Hi Teresa
Yes Slim goes 23 of this month,after a year on treatment,and septic pneumonia in the middle,been a hard slog to get here.|They say he is fit enough,and he can not be any worst than when he was in ITU for 9 Days and 11 days in general ward,with months after recovering while on treatment.
They will keep him in for at least4 weeks,and the hospital is 85 miles away in London I have a daughter who lives in Kemsing so have parked the motor Home on her drive so will travel in daily,I met couples who live on the S Coast,and they will not be able to travel very often.The seperation during this time must be awful.So feel lucky.
Our lives were turned upside down with MM,but again so lucky,We have not waited until he was 65 to retire and travel,we have done so much,8 years travelling in a Moterhome full time.Plus holidays as well,So we have to be grateful for that. Love Eve
Hi Helen
🙁 I do envy you I know its wrong but it will be at least 7 months from now before we can go out,to the land of the long white cloud,It will be 3 years I have not seen 2 of my grandchildren and when there young they grow up so fast
We talk on Skype,and have kisses and hugs,my computer has never had such affection before.:-)
Helen you do not need much out there,they have had a hot Easter,so shorts and t shirts with Flip flops,I was amazed to see people in supermarkets with no shoes on!!!.Mind you my daughter lives on s island.
Lovely place and lovely people,have a wonderful time,you will need factor 50. Love Eve
Hi Ted
How are you doing its a long time since I have seen post from you,one minute you are going on holiday,then no Ted about.:-)
I hope you remain in smouldering for many years,Love Eve
Hi Helen
My mind is just trying to get round the fact that your Dad must have been a older Dad with a young heart,if your the eldest 🙂
I can see were you are coming from ,specially when you finish chemo and you do not have to go to the hospital as much,you become normal and no one wishes to go backward,but if you were the carer!!!.
Think of your plans for NZ,Its you feet that should be in the sand,not your head:-P Love Eve
Thanks Jet
have been reading up on this for a few weeks sounds very promising,talking about world trials.
Slims managed to get to SCT stage after CTD then Velcade so fingers crossed.
Going to Kings 23 April told 4 to 6 weeks in hospital.
Good luck for the future with your Allo SCT.Eve
Hi Jet
Sorry cannot get the link,are you talking about this new one just coming out of Israel!!!
Cannot get the Dailmail link.
How is life treating you !! Eve
Hi Dai
I agree with Janet,none of us knows what is round the corner,on a practical basis,we have tried to sought out our lives so that no one has that burden,but must admit it is now with the knowledge that Slim has MM,.
As for loving someone,I feel love can be painful,but would we be without it,I do feel everything has been worth the last 30 years,just sorry that I have not all ways appreciated them and sorry that our lives have been changed so much,but what the hell,I would not like a boring life.The future is just going to be a bit different.Love Eve
Hi Stephen
I could not reply to you E mail as you do not have an email address on your profile,but thank you for sending me a reply .
Stephen you will not get any quick relieve,everyday you will wake up,and be aware that Dawn is not there.
Min who lost her husband,found by making her world a bit bigger the pain was the same,but easier to cope with,if you look through her profile letters it might be easier explained.
I have a friend Jenny who has just lost her husband,and her take on it,when you step out of the Myeloma Bubble,were do you go,what do you do with the rest of your life.
Well the answer is you pick up the pieces,never refuse an invite,smile although its the last thing you feel like doing,and stay close to your kids,as they will be scared of saying something that will upset you.Get through this first year and you will have achieved one goal.
As Dai uses this phrase in a different way."What ever it takes"
We all know someday it will be us.
Do it for Dawn and the Kids.Eve
Hi Teresa
Well like Dai, Peter,s pain has been resolved,and as usual the carers have to stand watch and worry,it,s a place we have all been in,you have to ask yourself who you are angry with,the hospital or the hubby.Mine was both,for not taking on board my view.You are the one that shares this burden,sleepless nights,worring that they do too much,even if you go out,you worry about them,so there is no escape.
This is were taking a deep breath comes in.:-P
If you feel the hospital is wrong,then speak up,loudly if necessary until they take notice.
Explain to hubby how much it effects your life,Slim thinks if he mentions a pain I will drag him off to hospital(which I have never done yet),but if they are so selfish,and think this will all go away without treatment,they need to be told how you feel.
Do not worry about writing when angry I can assure you other carers are reading this,and thinking just like my hubby.:-( Love Eve
Hi Dai
I tend to think its the not knowing with all the anxiety and the inner knowledge,that even though you have MM,you know in yourself that something is not right,but when the experts say your ok,doubting Thomas comes in.
I have to ask what would a X ray have cost 9 weeks ago!!!!.Even if they thought you were wrong,what about your peace of mind,that alone warrants a X ray in my book.
When I was in Kings with Slim,a doctor was telling me about after care concerning an symptoms that he might have,I told her she did not have to worry,as after Slims treatment last time,if I think he is ill I will stand my ground against any expert telling me different,my thinking on it,is I will be grateful to them if I am proved wrong.
Look after yourself Dai,from verbal Eve
Hi Helen
I thought every employer had a duty of care,so one can only assume,they are looking to see if your fit or may be a big fat pension.I suppose it depends what your job was and how long you have been off.
I know someone on here worked for the NHS although she returned to work,her general treatment seemed so unfair.i think a few on here have found problems.
So Helen go prepared,know your rights,Good Luck Eve
Hi Everyone
I put IMMUCINE vaccine and got all the gen from the net,it does sound promising, they were talking about it going on world trials,so uk may be in with a chance.At the moment it is on trial 3,in the main hospital.
Lets hope there is a good response love Eve
Hi Bridget
I come out with things all the time,and my kids think I am daft as a brush,I put it down to me being a Liverpudlian ,and my children are Southeners.
They do say I am sounding more like my late mother every day,having three girls I get the last laugh as slowly they are all sounding like me,specially my oldest Ruth who has two girls,who never stop arguing.
All my girls husbands tell them there like me in fact one of them said my kids were not born they were cloned think its something about them all being strong characters,upsets them no end . I would love to be a fly on there wall when this is going on.:-)
Your mum,s still alive,so they must the likeness, Love Eve
Hi Gina and sister
Lovely to hear from you,and to see you are moving on with your lives,that,s what your mum would have wanted,lets hope this less crying days as as this is also what your mum would want.
I think you feel it more on days like mothers Day and birthdays,the knowledge you can no longer pick up the phone and have a chat.
As you can see the site has lost some and gained many,I think we all went through a down period for a short while,but with the likes of Tom on here,you cannot remain down for long,he always cheers you on. lol.
Slim goes for his SCT soon,took a long time getting there,he just wants to get it over with,he will be going into Kings and they keep you there for 4 to 6 weeks,thats going to be hard ,as Slim likes to smell the sea air.
Keep looking in Gina,hope married life is treating you well,Love Eve
Hi Stephen
My heart goes out to you,mainly selfish because I know one day I am going to be in the same position as you,I hope that does not seem unkind,why has it taken you so long to find this site,people on hear understand exactly what you are going through,some have already been there,and others are preparing themselves,but hoping there is a cure around the corner.
Your wife lives on through your children,and that is what is important,grieve for Dawn,but try to hang on to the good times,your future lies with your children,her mum has lost a daughter she cannot replace.
Do not worry about the grammar,its the feelings that come out of your message that,s most important.
I hope we can be there for you.Eve
