[eveParticipant]

Hi Dick

I know,I can always remember thinking,I wish I had known that at first,we try to cram all this information in and it is hard,Slims consultant was very good at answering my questions with ” don,t worry about that” hindsight is a wonderful thing! And the best place to come for knowledge is here on this site,there is always someone in front of you on this journey,even for Slim.

Although what is going on at the moment is not nice,with so many areas of different pain due to many complications,if you consider he was told no more treatment just after Christmas,he is still here,and has no intention to die.
The palliative team send there consultants out,plus teams,they have completely under estimated Slims will to live. Eve

[eveParticipant]

Hi Bryn and all the other new comers that have joined this post.

We all approach the news of Myeloma differently ,we were just glad we new what it was!!!!
Then you get all these books and you are having to make choices about things you do not know anything about,you spend time reading a book,but it’s hard to understand at first.

As Dick says ask questions but if you do not understand the Myeloma what questions do you ask????

Ring the number the top of this page it’s free speak to Maggie or Ellen,they can help you.

Find out what Myeloma you have although it’s treated the same it will give you some insight !! Ask for all your scans or MRI results find out were all your damage is.
This is a big learning curve and knowledge is the key,if you have problems with your consultant change consultants or even hospitals,many consultants specialise in Myeloma my advice would go for that one.

Trials offer you medication you cannot get on NHS,,learn all you can before you make a decision !!!!

I cannot give advice to people with young children but there are a lot of people on here who can,join the under 50 you are allowed to swear on there lol.

This is a roller coaster with lots of highs and lows.the are statices on Myeloma if you want to know about them ask the consultant,this is treatable but as yet no cure,but who,s to say it might not be long or just round the corner.

I say this with the knowledge that mu husband has had Myeloma for three and a half years and is now coming to the end of his journey,with all it’s highs and lows,we never gave up hope,and we refused to worry about tomorrow and spoil today.

I wish you all a good ride on this roller coaster and as Andy says ever day is a gift.Eve

[eveParticipant]

Hi David

Yes someone is trying to kill you!?, your body!

When it gets to this stage do you find it’s just something else to add to the list????
Slims was a SNCO Richard so that explains every thing,cannot see him repenting he is to stubborn!!!!

His own doctor came to see him yesterday as his dosage in his driver is very high,plus backup medicine at home is high,then I can call on the district nurse night or day for an urgent injection, ” how are you Slim ? She says” he replied “I am feeling great ” she could not help but laugh, I watch people come and go,they all leave with a smile on there face.!!!

Any way SNCO do not repent!!!? They just never give up,you can hack it David!! Eve

[eveParticipant]

Please pass on my condolences to her husband and sons.

I would like him to know that although Eva had not been posting for some time,I always had her in my thoughts,the last time I heard from her was when she was in London having treatment that would go on to her second SCT,staying at a B&B,that takes some courage to be alone in London waiting on treatment,but that is what she had courage,and she wanted to enjoy life so much,it’s the highlands that will miss her,but I am sure she has left her personal marks in her paintings.

My thoughts are still with her.love Eve

[eveParticipant]

Loopyladye

Hi I do not usually reply without knowing some back ground,as this site is open,!!!

You are obviously going through a very hard time,and had to cope with a lot in a very short stretch of time,this can be very hard as it does take time to get your head in the correct frame of mind,everyone is going to tell you,you must look after yourself,but you will be very surprised how much adrenal you can live on!!!!

I am not going to try to tell you everything will be alright,but if he does get over this hurdle and lives to fight another day,you could have more years ahead of you,it has been done,and you will not regret those years,I can only say do not right hubby off,as long as he has a strong will to live,be there right beside him ,it will take him a long way.!!!!

As for the present,you must do what ever helps you,from counselling to pills if need be!!!
My own personal view is let your husband talk about anything!!! But make him promise to live as you do not want to loose him,let him make his choices with the knowledge he is not a burden to you,!!if you are crying he will think he is a burden!!!

So get some pills to control your emotions,make every day special,and do not worry about tomorrow and spoil today,if that does not work,give yourself a kick up the bum,except life as it is,all these organisations and experts,may have read the books!!! But this is your husbands and your roller coaster ride!!with all it’s ups and downs,yes scare,but you both can learn so much from it.

Andy would say every day is a gift,open it. So would I. Eve

[eveParticipant]

Hi David

Love ing it,grandfather in the nick. Lol

I could not dream of going in to my cupboard,would find I am associated with IRA Slim says I have the face and back ground lol.

Live is for living and you are making a good job of it!!!,so that’s what is important.

Best Wishers wishing Dai was around to correct everything,in a nice way!!!? Eve

[eveParticipant]

Oh my that’s awful!!!

I agree my daughter in NZ sold here house 10 percent deposit,done and dusted !!

My youngest daughter has had the chain broken 4 times,moving anyway! Does need up heavily .

Sorry for taking over post Judy,you will find in time you will make cyber friends,!!!?,Eve

[eveParticipant]

Hi Debi

No problem if you are going to Sutton!!!! We travelled every week by car,massive car park pay anyway even disabled!!!! If you use a wheelchair all the time tiger is a little bit of parking before barrier,after barrier there are four lanes of disabled parking,but as I said you pay,most it has cost me is £14 !!!??

I use to find it easier to go to last bay for disabled,there is a door that says radiology ,go in there walk through to lift 2 floor bud Flanagan unit,on the way out head for basement ,machine outside pay,go straight to car!!!!

Hope this is some help eve

[eveParticipant]

Ho Carol

You make me laugh!!! Thought that plane to ozz was this month????
Phi Judy2 sorry cannot help you,out of touch with new trials,try going into new trials on here,might be some help!!!!!

I can say this journey is like a roller coaster so many highs and lows,you learn to ride with the flow,you will get lots of help on here and also from Ellen and Maggie phone number top of page,hope you have a good ride.

Why worry about tomorrow and spoil today. Eve

[eveParticipant]

HiDavid

I can remember a few years ago,you getting everything ready just in case,the garden,with crocuses,and easier boarders,plus the old coffin job!!!! And look what you have done since,family tree,holidays!!!!

Just enjoy this month without treatment!! Make the most of the summer,the lump as you know can be anything!!! As for the operation,they must be confident enough to operate,were is that South African saying in all this,

Stay strong minded David,it will take you a long way,even when the body is letting you down.
Best Wishers Eve. Kick up the backside!!!!!

• This reply was modified 10 years, 4 months ago by  eve.

[eveParticipant]

Hi Andy

They say opposites attract !!!!!! I took a instant dislike to Slims views in 1981 !!!!!
Still together all these years,he makes me laugh!!! That’s my excuse.
Slim is a very determined character,in a very quiet way,when he says something like do not let them put DNR on my files,he means it,and expects me to honour his wishers no matter what my feelings are,and I do,because he ask for so little, and this is all about Slims choice of how to die. I cannot say I agree with a lot of things he wants as I have a different view on some things,but he trust me!!!

This means I have the battles with officialdom ,some times with family and odd friends,( they think I will not let him go ,and should except everything ) but it is completely against Slims Wishers ,I cannot tell you how many times it looks bad,yesterday day was one,this morning he is reading the paper!!!!!,but we have been here so many times!!!

He has such a strong will,it defies nature,but I would not expect anything different from Slim,cannot wait to see the district nurses faces!!!sitting up reading the paper, lol.

Love Eve

[eveParticipant]

Hello Sarah

My heart goes out to you,yet I will find myself in the same position soon although by a different route.

I have not been on this site very much,mainly some one said this site is about hope and it is,but there’s no hope left for you and me,I have a daughter older than Mark,but I could not imagine what it would be like to loose her,when I lost my grandson,that was hard as unexpected,you had not much time to adjust,so your grieving will be in the future,it’s a good thing that you believe it’s not the end of life together,if this holds you together embrace it,as it will help and guide you in the future.

I have found my self at peace with our situation,it’s not a subject we talk about much,we both know it’s not far off,but it’s locked away for most of the time,and we enjoy what little time we have left,

I can only say to you Sarah in the circumstances of trying to save Mark it was the best of bad options,he would not have been in any position to know or remember anything about it had he lived,my husband survived ITU and it did give us three more years,since then I have not worried about it happening again,as he did not remember anything about that time,so that must be some comfort you.

Slim has platelet problems,and the body is failing,amputation has not worked so the rest of his leg is dying,it’s slow and painful at times,plus other complications,he will die at home,but the palliative consultant is concerned that I might experience a death from bleeding out,I do hope Slim dies peacefully,

Neither of us want what is happened to us,but be strong Sarah that’s what Mark would have wanted,my love and thoughts are with you. Eve

[eveParticipant]

Hi Maureen

You did a good thing by getting a second opinion ,life’s to short to waste time with stroppy consultants!!!

If Andy can get 22 cycles plus some people get a lot more then it’s a good thing,cyclophosphamide knocks the cells but at a price???? Dex seems to enhance the other drugs like Revilimid

Good luck on your journey. Love Eve

[eveParticipant]

Hi Fiona

Two years is a long time in the Myeloma Bubble,time for new drugs to come on and advancement on ideas,never forget everything is just an opinion!!!!

The say you have to put your trust in someone,put your trust in each other Philip to make the most of what every lies ahead,and never never give in,and you Fiona to make sure every day is not sad and stop worrying about tomorrow!!,you cannot change anything,but if you have Faith in each other it will take you both a long way.

If you think to far ahead it will frighten you,lock the myeloma away as much as possible,and make the most of now,I wish we had done more,but you get scared to wonder far in case of infections, looking back I think Slim would have preferred to have had more quality time,than keep trying,but this is all with hind sight now,it is very much an individual decision
Plus you have young children and you never know a cure might be round the corner.

No one gave us the facts of high risk and non Secretor ,it’s not a good out come for trials or chemo as when the drug is stopped it comes back quickly,but that’s another story I often think if we had known earlier,would we have said no to treatment and just taken a chance,we would have had quality time all be it a small amount,instead we have complication from the treatment,
If you come to Deal let me know,it does depend on Slims condition as he is now on a driver under palliative care.

My best Wishers Eve

[eveParticipant]

Hello Stuart

Just popped in on Fiona,s post to say hello! We met at the Marsden by the car parking machine that eats money !!! Lol

Slim is now on Palliative care,the Velcade worked again,but blocked arteries were the on going problem,which resulted in other issues.

Sorry for taking over your post Fiona,hope is a wonderful thing just keep grabbing as much as you can,attitude of mind can take Philip a long way.

The children should have a lovely time in Deal heat wave weather expected. Love Eve

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