Asymptomatic myeloma

Hi Olivia
Everything has gone smoothly and things didn’t get too bad after the chemo.
The transplant is over very quickly, staff at Christie’s have been amazing.
The fantastic news is that I am going home tomorrow, so happy.
Do you have a date for hubbys transplant now?
I’m sure it will go very smooth.
If it helps, I thought that it wasn’t as bad as I was expecting and what I have read about.
Good luck, please keep me up to date it has been a real help and comfort being in touch with you :kissing_heart:xxx

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Hi Paula

Welcome to the forum you have found the right place to get support. I was diagnosed with chronic lymphocytic leukaemia 2 years ago and like you am on a watch and wait . I think everyone reacts differently to the initial shock of a diagnosis like this and I guess you have to do what is right for you. I’m a nurse so my reaction was to read everything I could and arm myself with information so I know best how to help myself and I’ve been very open about it throwing myself into awareness raising but that isn’t the right thing for everyone. Just take your time and let yourself have the thoughts and feelings before you decide how you are going to deal with things going forward. I think the support of friends and family is so important so you have an outlet and someone to talk to when you have a tricky day Do the things you love to do with the people you love to do them with Xx

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Oh @Paula1 that really is fantastic news that you are going home tomorrow.
There is nothing like your own home, food and bed.
Please do keep posting how you are and be ever so kind to yourself

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@Paula1 ,

It really is great news. You have had a really good journey so far. Didn’t I tell you it would go ok? You have just tolerated every step so so well. How many days will you have been in hospital, only it doesn’t seem long at all? Were you in a room all to yourself? I don’t know much about this stage at all. We going in for a chat about Stem cell transplant later this week. Hubby struggled with the GCSF jabs and still has pain in his legs, but it’s slowly improving. He struggles to get to sleep due to this so he’s feeling worn out at the moment. He has always been a good sleeper, so not coping so well on little sleep. Fingers crossed it improves. We are both positive people so just deal with the cards we get and try to move forward best we can.This forum has been so rewarding and helpful. Like you, it has been good to share the journey and great comfort.
We are so very pleased for you, you so deserve it. Of course we will keep in touch, let us know how you are doing too, good or bad. I’m sure in your case all good!! Please let us have any tips or advise that may help hubby. We still waiting for a date but looking like end of May, so not long now.
Anyway, looks like I’ve written war & peace, so, will come to a close for now.
Sending you a big hug, hope you are now at home chilling out and being well looked after.
Take care.xx🥰

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@2DB , @Erica

How are you both doing?xx

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Thanks for asking @Olivia I amid three weeks of medical appointments and you really do have to keep abreast of paperwork and have an up to date diary.
Yesterday, today (Saturday) and 2 on Monday and I have to look at my diary beyond that.
But apart from that all is well!!!
How are you feeling?

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Hi @Erica , glad to hear all is well. I can tell that you will be really organised with your appointments!!
I am starting to get a little anxious as hubby is due to have his stem cell transplant in a couple of weeks. I’m trying to get him organised to make the process as smooth as possible. We are well informed and know what to expect, so that has helped, but I still want to get things right to help the process along.
The blood cancer journey is a tough one, so where I can help, I try my best,even if it is small things, like preparing the hospital bag and getting essentials ready!
I have done lots of research too, which has been enlightening….
This forum has been invaluable and people like yourself are inspiring. Take care, look after YOU….x

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@Paula1 ,

How’s things???

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oh, @Olivia i am like you i like to be really organised.
If we ever went on holiday i would be sitting on my packed suitcase by the front door a week ahead.
My husband would be asking me the the night before where his things were.
Perhaps there is no right or wrong, we are all different.
Please do keep posting how you both are, and don’t forget we are here for you too.
Nobody asks how the carer is. I asked someone yesterday and she just burst into tears, it can be a lonely role.
Look after yourselves, it can be an anxious time for you both.

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Thankyou @Erica , you take care too.x

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Hi @Olivia
Thank you for asking I’m doing well
Had treatment and Zometa couple weeks ago felt out of sorts for a week or so
Have been monitoring some lower back pain which seems to have eased
Other than that enjoying the sunshine and being outside :slight_smile:

You are organised re hubby’s transplant
I’m a pack my bag just before I leave as I don’t like waiting I just want to get on with it :smiley:
I think your amazing support just kept doing those little things and be informed x

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@2DB,
Nice to hear from you. Hope the back pain is subsiding and to feeling a bit better.
Thankyou for your kind words, I’m trying my best. My worst days will be when hubby is in hospital. I will worry, but won’t want to visit too often, as he needs to rest and I want to limit infection. I will have to find a balance. I also know there is still a long way to go, it’s a continuous journey. The people on here are all amazing including you, so kind.Take care of yourself. Is there a facility on here yet to private message people ? Xx

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For the days you may not visit if hubby is up to it FaceTime or wats app video call
Make sure he has plenty of data in his phone incase wifi isn’t working/available
Don’t get too worried if hubby is too tired for visitors that’s par for the course
Organise a distraction maybe go out for coffee with a friend
The nurses will be on top of everything as they deal with transplants on a daily basis
Also if you deal with meds for hubby get him organised so he can keep an eye on meds in hospital.
I know mine inside and out and when I take them etc
The transplant stage is the start of recovery and hopefully to living a new normal but with myeloma included

No you can’t private message contact @BloodCancerUK-SupportTeam see what they can do for you
Xx

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Thankyou @2DB, I will take all the good advice on board.:smiley::crossed_fingers:

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Hi Olivia,
Sorry haven’t replied sooner only just starting to feel like normal, was on a high dose of antibiotics after transplant as the line they put in my chest was weeping, all sorted now and line is out. Had bloods checked Monday and all is very good.
How are you and hubby getting on? Transplant must be very soon now?
Take care xxx

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@Paula1 ,

So good to hear from you. So sorry you had to have antibiotics. I bet you are glad to have the line out. Hope you are starting to feel well again. Please look after yourself & get loved ones to do so as well.
Glad that you are on the right track.Its nice to follow your progress.
Can you think of any tips or advice for hubby? He has his transplant next week. Now it’s nearly here, I think I’m more anxious. I just hope I’ve managed to think of most things. Did you have many visitors? I know people get quite ill and may not be up to it, but equally it must be good for mental health & motivating to have some company down the line. I just hope he asks for help if he suffers, as he never wants to bother people! I think it best to let him decide when he wants to see people, but keep numbers down to keep infections away.
It would be nice to continue with you on your journey & see how well you do. Take care xx❤️

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Re not wanting to bother nurses
Can you please please tell hubby from me that it is no problem to ask for help through transplant it’s very very important that he tells them of any changes he is experiencing so the nurses can be on top of meds etc. Nurses are well used to being buzzed and tell him it’s ok to ask for help we are no hero’s being silent :hugs:

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Thanks @2DB, I will try. Very good advice. Hope you still doing ok too.xx

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