[emfParticipant]

Hi.

This is my first post here. I attended the Info Day in Bristol today – such a useful and encouraging day and I met some wonderful people.

Hubby (52) was diagnosed with myeloma about 8 weeks ago and is in week 6 of DVTd treatment. He has severe myeloma bone disease and is waiting for a back brace to stabilise his spine and sternum.

It’s all feeling really overwhelming at the moment and I feel like my life has been ripped away from me. Trying to juggle work, caring and keeping the house going on my own and feeling so alone. Today helped and I’m hoping to connect to more people who understand here.

Thanks for reading.

[labladyParticipant]

Hi EMF
My husband newly diagnosed too and have to say it’s been a roller coaster and like you felt our lives have been ripped apart. We on week 6 of DVTD too and hubby is really feeling grotty and it’s not easy to see him suffering but even harder when it’s me getting the backlash from it. Finding a coping mechanism is the only way for me it’s my garden. I go Potter in the greenhouse, cut the grass and do some therapeutic weed riping out lol 😆 you’ll find you’re not alone so feel free to come here have a moan, a rant, a weep or just to air feelings you can’t anywhere else. Big hug x

[emfParticipant]

Thanks for your reply lablady – there is some comfort in knowing that other people are dealing with this too. Myeloma is such a horrendous disease and I agree that it’s so hard seeing someone you love suffering. Close friends, yoga, getting outside for a walk, trashy TV, good books are giving me some solace. My mum is also being a huge emotional support (but unfortunately she lives 125 miles away).

At the moment I can’t imagine life the other side of this and I’m scared about how my hubby will be as his spine is so deformed. Did the long journey to and from Stanmore yesterday for him to be scanned for his custom back brace – pretty scary to see as he has to one that goes up to his chin and the back of his head as they are really concerned about his sternum. Also waiting for the results of an MRI on his head as they are concerned about a lesion inside his skull that might be impacting his brain. Myeloma is the gift that keeps on giving.

I’m really sorry you’re going through this too – happy to chat and also sending you back a big hug x

[derbyshirelassParticipant]

Hi, Emf,
Just to let you know you will get thro this and life will be a new “normal”.
8 years ago today my hubby was diagnosed with Myeloma, never heard of it before he had 8 spinal fractures and a fractured sternum, which caused his head and neck to go forward and lose 5″ in height, like your hubby we had hell of a journey to Stanmore traveling for west wales by ambulance. Hang in there Stanmore is amazing the brace also had the chin part and boy did it do the job, stopped further movement and gave hubby confidence think he wore it from July to nearly xmas. Like you I never thought our lives would be upended like this ( but who do’s ).
But 8 years on we are still here , happy coping and still running our smallholding, albeit with a few tweeks and changes, he still gardens and yes he has aches and pains from his neck/back but nothing dreadful like in the begining our before anyone knew what was wrong with him.
Currently on 2nd line treatment. Sending you best wishes, positive thoughts and big hugs, all which were sent to me 8 years ago. I will never forget the kindness of people on this site.
x

[emfParticipant]

Thank you so much for the encouragement derbyshirelass – it helps to know others have gone through the same things. I’m starting to feel less alone having found this forum, the Facebook support group and with the health and social care system starting to mobilise around us. Some close friends have also started plotting so I can get some days away from it all whilst they take care of hubby. I’m also working through finances to see if I can afford to reduce my hours at work as working full-time as well as caring for hubby and doing everything around the house and garden is just too much. I’m ready for the bank holiday weekend now, just got to get through a heavy day at work tomorrow first!

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