My husband was diagnosed with lymphoma in April last year, his outlook was very positive and with chemotherapy his doctors were confident he’d be cured if he completed the cycles. However in October he developed sepsis and necrotising fasciitis at the site of his Hickman line. He was in a coma for a month and remains in hospital now unable to walk. He’s had various infections along the way, and his cancer has gone untreated which has resulted in the spread of his cancer - all contained within his brain so far. He is due to start radiotherapy on Friday, but we’ve been told this will not cure him. The hospital are now talking about his return home and I have to be honest I am terrified. It was very hard when he was home after his diagnosis, his coordination and cognitive abilities were off, but now, being unable to walk, transfer or toilet by himself I’m worried about his return. We have 4 children, the youngest being just 4. I had to leave my full time job of 20 years to care for him, and to keep our family business going. I’m still trying to run that business, care for the children and the house and obviously do what I can to care for him and I’m struggling. Occupational health have said I will get support on his return but I am panicking. How do you do it all whilst being a carer 24 hours a day?
Hi Walshy84 and a warm welcome to the Macmillan Community but so sorry to hear about your husband.
I am Mike and I help out across our Lymphoma Groups. I am assuming that your husband has CNS Lymphoma….. it is unfortunate how things have developed with him having developed Sepsis and how things have developed.
Having Sepsis a number of times it just makes the journey more challenging.
I have/had two types of rare T-Cell Non Hodgkins Lymphoma…. one is incurable the other is having a long sleep…… and I am now 9 years out from treatment.
This is such a challenging and stressful time for you so getting support from others who are dealing with the ‘exact same' support challenges can help you a lot.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself.
You may benefit from joining and posting in our…… Non-Hodgkin lymphoma support group….. although there is no one in the group at the moment in the same position.
But please do join our general…..
Carers only and Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Do get back to me if you need further help navigating the community ((hugs))
