[eveParticipant]

Hi Husbandof

Well I agree with Dick about the guilt,but you must remember you are in a grieving process,for the life you had,and at this moment you cannot see any light at the end of the tunnel,grieve has three steps guilt anger and sadness,please do not try to pretend its not happening,because one of the things that can happen,is that you do not talk about it,for fear of upsetting your wife,and there might just come a time,when you cannot talk about it,believe me this can happen.

You are in the early days of Myeloma,so it is hard,it's so easy to exhaust yourself,the practical things can be seen to
1 are you claiming money you are entitled to??,this can help pay for a cleaner or some one to do what ever needs doing
2 has your wife got a blue badge and DLA,a must for hospital parking
3 are you accepting help from people who have offered it ?,makes sense!! You might feel if you can manage,but the more you refuse the less help will be forth coming.

Now husband of,you can moan,shout and vent yourself on here,because we either have done it,or many times felt the same way,just do not get me started on the dreaded DEX,Slim is stubborn but on DEX he was so difficult to live with,I could have strangled him myself,but the DEX,made him think he could do anything,I came home one day and he had moved the wardrobes out about 2feet,emptied a cupboard and put it behind the wardrobes,still trying to work that one out!!!>:-( he would get an idea in his mind wait for me to go out,I never new what I would return too.

Accept your life is different,and you will find it easier to come to terms with,stop looking back,and look for the light at the end of the tunnel.Eve

[ozzyParticipant]

Hiya Eve
I know exactly how you are feeling and I think its difficult for people who are not caring for loved ones with such a cancer like mm to appreciate how hard the day to day worry is.
I am Paul's wife Gayle and I think being a carer is very hard. We are on this rollercoaster of emotions and I personally feel very bitter what life has thrown at me. I am 53 and Paul is 59 he has had myeloma since Jan 2010 and it is now the children are more independant (still both at home mind!!)I constantly worry about him dying and feel bitter as we should be going on lovely holidays and planning for our future but for obvious reasons we cant and I get envious of my friends and feel very sorry for myself sometimes.l always ask that question why us? Paul always replies why not us? Paul has finished work June 2012 as he was catching so many infections and this has worked as he is defo healthier but he gets very bored and is missing company as I work part-time.He has had one sct in 2011 but relapsed after 18 months has tried to harvest again at May this year but only managed half the amount needed so they are resting his marrow to try again later this year. He is panicking now how is blood is doing and we as carers have to reassure him whilst inside I a truly panicking myself.I have to make light of things for him keeping calm when temperatures go high when his back etc starts aching when he has pn in his feet. To add the pressure on I have been diagnosed with GMUS and the thought of it developing into MM and me having to go through all this myself is worrying enough!!!
Lets pray they find a cure soon.
Gayle xx

[eveParticipant]

Hi Gayle

May I first say how sorry I am that you have also been Diagnosed with GMUS,I know sometimes when I have been watching Slim having all this treatment,my thoughts have been no way!!!,but I am a coward!!! I honestly believe I could not cope with all the treatment,but I suppose,everyone feels like that but when the need must,you want to live.

I am glad I am not the only carer,who feels,that life has been taken away from me!!!,because even if Slim died,I would not get the life back I had,because he would not be there to share it,so we are both in this Myeloma Bubble together The strain of it all has eased,we know there will be no second SCT,or remission,just drugs,Slim had a blocked artery and since then has only been able to walk a very short distance,artery,s ok,we think it might be his hip,but consultant said chemo more important!!,this curtails are everyday living,so it's another blow i am no spring chicken,for pushing a wheelchair,and walking is at snail pace.
I am surprised over the last 2 months how I have adapted to a new regime,
I feel that we are on a downward slope,and once I came to terms with this,I found it easier to accept ,many friends have fallen by the wayside,and I find I am no longer upset about it.Still polite if I see them,but aware they don,t make the contact.usually,it's sorry I have been so busy,will phone sometime!!!!?,,it makes me laugh now.:-) it is surprising how you do adapt.

You sound if you are at the stage were you both do not express your feelings because you are scared of upsetting each other,!! They say you get half the remission time again ,have you asked them are they looking at more than 9 months,Gayle have you and Paul sat down and talked properly about going down this route,we tend to go into these procedures very green,and I do not think the medical profession are as honest as they should be,and because we want that miracle or as Mari says hope,we do not ask questions about failure ,so may be David has something when he talks about quality rather than quantity ,instead of looking for a miracle,enjoy your time now with Paul,I can only tell you I have a better peace within me,and Slim and I have not given up,just adjusted ,specially my life. Love Eve

[dawstepParticipant]

hello eve
just to let you know im thinking of you & your family.when i was looking after my dawn,i done everything that that she asked me to do.however, it was mentally straining.we do anything for the ones we love.i just tried to be strong,very hard at times though.we were always there for each other.

best wishes
stephen xx

[eveParticipant]

Hi Stephen

Thank you for your concern,as you know yourself,the practical side you can do,although physically tiring ,the mental and emotional side is very very hard.
I do hope you are picking up the pieces and trying your best for some normality for you and your kids,because that,s what Dawn would want. 🙂 Loosing Dawn,having to be mum and dad,even when the children are grown up,how is the job going less hours and more time to find your own space I hope.?
It,s there presence you miss,Slim was taken into hospital on Friday night and the house felt very quiet ,it came home to me,that this is what it is going to be like,little things hit you ,usually at the wrong time,it only lasted seconds,but it was upsetting. He has now turned the corner,can tell he is feeling much better as he gets very demanding.Did not need an infection when nuets and platelets rock bottom,but he has been responding to Revilimid Kappa Lightchains near normal,have even got use to pushing the wheelchair,my bat wings are turning to muscle ,plus my back does not ache so much,so it's doing me some good,
You look after your self Stephen,and look to the future,you do your best in this Myeloma Bubble,no one can ask more,you have to make your world a bit bigger,I know the theory ,but I also know how hard it is to do,!!!.Love Eve

[dawstepParticipant]

hello again eve
i am still trying to pick up the pieces.just had another knock back,my dad died suddenly a couple of weeks ago.my kids tell me im so much better since ive changed my job.i do feel alot better.i was talking to my mum the other day & i told her i feel like ive been abandoned by dawn.i know she didnt,but thats how i feel. i do still struggle at times.im still glad i changed my job.i dread to think what my life would have been like if i didnt.when slim was in hospital i felt the same when dawn was.nice to hear slim feels a bit better now.dawn had a wheel chair at first.i said to her shall we go & look at a mobility scooter,so we did.we went in to the shop,found a nice compact one.she sat in it,drove in the shops carpark.she had this big smile on her face.i can still see her face now.can we buy it,she said.so we did.she said it gave her a bit of independance.i would walk along side her whilst we were out together,couldnt keep up with her going up the hills though lol.she enjoyed that scooter.i shed a few tears writing this,also made me smile aswell.
best wishes

stephen

[eveParticipant]

Hi Stephen

I am sorry about your Dad,it's a shock when it's so quick,but at least you are there to support your mum,and understand how she feels because of loosing Dawn,the loss is the same no matter what the age.

Try not to bottle your feeling in,grieving is a part of death,no matter how much you you try to hide those feelings they will resurrect ,with some people it takes years to admit to them,there is no shame in feeling Dawn has abandon you,as you say deep down you know it's not true,Dawn would have wanted to grow old with you,and watch her future grandchildren playing,I think it's more the every day things,that have been taken away from you,but you are making progress just by deciding to change your job and the kids can see a difference in you,small steps but in the right direction.it is a process that everyone goes through at there own pace,I can only offer the advice,make you world bigger,when you were in the Myeloma Bubble Dawns and your world became very small ,it's time to expand it will not make you forget Dawn,just help you cope with he future.

I have been looking at different scooters for Slim,so many from a cheap Whisper to an expensive Luggie,keep hoping one will come up local cheap,Slim keeps saying he,s not paying for an expensive one,I can almost hear him saying I might not get any use out of it,but I am more concerned about weight lifting it in my small smart car!!!!,I should just go out and buy one while he is in hospital,that would solve the arguments,he is a stubborn b—-r,but that's most properly keeps him going.

Stay strong Stephen,make your world bigger,even if its taking the kids out for a meal once a week,what ever floats your boat,Dawn would want you to look to the future that she will never have,grand kids weddings parties all the good times.Love Eve

[dawstepParticipant]

hello eve
your right it is the every day things that i miss,so much.i do go out most weekends now but i still find it hard,with her not being there.ive lent dawns scooter my sister inlaw,she had a hip replacement.still not walking properley.the scooter broke down in to 4 parts.it all fitted into my vw golf boot.i think i paid just under a £1000.before i got the golf i had a peugeot 206 & it all fitted in the boot other than the seat.been nice talking to you.be thinking of you both.go on,suprise slim with a scooter.

best wishes
stephen

[eveParticipant]

Hi All

My Saga so far,Slim is out of hospital ,not great but doing ok having GCSF injections on M-W – F ,took him for blood test locally today,will know if GCSF injections has increased his blood levels,plus will know if potassium is any better:-0

Well I am refusing to stand still in this Myeloma Bubble,have bought another car big enough to fit,a scooter or wheelchair plus Oscar my dog,who,s not long for this world:-( plus shopping,just got to get use to manual controls again:-P

This is what I hate about the Myeloma Bubble puts you off making decisions!!!!,I dither a lot when it comes to putting my hand in my pocket,but it's done now,so mobility scooter here we come,I am hoping Slim will be feeling a lot better on his week off,and we have no more mishaps ,I dread that A&E department and it always seems to happen at weekends!!!:'-(

I have felt sorry for the staff on A&E but getting patients out of A&E and on to appropriate wards takes far to long,specially when the person has been allocated the bed!!!!:-S

I wonder why all hospitals do not have units were patients at risk are red marked to go straight to appropriate unit!!!!
We have no choice it's A&E!!!!!,so we bed block A&E seems wrong to me.!!!Eve

[dawstepParticipant]

hello eve
glad to hear slim is out of hospital.i understand your dithering over spending such a lot of money.i hope slim enjoys his scooter,im sure he will. i also understand your frustration with the nhs.we all want our loved ones not pushed from pillar to post.we want to get them settled in the right ward,not in A & E.

best wishes
stephen

[rosieb123Participant]

hi eve
im new to the forum but have been reading everyones posts for about two years now and feel i know you all. im carer for my husband who has had myeloma for three and a half years now, he was 45 when he was diagnosed. It's been such a hard journey he has had velcade followed by a stem cell transplant. His remision only lasted 9 months so he started revlimid but in june this year his levels started rising again and they added cyclophosphamide into the mix which seems to be working. the doctor says he will go back on velcade next and then probably a trial. he was very ill when he was first diagnosed he also had kidney failure. he has never really got back to his old self which is sad. We have eight children the little one is 7 and the oldest 25 and a little granddaughter who is 17 months and another one on the way. just wanted to say reading your posts have always encouraged me to keep going so thankyou Eve. Thinking of you and slim.
Rosie

[eveParticipant]

Thank you Rosie
I do not think carers have a choice,you just do the best you can,I can imagin how you must have your hands full,but it must help to take your mind off thing,I was one of seven,the youngest,so I know what it's like with a houseful ,but hubby must feel it not being able to do the things he considers his jobs:-(

Slim has been on CDR for 5 cycles,after being in and out of hospital every day since Saturday,he was admitted as in patient on Wednesday,his bloods are very low,and he has an infection,they cannot get his blood pressure to rise,had CAT scan ,which was clear,and today a BMB,So we might find out what is going on.
His memory is poor,so although he cannot remember the bad parts,when he has things like Rigor it's very scary for him,
At the moment this roller coaster is only going in the downward direction,but hope to have a few highs if he gets over this bad time.
Rosie I hope this site has given you hope,do not give hope up,no matter how bad things get,Slim has been in this position before,so we know it's possible to get over this hurdle.Love Eve

[rosieb123Participant]

eve
I'm so sorry that slim is so unwell i hope that he picks up soon. It must be so hard for you at the moment i hope you have the support of friends and family. your right about the kids being a welcome distraction i am so greatful for them but sometimes my heart breaks for them when i see glimpses of their fears and hurts about their daddy. we try to live life to the full and like you say always have hope. my thoughts are with you eve and i pray that slim will grow stronger.
Rosie

[HelenParticipant]

Dear Eve
I'm sorry to see that Slim is in hospital again. I just hope he gets back home again soon. How soon will you get the BMB results?
Love Helen

[eveParticipant]

Hi Helen

First how are you??,you must be on your fourth or fifth cycle of Velcade!!!,I know the Dex was playing you up,did you have the dose reduced or just gritted your teeth,and carried on regardless !!!,you should be showing some results by now,I hope the Velcade has done its job,what is on the agenda for you!!!.
I would do as many things as you can,we are just sorry we did not do more,this Summer I had so many plans,none were fulfilled ,every time Slim had a week off,his body let him down,at the moment he cannot adventure out,so doing my best to bring the outside world to him,it's his birthday soon,so arrangeing for family to come.

Slim got home yesterday,this is his third admission in a short space of time,two with sepsis,one for platelets as had to come from London,so done over night..
We have been told his BMB will take 2 weeks as bone and fluid taken,I know they must have some results from the slides,but they denied it,!!!!!!must think I was born yesterday,did not push as Slim was there!!,going to clinic to have blood test,as platelets and nuets not holding if his bloods are ok on Friday will start his 6 cycle of Revilimid ,his consultant is not about and clinic has been cancelled on Friday,!!!! So we have to wait until the following Friday to see him!!!,
So Slim has to go on Revilimid again,although we do not know if it is working!!! Plus we're is his consultant!!!!, I know he does not play golf!!!!

The dog has gone on holiday to one of my daughters,I expect him to come back in nappies,as his routine has been disrupted,he needs to walk these days to get his motions working, lol. I have also got a new cleaner who is excellent,so this helps on the practical side,have not found the time to collect new car,or order mobility scooter,went mad and bought Christmas decorations,so have decided to put them up and bring a little Christmas cheer into the home,.Love Eve

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