New here and feeling lost

Hi Santa DR, just wanted to reach out and say how very sorry to read your post. I’m not much use in offering any direct advice as I have a very different situation but you sound exhausted and I wanted to say your care, love and work in helping your husband through this time is valued and appreciated. I had to care for a family member is an overwhelming situation. And on thing I did was attend a care for care for me course. It focused on the need to make sure you find time for you it Dosent need to be long but needs to just recharge, do you have family, friends or adult children - they will want to help but not know how ( you can share how your feeling) being scared in this situation can be isolating ask for help via your husbands named nurse and they can ask for an assessment of need which can help you both practically (Maye a carer to assist?) do not feel guilty about asking for this help you are taking on many roles just now and grieving the loss while caring for him. I just want to say look after you at this time. Apologies if I’ve made assumption that are in correct. 

If your husband was told it is terminal then I would be fairly certain he would qualify for hospice support. They are wonderful places and provide care at home and support to family members as well as caring for some in the hospice itself nearer the end. Do you have a hospice in your area? If so I would ask your GP or consultant to refer you or otherwise ring the hospice them direct and ask what the procedure is to self-refer. You should also have Macmillan cancer nurse support available by phone via the hospital.. This is a situation where you need support, help and someone to ask questions of. You should not be having to cope alone. I have found that we have to very much self-advocate these days as patients.. make calls, insist on answers, and demand action! All can be done politely, firmly and without causing offence or friction. The people are generally lovely but the overloaded system is in considerable chaos. I won't bore you with my story in full but it is full of such incidents.. the latest being that I had to chase up my own 6 monthly check up, to be told they were behind and it would be in a couple of months. I insisted I did not want to wait as I had pain in my abdomen and was very worried. They found me a cancellation that very week and the check up found 2 high grade recurrent tumours which I had removed before the date they would have even got around to seeing me for the check-up! Don't hesitate to be active in chasing whatever you feel you and your husband need... it is out there. Best of luck and let us know how you get on. It must be a very tough situation to be in. 

Hello  Sandra -    I am  also  new  on  here -  my  situation  is  different  from  yours - but  as  other  responders  have  said,    I, too,   feel  for  you  and  what  you and  your  husband   are  going  through.  It  is  important  to  have  a  few  moments  to  yourself.    A  virtual  hug  coming  your  way  :)

Thank you for your reply. He doesn't have a named nurse as he was never referred to oncology. Just given the terminal diagnosis and left to get on with it. I have older children, they all work and visit 1 day a week for a few hours. I think the trouble is that they won't accept the diagnosis. I know I need to look after myself but it is hard when my focus is making sure my husband is comfortable. At the moment my husband doesn't want anyone coming in to help. My eldest looks after him for a few hours so that I can take my grandchildren to their club. It is just a few hours but it is good to just get out of the house. Thank you for your kind words and I will keep going.

Thank you for your reply. Hospice and palliative care nurses have been suggested but my husband doesn't want this. My gp surgery isn't much help either. I am so happy you forced the issue and got seen quickly and had the treatment you needed. Take care of yourself and again thank you for your advice and concern.

thank you for sharing this information and I notice that others have also offered advice here. Worth a look and try to go via MacMillan’s support line. Your is a difficult situation when your respecting his wishes not to have services in to care for him. You sound like great parents not wanting to put too much on your children although I’m sure they will be worrying about you both. Sharing the reality of the situation also allows them to be able to reach out to their dad ( we often think I wish I had of let someone know how much they had changed my life or made me a better person or to have sorted out disagreement etc) Time passes quickly more quickly than we realise so it’s worth having a think about. In the meantime you sound as if you are able to enjoy your grandchildren and have that brief but important time for you. Take good care. 

Hospice nurses are great... so many ways they can be supportive and helpful. For families too. He must have misconceptions about their role. Try if you can to change that.. very best of luck. X