hi everyone
we were at the wellness centre at our local hospice this week.....we talked with a lovely woman who explained what they could offer to us to help cope with the life we now have ...she offered therapy which my husband refused as he doesnt want to talk about it .....she said i could have therapy too but i said i was on the macmillan online site and i found it easier to write about everything than talk about it ......there was no pressure and she laid out what we can access when we need it ..explained that if necessary medical treatment could be done at the hospice as they have doctors and nurses who would always do what they could to help ...we both felt better because we didnt feel so alone now
we saw the community nurse today who was so helpful ....we explained that because we had been discharged from oncology and any medication needed to come through our gp we were struggling because our gp practise had been less than helpful with some of the medication that he needed and said that we didnt need it ...the pharmacist at our surgery actually told us that she had spoken to oncology and that strictly speaking that some of the medication was only while he was receiving treatment and now it had been stopped he didnt need it ...
but when we told her he needed the anti nausea medication because he couldnt eat otherwise she said it was a common thing that happened to a lot of patients and that there was no reason why he shouldnt have it if it helped ....she also said she would get the gp to prescribe ensure drinks and if the gp was being difficult about it she would refer him to a dietician who could help .....hes not taking anti biotics now because she thinks that they might have caused him to have thrush in his mouth but said he could always go back on them if he got ill again ..he has steroids too because he also has mild copd and also some of the pills he has are quite big and she said he could have them in liquid form which is a huge help as not only has the cancer taken away half his vocal cords and is pushing on his food pipe as the doctor called it it makes it difficult for him to swallow so getting some of his medication in liquid form is a huge relief ..
we talked about how we could get enough nourishment into him as he is frailer now and everything is a real effort ..it was suggested that maybe taking a walk would help but she said that because of the weather and the fact that he is weaker now that maybe just moving around more at home would be better ....
she must have spoken to our gp because we got a phone call later where he said he prescribed the ensure drinks and sickness pills and also his omeprazole in liquid form to make it easier for him to swallow ..
we also talked about end of life care and what my husband wanted ..he said he wanted to be at home and would rather not be in hospital at all ..she called it hospital at home and that made it seem better ,,obviously if he gets really ill then hospital would be required it would be a last resort
we have a form to fill out about do not resuscitate and what we want to happen at the end which although upsetting has to be done and when we see her again next week she will go through it with us and enter it on his file so it wont keep coming up in discussions about care ...sounds strange but it felt right to do
we are both relieved to know we arent alone and have support when we need it anytime we need it ....
we know hes on borrowed time which is running out but we are going to try and get on with our lives as much as we can and now we dont feel so alone we are just going day by day now .....
its hard to explain to people what palliative care means ,,,,,im quite blunt with people who ask ,,,i tell them he has cancer and has exhausted any treatment options so now he has care to help him make the most of what time he has left and if anyone asks how much time i tell them we dont know and im getting to the point where im willing to tell people to sod off and mind their own business ..think its the stress talking now lol
i still get very upset about the finality of it but we cant change what we have been told ...oncologist offered to tell us how long he had left but we refused because when you are told very gently that its terminal you really dont need to know how long because then its like you are counting the days and thats not what we want to do ...
i thought i would be more upset than i was but knowing we arent alone is helping and that is worth more than anything at the moment ..
we are coping with gallows humour lol ......the heartbreak of seeing my husband get weaker is hard for me but i cherish every day now
we still have arguments because he can be difficult when hes ill.....but i think being in the care of the palliative team now makes a difference and he feels better because he knows that he will be cared for without the gp being involved so much and that means he doesnt have to worry about medications and stuff .
all in all its hard to deal with but necessary and now he feels better than he did when the oncologist discharged him and referred him to the palliative care team
we dont know where the cancer is ...we know he has a tumour in his chest and that its grown bigger and that the cancer has migrated to his lymph nodes ..the oncologist said it had progressed but we dont know where it had progressed too..we know its lung cancer and thats basically all we know ..we didnt really want to know where it is now or how bad it was ..we know its stage 4 cancer and i think we dont want to know how bad it is now ...
all we can do is try and make the most of what we have now
take care
sarah x
