Hi. I'm a carer for my husband who has non-hodgkins lymphoma, diagnosed 2019 a d also has chronic lymphatic leukemia-duagnoised 2020 he is receiving chemo daily in tablet firm for the Cll but hus first lot of blood tests are showing no improvement, specialist us going to give 2 more rounds of chemo byt uf no improvement , will stop the treatment , i must add husband also has copd and has been diagnosed with Parkinson disease on 27 March 2023 , I feel lie we are being bashed from every direction and my husband refuses to discuss his care now . I know he is in a lot jf pain and is struggling to eat as he feels full all the time, he's even refusing the ensure drinks which he was using when he struggled to eat before.
I'm finding my self crying a lot,
I also look after my mam who has advanced alzheimers but she doesn't live with us - we are waiting for a bed in a home
he's done a living will stating he's not to be admitted to hospitial for treatment ..
I'm really struggling with my emotions ..anybody any suggestions on how to help my husband open up a little , o know he's scared but he would never admit it ,
Hi Jpt and welcome to the Online Community but so sorry to hear about your husbands diagnosis.
Having lived with and been treated for an incurable type of NHL for over 23 years I know how the condition can progress and with your husbands other health problems it is such a challenge for the body to fight.
This is such a challenging and stressful time you but reaching out to the community will give you the opportunity to ask questions and getting support from others who are on the ‘exact’ same journey.
The Community is actually divided into Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting family and friends you may benefit from joining our Carers only (that I see you have joined) and our Supporting someone with incurable cancer support groups where you will connect with others navigating the exact same support challenges.
To connect in with a group first click on the “Bold Links” I have created above then once the group page opens you can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
You can also scroll through other members posts and click “Reply” to get involved.
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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help ((hugs))
