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…[Read 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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

I have just looked into your profile as no picture! And see how much you are now helping other people, I know I was too blunt at times! But you seemed to be able to get the message across very well, this is the way it should be,helping each other on this journey,then leaving that road and going on a different one.

It makes all of us…[Read more]

I have come along way in the last 5 years, 4 years of Slims illness and 1 year on my own,it’s a big learning curve,and I still look in on cyber friends,see how Tom or Andy plus a few others if they don,t post on the Facebook site UK Myeloma ,I worry. So Myeloma never really leaves my world although Slim has gone.

I just wanted to…[Read more]

Many of you won,t know me,as you will be newbies! But the old crowd will,the reason I am writing this,is that Slim always worried how I would manage once he died.

I have decided to let you know what has happened to me,I lost Slim one year ago on the 27 of August and I suppose it’s reflection time,although not a day goes by without…[Read more]

Pat has been our very best friend since God was a boy and wore short…[Read more]

As many have said on here,Scott always seemed to be beating the odds,I remember him talking about SCT although kidney functions were not great.

He gave lots of people hope and this is what this site is about,hope for a cure plus watching people who seem to be full of hope and beating the odds,Scott is one of many…[Read more]

I am no expert or councillor but I wonder if it would help to let them know that is OK to be angry with Dad. He…[Read more]

You hold on to that tea towel forever. I cannot use a “steel” to sharpen knives but I would never part with it. I miss Stephen so, so much and do not think that will ever change, but I have learned to carry on. I also realise that family and friends have no idea how much I am still grieving, but that’s OK. It’s how it should be.

Love…[Read more]

The knives all had bone or ivory handles (not P.C. But they were over 100…[Read more]

I often think about Dai,and others and people who have stopped posting,like Jo .

Deb Bones lost her fight just after Christmas as well,it’s a sad year all round for many of us,but we do live in hope that away to control Myeloma is coming,plus we have the knowledge that all the people on the trials helped

I am…[Read more]

I am sorry to hear about your news,it’s not very nice when all hopes seem to fade,!

You must be absolutely shattered with all that’s been going on since last January,with hardly any time to take everything in,your experiences of hospitals is becoming more commen place,waiting hours just to be put on a drip,when your husband was so ill,it is…[Read more]

Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.

Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.

I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]

Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.

I have good and bad days,try to keep myself busy and out of the house,after…[Read more]

Gill

Gill

Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.

He has age on…[Read more]

As a very oldie on here may I suggest instead of joining on some ones post,you start your own post,telling people who you are,what hospital you go to and what treatment you are having,plus of course any problems. This will help people to help you in person!!!!

When I first came on here,some one posted. WHO THE HELL ARE YOU!!!!,I…[Read more]

That’s the way to go!!! No regrets enjoy what you have and never give up hope.

The fact is no one knows what lies in the future,just enjoy and never give up hope,it will take people a long way,and every day is a bonus. Love to you all.

It was my husband who died,and it was a long slow death,so when you are not expecting it,it’s harder,grieve hits you very quickly and brings out all sought of emotions.

It is very hard for anyone to speculate what went wrong concerning your mum,if you write or ask to see her consultant I am sure he would explain why it was not picked up…[Read more]

I am so sorry for your families loss and for the way the Myeloma progressed without being spotted,I personally think people should learn all they can,and not have this blind faith in doctors,at the end of the day,they are just trained people,and family should ask questions,even if it’s only for your peace of mind.

When people are…[Read more]

If you think about it chemicals exist in basic materials for every day use,for example wrapping on food,which is put into a microwave !!,

Jobs that you have done in your life ,Farmers service Men,anyone who came into contact with Chemicals,I think why there is no direct research into this is…[Read more]

How are things,!!! I do not post so much now but look in to see how everyone is doing,and looking at your post I thought you needed some surpport at this stage you are at!!!!

The doctors are telling you to prepare yourselfs, and it’s not a bad way to go,because if this does happen at least it will not be such a shock as last time,and…[Read more]

Last day to make sure every thing goes right,visited Slim yesterday,and took masses of Sunflowers to line his coffin,if you have followed this journey you will know how much we enjoyed France and the fields of sunflowers,they represent a big part of our lives together,all…[Read more]

When Stephen died my daughter flew over from the States. She was devastated that she did not arrive before Stephen died, but she said she was there to support me. Bless her she sorted…[Read more]