[jmsmythParticipant]

Dear Vicky

I haven’t been on forum for some time. I am devastated to hear of the passing of Colin. My thoughts and love are with you at this very sad time.

Love jean xxxxxxxx

[jmsmythParticipant]

Hi Yvonne

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal ranges for different tests and areas to write results in. You can see right away if there has been any dramatic changes and can speak to consultant there and then. When we see consultant I take my diary and pen out of my bad and I’m given all the results immediately. After theses years I don’t have to ask – given right away. As others have said you gave the right to know. Hope all goes well for you

Jean

[jmsmythParticipant]

I was shocked to hear of your dads passing. My deepest sympathy to your family

Jean

[jmsmythParticipant]

We also have the Braun ear thermometer. My DIL brought a wand thermometer – doesn’t touch the skin – just wave it across the forehead. She said it’s brilliant

Jean

[jmsmythParticipant]

Hi Vikki

Great to hear from you. Sorry to hear Velcade didn’t work for Colin. Not on here very often so when I got your post I looked back to see how Colin was doing. He’s had had a rough time and he’s thinking OF GOING BACK TO WORK!!!!! I hope the new treatment works. Blo*dy disease.

Frank has his up and down days. We both took chest infections on Boxing Day and Frank was quite bad. Took a long time to get over it. He has started to get a bit of strength back – keep telling him he’s not a young man anymore – he seems to forget that

[jmsmythParticipant]

Ps Ron – Ellen and or Maggie are brilliant (on the helpline). Helped me on many occasions.
Best wishes
Jean

[jmsmythParticipant]

Hi Ron

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with consultant and she nearly had a fir and said under no circumstance was he to get the vacation and she said that she was writing to GP as myeloma patients should not get vacation

Hope Pauline gets sorted soon

Best wishes Jean

[jmsmythParticipant]

Hi Andy

Just caught up with your post. I’m so happy for you it’s wonderful news. Know you have had hard times – so keep up the good work

[jmsmythParticipant]

Hi Tracey

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each day as it comes. Frank has up and down days but we still manage to enjoy life – we have just come back from 2 weeks on Lanzarote. Ellen and Maggie – the myeloma nurses on the site are very good and will explain anything that you are unsure off. When we visit the consultant I have a list of questions prepared and I record the answers – I very a terrible memory. Hope things get easier for you – take time but you will always find help and support here. All the info that you need is here. I searched the Internet in 2006 and it scared the life out of me and then I found Myeloma UK

Take care
Jean x

[jmsmythParticipant]

Hi Rosie

I’m so sorry to read of the passing of your husband Chris. I know your children and family will be of great comfort to you and to help you at this terrible time. Such a lovely picture of your husband – the Glens of Antrim, know it well

God bless you and your lovely family

Jean x

[jmsmythParticipant]

Hi Matt

When Frank applied for policy, he had to answer loads of questions. One they kept harping about was “are you on very strong pain killers”. He asked what they called strong. They never had an answer for that and as Frank was only taking paracetamol – they accepted that. He got the yearly policy and when they sent the renewal policy it had been reduced by 25%. Frank went over the policy with a fine tooth comb and it suited him. You are obliged to inform them of any changes. When we go away Frank gets in touch with his consultant and she marks on his notes – the dates and states that he is able to travel. Frank is a lot older than you so you should get a good policy. I’m sure there will be someone come along with further info. I know David says ” you ust tell them if you have a pimple on your bum”. But then Gill said you are not going to wake up one morning with a severe case of Myeloma !!!!

[jmsmythParticipant]

Hi Matt

My husband has been in remission for over 2 years. We love cruising and we got the best deal from All Clear – a yearly policy. When we asked about cruising in the Caribbean – I can’t remember what it cost but I know it was astronomical – so we stay with in Europe. Hope someone comes along and can give you more info

Best wishes
Jean

[jmsmythParticipant]

Hi Angela and Graham

Move over Sir Bob. I really enjoyed that. Real good feel video. All looked if they were enjoying it.

Great well done
Jean x

P.s the drummer was brilliant

[jmsmythParticipant]

Vikki last of my post went missing. Rabbiting on too much. Hope things go week for Colin and Maureen hope thing also go well for Ian. I always thi k of Colin, Ian and Frank as SCT buddies

Keep in touch
Love Jean x

[jmsmythParticipant]

Hi Vikki

Has Colin started the treatment yet? Frank got lots of cells but consultant put them all back as she said that he’s too old to have a second transplant. I still think that consultant went ahead with transplant – PP’s had been dropping for months and as his next birthday would be 70 – the cut off point – she went ahead.

Vikki Frank missed taking 1 tablet and he was in cuckoo land. So I don’t think he will be off them.

Tom is on face book, he’s going through treatment and then going for a second STC. He’s the usual upbeat Tom. Him and Elaine are just back from Majorca where they had a ball. I play scrabble with Elaine. I have emailed Helen and Jo. Have not heard from them yet but Helen was having treatment and Jo was having problems with kidneys.

Consultant put Frank on 2 monthly visits. Says PP’s non detectable and light chains and ration are good. Still dread visits as the bloody disease can creep up and bite you in the bum

[Author]

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