Hi Rebecca
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 very strong people,out of adversity comes people with understanding plus compassion ,I would like to say I wouldn,t change anything,but I am not there yet,I suppose it’s an acceptance that it was Slims time,I felt very lucky to have had the time I did even the bad years.
As Andy would say life is a gift unwrap it and enjoy, love Eve
Vicky
It goes without saying how sorry I am to hear your news.
i know the auto pilots switch is on for you now,it takes awhile to realise how exhausted you have become,it’s very hard to cry and mourn.
Just try to cope the best way you can,these last few years you have held everything together,being strong for everyone,I can only say,be proud of yourself as Colin would have been very proud of you.
I have sent you a private message,but covering all bases as,I know how things pass you by at this time in your life. Love Eve
Thank you Ann
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 say to people try not to worry so much about after,and make the most of now,those 4 years prepared me in many ways,gave me a voice,confidence and made me realise that Slim fought so hard to live but died,so I will do my best to not waste one day living the happiest I can,you mourn for their life as the disease takes hold,and you mourn for your future without them after.
Take care,never give up hope. Eve
My condolences to your family.
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 that have lost there fight against this awful illness,
I can only tell you,people like your Dad and many others kept me going through my husbands illness ,Sadly I lost my husband last year,but I will always be grateful for all the help received from people like your dad,that is a gift they all gave freely .
Celebrate his life with pride as he helped so many on here just by surviving and giving hope to so many. Kind regards Eve
Thank you Richard,that was kind,
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 choosing to come out of Myeloma UK and UK Myeloma,not just to move on with my life,I have joined a Way Up forum,which I am finding helpful,but there is only so much sadness that you can take,but I do leave with a heavy heart,and will be thinking about you all.
Many of you have joined my Facebook page,so I will know a little bit of your life’s in between playing scrabble with Jean.
Good luck for the future,and have the best new year you can,Life is a gift to enjoy. Love Eve
I found they gave my husband the anti sickness pill to near his meal!!!!
If it’s taken half an hour before a meal it settles the gut,so that might be worth trying,and yes some hospitals keep you in until you can hold down your food,Slim just lied!!!! But that was Slim.
Try a piece of pineapple to clear the pallit ,drink anything you can,it’s hard,fizzy drinks helps,it’s just a matter of perseverance .
Hi
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 all wrong,they do not make life any easier for you,does not seem to matter that your dying and part of it is the,treatment that is given,no sick person should be treated like your husband was,you can only think we’ll he does not have to go through this any more,he is at peace.
I don,t have to ask how you are feeling!!!! I will just say take one step at a time,keep a smile on your face no matter how you feel,these next few weeks will all pass in a blur,be strong and live your life to the full. My condolences and best wishes for your future .Eve
Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years together.
You will get through this,and you have a large family to keep you going,which in it,s self must be a blessing,grief has no time limit,so I would encourage your youngest to talk about his daddy even if you both get upset. I talk about Slim to my grandchildren,it helps all of us ,as he would have been so pleased with so many good things happening within the family.
Wishing you well,Eve
Hi Fuzz
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 should be checked also, Myeloma does not show on small bones,it will show any brakes in bones, and that is very painful!!!
I would ask your GP have they considered Myeloma,because you are worried about you symptoms,if your not happy with the reply,ask for second opinion.
You only have one life
Hi Vicki
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 not really leaving it in the last few months,I have been taking advantage of this lovely weather,and it’s so nice to Live by the sea in Deal.
My daughter Ruth has just moved back down,so have two daughters near by,so that all helps!!!
I have to look on the good side Slim had a nice life and enjoyed himself,just would have like longer,and yes you are right it is a crappy cancer,but never give up hope,new treatments are coming along all the time,so let’s just hope a break through comes soon.
I was reading about the American lady who has Myeloma and they experimented with the measles vaccine worked for her but not others who had it the same time,new avenues and new paths opening all the time,keep your chin up,don’t let the Myeloma deprive you and hubby of living and enjoying what you have. Love to you both.
Hi Maijic 30
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 his side!!!!! After all those treatments and side effects it’s no wonder he feels he does not have the strength to do it???
I must tell you it must be his decision ,as if anything did go wrong as a carer you would find it hard to live with,but you have to tell him all the things he has to live for,you any children,parents ,possibility of the rewards,years free of treatment!!!!
Against that the consultant has spelt it out for you both,the myeloma will take over!!! Consultant must feel this is the only way forward,but it is his decision.
I don’t envy you both this weekend!!!!
You can say no!! And take a chance with Polidimide and have a small quality of life at home.
You can say yes!! 4 weeks in hospital a chance of hit it hard,many do not get that opitunity because of age,so the risk is greater,there the people who would have done anything to stay alive.
It will take a lot of courage either way your husband chooses,my husband was high risk Myeloma,as soon as treatment stopped,it came back again,he had a SCT against his consultants advice,written off at Christmas,changed hospitals,had old treatment Velcade second generation,died end of August complications of chemo,loved him to bits,would not have done anything different,nursed him myself until the end,
Hi Newbies
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 replied and it was the best thing I ever did????
During that time MIN a regular on here,Said don,t be shy show a picture,only reason I did not,is I did not know how to do it. The rest is history!!!!!
I would like to think I leave this forum in a better place,full of cyber friends,alive and some dead,people who helped me and in turn helped people, ( I know I upset some ) sorry???,a spade is a spade in any language ( blunt as ever ) learn all you can,knowledge is the key as Bridget would say,plus Keith,Dai Min,out door Paul,I could go on,they left you with a fountain of knowledge to be explored,do not waste it,use the new experts you have on here.
Jan
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.
Hi Kaye
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 earlier,some times patients go Non secretor like my husband and the only way to tell how the disease is going inside the bones is a BMB. There are often complications that arise from the treatment.
It might help to speak to Ellen on the telephone number at the top of the page.
