Hi and I apologise , ive probaby not posted on here before , usually just read the posts on the different groups but tonight I felt I needed to post,
My mum has been fighting cancer since 2008, its goes away and comes back, shes had laser treatment, next it was radiotherapy and after that it was her voice box removed as there was no other choice. She said no at first but then went ahead with the op...…….operation went well but as the radio had damaged the tissue the swallow tests never went very well so she had a nasal gastric tube for almost two years until she had another 2 major operations to sort all the damaged tissue. Finally the ng tube could come out and she was able to start a very soft diet and to this day that's all she can manage. Might as well add what happened after that, she took a bad spinal infection and lost all her mobility, it was really really serious but because of her overall health they couldn't operate so again it was back to stay in hospital for 12 weeks of iv antibiotics. There was no guarantee this would work but thanfully it did. She was transferred to our nearer hospital where she had a bleed in the brain. She got through that as well and was finally allowed home with oxygen at home to her with her copd.
we had a good few months of no health problems and were attending a routine appointment, nothing of any major concern showed up but she was sent for a scan just to be sure. Called back tor the results and the consultant said good news is there throats clear, bad news was cancer in lungs, said not sure if from original site or a new cancer.
Fast forward, she was referred to respiratory, doctor asked if we knew why we were there, we said no not really. He was very matter of fact and showed us the tumours on the lungs,he said it was mets from the larynx cancer said nothing could be done and he would see her in December for a scan or xray to see what was happening. Long story short that December appointment was changed...….it was today.
Doctor asked if any changes in health since last seen by him, mum said no , just shortness of breath. Ok he said well we will discharge you, I said what about the xray and he said who said she would be getting one. I said YOU did the last time we were here, He then said theres no point doing an xray, it wont change anything and probably wont show nothing up how ever if u want one then he would send her round. My mum just shook her head and said no, so I asked her if she was sure and doctor just looked at me. I told him I was asking because I didn't want her leaving that appointment wishing she had said yes. He seemed to have no interest in what I had to say (actually asked me if I was with her the last time).
I go to every single appointment with her as she cannot speak at all, she relies on me for everything and I mean everything, from shopping , medication, appointments, prescriptions, dieticians. I deal with it all. I am not looking for a medal, im an only child and there is no one else. My mum doesn't want carers in, she doesn't go out without me because she needs oxygen and a wheelchair to leave the house. Anyway, I just cant believe she has been discharged and was worried sick about this xray and the results for it not to happen because I know she did want it and as much as I was dreading it I think it might have helped to let us know what to expect or even have an idea of how much time is left.
I changed my job last year so that I could be about to help more but I am really struggling to just get through each day just now and I know this isn't about me and I hope it doesn't sound like it is. Just feel like our lives have been on hold for years, unable to plan anything or go anywhere without feeling guilty and then if I did what if something happened. I am on call 24/7 if anything goes wrong or if she needs anything. I see my mum every day so I can make sure shes ok. I occasionally ask my husband to go in and check on her if im on a long shift but she always shoos him back out the door lol.
Today has been so hard and I don't know what to do to help her next, she was quiet upset and said again like the first time we met that same doctor she feels like he is just sending her home to die.
I will give our macmillan nurses a call on Monday, the girls who deal with us are fab. I guess I just needed to get this out because I was so angry today. My mum did ask if and when the tumours would start causing problems...…...no advice, he just said he didn't know.
Not Helpful at all, Anyone else had to deal with this and if you did then what did you do.
Thanks for taking the time to read this......its like a book.x
