[HelenRParticipant]

Thank you Eve for writing (now and in the past) and I really agree with what everyone says about how great it was that you wrote, as I was online a lot at the time you wrote a lot. I also meant to say at the time that I loved reading about your incredible adventures off to France on your own for the first time, you really brought it to life in your messages, very dramatic!! It’s lovely to hear how you are doing. Actually there was an interesting thing on Radio 4 recently (you can still get it online – Robert Peston and Eddie Mair interviewing Julian Barnes, the novelist. Both Julian Barnes and Robert Peston lost their wives, and talk very openly about it (and say that normally women are betting at talking to them than men!) They also refer to a book by Julian Barnes that sounds good, about his grief. Of course it’s not like everything is fine now after a year, although things do evolve – they are good at explaining that somehow.

I mainly took a break from the online myeloma bubble during the last year or so – I have to be a bit selfish and do whatever works best for me at whatever point. But I’m back on treatment now so think I’ll be popping in a bit more – the solidarity does help so much. It’s refreshing not having to try to explain things to people who can’t really imagine what it’s like, but talk to people who get it! But in my case if I don’t write anything it normally means I’m off enjoying myself 🙂

Keep happily swimming outside the bubble and doing whatever you want 🙂 And pop in from time to time!

Helen x

[eveParticipant]

Thank you Helen
I have just been reading your thread about Andy,well who,s a naughty girl,!!!we all know paracetamol mask infections!!,never never take them until diagnosed,I cannot tell you how many times ambulance drivers wanted to give Slim them!!!!
I am sorry you have had to start treatment again,but so glad you are not pushing up the daisies (((((((hug ))))))) still walking part of the way I hope!!!!

As for me trying my best to live life to the fullest,won,t say it’s easier,and not a day goes by that I don,t think of Slim,but in the grand scheme of things,I accept it was Slims time,
At the moment I am just replying and keeping an eye on you lot.
I will back away again!! As it’s still a hard thing to see my cyber friends going through all the turmoil.
I just wanted to leave you with the knowledge that people will be alright!!! We tread a different path.
I joined a closed group for widows and widowers called Way Up,it’s for people in all stages of Berevement,and it has helped to put myself out there,mixing with new people,learning to do things on my own,and accepting that life goes on,it all so makes me realise how lucky I am,as there are people who,s partners walked out the door and died,plus people who took there own lifes,it has certainly made me more compassionate ,so another learning curve!!!

Helen,Andy is still in Hospital!! I sent him a private message on Facebook,But he is very quiet at the moment!! Let’s hope he has the strength to jump the hurdle,!!!

[cygnetParticipant]

Hi Eve,

We’ve never “spoken” but I’m one of the “newbies” who have read your  previous posts with interest since I joined the forum & been very, very grateful to learn from yours & Slim’s journey  & experiences. It has particular resonance for me as I’m not that far away from you in Kent.

Thank you for coming back onto the forum to update us on how you are doing in this next chapter of your life. Take care of yourself  & happy motoring!

Love & hugs,

C xx

[eveParticipant]

Hi C

Thank you! If my previous post help you in any way,I am glad,it’s an awful situation,medically and with the present politics concerning Cancer drugs,they have no understanding of the mental anxiety that patients and family suffer.

We always tried to lock the myeloma away,in every sense of the word,Slims attitude was why worry about tomorrow and spoil today,but that was him in general in his life,I shouldered the burden,and tried to protect him all I could,never got upset in front of him,big smile on my face,the car journeys where the worst,somehow driving gave me time to think!! But it also prepared me for what was to come!!!

So try not to think too far ahead ,live for to day,and take the word worry out of your vocabulary ,it’s such a useless word. Eve

[PhilipandfionaParticipant]

Hi Eve

Thank you for coming back and updating. i mainly hang out on the uk MM facebook page these days not here, although this is also a wonderful place to be.
I’m glad you’re living your life to the fullest. I’ve retyped a sentence several times, but it doesn’t come out right, so i shall just say, Slim was a lucky man to have you, and we’ve been lucky here to have you, and i’m so pleased that 1 year on, you’re choosing life.
xx

[HelenParticipant]

Dear Eve
I’m so glad to see your face brighten up this page, I’m trying not to be so addicted to the iPad and ration my sessions a bit, so I missed your post! And anyway since my last relapse my story isn’t really a ‘good news’ story so I’m more reluctant to post! I wish I had more of your bluntness.;) I can’t do Twitter and am banned from face book… Long story!!! Send my regards to Tom and Wendy. Anyway you do seem to have grabbed life by the horns and are getting on with it, Slim would be so proud of you for it. He was lucky to have you to help fight his corner, such love.
Keep going in your mobile home, I escape as much as possible to our holiday home, it’s a great retreat and I love it.
Much love to you on your next stage of the journey.
Love Helen

[eveParticipant]

Hello Fiona and Helen

Fiona I find it easier just to let my mind flow,never rewrite anything again,so you get me as I think,plus my terrible grammar and spelling,but it’s the true version, warts and all as they say.
I do look in to UK Myeloma more mainly because it’s easier to follow,also having faces on there helps,you have beautiful children,and you can see the happiness shining out of your little family. Keep the good work up.

Helen I have been thinking about you a lot!! Wondering how you were doing,this reluctance to post when hope is fading,to me seem wrong,but I do understand the feeling to not want to know,we all get to this position ,and for Slim and me,being very open,worked,I know it’s not for everyone.
I let Tom and Wendy know you were asking about them,Toms his usual self,bit thinner waiting for second SCT. Wendy just had a baby SCT,down a bit as not the result expected,gave her a kick up the bum,and she kicked me back!!!so we are still talking just about!!
We have to just be honest,
Toms impressed that you have been banned from Facebook,change you account and use another name,the scoucer in me says there must be away around this!!

Anyway my little adventure has started I am in France on the West coast,on an Air in Mimizan Plage on my Mi Fi on the go,I am learning to embrace technology ,I have my moments ,Mimizan is one of them laying some ghost to rest,needed to come back here to see if I could still enjoy eating Prawns and drinking cold beer.i have a one way ticket,so will see where my adventure takes me,my attitude is I cannot do anything about Slim not being here,but I can do something about myself,he would be the first to say,enjoy your life it’s too short. Love Eve

[eveParticipant]

Food for thought

[andygParticipant]

Hi Eve.

Sorry I haven’t replied sooner but I’ve been a little preoccupied the past couple of months.

I’m really glad to read about your travels through England and now France you seem to do all the right things. Since we met on here you have always been a great contributor giving advice and relating your life with Slim including the bad times as well as the great times. You have always been honest and upfront with everything.

It’s just over a year since Slim passed and it must be still raw for you and yet you still find the time to encourage others both here and on Facebook. I greatly appreciate it. I wish you every thing you wish for yourself and hope you keep in touch even if it’s only occasionally.

Lots of love.

Andy xx

PS. Every day is a gift xx

 

[HelenParticipant]

Dear Eve
I do hope I don’t really sound as though I’m giving up on hope, I’m not, though I suppose that the constant round of treatment is getting very wearing at times and it becomes more difficult to sound as optimistic as I used to. Soon it will be 5 years – when I say it like that it sounds like a long time really and I’m pretty well despite it all.
I’m so pleased to read about your trips away, I’m off to Austria next week for a trip round the Christmas markets so that should be good fun.
You take good care of yourself
Much love helen

[eveParticipant]

Hi Andy and Helen

Andy good to know you are much much better,when that drinking arm starts working,then I know you are fine, I hope you are helping Tom,by drinking his measure,he looks good,even though he is in a hospital bed,bet he has the nurses in stitches.

Helen no one ever gives up hope!! I look on it as an acceptance,that the miracle cure is not going to be yours,I would love to hear from these people who survive 20 years,they just don,t post enough! It’s the knowledge that treatment is the way.5 years in the Myeloma world is a long time,and new drugs are helping all the time, percentage wise 5 years is a marker,and you can put yourself up as a success ,and all the more reason to post?? All these new people coming on here need to know they have a future in 5 years.

I met a women in Benicassim who,s husband has myeloma,and he looked so well,his progression with Myeloma is slow,and they both enjoy life,she said if this had not happened ,they would not have the life they have now,and would just be non stop working.

I have never been to a Christmas market I am told they are beautiful ,do you think it would be the same in the sun! Except for a few Christmas foods in the shops you would not know here,the weather is hot,too hot for Oscar,so don,t walk him in the heat of the day,I have resoughted to a doggy buggy for him,it gets me out and about more.

I am lonely but ok,if that makes sense,I think it goes with my title widow!! A big learning curve,.enjoy your break,and start booking your next holiday,did you ever get all that knitting done or is it still behind the sofa. .? Love Eve
I might get banned for this, lol (((((hug)))))))

[annlynnParticipant]

ha ha. you lady have just brightened up a dull north east morning but. can we find the man they fit !!!! pleased to hear your doing ok and enjoying the sun were of to tenerife on sunday chasing some of that vitamin D. professor jackson. tells us we need . I totally agree with what you said all the people like helen posting and andy keep me hopefull for the future. thanks eve. xxx ann

[HelenParticipant]

Dear Eve
Ha ha ha – do you have the pattern for this!!! I wonder what people would say – it’s almost worth it for the laugh, my husband could have worn them last week in freezing Austria. Are you back in the uk for Christmas or still away. Any newzealanders visitors? None of ours are making the trip this year, too many babies and no money, but they were,nearly all here last year for our daughter’s wedding.

Dear Ann
I’m hoping I’m not too gloomy about the fact that I’m just sampling all the drugs one after the other, I suppose it just shows how much you have to just get on with doing all the things you want to do and not waste time being sad and miserable. I will keep posting of course
Love Helen

[eveParticipant]

Hi Helen
No sorry I don,t have patten,but you could treat the bulge as a finger,get the patten off a glove pattern .

I am out on my lonesome for Christmas,I don,t want my girls to start thinking who,s going to have mum,they have threatened me with forcing me to have a micro chip,so they can keep track of me..
Laying ghost to rest!!! Cannot go to NZ as old Oscar 16 years has not popped his clogs,unfair to ask anyone to have him,double in contentant ,plus deaf bit like me,going senile,has me wake in the night.

I am at a place called Vera in Andalucia staying for a few days as a holiday in Spain,everything closes,it’s a tennis academy ,that takes M/H,out in the wild.
This is a picture from the back,of my van ,better views the higher you go,but the walk down would kill me.love Eve
Just enjoy life Helen,take the word worry out of your vocabulary ???

[annlynnParticipant]

eve.. your a insperation. traveling on your own must take guts . your daughters must be proud of

you. and slim. certainly would be .. helen. yes please keep posting when you get the time its nice to follow progres keep well and have a lovely xmas x x ann quinn

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