Hi Antoinette
So sorry that you have had to join us all here, but I would also say that there isn't a better place to be.
Reading your post made me think back to when I was diagnosed in 2009. I was 34 with a 2 year old and a 4 year old and it really does turn your life upside down. I think it is natural to be teary and to feel out of control at the beginning….I reckon it took me 6 months to begin to come to terms with it all, but even now I have sad days and cross days about it all. And it sounds like, as I did, you feel you could cope better without worrying about the kids. I know that to this day, when I think about the kids, that is when I get saddest and most teary. They don't deserve to have to go through this journey with us.
BUT, if it helps, our kids have handled things brilliantly to date. We haven't told them the full extent of what myeloma means as they are still a bit too young, but we also don't lie to them. They know mummy is ill with it, they know every time I go to the hospital and that I will come back again. We told them in plenty of time that I was going to be away for a few weeks, but that it would mean that their Auntie would come and live with them for a few weeks. Yes, I think it makes them grow up a little faster, but they can also deal with it all better than we as adults can imagine.
LIke you, when I was first diagnosed I was smouldering. I just had low hb levels, and high calcium levels. THey waited until I showed some signs of bone pain and then went straight into treatment and I went on the Myeloma XI trial. I know it is easy to say, but try to make the most of the time you're not on treatment. I couldn't wait to start as I felt like I'd take the control back.
I always have diazepam now when I have a biopsy….oh yes, and gas and air if it is available….makes a HUGE difference 🙂
ANd the SCT isn't lovely, but it is like childbirth and you forget about it fairly fast!! But worry about that one down the line and after you've started treatment. I am 10months down the line now and nearly back to 100% which even 2 months ago I wasn't sure I'd ever get to.
Make sure you get onto the Under 50 site too if you can….if you go on it on here, and find the post by Scotty, if you let her know your email, she will invite you on….everyone is welcome but it is kept privateish to prevent spam and dodgy internet people!!!
Take care and I promise you that you will come to terms with it in time
Debs x
Oh jean I'm so sorry that the treatment has had to begin, but please please don't see it as he beginning of the end. After all, there are lots of us on here who have started that treatment and who are doing really well. And frank is starting from a really good position too!
I know it's a scary time and things will change now. But we're all here to support you….and frank if he needs it. Things will b different on CDT but it's all to prevent things getting worse which has to be good.
Jean, you have my email. Please drop me a line if you want to and I'll give you my phone number. If I can, I want to reassure you. Only tonight nick and I were talking about our life and how lucky we are….despite everything. And how only 3 months ago I was concerned about how life would be for us. But how now it all seems so much better than we could have imagined. treatment doesn't mean the beginning of the end….just a chance to readjust things.
Big hugs and lots of love
Debs xx
Good luck Keith!
I really hope that things are good.
All the best
Debs
Hi all,
Penny's sister in law has let me know the following details for Penny's funeral.
Thursday 17th May. At 4.45pm.
It will be held at Emstrey crematorium, London Road, Shrewsbury.
Please donate in lieu of flowers to Myeloma UK, thank you.
Penny, you won't be forgotten xx
Helen, Just wanted to say a massive thank you for all of the bits that you've sent through for the Raffle we're holding. Really kind of you and the items will really help us.
If anyone else wants to donate anything, I'd love to hear from you 🙂 After all, it's all to help raise money for MUK!!
Also, we are desperately looking for a GREAT first prize, either something like a TV or a fantastic experience etc. We can even put a little money in towards it – so if anyone has any contacts that might be able to help, I'd love to hear from you. We need this prize asap so we can print our raffle tickets. The name of any company who has donated the first prize will be on the raffle tickets, and we can advertise them on Facebook, twitter and will put them on our website and in our Event Programme.
Thanks again Helen….we really appreciate your items!!!
Debs x
Big hugs Bridget. It sounds like you're having a really tough time so keep that chin up and I hope that you get stronger. Are you getting your appetite back at all?
Lots of love
Debs x
Dear Eve and Slim
I am so so sorry to hear your really sad news.
Wishing you all lots of love
Thoughts are with you
Debs xx
Welcome Jacqui
Love
Debs x
Hi Stephen
Just to say, I think it is TOTALLY normal to be preoccupied with your pp levels pre transplant. I definitely was, and used to phone the hospital as soon as I thought the results would be in! It is only post transplant that I have now trained myself to wait until the next appointment! The reality is that pre-transplant, you know that they are watching it to see when you are ready for transplant, and so you are bound to watch it too!
You sound like you're doing really well with it, so keep that up!
Take care
Debs x
Hi Stephen,
Just a quick one as I have to dash out, but I am on the Myeloma XI trial and started on revlimid. After 4 cycles I also plateau'd and was randomised to Velcade. (My pp had dropped from 55 to 28 by this point). The velcade did a similar thing…dropped quite quickly in the first couple of cycles and then slowed down. I had to stop after 4 cycles though as I got quite bad peripheral neuropathy. However my pp had got down to 4 anyway!! Then I had my SCT and am now at 2.
Andy is right though…each journey is different so just work with what happens to you. But if you have any questions, give me a shout! Happy to try to help. Just watch the PN and report it early doors. I waited a bit too long to stop and it meant I had it for over 6 months before it went away. It could have stayed too. Velcade is great for what it does, but it isn't worth having long term problems with your feet/ hands.
Take care
Debs x
Thanks Helen,
That's really kind of you!!! It's really lovely that people are prepared to go out of their way to help raise some money for the charity that supports us all so much!!
I look forward to getting the package!! It's like Christmas come early!
Debs xx
I use safari and see big and small pictures. My picture is ok though if that is what you mean by safari users being unaffected.
Debs
Hi Ann,
Welcome to the site and I hope that it gives you (and maybe Pete!) all the support that you need. It was definitely my lifeline when I first got diagnosed and everyone here is just so welcoming.
Take care and good luck
Debs x
Hi Trish,
I had my SCT last summer, and my paraprotein came down to 2. My bone marrow (another indicator of remission) was undetectable – well the abnormalities were!!
They class me as having had a Very Good Partial Response. Because my pp isn't zero, they can't class it as total remission. But in reality, I am in a sort of remission as I am stable now and they are really pleased with how things look. The reality is that people who achieve Full remission, don't necessarily stay there as long as those of us who feel cheated at the beginning by not reaching zero.
It sounds like Peter is doing pretty well so if possible, I'd try not to get to caught up with figures. I was desperate for the revlimid that I am on as maintenance to bring me down to zero, but have now just accepted that '2' is my number!!
Good luck
Debs x
Hi Jean
Like others have said, try not to worry too much. But they are totally right that Frank should just be careful who he is around over the next week or so, especially if he wants to go to Spain! He needs to be as fit as possible if he is going to insist on going. I'd also ask his consultant what he thinks. I'm off to Beijing in August but I know that our consultant will a) want me as healthy as possible and b) will send me with antibiotics in case I get ill. Pre transplant when I had low neutrophils etc even when we just went to Devon, they sent me with a letter for a hospital and also antibiotics just in case. I didn't need either, but it did put my mind at rest that I had both things!
In terms of having more bloods next week, I think that is good. They want to see if it is just an anomaly I would think…and hopefully all will be better by then. Sometimes these things are just a matter of bad timing!
The CAT scan – can't believe you haven't even had an appointment date…not very good at all! If you don't get one soon, I would write in and complain…it'll probably happen pretty fast if you do that!!
But speak to the consultant and see what he thinks about Spain….the only concern I would have is being on a plane with such low neutrophils – more likely to get an infection.
Take care and speak soon….it's been a long time!
love
Debs x
