New to the group

Hi again sand and well done navigating across to this corner of the Community although I am sorry to see you joining us and hear about your husband's diagnosis.

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.

It is hard work 'trying' to live some sort of life during the challenges of treatment and the effects of his condition. I did work during my early days of my diagnosis but eventually I had to balance quality of life against pushing myself and just making myself more fatigued.

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 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

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi Sand , it's so much to deal with isn't it . I can understand your frustration . Going from one procedure to the next , the tests and apt seem endless .

My husband will testify as well as for the last year he has been taking me from one apt to another . As the patient ( I was diagnosed with MM 2022 and a successful  Stem Cell Transplant in April 2023) there are so many appointments and it does take over your life .

I found I was getting quire anxious as 1 week a month I was clocking  up 3 appointments in 1 week all on different days . We spoke to my Consultant and lovely CNS and they have been able to schedule them all on the same day .It's a long day but well worth it . For me , because we live 45 mins from the hospital an early morning  apt was never good .I guess what I  saying is talk to your hosp team don't struggle on .Help is usually out there  

Could you do something similar ? I do feel that we have some freedom back now  and have been told virtual Appointments will be offered from October providing  I stay well . Stay with it x if you feel you can, accept support from family and friends .We have had an arduous 13 months but can see life getting back on track now  .X 

Hi Cakie

Thanks for your words, suggestion and support. His team have actually just adjusted his appointments so he has 2 on the same day rather than on 2 different days. Unfortunately, they still has him come home in between even though he asked to stay. But it is improving. 

You are right that I need to accept help from family & friends and I am slowly working on it. I still feel uncomfortable but know I can't do it all myself.

He is on a break from treatment this week and last but he needed other medical appointments. One is good as they put a PICC line in which again will make life better. The other is a scan which will give us a better picture of how the treatment is doing. So feeling a bit better this week . 

Thanks again

X 

Hi. Sand.   I am recently diagnosed with MM.  and just finished cycle 1.  Cycle 2 starts. 19-9-23.        I am still able to drive myself but like you are experiencing with blood tests and 2 days apart for treatment I am at the same hospital 3 days a week.   Small things but I applied and was granted a blue badge.  It helps with free parking close to hospital.     Our partners care and support is so important to us patients.  Without you we are lost.     You are both in the middle of a very anxious time       And remember the outcome is worth it to get STC  and remission to lead as healthy and longer life as possible.         Kevin 

Hi Kevin,

Good luck with your treatment. He did get a blue badge but sometimes spaces are already full. But great to have it.  Thanks for saying carers support is important to the patient. I know this but alws nice to hear it.

Sand

Hi sweetheart.  Of course you can share. I too have myeloma.  I can tell you, it does get better. I was exhausted for over a year on chemo but now I'm fine. I stopped last December and now walk fine and swim over 30 lengths.  So yes your husband will be tired for a while but he will improve. I should know! Why not go for short walks now, let him have a nap then play a game, have a friend over etc. Just until he feels better. Thinking of you both xx

Hi,

Thanks for sharing your story. He has had multiple myeloma for years so we have had a long time to adjust. It's getting harder as his treatment options are getting limited. At the moment he is hospital with pneumonia and I am at home with a cold. Tough times but taking one day at a time. His family is helping me.

Thanks

Sand xx

Hi

Yes it can't be easy. Your cold will pass though and he s in the right place for meds so every day is a day that's closer to you both being together at home again. It sure can be a long journey but have faith in God and yourselves.  Thinking of u xx

Thanks for those positive words!! I especially like the one about every day that passes is a day closer to being together again. It's giving me a lift that I needed. Xx

Ah well it's true x