Hello Kelly
It’s not often I come on to Myeloma UK, as I lost my husband over 3 years ago, but Myeloma as come into my life again ,as a friend has just lost her husband with Myeloma ,so I looked into the site.
First you have to know about a Myeloma, a doctor might only see it once in his life time,so GP seldom pick it up, usually it’s discovered by some form of damage to bones.
Myeloma has different types and some are harder to discover,my husband had BenceJones lightchain Myeloma and he was non secretor, only way to discover was bone marrow biopsy ,I am explaining this so you understand ,your nan being old would have had all the aches and pains for her age.
Treatment for Myeloma is often deferred if the patient is not well enough,I think if your nan had got over the pneumonia and septicaemia , they would have worked out a treatment package.
People don,t really die from Myeloma, they die from related causes,infection being the main problem,is they considered that your nan,s body could not respond,because septicaemia closes down organs very fast, the kindest thing is let nature takes it course, this is said with kindness.
My own husband came home to Palliative care,not expected to live more than a week,his Myeloma was only 10% but constant chemo had stopped him producing good cells. He fought hard and lived 10 weeks with out medication for Myeloma just strong pain relief .
His death certificate might say Myeloma ,but it was either an embolism or heart attack that took him.
I hope you kind find some peace of mind,concerning your Nan ,I all so hope you have learned a little bit about Myeloma , cancer is not nice,but I think Myeloma cancer is one of the top ones people don,t want.
Hi!! Am back! It’s coming up to two years now since Slm died,had lots of adventures,but would have liked to do far more!!!
I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!
I was diagnosed with Bladder Cancer in June of this year,although it’s very first stages,it’s aggressive,so I start BCG which is a life vaccine used to treat TB,it seems to work on BC contained within the bladder.
So I am now on another learning curve,and feel the experience of Slim will help me in my fight against BC,
I am now becoming a health freak,no drinking??,dieting?? Excising???!its amazing the motivation to loose weight becomes when you know,the bladder really has to go.????
Having a forum is a big boost,bladder cancer does not have much funding,plus very few trials and no new treatments in about 35 years,most trials are concerning radiotherapy .
Never realised when I was in his forum,how lucky we where concerning trials,treatment and knowledge,plus of course being able to ring a myeloma nurse and get information. So use it and appreciate it.
This BC has put a stop to my wonder lust,if my treatment works I will be put on a maintenance plan,if not or eventually as it gets in to the muscle,I will have my bladder removed
Like all of you,I don’t wish now to be entering another bubble,but feel glad I did an awful lot after Slim died,just not enough.
So I am starting another roller coaster ride.
Hi Helen
I came home 2 weeks ago,after nearly 4 months away,enjoyed the travelling and the weather was very good,I nearly gave up in the first month as I found it very lonely,never realised couples in General Don,t speak to single women on their own!! A real eye opener,but after a month I did get use to it and began to realise I liked my own company,although it was nice when I was occasionally included in things.
Some good has come out of it!! I have got use to my own company,although I did have the dog with me,going into a bar and asking for one Vino tinto,only to be asked just one??? Told them my dog was an alcoholic and does not drink!!! Seriously it was generally good,I will do it again,and the children have accepted that I can do it by myself,so another first to travel alone!!!
I hope you are keeping well Helen and packing your days with things you want to do! .???
I am not able to go to NZ as my old dog is too old too leave with any one,it’s almost like having a new baby,I even have a buggy for him now, it helped with being able to do a lot more walking,plus he became the topic of conversation,mad old lady pushing a dog in a pram lol!!
This is one of my favourite places in Portugal,going back did upset me but I feel that it needed to be done if I am going to enjoy these places again. Will let you know about my next adventure.Eve
Hi Sandie
Time to grieve is not something that we decide,it’s not something that you can just decide to do,it comes in so many different forms,to me it’s a bit of an ambush,one minute ok next the tears slip down my cheeks.
The house to you has been important ,but it’s not your love or your memories,just 4 walls and a roof,your love of your mum and memories will be with you where ever you are,and given time,instead of sadness you will think about the memories and smile laugh and consider how lucky you where to have a lovely mum.
Don,t let the last few months of your mums life scar you,
Try to accept it was your mums time and find some peace,look on this stage as a chapter of a book,turn the page and there’s a new chapter,make new memories and cherish the Old ones.
I love Andy,s saying, life is a gift,open it and enjoy,think that’s what mum would have wanted you to do. Love Eve
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 ???
Hi Laura
I am so sorry for your loss,before a consent form is signed the doctor has to explain all the risk involved,you tend to be bombarded with information ,so in the light of this I would say it was explained and because of the amount of info you have to listen too,it’s been said but not regested. I do think information like this should be repeated,plus explained so people like you,don,t have these doubts after,with hindsight,may be this forum can do something about it, example : hospitals put it in writing and the patient take away the info to read at leisure,then make a decision.
Myeloma very seldom is the cause of death,infection is the more likely cause of death,as the body cannot cope with the infection ,it’s a chance everyone takes,my husband was not recommended for a SCT as his lungs where damaged,he had a SCT survived,but the myeloma came back very quickly.
May I offer you some practical advice now you are a widow,there is a private forum called Way Up,for widows and widowers ,we all help each other through the berevement process,a bit like this forum,there is always someone’s footsteps in front of you and behind you walking on this road,and we help each other as we go along.
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)))))))
Hi Gill
Well except for Jean and Fiona we are widows,!!
And we all know it catches up with us at sometime,we are watching Tom going through his second SCT,and Wendy a SCT from a babies cord,so it must give a lot of hope for people treading in our footsteps.
Gill may I recommend Way Up to you,it’s not for everyone,and it does have a Facebook way up once you ave joined the forum,it’s a private group for widows and widowers,it not only helps with the grieving side but there are meets,plus holidays,it helps to expand your world,it’s not for every one,but you might find it helps pick up the pieces.
I am in France at the moment,the loneliness is still there,it’s just that life goes on,and I choose to do it my way.
Food for thought
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
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
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,!!!
Hi Jean,
Strange ,although we are Facebook friends,we keep Myeloma locked away ,its the way it should be!!!, I really enjoy the scrabble as well,I would take more games on with you,but will be heading for France soon!! But I do envy your cruises,it’s so nice to see you are making the most of your time,long may it last.
Thanks for the news on Jo,she didn,t do Facebook ,neither did David,it does make corresponding much easier,the UK Myeloma site has a good crowd on,may be not as informative,I believe Ellen is on there now which must be good.
I posted on here,as I think it’s important to tell people when your real fears come about,because of what we go through we come out a stronger person, I just remember Slim being so worried about me,so if it helps people and gives them peace of mind and they try not to worry to much about the future,it must help. Love Eve
Hi Richard
Nice to know you are still here!!,any one know how David is?????? Or Jo!!!!.
Just for the record Tom is just starting his second SCT, .
He has grabbed life by the throat,and making the most of it,holidays family and his lovely wife living life to the full. Tom has one thing on his mind on ward and upward!!!!!!
It’s a pity Jet and Wendy don,t post,think Jet is doing well and Wendy is breaking new ground with a SCT from an Australian Baby cord transplant so breaking new ground,these are the people you need to inspire you,there alive and living,breaking new ground,. Eve
Thank you
I do hope your journey,s are long and the best you can make of them,Liz it’s best to escape the roller coaster as we all know it’s going to pass your way again,and Myeloma should not become normality,but in the end it’s the only thing you know.
Thank you both again,Stanley,Slim was always proud of me, but he is more likely to come back and haunt me,!!!!! If I did not enjoy the rest of my life.
