[jmsmythParticipant]

Hi Sue

Welcome from me as well. I know you don't want to be here but you will get the support and friendship that you need. Ken has had a rough ride but David is right this d**n disease is so individual. My husband smouldered for 6 year and started treatment in June. I knew about the Dex and dexitude from the postings on the forum but when Frank started to take it – all I can say is 'oh boy'. He was everything that David said and Frank described it as "an alien taking over my body and I have no control". I think the withdrawal days were the worse. He is now waiting for stem cells to be harvested. Sue there is light at the end of the tunnel – you have to believe that. Since Frank came off the Dex he has started to go out – specially the pub to watch United play. I hope kens mood starts to improve but if you feel like a rant or a good moan come on here – feel free.

Take care
Love Jean x

[jmsmythParticipant]

Terry what a terrible terrible time you have had. Sorry I can't help with any info but I'm sure someone will come along who can help. Best wishes to you and loved the car 🙂

Love Jean x

[jmsmythParticipant]

Hi Ann and Pete

Frank went today for the high dose chemo and starts the injections tomorrow . We were told that there may be aches and pains in back, legs, or chest. Nurse said this is a good thing as it means marrow producing cells!! We have to go back next Wednesday early in morning and they will take blood and we have to go to canteen were Frank has to eat cheese, yoghurt and drink milk.!!!Then when we go back they can tell us if the harvest will go ahead or more injections. They could not give us a date as they only have 5 units and Leukemia and lymphoma patients take priority.

Hope Pete sails through it and he gets a date soon the waiting is terrible

Keep well
Love Jean xx

[jmsmythParticipant]

Dai some more great news. Well done!!! Take care
Love Jean xx

[jmsmythParticipant]

Michelle that is really great news. Frank is going for harvest next Wednesday. It is so inspiring to read posts like this. Thank you and have a fantastic Christmas

Love Jean xx

[jmsmythParticipant]

Hi Ann and Pete

Frank is 2 days behind Pete. He is due on 19th (all goes well). So I will be following your posts closely and wish Pete the best of luck in the world. Ann we were having 12 for Christmas and the registrar sad no. So we cancelled. But we don't thing she is right. We are seeing consultant before the zap of chemo starts so will have a word with her. I just love Christmas. Ann Pete the best of luck and I will be thinking of you

Love Jean xx

[jmsmythParticipant]

Hi Emma

Like Vicki I cannot say anything that will be of help to you. But I know what you are going through and I hope you get some comfort that there are many thinking about your mum. And wishing her well. Good luck for tomorrow

Take care of yourself
Love Jean x

[jmsmythParticipant]

Hi Vicki

Thanks for your advice. At first I was a bit uncomfortable when people visited but not now. Frank is more important. I have the poor mans head turned. He went with sons to pub to watch United. He has the hand wash, wipes and I made him take first defence before he left the house and he has it with him. And I forgot the Manuka honey – which he hates :-/ one of the nurses told us it might be February before he has SCT. as you say the waiting is the worse thing and yet I am dreading it. I do hope Colin is going from strength to strength. I have a little notebook and I am noting the advice and tips that I get from the forum. I was just telling my DIL that I don't know how I would have got through this without the forum

Tom a man who,doesn't like football!!! They must have thrown away the mould when they made you 😛 franks treasure is a signed photograph of his hero Ryan Giggs. With having 4 sons I had no option but to get involved in football and must say I do enjoy it. When I think I have the off side rule sorted out in my head something happens on the field and I'm back to square one.

Keep laughing Tom and us 😀

Take care love Jean xx

[jmsmythParticipant]

Hi Dai and Paul

Dai thank you for your post – you spoke very eloquently about Paul. I know we have lost very good friends to the this awful disease but I think it hit hard because as you say he was doing so well and was so young and just something that I never expected. I will make sure that Frank takes recovery very slowly and just pray that all goes well. How have you been Dai? I hope that things start looking up for you

Paul my sons tell me that I am OCD. From Frank was diagnosed everything was wiped with disinfectant wipes- even our bed is sprayed with Dettol spray. I am a sad person as I take the stuff with me on the plane and to a hotel. Everything is wiped. Don't know if I could do the fish and chip thing 🙂 I am taking my 'detol kit' into the hospital – just to give it an extra clean. I know I am a sad person 😛 Franks flight has been cancelled and our other son will be going for Steven. We were having a party for Steven (30) but that was cancelled as well as our guests for Christmas dinner. I would not relax and am sure that I would make people uncomfortable watching for a sniffle. How have you been since the SCT. Are things good for you?

Thanks again to both of you
Take care
Jean xx

[jmsmythParticipant]

Hi Charlotte

I can give you Franks experience. He was diagnosed in 2006 with Smouldering MM in Sept 2006 and was monitored every 3 months. Bloods and everything were fine and the he took a pain In his side. He had it for 18 months and was sent for an MRI which didn't show up anything Pain went on and it was decided to have a PET scan (I think that's what it was) when I asked what the difference was I was told that an MRI was looking at a photograph through Vaseline and the PET scan was looking through a glass – clear as crystal!!! They found he had two lesions on his ribs and was referred to radio therapy. The consultant said radio therapy not necessary and he started CDT and after a couple of months pain had gone. Charlotte you know your own body and if you have any concern I would suggest that you ask for the next scan up from the MRI. I remember Eve (a member of forum) saying that with this bl**dy disease you Learn to be assertive and I can relate to this. This in your illness and you have to be In Control. I hope you get sorted and do please keep us informed

Love Jean x

[jmsmythParticipant]

Yes Helen a complete bolt from the blue. Doing the blast of Chemo on Tuesday and then injections twice a day till the following Wednesday and if all goes well they will harvest on the Wednesday. No date for the cells to be put back as we were told that Leukemia and lymphoma patients get first dibs. It was quite a shock but we are seeing consultant on Tuesday to sign papers etc and Frank has a few questions for her – should be fun. Hope you are well and that whooping cough has done the proverbial !!!
Take care
Love Jean x

[jmsmythParticipant]

Helen thanks so much for the info. I am so glad that I posted my concerns on the forum as the replies, info and advice that I have had has made things so much clearer and put my mind at ease a little. I can't help but worry as my mind runs riot. The registrar had said that if he put the SCT of for a a time he may relapse andd then he would have to go through the CDT again. I thought Frank was going to have a hear attack as he told her that he would not go through that again.

Thank you for your good wishes and I hope you are well after the treatment

Keep well
Love Jean xx

[jmsmythParticipant]

Hi Babs thanks for that. I am trying to get things straight in my head so I can give Frank Informed information. When I think of your post it does make sense to try and keep him infection free as possible. One of our sons tell s me that I am OCD when we have visitors they are made to cleanse their hands. I will pass your info on to Frank as it will help him understand why the medical staff are concerned

I hope that you are well and thanks for the info
Love Jean x

[jmsmythParticipant]

Hi Megan and Ali

Thanks so much for your posts. I really appreciate the support. Don't know what I would do without the forum and all my cyber friends

Take care and thanks again
Love Jean xx

[jmsmythParticipant]

Hi Peter

Not sure if I am thick or what. Clicked on the link and it brought me into the site but can find no link to play the recording. I am very interested to hear it as Frank is going for SCT. Any guidance how to listen

Thanks
Jean

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