Hello all,
My partner was diagnosed in December 21 with Multiple Myeloma and AL type Amyloidosis. He’s only 41, is being treated under the National Amyloidosis Centre who I believed have saved his life.
He was extremely ill at Christmas and travelled to London 29th December to start treatment, I thought he may never return home having suffered and been mainly in hospital since September undiagnosed.
The great news it that he’s responding to treatment. He came home just over a week ago and has to travel to London one day each week to continue treatment.
Im his carer at home. We have 2 school age daughters and are blessed with family/friends support. I’m taking time off work to take the pressure off and get used to a new normal for us.
Hes very fatigued and complains of feeling cold a lot. His temp is fine but hands/ feet are cold to touch. He layers up, uses blankets. I don’t want to turn the heating up too much due to the dry air.
Hes mobile but doesn’t leave the house as his mobility is limited atm. He walks around the house and does exercises prescribed by the Physio.
He lacks motivation and gets very fed up.It must be so awful for him.
Any advice on the cold?
I purchased a circulation booster machine for the feet, does anyone have one and find it useful?
Hi Havehope and a warm welcome to the Online Community although I am so sorry to hear about your partners Myeloma diagnosis, I am Mike and I help out around our various blood cancer groups.
This is such a challenging and stressful time for you all but I do hope you find the community a safe place to get support and ask your questions.
The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive Myeloma group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions, get support and talk with others who are supporting family and friends on their journey.
If you'd like to connect in with a group click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using). You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
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 provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.
Always around if you need further help in navigating the community.
All the very best.
