How to manage/ watch for deterioration

Hi Charlotte33

I'm so very sorry to hear about this awful situation you're in. 

I'm unable to offer any advice as my Dad has lung cancer (I'm currently sitting next to him as he's now in our local hospice) but I wanted to reach out to you and let you know you're not alone in this scary club none if us want to be in! 

Have you tried calling the macmillan helpline? I note you've already been on the KC forum. Hopefully me responding to your message will bump you up again&one of tye macmillan champions will offer you some advice, or at least point you in the right direction. 

Sending love to you&your family. Xxx

Thanks so much for your reply. He had another rough night so we will contact his onc and CNS today and see what they suggest. He is adamant he doesn't want to go anywhere near the hospice which is a struggle. The only way I see things going this week is another stint in hospital, so preparing myself for that. Thanks so much and sending lots of love your way too. xx

Hi Charlotte, sorry to read of your heartbreaking situation. Are you under a palliative care team at all? I would ask them to come out for an urgent visit as you feel things have changed and you’re worried you could be in final weeks. It’s a frightening time and you need all the support possible, if the palliative team can’t visit then you can ask your GP to visit same day also. Don’t be afraid to ask for the help, I really wish you well x

Dear Charlotte, we are not quite at that stage yet but my husband who has Stage 4 renal cancer has been given 6 months prognosis. 
Although you say your man doesn't want to go near the Hospice, we have found our Hospice really supportive.  They ring frequently to check progress do home visits and give emotional support and practical advice. They can also prescribe medication. My John takes anti sickness medication which helps him a lot. 
They don’t just deal with the final days but long term illness and pain management. 
They would also be  supportive for you and  are very down to earth and practical well trained people. 
When my husband left hospital they referred us to the Hospice, not for John to move in there but so that we could benefits from the expert help for home visits and telephone advice. 
Why don’t you ring them yourself just for a chat if you want to recognise end of life signs? 
Accept whatever help is offered for you as well as your dear husband. 
Best wishes to you. 

Hi Charlotte33, I'm so, so sorry to read about your husband. I guess I just wanted to reach out as I have been in those stages with my mum and the sickness is so distressing to watch so I fully understand. We had to try 3 different medications with my mum to get it under control but once it was, she was alot more comfortable. Perhaps try speaking to your husband's GP or Oncology nurse? Or palliative care nurse if you have one? I can only speak from experience but they know exactly how to treat the symptoms and it brought me peace to know my mum wasn't suffering from that horrible nauseous feeling.

My advice would be to speak to your local Hospice. We have a nurse that checks in on us and have an advice line (even to run the smallest thing past them). They were amazing when I wasn't sure whether my mum's symptoms were 'end-of-life' symptoms and they talked me through the whole process. I am the same as you - I need knowledge to deal with a situation.

Sending you and your daughter so much love and strength xx

So sorry for the late reply as the notification somehow went into my junk mail. Thanks for replying. We had another scan and his cancer had definitely progressed with fluid in the lungs and abdomen. He has been in hospital since Wednesday and is in intensive care following complications from having a VATs pleurodesis on his left lung. We don’t know what the next steps are for him. We have also had the hospice out to have more support at home x

Hank you so much for your reply and sorry for the Kate response as the notification went to my junk mail. Thanks so much. We since had a bad scan and have engaged with the hospice. He is currently in hospital and has been in intensive care following complications after a procedure to drain fluid from his left lung. He also has fluid in his abdomen and right lung but they are concentrating on getting him better following the procedure for now. The hospice are helping us with a wheelchair and reclining riser chair for downstairs as he struggles with the stairs now. All becoming very real.

Thank you so much. Things have worsened quite a lot since I posted. He had a bad scan and has fluid on both lungs and in his abdomen. He has been in ICU following complications after a procedure to drain some of the fluid on his left lung on Thursday. Not sure how they will manage the other drainage but currently they are just trying to get him feeling a bit better. We have reenaged with the hospice and they are helping us with a wheelchair and a reclining riser chair for the living room in case he can’t manage the stairs one night. Just heartbreaking to see him in so much pain.

I'm so, so sorry to hear that things have worsened for your husband. It's just heartbreaking. I'm so glad you have the support from the hospice now. I hope that will provide you with some reassurance that you're doing everything you can for your lovely husband.

I know exactly what you mean. The hardest bit is witnessing the symptoms.

Take good care of yourself ️

Thank you so much