Just wanted to update you all, i found my dress
Oh my goodness - I feel so excited for you so you must be dancing from the ceiling! I hope it was everything you wanted. Your day is going to be just perfect! did you all have a wonderful day?
I’m very excited we had a lovely day, it was very weird because I already have my dream dress but this one is perfect for our little wedding xx
Oh @Fighting_MM I am overjoyed for you, you have made my day, whoopee.
Just beautiful @Fighting_MM X
@Fighting_MM so pleased for you and it sounds like you had a really special day. You have the right attitude. Life doesn’t stop because you have these curve bal*s chucked at you sometimes, it’s all about learning to live a full and lovely life despite them with mm not taking centre stage. Xx
Well said @Lyn99 and I always chuckle when this site will not let us post bal*s.
As Rod Stewart sings ‘Live the life you love and love the life you live’.
Go for it @Lyn99 and enjoy the good times
Hello @Fighting_MM ,… I’m new on here too but wanted to reached out to you as I was 29 when diagnosed with MM & it’s been a roller coster ever since,… but what the other lovely people on here are telling you about no two people or their cancers being the same is true,… it really is a different experience for everyone,… I had radiotherapy , chemotherapy , stem cell transplants , hip replacements & going through the menopause & that’s a lot for anyone but especially when your young & planing other things in life & then all of a sudden everything flashes in front of you,… and the worst thing to do as a newly diagnosed MM patient is to Google it - I remember reading that I would have 3-5yrs & being terrified - there was no one to talk to that had any experience of going through this type of cancer let alone anyone near my age - I felt & sometimes still do that there’s no one to talk to regarding this cancer & all it entails, I’m glad to be able to find some common ground & lovely people on here,… I just wanted to reach out to say if you do need any Qs answered or there’s anything you want to know please don’t hesitate to ask away ,… I also wish you all the luck on your upcoming wedding !
Big love🙏
Good luck with that wedding @Fighting_MM , you’ve certainly earned it and it will be all the more special because you’ve had to jump through extra hoops to get there. Don’t forget to tell us all about it!
Hi @SunShine77 you certainly did have a bag full of things since diagnosis to contend with, a great big welcome.
I find that we are such complex beings and symptoms can be similar. I also find that consultants are experts in their own fields.
Eh, I found that same Google site with life expectancy and that was 18 yrs ago and I am still here.
I look forward to hearing more about you and look after yourself
Hi @SunShine77 and welcome to the forum. It’s great to have you here and already, your
post would have helped so many. Your journey sounds very busy with lots of different treatments. How are you doing at the moment? I look forward to hearing more from yo
Hi Sunshine
I too have myeloma, eventually diagnosed end August 21. Consequently have several compression fractures in my spine so need crutches to get around as my back aches a lot when I am mobile. It is a step up from a wheelchair so should be grateful. I had my stem cells collected last week and chemo and transplant scheduled for w/c 11/4/22. Hoping all goes well but must admit I am scared. I am a complete wuss when it comes to needles (having a picc line inserted next week - never had one before), pain and being sick. The staff at the hospital are fab but I still find myself breaking down and crying like a baby. I wish I could be all brave and smiley but emotion just takes over.
Good luck with your journey.
Anita
Hi @Anita, perhaps you are being very hard on yourself.
I have Chronic lymphocytic leukaemia (CLL) but I have had 7 or 8 compression fractures of my lower vertebrae too and so I really know what that pain can be like.
They thought I was going to end up wheelchair bound in 2012.
I was on crutches in 2012 when the Olympic torch went nearby.
We got there early and I was right at the front of the pavement ready with people behind me, then the organisers decided a slightly different route so everyone rushed to the new front and I was left on my own, in pain, on crutches.
You transplant really is becoming reality now and that must be so scary, the unknown is.
I find telling my medical team my fears helps and as you say they are fab and really understanding.
I don’t call having a fear of needles, pain and being sick being a wuss.
I also find since diagnosis I am far more emotional and I start crying at the least thing, especially in hospitals.
Please keep posting how you are getting on.
Look after yourself and be kind to yourself
Hi @Anita, just wanted to wish you well for your transplant. I had mine August last year. I think most people having their own stem cells back for myeloma get through the treatment well. Just make sure you can contact people while you are in hospital, whatsapp is great and that you have some home comforts with you.
The pic line is ok and it makes it easy to have any infusions and stops them having to stab you with needles constantly as they take more blood than a thirsty vampire when you’re there!!
I think everyone cries in the hospital, we have a lot to process and deal with so just let it out when you need to. Will they help you with your vertebrae after your treatment? There are procedures available that might help get you more mobile again. x
Hi @Fighting_MM @SunShine77 i was diagnosed at 49 with myeloma in 2017
I too was told it was an old persons cancer mainly men and the support group confirmed that I only went twice, I wanted to be with people my age.
I had my first stem cell transplant nov 17
I enjoyed nearly 4 years good partial remission
I relapsed sept 2021 started DVD and about to have my second transplant 19th April
I present with boney disease so I have lesions in my spine/ribs/pelvic area
I had a fractured T9 and a fractured in lower pelvis 2017 had radiotherapy to the T9
I didn’t know I had a pelvic fracture as that wasn’t picked up till looking at recent scans
I have managed this with Oxycodone and gabapentin.
Sept 2021 I was found to have T3 T12 C3 lesions and another pelvic lesion hence my second stem cell transplant
@Anita don’t be afraid to tell the team that you are really anxious about being sick there is plenty of anti sickness they can help with
They can start you on it before priming chemo
Are you having melphalan?
Make sure your pain meds if you any are given so that you can lie down move around
Having the picc line in is more uncomfortable than painful I watched mine going in on the screen
You have to keep your head to one side so they can move across the shoulder
Again tell the team and the person putting the line that your nervous/anxious
I found the person doing mine made me laugh and was happy to explain what he was doing.
You will cry in hospital it’s the only time that you don’t have to put a brave face on
The nurses are lovely
I had counselling while I was in the first time and giving some coping skills
I really found it hard not having hugs.
It’s all doable
For newcomers to Myeloma
Myeloma Uk is a great source of material.
Don’t google anything else for now
Myeloma Uk will provide all you need
We can’t be brave and smiley all off the time. We convince ourselves we need to be strong but actually, it’s to the detriment of our mental health. A little cry is just fine. We are all here for you xx
Hi 2DB
Your condition sounds very much like mine, I have several compression fractures in my spine. I am a young 64 who, before I got this wretched disease, was very active. One of the things which bothers me is I am shrinking at an alarming rate. I was 5’ 3” in September last year but am now just under 5’. Have you lost any height and if so how have you managed?
Many thanks everyone for all your support, I know I have a lot ahead of me in the next couple of weeks.
Regards
Anita
Hi, sorry I have another question. I have received two different answers from the medical team. I know my hair will fall out after receiving chemo but will I keep my eyebrows and lashes or do they fall out too?
Many thanks
Anita
Hi @Anita
I lost my head hair and most of my eyebrows, but kept my lashes. My leg hair also went. I think it’s likely a very individual outcome though.
Best of luck with it, Anita. Let us know how you are.