My mum as been diagnosed with Myeloma

Hi Neil Neil my mums cancer and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mum'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 rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specific treatment you areon.

Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the Myeloma Group title and this will bring up all the posts. Have a look at them and as always you can hit reply to any post and see if the member is still using the community.

When it comes to the practical and emotional challenges of supporting family you may also benefit from joining our general Family and friends and Supporting someone with incurable cancer groups where you will connect with others navigating the same challenges.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too.

This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. 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.

Thank you Thehighlander , sorry for the delay in replying,  i have struggled to get back on this site. 

My mum is not out of hospital yet , after her diagnosis.

She is a 2 hour drive away to get her home & are just waiting for the hospital to give me a discharge date.

Hi again Neil Neil my mums cancer, no apologies needed, this is a challenging time you the family especially with your mum being a 2hr drive away.As a family we know these challenges very well as we stay in Inverness in the Highlands and fir the final part of my treatment I was down n Glasgow 8-9hr round trip.

How is your mum doing?

What have you been told about treatment going forward?

Always around to chat.

Thank you Mike , my mum's delay in discharge from hospital is she now has tested positive for covid.

She as moved wards around 3 or 4 times & i am just getting repeated messages.

I don't know what type of Myeloma or at what stage.

When i pick her up , hopefully in next day or 2 what care plan will be in place.

Who manage's the care plan ect.....

Is there things i can do , put in place before she comes home ? 

Neil

Hi Neil, sorry to hear she has tested positive but it on the rise again

Get you questions listed so you are ready to have ‘that’ conversation with her consultant.

With the challenges within the NHS at the moment it’s not that unusual to be moved from ward to ward. Back in April I ended up in hospital for a few days and was in 4 wards during that very short time.

As to what to put in place this will depend on your mum’s physical needs. If she is in-firmed in any way the hospital is responsible to ensure that a home care plan is put in place so this question needs to be asked before you pick her up.

Hi Neil, I’ve just read your posts and felt I wanted to reply. 

My husband was diagnosed with advanced Multiple Myeloma Stage III in November 2020 and at the time he was told he might only have two to three months if he didn’t have treatment. He was in hospital at the time and he also caught the Delta version of COVID, but managed to pull through.

Well, he’s still with us nearly two years later and we are having a ball, socialising and holidaying, enjoying ourselves as much as we can. The last year (2021) wasn’t easy with all the chemo and the stem cell transplant, but he went from not being able to lift himself out of the chair to now being able to walk  as much as 11kms unaided. It was a very frightening time initially and all we could talk about was the Myeloma and the treatment. I found myself reading everything I could, but I also listened to advice from the Specialist nurses who told me to stick to the Myeloma UK and MacMillan website. Now, Myeloma doesn’t fill our world and we try to live normally, making the most of our friends and family who want to support us. Be there for your Mum Neil, but don’t be afraid to let others support you as well. Hope all goes well, big hugs to you and your family xx.

Hi Neil

i have just joined this forum today, I am on my third cycle of treatment for myeloma and if I can be of help please get in touch with me, I hope your Mum is doing ok xx

Thank you for your help & advice.

My mum still hasn't been discharged from Lancaster hospital yet...

8 weeks now & after continuous different consultants & promises made from hospital transfer to West Yorkshire,  close to home , to social care team involved,  to the latest different phone call today from reablement team asking details about my mum because are unable to get contact with Lancaster hospital to hopefully help get her home.

I have lost confidence in this process,  hospital & feel let down.

Telling my mum & family each week , she won't be leaving hospital is heartbreaking & mentally draining me.

Thank you Cuppa  tea , i love that.nane......

It was lovely of you to reply & brilliant about your husband fighting & enjoying life with your amazing support.

It is heartwarming to know.

Mum has not even started treatment yet & still not been discharged from Lancaster hospital after 8weeks. 

The mental strain & upset as taking it's toll now & i feel like i have let her & my family down. 

Thank you for taking the time to reply notgivingup.

My mum hasn't even started treatment yet , but is still in Lancaster hospital,  we are in West Yorkshire & just desperate to get her home.

I hope you are well yourself x