[eveParticipant]

Hi Jean

That’s all good news,Slim came out in a wheelchair ,I bought a light weight one in the end,which is easier to fold,took months to get him completely on his feet,but he did it, it was the best buy I made as it has been used on and off for the last couple of years.

If you can afford to retire I would go for it,you might miss work but you do adjust !!! Not the thing I visualised my self doing,but no regrets,I think I will look back in the future and it will be glad for these years,when you come close to loosing them,it put everything into perspective .
As David says never never give up.Eve

[eveParticipant]

Hi Maureen

This time last year,I bet you thought you would never get,were you are now????

How is the Velcade going??? Keep his feet warm,and give his legs and feet a good massage,there legs get very stiff and you can actually feel the tension relaxing in the calfs,so worth it.

Glad you had a nice break in the lakes and also met Andy and Steph,Love Eve

[eveParticipant]

Hi Jo

Slim,s not to bad in the circumstances . He finishes his second Cycle of Velcade on Thursday this week,hid bloods are taking a battering,has had to have platelets every week,but not blood yet,he has managed to fight off an infection,so that has not helped, three years of Myeloma is the best lesson you can have to become an expert on your husband,

Mandy will learn a lot from her episode and it will be easy to recognise in future,I always go by blood pressure,as low blood pressure and high pulse rate show infection,even if temp does not spike.

Fistula,!!! What are your kidney readings!!!,let’s hope it does not come to that!!!!
Barbara is also having problems after kidney infection,but on the mend now. Love Eve

[eveParticipant]

Hi Mandy

When you go through all you have and survive it,it should give you a boost knowing that you can fight it,let’s hope the kidneys regenerate and slowly get you back on track.the whole thing is so emotional,once you realise how close things were.
I would not bother trying to remember about ITU,locally they will do a dairy if we asked,but I think it’s better that Slim cannot remember anything about that time,it also gives me some comfort that if it happened again!!! And the out come was not great,he would not know a lot about it.

Good luck Eve

[eveParticipant]

Hi Jean

I know it’s a worrying time for you!!! But if Michael has the will to fight it he will,it’s when they put him out and on a Ventilator,the chances diminish,it will take a lot of time to get over this,and they will make decision of his Chemo treatment secondary. But he will get there.

Slim had his Stint in ITU for nine days then the ward for 11 days,three years ago,so hang in there,he will recover but slowly.the big thing will be any clots,see if they are going to do a CAT scan.
He will remember very little of this time,so that in it,s self is a good thing,you must try to get some rest yourself,while he is in hospital,as it is going to be hard work for awhile when he comes out, are you still working??????. Take any aids they give you to help his recovery. Hope this gives you some peace of mind. Eve

[eveParticipant]

Hi David

Good News is always welcome and specially from you.

I visited the Houses of Parliament on a school trip,and the local MP bought us all orange juices sitting on the terrace. So I hope this was extended to you,with champagne in it!!!!

[eveParticipant]

Hi Keith

You managed to post that’s the main thing,perseverance !!!!,keep going and you will do fine.

I will not offer any advice on SCT,as I am sure things have changed since my husband had his,so this is just a welcome to you. Eve

[eveParticipant]

Hi Molly

I do not know anything about South Yorkshire ,but replying to boost it up,as sometimes post gets passed over. Eve

[eveParticipant]

Hi Woo1967

I take it 1967 is your birth year!!! And I cannot keep calling you Woo,sounds like a dog! But let’s answer your questions first.

There is a free number the top of this page,call it and speak to Ellen or Maggie,they can answer all your questions and send you booklets,this is a must!!!! As you can learn a lot about your condition,so any bad news you get,you will be prepared,plus it will help you to ask questions on your condition.

You say you have test results but not what they are!!!,if they are blood results,????they could be showing change in your blood,bloods are just a small part and act as indications of what is going on in your body,smouldering myeloma can go on for years,plus it does not always develop to Multiple Myeloma,MM effects not just the blood,it could be damage to bones or kidneys and is complicated unless you gain knowledge of the disease.

So Moo,don,t hesitate pick up that phone!!!!,and lastly welcome to the myeloma bubble.Eve

[eveParticipant]

Hi Molly

I have just returned from the Royal Marsden were a man named Stuart introduced him self to me,he lives in France and his wife is treated at the Marsden !!!!

He said if you want any information to get in touch with him,he will gladly speak to you!!!!if you put in search the name Stuart,it should throw up postings of his,even put in France,then you just tap on his picture and it will go to his profile and you can send a private message ,hope this helps.Eve

[eveParticipant]

Hi Molly

I would be very careful and get some expert advice on any form filling you have to do,CAB should be able to talk you through this.

As you have been out of the country for 6 years,I think you will have to prove you are not a health tourist,but saying that I take it your husband has put many years of tax and Stamps,which should entitle him to health care and support!!!!
Try going on the net to find out what your position is???!
I do know when Slim claimed Attendance Allowance one of the questions was had we been out of the country for more than 3 months in the last year..hope some one can help you.Eve

[eveParticipant]

Hi Helen

I was going to keep well away from this thread as I do not think it achieves anything!!! And any one reading it who is new to Myeloma,will wonder what it’s all about.

I do not like the fact that Dusk is not up front,even if her opinion is valid,sorry Dusk,but that’s just my opinion

Helen I have come on here mainly to say,I am so sorry you have relapsed ,I know we all do it slip bad news into some else,s post,we have this fear of upsetting people!!!!,
Velcade was good for Slim and he is now on it again!!! I hope you do well on it!.
I also agree, that no one person is in a position to know how a drug will effect them,you have to make choices with what is available at the time.

Slim has had the new programmed MRI scan that is available at the Royal Marsden,although not good news it just gave us peace of mind,as it was decided on a BMB plus the need for platelets and blood,that are local hospital could do no more for him,and we had a second opinion . My best wishes to you Helen R love Eve

[eveParticipant]

Hi jeff

There should be no problems asking your consultant for a second opinion, Slims consultant did not hesitate ,I think it is normal procedure when your own hospital feel they can do no more, we had no problems,and were seen by new consultant within 3 weeks. Be prepared to travel as it involves going out of your area.

We still go to see the old consultant,but not so often,I think they like to keep in the loop,they also get letters from new hospital,doctor and Slim receive letters as well,

All though it’s a long journey for us,it has been well worth while,some times it takes 3 hours just to get there,but once he is seen,it goes very quick,bloods then an hours wait then platelets and Velcade . We have made contingency plans if he is unable to do the journey in one day. Eve

[eveParticipant]

Hi Andy

I had a good sleep last night,Slim was a usual,up most of the night,but occasionally my body fails me,I make up for all the sleep I loose. It is the Chemo brain that causes,the inability to retain information,he can not do complicated crosswords any more.

Has anyone said how the Pomilidomyde is working?????and how do you feel about it in yourself???
Slims bloods have picked up a little bit,which is good he gets platelet support if it falls below 30 plus he has it before Velcade,and it is helping,got the bloods yesterday,holding is own in general,platelets 22,big trip tomorrow,getting use being in a traffic jam on the M25.

Have a nice break in the lakes,will do you the world of good,but no hiking boots for you.Love Eve

[eveParticipant]

Sorry Andy

Taking over post again!!!!women pirates.
You can have a Dex fuelled rant lol.Love Eve

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