This is so difficult. Markus came home from hospital yeterday, and slept most of the time. He is very breathless, and woke up frequently during the night to try to cough, or to sit up to get some air. He managed some soup last night, but today only half a glass of milk, and he won't have the intravenous nutrition, although I was taught how to do it. He has struggled for breath most of the day, and only tonight can he manage a bit better. He can't say much, and dosn't want to talk at all - doesn't want to be asked anything, or say what he wants or doesn't want. It's all too much trouble and too difficult. He feels nauseous too.
The mobile hospice came today and gave a lot of information and support. But it was too strenuous for Markus, he didn't really want to listen. They have a 24 hour emergency call service, where you can call and get help and information. They liase with the GP too, so it is really a good service. They gave advice on pain management and management of breathlesness too - but it hasn't really taken effect yet. And I couldn't talk to Markus about it - either the breathlessness or the hospice.
He watches television, and that's about it. In hospital he didn't even do that, so at least that is a plus about being at home, and I can lie on the bed beside him and keep him company or get out of the way into the other room. I even left him to sleep and did a little bit of shopping and got a bit of a change.
But it is a bit of a lonely, confusing, frustrating, sad business. I don't know really what to do to help, and can't get anything sorted out with him as it exhausts him and makes him feel bad. I just have to leave it all to him. I do hope he feels better soon, that the effects of the pneumonia wear off a bit, and that he doesn't lose too much ground.
So that's it.
FormerMember
Hi Pat
I sense your exhaustion in all of this. I hope that you have been able to find time for yourself. That's so important as careers are often the most neglected of people in such circumstances. You've always been someone who listens and so I hope that you'll continue to share your thoughts with the rest of us. I'm only sorry that I've been absent for some months.
Anyway, I do think of you when I plan my own imaginary journeys across the UK and that small village of yours in Yorkshire ... I think. My mind is playing tricks.
So sorry your man is so uncomfortable at the moment. I too sense your exhaustion but I also sense your fear - the mobile help sounds brilliant though, they appear to be sounding board for your worries which must be comforting.
My husband David has also just been dx with ten tumours in his lungs (following his oesophagectomy 6 weeks ago) so your blog really hit home. Do you have family or lots of friends in Austria who can help with the caring side? I hope so.
Much love and e-hugs to you Pat. Its seems such a site-cliche to say 'stay strong', however, it really is the most appropriate term that we all have for each other,so... Stay strong Pat - you are not alone. Julie xxx
Thanks, Andrew and Julie. Julie, I'm so sorry to hear that about your husband - after that awful operation, too. That is really an insult. Markus didn't have the operation, just radiotherapy and chemo therapy, and the tumour in his oesophagus went. The lung metastases reduced with Taxol chemo, too, so praps your husband can have some chemo to eliminate the wretched things.
Family I have, sister in law and stepdaughteri, but they are pretty bound up themselves, though they give a lot of emotional support when they can. Just me for the caring, and I will have to go to work in September too. I'm on holiday at the moment. We should have been enjoying ourselves in a lovely ex- yorkshire village. But fate planned it otherwise. Andrew, I'll meet you there in my dreams, anyway.
I'll get the barbeque going with some nice lamb chops with mint sauce for when you come.
Pat, so sorry to hear that marcus is so unwell. It is so difficut when you cannot get them to say what they would or would not like. I am glad you managed to get just a change of scenery if only briefly. Try to enjoy the reasonable times pat because thery are very precious. Ray and I used to sit next to eat other and it felt as though we were velcroed together at times but \i now wish I had cherished those times more. He did trey to warn me but stubborn as a mule I refused to listen. always here if yiou need a chat. Love ans angel hugs x x Tricia x x
I think everyone has pretty much covered it Pat, it sounds exhausting and tiring for both of you. I know you probably feel guilty about going out or grabbing a little "Pat" time......but you need it, its very important.
Like you I hope that Marcus can fight this pneumonia off and get back on track, seems like its going to be a hard and slow journey.
