[jmsmythParticipant]

Hi Christine

Glad that you are in full remission. Frank had SCT in March and is also (thank God) in full remission. Had a PET scan as well and no signs of cancer. Mind you ha has had a cold now XOR about 4 weeks but no temp. I asked his consultant why he was not offered maintenance and she said that it is only offered to,people on trials. We are in Belfast so not sure if that only applies here

Best wishes
Jean

[jmsmythParticipant]

Hi Maureen

Glad that Ian is feeling well enough to go out tonight. Hope you both have a fantastic night. I am nipping repund to one of our sons of a couple of hours. Frank is loaded with the cold and insists I go. Hacpve a happy and healthy 2014

Love Jean x

[jmsmythParticipant]

I’m a carer and I know how you are feeling. Frank smouldered for 7 years. I always had this scared feeling in my stomach. I went to a counsellor and it really helped me. I don’t know why it’s taking so long to see one. I went to the Macmillan centre attached to our hospital and talked to someone there and told them exactly how I was feeling. I got to see a counsellor and was with him for many months. He really did help me. I had to go back again about 2 years ago as the old feelings where creeping back in. Once gain it helped. As I said I’m not the one with MM so I can only imagine what the patient (including Frank) go through. Maybe someone else will be able to help you, but I would torture them till they get so sick of listening to you they will get you an appointment

My best wishes to you and hope you will have a great Christmas and a healthy new year. Long May you smoulder

Love Jean x

[jmsmythParticipant]

Hi Maureen

I echo your sentiment. Hope all have a great Christmas and healthy new year and pray that some major break through happens in 2014

,au teen hope you are good and that Ian is improving

Love Jean x

[jmsmythParticipant]

Hi Frances

My husband had STC IN March this year and turnd 70 in April. Consultant told us that they don’t usually do SCT at 70 but she said that Frank was fit and healthy (!!!!!). He had heart and lung tests and all was ok. I think it depends on your fitness. There are quiet a few people on the forum who decided against SCT and are doing ok. I hope things work out for you

Jean

[jmsmythParticipant]

Hi Vicki

Frank is a bit like Colin. Last week he was up and down. Every day was different. One day he cleaned all the windows inside with no problem. Next day he was knackered. This week he’s been great. Two nights in a row we have been out for dinner with friends and tonight with family and on both nights we went to the theatre !!!! He’s sitting now watching the recording of X factor results and not asleep

Regards the re vacation, when I asked about it just after the transplant she told us “the jury is out”. Nothing more was said and then she went on sick leave and her replacement arranged for him to be re vaccinated. We saw her on Wednesday and it wasn’t mentioned. His potassium/phosphates are very low. Been trying for a couple of months to get them back up but nothing yet. He’s on more tablets and is going every week to see if there is any change. Vicki every time we go to hospital I am convinced the Mm Is back. Colin is still working which is good, Frank has retired but I don’t think he would be capable of working a full day.

Vicki i don’t know about Colin bur Frank can be so moody. One day top of the world next day says nothing and keeps to himself. I just follow his lead

Hope Colin starts to get more energy. Franks consultant told him he has to walk every day (even though his back is painful). He has to set a target and try increase it. He has been more active this week – maybe that’s why he seems to have more – hope I haven’t spoke too soon !!!

Hope things start to improve
Take care
Jean x

[jmsmythParticipant]

My husband is 70 and had SCT March and is coming along. His consultant made his day when she toOld him he looked like he was mid 50’s lol

Hope things improve
Jean x

[jmsmythParticipant]

Hi Chris

Glad that things are going good for you. Frank had SCT In March and like you he’s going through th re-vacation. He’s had second lot and brought a lot of material to read about the vacations. We did laugh as all the points started “if your child shows ..,,..” He’s 70 so we don’t know what a 70 year old would experience!!!!!!

Hope things go well for you
Best wishes Jean

[jmsmythParticipant]

Hi Maureen

I have been taking Manuku honey for about 5 years and haven’t had as much as a cold. Hope I Hevesy spoke too soon. Frank won’t take it as he says it’s too sweet. Hope Ian is improving

Jean

[jmsmythParticipant]

Hi Luciano

Sorry you have been diagnosed with smouldering MM. My husband was diagnosed with smouldering in 2006. He had STC In March this year. He is improving a little every day and in September we went on a 16 day cruise round the Med. When he was smouldering we made the best of things and went travelling quite a lot. When Frank was smouldering, after lots of research we went with Columbus. Myeloma was covered. Gold single trip £124. After SCT we went with All Clear. iIt was in our interest to take a yearly policy and for the both of us including all existing conditions it £510. Mind you doesn’t cover America.

Hope you get sorted and long may you continue to smoulder.
Jean

[jmsmythParticipant]

Thanks Andy for passing on the post. I too was emembering Dai yesterday and thinking Bout his family. He kept popping into my head the oddest of times. His sister Angie posted a link to song on Facebook that was composed by a friend of Dai. If you get a chance listen to,it it is beautiful. He will be sorely missed but his memory and spirit will live on this forum

My best wishes to Janet and all his family
Love Jean x

[jmsmythParticipant]

Hi Carol

I can only tell you Franks experience. SCT was decided but before he was given date for procedure he had to go through quite a lot of tests and heart and lungs were two of them. Has your consultant not mentioned it. Maybe on younger people they don’t carry out the tests. Mind be worthwhile to mention to consultant. Hope all goes well

Love Jean xx

[jmsmythParticipant]

My deepest condolences to Janet, Becky, Angie and all the family. I hope that Dai knew how we all felt about him and how much we appreciated his friendship. His advice, humour, songs and poetry will be greatly missed

Jean xx

[jmsmythParticipant]

Hi Chrissie

I can understand your frustration. Everyone deals with this illness differently. When Frank first diagnosed he got the whole family together and told them that there was to be no research done on the internet on Myeloma. Any info he needed he would get it from the consultant. I researched all that I could. He did not discuss it at home or with anyone – not me. We did go through some bad times. I went to see a counsellor and I got tremendous support from him and from people on the forum especially two of our younger members who helped me with the perspective of the patient rather than the carer (hate that damn word). Frank holds things back from me – I think he thinks if I don't know how he's feeling then I won't worry. I only find out how he has been feeling when we see consultant and he tells her. This is how he deals with it – although I want to know everything I have to respect his feelings and how he deals with it. After all these years he understands where I'm coming from don't think he likes it but I try to understand him – and I hope he understands me -sometime I drive him nuts.

It will probably take time for your husband to 'get his head round it' I know I did. Chrissie as a carer you have to watch your loved one go through this and there is nothing you can do but watch and try to give support and also deal with your own feelings. I'm not very good at putting my feelings in words but I hope you get the gist. You have a great attitude and this will help you. Sorry for going on. Take care
Love Jean x

[jmsmythParticipant]

Hi Chrissie

Frank gets tired very easily but I think he tried to do things too quickly. We went on a 16 day cruise and I think it was too soon after SCT and took long. We try to go on as usual and put grandchildren keeps us on our toes. Another problem has raised it's ugly head – nothing to do with myeloma – I hope. I had to see an eye consultant about cataracts and he was more interested in a spot on Franks eyebrow and told him to see dr. Long story short saw a dermatologist yesterday and he has to have biopsies beginning December. Something else for me to worry about

Ok rant over 🙂 . Going to have a nice gin and tonic. Take care
Jean x

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