In a previous post I spoke of my husband’s journey to his diagnosis of advanced oesophageal cancer which has spread to his liver. Maybe it’s because this journey only started in August, no major signs or symptoms prior to this, and when things started to change it was very difficult to cope with how dismissive the GP was about our concerns. Test’s, scans and an endoscopy eventually led to a formal diagnosis and his being admitted to hospital at the end of November. He is still in hospital (on the Gastrology ward) being fed via an NJ tube, on insulin (previously on metformin etc), receiving medication via the tube. There have been setbacks, tube blockage, insulin dosage issues, as well as very little weight gain (17 kg lost pre-admission) and stomach pain that has not eased with oramorph.
I am in no doubt that he is extremely frightened by the speed that everything has developed and that palliative chemotherapy is the only treatment being offered. I have found this devastating too, but I am struggling to cope with his withdrawal, his lack of fight, his impatience with everything/everyone. I know this is a common response, and he is still processing things, but when this situation may impact on his being in the best shape physically/mentally for commencing chemotherapy treatment I worry that he will not achieve this.
The immediate issue is his discharge from hospital to continue with NJ tube feeding and building his strength, although I was initially hesitant about this, it is obvious that care at home is far more beneficial to his well being than remaining in hospital. The problem is that he does not want to leave hospital, if asked he will say he wants to but will then list reasons why he should stay where he is. He has said that he doesn’t think I will cope with his care at home, I disagree, we have received instruction in food tube management, I am confident in dispensing his medication appropriately and have family support. He has been told that he can/should handle these tasks himself but based on prior experience he will not do this and will make it my responsibility (together with me taking responsibility for any problems that may occur).
I feel guilty, sad, annoyed etc etc - all of these in a continuous cycle particularly in the early morning when everything rewinds and starts all over again.
Hi Daisybell
Sorry to read about what you are going through, your emotions are perfectly normal and so perhaps is your husbands.
I might tend to side with the hospital on the ultimate responsibility for his care resting with your husband. I know as a carer to my wife that I cannot make her do anything but in her case she tries to stay our of hospital - mostly. When she wants to go to hospital I know she is really quite unwell.
What support have you got in place for you? We are lucky locally to have a Maggie's centre who are fantastic. Do post on here whenever and remember you are always welcome to ring the helpline too.
It is amazing all the things we learn to do - and everything just ends up seeming "normal" if this crazy journey can ever be called normal.
<<hugs>>
Steve
Hi Daisybell
Totally get where you are coming from, it is bloody hard and the reason I manage to cope is because of the help I got - and sometimes still need.
A proper care plan is supposed to be in place before people get discharged from hospital but that usually requires involvement of the local authority - and when established at home you should look to get a needs assesment and a carers assessment see - https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/
<<hugs>>
Steve
