pension,and if you are lucky,have a bit of saving,and you find no help is fourth coming!!! I think we are lucky because we do get full rate AA,many get nothing .

It takes nothing away from you or your claim for pip or dla,but why should it be different for someone over 65 ??????
My husband worked for 50 years,24 as a royal Marine commando ,serving his country,never had a prescription until he was 60 ,so yes I can understand DXS,statement,At the age of 69 he has been written off at the local hospital,it’s either money or age!!!! So we travel 86 miles to Marsden and 86 miles back.as no treatment at local hospital.

So yes Terry you are lucky,no offence ment.Eve

[eveParticipant]

Hi Everyone

Thanks for your best Wishers ,we will make the best of what ever time we have,consultant from Haematology has not been near us,although he was in on Thursday and Friday,his off ice is across the corridor from the ward Slim is in. I was told decisions would be made at a meeting and they would come and see us,I waited all Thursday and Friday,no show.So I am not holding my breath.

Slim is doing great Minus half a leg,he is completely looking after himself,plus doing transfer over to chair,pushed himself to cafe and had a bacon butty,gets very tired by the evening,only problem we have now,is finding the right ramp to get him in and out of the flat,plus shower at home is a problem,but I am told it’s the start of social services financial year,so we might be lucky.

Helen your last paragraph sums up everything Slim and I Feel,and I don’t think people realise it until something like Myeloma hit them,we are just great full that he is alive and recovering so well.you have the right frame of mind Helen and it will take you a long way on this roller coaster.
This is one of the reasons I posted,to give people hope,trust your judgement,plus in my case follow your partners Wishers. I was told by a doctor who brought up the subject of DNR,that in the end we might have no choice,I told her,no matter what Slim would come home.

Good luck to you all,and Jean carry on cruising Love Eve

[eveParticipant]

Hi Dusk

Well you have that right sceptical,but that’s my right too,it’s nothing personal!

I am aware it might of happened anyway,but even with a 30 delay,I have had a personal conversation with the doctor who was shocked. I told him I should have had a bet with him,I also consider it’s my fault as I new what it was,instead I said we will soon know when it turns blue,but because the blockage was in the ankle it was very quick. There is no animosity ,except he saw me as a fat little grey haired lady and did not listen,when you are 65 you are considered to have one foot in the grave any way!!!! Unless you look like Joan Collins.

I am also aware,if it was not this it could have been a number of things at this Stage of Myeloma,but it is my believe it’s up to the patient to choose,with all the facts known,Slim chose,I fight for it.
At the age of 65 I have some experience of death,so when another young doctor says his pain at home will be controlled,I asked how much experience had she had of people dying in there own homes,no reply was fourth coming.

I don,t want to dwell on this I was just explaining what happened,we have jumped that hurdle,and now look forward to enjoying some summer,and hoping we have the Haematology on bored,locally.
Dusk if we ever new each other I am sure we would sit down with a glass of wine and put the world to right,the only difference is opinions plus I have the courage to show my face,and take on board other peoples opinions,no offence. Lol.
No time for politics these days. Sending you my best Wishers on your roller coaster ride.Eve

[eveParticipant]

Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also try the American sites as I find Myeloma Beacon very helpful and up lifting although they are way a head of us on treatment for the mass of Myeloma patients.might be useful to you.

I know I am having difficulty with access to this site,so other people must be having the same problem!!!!,so do not post,and my husbands journey on this roller coaster is on the way down ,so it’s all bad news,not good for people who need a boost and have just started there roller coaster ride.

SCT is doable as are lovely Tom would say,from a carers point of view it’s not nice to watch a loved one feeling so rotten,but it’s only for a very short time,they knock your nuets down to 0.00,give you your SCells back,infections are dealt with,then a small period when you feel really ill,then you start to recover. If you go into previous post,some people have done a day to day experience of it,the only one I can think of is David, SCT is an every day thing,treat it as major surgery on your bloods,so expect a slow recovery period.

Anyway a warm welcome from me,anything goes on here ,we are all on this roller coaster ride,so know how you feel,with all it’s highs and lows,it’s a very lonely place when you are riding alone.

Keep in touch. Eve

[eveParticipant]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

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