Congrats! That's wonderful. 😀
Hiya,
I would also ask about Thalidamide to see if it's an option..
All the best of luck..
Chelle xx
Hi Mike,
So wonderful to hear from you! You are more than welcome to come. The next meeting is 7 Dec @ 14:00. It's on thev1st floor Jubilee Wing Seminar Room. It's right behind reception. Where are you possibly aving you SCT. Hope to see you on the 7th, if you need anything before please don't hesitate to contact me: burtonmyelomasg@ahoo.co.uk or 07872 562536
All the best,
Chelle xx
Hi,
I am so sorry for your loss. My husband passed 10 March. There are good days, bad days and days I still feel lost. Have you thought of bereavement counsiling? I had my 1st one on Monday & found it very helpful. I wish I knew the magic words to help but unfortunatly they're different for everyone. Just know there is always support on here. Feel free to send a private message as well if you ever want to talk. Hope you are holding up ok..
Best wishes,
Chelle xx
I would just like to say a huge thank you for all the kind words. We are managing day by day and tear by tear. My 1st concern is the 2 oldest kids. I have spoke with both their schools and am sorting bereavement counsiling for them. The baby is doing better. Getting to be more of herself. Hopefully they will cope OK on Friday. It's tough to be strong when you feel so weak. Thank you all again very much..
Lots of love.
Chelle xx
Hi Gary, First off.. Don't be embarrassed!! It is wonderful that you want to help your sister. I am the carer for my husband who is 37 (DX 2004). I wish I could say the magic words to solve the situation but unfortunately… Cancer sucks.. And there is no easy way. Phil had SCT and different chemos over the past 7yrs (including Thalidomide) and did quite well. This past year MM has been running the show and I have noticed a change in him. We have just been told that Phil's only options are drug trials as there are no more NHS chemos. I would say just reassure her that the Consultants will do everything they can and there are so many different treatments now. Thalidomide is just the tip of the ice-burg. Maybe plan a special day out just the 2 of you. Don't tell her the details just say you need to run out and surprise her. A day not thinking of MM is a good 1, and she just needs to get use to not having it 1st on her mind. That can be tough.. It's the not knowing that can be so tough and with MM there is only not knowing. This forum is very helpful and you can email us anytime. You may want to contact Macmillan as they have "therapists" to help with the depression of all that is going on, support groups or the PEER network run through Myeloma UK are other options. Feel free to contact me if you ever need to chat (or vent). This is a hard road to be on, carers need support as well. Best of luck. Keep us updated..
Chelle xx
Hi and welcome. I have to agree with the others, the support you will get here is wonderful. I am a carer to my husband Phil. He was DX 2004 at 30. He has done well but the past year MM has been taking a toll. The feelings you have are so normal. You will have good and bad days just like he will. Phil was just admitted into hospital for the 2nd time this week and tonight I'm taking it harder than I was the other day. Some days just effect you differently. I started a support group in my area and would recommend finding 1 near you. They can be a great way to find out about how things have effected others, different treatments that are starting, what to expect at appointments and just to talk to others that can relate is wonderful. Also, don't forget to take time out for yourself. being a carer can take a toll on you as well. You need to be "healthy" as well. Even if it's just meeting someone for a coffee for and hour- take the time… You may feel guilty at first (I did) but you need to be able to take that deep breath.. I hope all goes well. We're all here if you need us. All the best and keep us updated…
Chelle xx
Welcome to the forum, sorry it's under this situation. I am 37 and the carer of my husband (also 37). You're levels are very low which actually is a good time to av a SCT. I wasn't with my husband when he had his in 2005 but I do know you will need a lot of support. It is a difficult recovery, in some aspects more emotional. It's the only time he lost his hair and was in hospital (Birmingham) for about 3-4 weeks. It's too bad you medical staff isn't more supportive, that is 1 thing we are VERY lucky with. We av a wonderful support with our nurses and Consultants and I say we because I know I can count on them as well. Where do you go for treatment? I started a support group and can't recommend them enough! Phil was skeptical about going to one but has become my co-leader. They can really do a world of good getting different ideas and learning about things that you may face in the future. Stay positive! This site is wonderful as well as Myeloma UK themselves. You're not alone.. Hope all goes well for you. Keep us updated…
Chelle x
Hi,
Just wanted to wish you both good luck on the op. I'm sure everything will go fine. I'd love to say don't worry but as a carer myself I know that's not possible. 🙂
Last year my husband got his flu jab so hopefully he is on the list this year. My GP's front desk can be awful. If you don't get a letter they won't do anything and don't want to hear about it. They are always so difficult to deal with. But I could rant about them forever…
Anyway, best of luck with everything & update us on how things go.
~Chelle
Hi,
Was nice to meet you as well. Yes our 1st meeting is a few weeks away! Getting excited & nervous.. Thank you for the support!
Chelle
Hi,
My husband is on Zometa and touch wood had had no problems. He has had about 3-4 infusions. I'm not sure if he can be switched but it is worth asking the consultant or even calling Ellen on the info line here as she might know or be able to point you in the right direction.
Best of luck,
Chelle
Hi,
My husband has been off since late March. He was told when his levels were steady for +4weeks he could go back (mainly his neutrophils). They went a whole 4 weeks but that's it. He's still home. As much as he is waiting to go back it is for the best and it had taken his SO long to come to terms with that. He would go to work if his eyes were bleeding out! There was 1 time I told him he shouldn't go because he didn't look right, he went.. Then came home ill… I think with men it can be a pride thing. I would mention his symptoms to his consultant or even call the nurse yourself and ask their opinion. I do it all the time. The Consultant will ask him how he's doing then ask me if he's left anything out!! lol He does want to rest and not through his red & white cells out a wack, he is a t a risk of infection because of the MM. If he has holiday time suggest he take it and then he can have some down time. I know you're worried it's natural being the carer.. It's a balance of still letting him have control of his health (for lack of a better word) and stepping in yourself and saying.. NO! Trust me you will know when you have to put your foot down. I still struggle because I want to do everything and he still wants normality. I would say if he has holiday time ask him to use it, he may see himself he feels better taking it easy. Good luck. Thoughts & prayers.. xx
Hi all..
Thank you again for the lovely words. We saw Phil's Consultant today. He doesn't think the Revlimid is working like it should. Doesn't think it is a "Blip" since the levels have gone up that much. Going to stay on the Revlimid for now and been referred back to Dr Cook @ Birmingham to hopefully start on the Bendemustine Trial. He was too ill before but should meet the criteria at the moment. Fingers crossed he stays healthy enough to start that ASAP.
On another note I'm not sure where any of you are but I have started a Support Group at Queen's Hospital Burton. The 1st meeting is 12 Oct and will be bi-monthly in between Derby's Group. Please feel free to contact me for any information. Would love to see any of you there. All the best. Hope you all are feeling well. Thoughts & Prayers are with you all. Thanks so much!! xx
Hi. Just wanted to Thank everyone for the lovely words of wisdom. We are back at the Consultant in the morning so fingers crossed. I do try and stay positive I just hate getting knocked back 2 steps after going ahead 1.. Guess that's the name of the game though… Thank you again.. Will let you all know what happens at the Consultant. xx
Hi,
I don't know if you ever "know" how to act. My husband is 37 and was diagnosed at 30. It was caught by accident and was fairly good the past few years. This year has been SO different! He has been quite ill and we've actually started talking about death. I try and do the good and the bad. I'll tell him how things will get better and they will sort out treatment and get him back into remission but all through tears and tissue. We have 3 kids (2 of which he has taken on) and a 1yr old. I can't bare the thought of becoming a widow but it is something I have to face. Let him know you are as scared as he is. Let him see that you do cry and fear life without him. All you both have is each other to get through this horrible disease. It's not easy and it sucks the life out of you at times. I hate seeing my husband in so much pain and so stressed… I just started a Support Group and I would honestly suggest finding 1 near you, they really do help!! I'm in Burton. My thoughts and prayers are with both of you…
All the best!
Chelle xx
