Asymptomatic myeloma

So glad you are ok.:blush:
I’m ok Thankyou. The whole transplant process is a roller coaster as you well know. Nothing can really prepare you for the bumps in the road. I’m really tired but just happy that hubby is finally eating and starting to feel a bit better. He is also getting over an infection. He’s not had it easy but just getting on with it.
Then yesterday he had a GCSF injection and an hour later his stomach had a lump the size of a small football! The doctor thinks it’s a nicked blood vessel. ( haemotoma). He has to wait and let it dissipate, he will have one huge bruise for a couple of months. As long as he’s not in pain I’ve told him to only focus on the positives. On the whole they are happy with his bloods and progress, so win, win.
Thankyou 2DB for your support & kindness.:smiling_face_with_three_hearts:

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That happened to me with GCSF my stomach was black by the time I got home.and sore.
That’s fab he is feeling better bless him
It’s hard on our loved ones and your doing amazing too don’t forget to do your little positive things be it a shower/bath favourite moisturiser a nice coffee etc
Yes positives are what get you through even the tiny ones
See that glimmer at the end of the tunnel it’s getting brighter
X

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Bless you @2DB , hope your tummy is ok now. Thankyou for your advice and support. It means the world to me. :heart:
This forum and its members have guided me & hubby through this Myeloma journey. I hope one day I can pay it forward and help someone. This is the main reason for still posting, not to complain, but to let others see, there are bad days and bumps in the road, but it’s true that there is light at the end of the tunnel. It’s also good to see when people say they have experienced similar side effects, infections etc, it makes them more bearable and also expected. I know some people prefer not to know but I like to be forewarned and a little prepared.
As a loved one supporting a myeloma sufferer if I didn’t do the research and find this amazing forum, I would have been going out of my mind, wondering what was happening to hubby. I still worried and felt helpless, but I dealt with it in my own way and thankfully coped. I know it’s a continuous journey, but thankyou to all who have shared it with me up to this point.
Here’s to more awareness, research, better treatments and a cure for all blood cancers in the future.Thanks guys.:+1::heart:

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Hi guys,
Quick update hubby is home, day 14 after his stem cell transplant!!
I can’t believe it as they said he would be in hospital between 3 - 6 weeks. He has been so ill too the first week with so many different issues, so has done exceptionally well. The consultant said his stem cells worked very quickly so his neutrophils rapidly went up. They were amazed at his rapid progress.
It is such a turnaround, but he has lost most of his hair now, lost over a stone and as expected has severe fatigue and still no appetite .His mood however is improving now, so being home is helping him mentally. Due to this forum and its many kind members, so many to mention but especially @2DB, @Erica, @Paula1, @LauranBloodCancerUK , we have been prepared for all these things on this blood cancer journey. Yes it’s tough, but doeable with the right care and support.
Many thanks to the wonderful NHS and all you guys on here.please take care and look after yourselves.:smiling_face_with_three_hearts:

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Hi @Olivia
That’s great news and he will recover better at home I was sent home once my neutrophils were at 1 as the team thought it would be better for me.
I was an hour and half away from family.

It will take time for him to gather his strength and start eating again. Be aware he is still at risk of infection so practice good hygiene. Be mindful of people with any infection coughs colds etc.

At this time whatever he fancies let him have even if it’s chocolate all day :smiley:
Very little will taste normal
I found I could manage only a spoonful to start with.

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Hi Olivia, such wonderful news to have hubby home, much easier now for both of you.
So good to hear of another successful transplant. Baby steps now for a while.
Sending lots of love to you both xxx

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Oh @Olivia thanks so much for your hubby’s update.
@2DB has given you a brilliant response.
You also show so well to us all that everyone is different and perhaps it is alright not to fit into ‘normal’ ranges, especially when it is on the good side, we are all so individual.
My go to when unwell is tinned custard and ice crem, and as @2DB says, chocolate, even though my taste buds are up the creek.
How are you doing?
My hubby says if he is unwell I have a tendency to peer at him, and that really annoys him!!
Be kind to yourselves and spoil yourselves and that can be by doing nothing.
Recovery can be a long and winding road with potholes for both of you so please do keep posting how you really are too.

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Hi @Olivia,
This is brilliant news- thank you for taking time to update us. I appreciate it is still early days but what an incredible response at this stage- you both must be very relieved. I would imagine his recovery & rest will certainly be aided by his own bed, home cooking and being home with you.
I’m sure you will have received this or potentially already read through similar but this booklet can be a really useful guide in knowing what to expect after transplant- Blood stem cell and bone marrow transplants: the next steps (Anthony Nolan) | Blood Cancer UK Shop.

As always Olivia we are here for you both at any time. Please do keep us updated.

Take good care, Lauran

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Thank you so much @LauranBloodCancerUK . I will read through all of it. Hope you are well too.x

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Hi guys,
How is everyone doing at the moment? Just thought I would check in.
Im feeling a bit tired but so glad to have hubby home. I’m trying to get him to eat and drink a bit more, but he is still really struggling. I think he’s fed up of my encouragement now. I realise it must be so difficult when your brain is saying you don’t want anything.We are doing twice weekly visits to hospital for his bloods and he’s still having platelets. His neutrophils dipped to 0.6 so he had to restart GCSF injections for a few more days. They say it can happen after leaving hospital, he was disappointed but we focus on the positive. He always has stomach ache with the injections.They are going up again now.He generally feels well other than the fatigue. He is sleeping a little better, so that’s good.He gets frustrated as he is out of breath doing the smallest of things, also very common. He is not one to sit around, so it causes slight tension. These are testing times for both of us as we are both usually so easy going and not phased by much, but myeloma & a transplant are now pushing our relationship a little, lol. :slightly_smiling_face: In sickness and in health!!
As a loved one it’s hard to get the balance right of caring/ helping or becoming a “ nag”. I now leave him to tell me if he needs/wants anything and only speak up if I know he needs more food or fluid. I have managed to get him to walk around the garden each day, as you all say BABY STEPS. This is progress….
I am constantly trying to think of different things he can try, to tickle his tastebuds. Sips of Smoothies, milkshakes and ice pops are his go to at the moment. I also put bits of food on a saucer rather than a big plate, seems to help. Throughout this journey I try to keep busy, but I have made sure I continue to exercise by walking our dog, and eating regularly. I know I need to stay healthy
too. Hope everyone is doing ok.Keep us updated.Take care……Olivia x

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You’re doing great you’re both working out this new myeloma life hubby will wonder what’s just hit him and trying to make sense of it all.
It will all improve just take each day as it comes

It will take time food wise
Weetabix might as well be cardboard
Nothing tastes like it should
Try protein based foods like boiled egg cheese toastie chilli chicken tikka
When you feel sick a big plate of food is nauseating
I live on porridge boiled egg and cheese toastie for the first few weeks

Cup of tea tasted yuck

Spoonful of food is all I could keep down
I kept Annabel Karmal toddler food in freezer
The cottage pie is nice and the tikka masala

I found showering hard going when I got home
I’m a single parent and was determined I was making my own drinks and coming downstairs each morning
Try and encourage hubby to make a drink and make himself a bit of food to keep him moving

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Hi @Olivia and @2DB wow @Olivia you have so much personal insight and yes, progress is tiny baby steps and I am not surprised your relationship is really tested, your whole dynamics has gone out the window.
It must be so hard to feel so fatigued and weak, that loss of muscle strength and all foods and drink tasting of cardboard.
My husband definitely easily feels controlled and his hackles raise.
Yes, perhaps give your husband space and really look after yourself as well as you are trying to look after your husband.
I think frustrations and tensions are so hard to cope with. I know I take actions and words to heart.
@2DB has given you a great response and perhaps ask your husband if he would like to do or eat something.
I hope others can help you more with their experiences.
Please do keep posting how it is for you and give it time.
Lots of love xx

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As always some really good advice from @2DB and @Erica.
Thanks guys for the sound ideas. I will definitely try some of those. I have already started to give hubby more space, but I will now get him to do more like get more of his drinks and food. Thankyou.:smiling_face_with_three_hearts:

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Hi @Olivia perhaps I might ask my husband if he would like more space and ask him what he fancies to eat and drink so I can get it in for him to have when he fancies it!!!
You are doing brilliantly, I find that it is a fine line to meander here!!!

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