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]

I am so sorry to read about Colin’s passing.

Wishing you all the strength and love at this sad time.

Lots of love

Karen xxx

I like you have been having endless problems with my teeth and gums since my sct, though you sound to have worse, I know I am on my way, they get worse by the day. I too get a bit of esa, but be careful what box you tick, I ticked the box (it is very confusing), my dentist gave me a deep cllean and waivered (sp) the cost (approx…[Read more]

Wow Dorothy, 11 years 😀! Good luck for the 25th. Are they your own stems? Have they been in storage? Hope I am not being too nosey, just that I have some in storage for my next SCT, at my next relapse. Best wishes.

Just off to pile some coconut oil on, I definitely think there is some sort of connection with the MM and nail.

Regards to…[Read more]

Well jel!1

Enjoy your hols, and have a beer or 2 for me (hic)

Cheers

Karen 🙂

Glad to be of help, I agree, it really does help discussing with other MM sufferers.

I often wonder that, was it because it was not as bad as first thought, or there was not enough benefit to be gained to make it worth it. I am putting it on my list of questions for my consultant, she will have had a report off him, I see her next…[Read more]

Karen

Thanks for your reply.

About my Vertbroplasty, it went well, though the surgeon/consultant, said it was a challenge! I admit to being very nervous, but I was knocked out, thankfully as lying on my tummy was very uncomfatable. I came round bout 3 hours later, they gave me lunch and painkillers, though I do not remember any pain. I had…[Read more]

Thanks for your best wishes, just re read my post, i was not very clear, it took 4 years to be diagnosed, which was nearly 3 years ago, I am on my first relapse after various treatmeats, Thalidomide, SCT, Vertbroplasty (for crushed vertabrae, I lost 3 inches in height), But they said I will always have pain, hence the Zomorph.…[Read more]

I was…[Read more]

I hope you are both doing as well as can be expected.

Just an observation, an awful lot of people end up diagnosed…[Read more]

Best wishes

karen 🐱

I had SCT in January 2013, it has definitely affected my memory and concentration, I used to read a lot, now it’s a struggle. I may try that magazine with short stories. I suppose being on zomorph will not help, I have a lot of bone pain, because of late diagnosis, so it’s probably a mix of all of the above.

Good luck and…[Read more]

Good luck to Ian.

best wishes
Karen
xx

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

My…[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]

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very…[Read more]

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by t…[Read more]

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this…[Read more]

I have not been on for a while, been busy feeling a bit sorry for myself, as my November checked up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by…[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]