just checking in to help my wife who was diagnosed

Hi Richard S  and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your wife’s diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

Always around to help more or just to chat.

Hi. Richard.     I have MM.  recently diagnosed and going through the treatment cycle 1 at the moment.    I am also sad to hear news  of some one so young suffering.        I can only offer a warm welcome and the best support for your wife and of course yourself as a carer        You are never alone in this group.      I do hope your wife gets the treatment moving forward very soon.      My diagnosis came on my 66 th birthday and my retirement day.   It was indeed a blow           Not only for me. The patient but my wife and kids  .         Kevin 

Hi Kevin 

thanks for responding 

cycle 1 is tough as it’s all new and counting pills.

our kitchen looks like boots pharmacy!

Cath is in good spirits today in Derby Royal but we both have bad days where she feels scared and trapped in her body

Me as carer have had to absorb all her wifely duties, i can use a washing machine now!

actually her being in hospital makes it all a bit quiet at home, 

where is home for you and have you got any symptoms?

Richard

Hi Kevin, I was diagnosed in February with. MM I've finished my chemo, had my stem cell harvest and go in hospital for my stem cell transplant.  Its all been very daunting and overwhelming but I'm beginning to see light at the end of the tunnel,  hopefully.   I'm 68 and it's all been difficult for my husband as my carer. My feet are totally numb with the chemo and he has to do everything for me which is alien to him as I have always been a very active person.  He to has learnt how to use the washer and indeed everything else.   I hope all goes well for you both and know there are people out there in your situation.  Stay strong and positive and you will get thru this.  

Thank you. Very much for the kind words. I am a very positive person.      But like you always been so strong and independent.      Not being able to travel to my son’s wedding in Oz in October is the hardest. After canceling one due to Covid in uk.      Kevin 

Home is Worcestershire.    And in my view getting great care at Haemotlogy   In WRH.    Symptoms are.   Hip and back lesions with odd pains.   Fir a guy that used to travel the world  find it hard twalk to the local store now         VELCADE Seems to knock me about for a couple of days        Yes the pills became a shock   Particularly the  dexa  steroids.      I can still drive.  Shop a bit.   Retirement was not meant to be this.  But I remain positive.     With love and support from wife and family around me and of course friends.      Please hug your wife  and tell her things us men find hard to say     They make us complete.    Kevin 

Hello everyone , if I can just wanted to offer folk some hope as a patient and to those who are our very loved carers . It's a tough journey we all take and as a patient I know how much trust we have to have in those who treat us and the tough task those who care for us . 

I too was diagnosed with MM just as I retired . I did get to go to Australia to visit my daughter and her family April 22 but was diagnosed within a month of returning home   .Unable to make Christmas out there though .

I've battled through 4 months of Dara VCD a stem cell harvest and finally Transplant in April.. I'm feeling great now and am so glad I've done it all .However I wavered on the transplant several times   . The only way I could manage all of this was taking each stage of treatment bit by bit and speaking very often to my Haemotology team and the specialist nurses .Finally my husband of 40 years is beginning to talk about the last year and to let his guard down .He has been a rock and has seen me at my worst.and my strongest. I'm glad we can talk about it all now .

Take all the help that is offered and if you are struggling , find help .It's taken me a while to ask as I have always been a carer before both in a proffessional way and within my family  Sorry if this seems like a rant but good to write it all down .

Sue x 

Hi, just read your post, am 68 and was diagnosed in February.  I'm having my transplant  next week and am finding it all overwhelming  but reading your post, it has given me strength and the hope to get on with it now. My family and friends are so supportive and my husband has been a star  being my carer and he too never shows his feelings about it even tho I ask.  Thanks for giving me hope and good luck to you.

Hi Bunky., it is overwhelming , I recall that feeling very well . But look how far you have come so far .Things we're not straight forward when I was having my transplant but I never felt unsafe or vulnerable  The team had an answer for everything and were so kind and proffessional from my  Consultant through to the cleaners . Good luck and keep in touch  x 

Hi Cakie,  thank you for your kind words, it.really means a lot to speak to people who have been and are going through it.  I have been great  thru all my treatment,  no side effects at all but since I've finished me chemo it has left me with severe neuropathy in my feet.  I struggle to walk but hopefully my nerves will recover. A small price to pay if I get the end result!  Thank you once again