Hiya there..
I am really sorry to hear of your diagnosis but please don't lose faith. My name is Kerry, it's my partner Melv that has Myeloma. He is 39 years old.
Myeloma seems so complicated doesn't it? So hard to get your head around but there is so many treatment options as I'm sure that you have found today.
How did your appointment go? I'm happy to discuss any of Melvin's treatment with you and his current situation. Don't approach this alone. I am sure that you have a fantastic support network but don't be a stranger on here.
Hoping that you are feeling more focused…
Love Kerry x x x
Hi guys – Thank you so much for your messages. It really is overwhelming receiving encouraging messages from you all. Thank you – I am so glad I have joined this site.
I hope this finds you all well – lots of love and best wishes.
Take care Love Kerry xxx
Hiya Wink… Thank you for your message.
You are right, it is the damage that MM causes that is the really problem! I always say that if Melv just had Cancer to accept without the disabilities that it has caused, he approach it with determination and fight with everything he had. However, as he is slowly losing 'who he is' due to no longer being able to go for a walk, work, drive, run around with the children and the dog, take a bath…even stand for more than 2 mins at a time – he is struggling to accept the changes. I am driven by him and his bravery, although I feel like I'm losing a part of him as he is weak, sad and depressed. That isn't my Melvin – he is the toughest person I know and I'm trying each and every day to lift his spirits. At the same time, he is grieving for the person he was.
I hope this finds you well…take care and best wishes. Love Kerry x x x
Hi Megan – Thank you for your message.
It sounds like you have both have it tough too. I'm sorry.
I understand what you are saying about the beg of the MM journey and we are so happy and positive regarding the PP levels, it's fantastic and a step in the right direction regarding the Myeloma. However, the damage that the Myeloma has caused comes with the problems. I'm not sure if you have read my messages about the spine damage…I will just explain very briefly in case you haven't. Due to the disease, Melvin has fractures to the L3 and L4 vertebrae which he managed quite well until September when the vertebraes and pedicles (little legs) crushed and compressed the spinal cord…causing numbness and weakness in his legs and terrible nerve pain. He is now struggling with the loss of independence as he has to remain on a 'special' bed 20 hours out of 24 each day. Life has changed so so much for him and it's painful to see. We are unsure if this will be able to be corrected – at the moment there isn't a Neurosurgeon that will do an operation due to the amount of disease that remains even after 30 sessions of radiotherapy – and of course the risks that come with it.
Accepting that things won't be the same …ever or in the near future is the hardest thing to do. It's all just really really tough isn't it?
I hope this finds you both well.
Love and best wishes Kerry xxx
Oh Sue… :-(. I know that I haven't spoken to you before, I'm quite new. It's also my partner who has MM.
I often wonder *how* you do cope and accept that news??!! If I can be honest, I don't have any advise to give – other than love each other and make this time more special than you have any other.
I am so very sorry Sue…
Thinking of you both
Love Kerry x x x
Thank you Mavis – I tend to agree I think. If you have MM..you have it regardless!
I hope this finds you well – take care xxx
Hi Eve
Thank you for getting back to me with that. I have read lots of literature and have sort of worked it out myself ( i think). I understand the process of MM and what it all entails – I'm a bit of a researcher and send myself crazy looking up this and that! I also ask for copies of the information and always take my note book and pen and document everything we are told. Our consultant and his team are angels and have got to know 'my ways' now so just expect me to want to know the ins and outs of everything. Melvin on the other hand is far from interested – he just wants to know what he has to do and that's all. Melvin starts the 3rd cycle of RCD on Tuesday and when we go to the hospital I will be asking if there is any improvement in the Light Chains, PP etc. So far, there isn't any and we were told that Melvin's bones are 50% effected by Myeloma.
I'm so glad that you're husband is 'on the mend' although I know that the bone damage and pain can be the worst part of the journey – I know it is for Melvin.
Thank you again – take care for now xxx
Hi Peter…
You explained just how Melvin is. He said if it wasn't for the inability to work or resume normal activities due to the spinal cord compression, he would be able to live quite a 'normal' life while on the Dex. However – he suffers such a come down when he stops…like you, he feels so tired, almost lifeless. Only waking to eat most of the time. Then after a few days, he is alive again. The Nurses did prepare us for this but it's still tough.
It's great to hear you sounding so strong with so much fight Peter! Good for you! Melvin would love to work, drive, walk the dog…just usual things but he just can't. That for me is so sad to see and I know frustrates him more than the diagnosis itself.
You keep going strong and take care of yourself.
Best wishes Kerry x
Hi Mike
I'm sorry that you are going through a tough time at the moment. It's my partner who is 39 who has Myeloma, and is also on the MXI trial, RCD. He is at the end of the 2nd cycle at the moment. I noticed that you go to the QE hospital in Birmingham. We live in Birmingham and Melvin will be having his SCT at the QE. What a fantastic hospital it reports to be!
How are things at the moment for you?
Best wishes Kerry.
Hi Tom
I have another person helping me with it all so I'm not totally on my own. Although I complain for being stressed at the moment, I feel like I need to inject all of my frustrations and emotions into something productive…if you understand what I'm saying. I may regret it, it may exhaust me but I feel I need something to focus on other than all the other stuff that's going on.
How are you today Tom? I hope you and 'your young bride' are well.
Best wishes Kerry x
Thank you for your message Jo. People always say that I am coping really well and sometimes I agree. It may be the false smiles and 'I'm fine thanks' that I often reply when asked how I am. The way I see it – I have to cope, I have no choice. Who else is going to look after everything..Melvin and the children? Just sometimes, like now – I just want to scream 'I don't want to!'. I have to say that talking to all you lovely people who don't judge me and who understands makes me feel better. Thank you.
I hope this finds you well Jo..take care.
Love Kerry x
Thank you for your message Andy. It's very tough for all isn't it? Life completely changes when something like this sets up residence in your life and future. We have been referred to a Counselor individually and as a family, so our three children and myself and Melv can go. However..we haven't been yet as the Counselor cancelled the past two appointments and we are now booked in for the beginning of November. Fingers crossed that this doesn't end up the same way.
I hope that things are as good as they can be for you at the moment. Take care and hope to hear from you again.
Best wishes Kerry x
Thank you Helen..what a day I had yesterday! I do feel a little better today, although my moods are all over the place. Our twin boys, who are 11 years old have gone off for a little break with my mum. Suddenly my shoulders seemed to drop. We have a daughter who is 16 and she is still home with us but she is so independent. She is revising for her GCSE's at the moment and with that and socializing, she is a busy little lady. Just knowing that for three days I have 2 less people to look after is a relief. Feeling this way makes me recognize that this is all getting too much for me. Generally i am so patient, organized and I cope. Just now – I need a rock I think. It's just that my rock needs me to be his more at the moment. (sigh).
Thank you so much for reading – I do go on! :-S
Take care Love Kerry x x x
Hi Sarah Jane..
It is my partner Melvin who has MM. He is 39 years old and like you had SMM and then one day went to the hospital to find PP levels had increased and he started Myeloma XI and also is on RCD.
Melvin is at the end of cycle 2 and I think he has coped quite well so far. Unfortunately he isn't working due to his L3/L4 vertebrae completely collapsing causing spinal cord compression. He is waiting for the MM to regress and then hopefully will have an operation to stabilize the spine. Melvin was diagnosed after back pain and found out it was bone damage to the vertebrae also but then went on to have 30 sessions of radiotherapy …..the SMM for 12 months which brings us to now.
Melvin seems to have his better days while on Dex and then about the 2nd day of not taking them, I notice him changing. He is more tired, irritable and quite low in mood. I'm not sure if anyone else has experienced that. As he has only been on them a short time, I can't say if the side effects get better in time. Oh..one other thing he complains of is leg pain and in the sternum…although Melvin does have a lot of bone damage so we never know if it's due to the Chemo or the MM. Unfortunately Melv isn't working at the moment but we did ask the Dr's about working through treatment. What they advised was to find the pattern during the cycle…work out what days you feel most well (maybe the days while taking Dex) and work those days and when you feel down, take the days as rest. I know that all sounds easier said than done but your work force have to comply. Your Dr should write to your company with your permission and explain things. I know they did for Melvin.
Besides accepting the cancer itself, I honestly believe that the financial worries are what make you lose sleep – I know that's how it has been for me. Have you applied for DLA? There are 'some' help out there but as I've found out ..there isn't any help with mortgage payments which is the most concerning factor.
I do hope that this finds you having a well day….remember to listen to your body and take baby steps. Your body is going through a massive trauma and needs to rest..although I know that doesn't help you when the bills come through the door. Try and get as much advise from a benefits officers as you can.
Take care for now Love Kerry x x x
Hi Eve – thank you for your message. I agree with you – I am grieving and I think going through each stage slowly. Today and right now I feel angry…the denial has been with me since 2010 when Melvin was diagnosed.
I hope you are well – take care and thank you again. xxx
