My husband has just been diagnosed as terminal

Sjm142 9 years ago

5 replies

Edited by Sjm142 9 years ago

Hi This is my first time on this site My husband is 39 and has a brain tumour ( giloblastoma grade 4) I was told last week that he has months left to live We have a 3 year old daughter I just devastated and trying to hold everything together He is currently in hospital following surgery to try to remove the tumour but via complications he now has left side paralysis and needs 24hr care I am struggling deciding what to do as he needs to be moved from the hospital either home or into care ( can't go to hospice as they won't take him for an extended period of time) I just don't know what to do Any advice much appreciate x

peterb32 9 years ago

Hi Sjm142. My deepest sympathies to you - I have unfortunately been in the same place! Where in the UK do you live? I may be able to get some face to face support if you do not have it at the moment and would wish for some. Peter

Sjm142 9 years ago

We live in Hertfordshire

peterb32 9 years ago

Edited by MarkWilkin 9 years ago

Hallo again. I am a volunteer for both Marie Curie and the Brain Tumour Charity. I have emailed your local Brain Tumour Charity contact but I am not sure how quickly they will respond as it is Easter. If you want an informal chat I am happy for you to call me on xxxxxxx. If I am out, leave a message or try later. Best wishes. Peter

edited to remove phone number, if you wish to chat privately to people we recommend sending a private message. You can click on someone's username to do that. Thanks 

helenhopkinson4 9 years ago

Hi Sym my heart goes out to you. I will say my prayers for you tonight. If I were you I would have the Marie curie cancer care nurses at night so you can have a rest. You look after him in the day and ask your family to help out. Thanks Helen. 

SUZIE 9 years ago

Good evening Sym. Firstly, can I tell you how very, very sorry I am to read of this devastating diagnosis. My heart goes out to you, your daughter and your extended family and friends. If I may offer you some words of assurance that I can empathise with how you are feeling...in 2006 I was engaged, married and widowed within 9 months, my 29 year old husband losing his young life to secondary bone cancer of unknown primary. Each experience and reaction is individual but I wanted to reassure you that I can genuinely relate to your scenario, whilst not for one moment assuming that I 'know how you feel.' There are two priorities I have picked up on in your post if I may respond. Firstly is your emotional wellbeing. I encourage you to talk to your own GP about how this is affecting you and to get them involved in this journey with you. I wonder do you have friends and family with whom you can share your thoughts and feelings? Are you able to talk to your husband himself about this? It also sounds as though you are in urgent need of practical support in respect of supporting his discharge from hospital care. I would encourage you to talk with the palliative care team to whom he will have been assigned. They should have access to a support network and put a care plan in place. I see that Peter, above, has kindly contacted a local charity on your behalf. I would also recommend talking to your GP about this to find out what district nursing support is available. There are hospice at home options for those who wish to remain at home. Have you taken a look at some of the links on this Community as there are some links and signposting. I truly hope that your husband is comfortable and that you are getting the support you so need from the professionals, family and friends in your life. I do hope to see you here again so I and others can support you. Please take care of yourself. xx