Day 26

Still at the hospice. Still anxious. Still exhausted. Still dead inside. I feel like I don't know myself anymore. I'm already grieving I know but this is a terrible life I'm leading. Week three began with hubby picking up enough for the team to begin to make plans to go home. It was a high risk strategy of course but we all needed something to work towards. Hubby said very little about it and didn't show any excitement at the thought of going back home. He's completely shut off from everything here , not asking about anyone or anything. Just living in the moment. However I couldn't just sit and wait for him to die so the plans were put in place. It takes such a long time to get things off the ground but we did feel that the staff involved were genuinely working towards getting him back as soon as policy would allow. So bed was to be delivered this Tuesday and we were all fixed to go home today. It's tough when they ask you what care you want . It's really rather ridiculous in fact . How the hell should I know. I tried not to be greedy but realised the practicalities of having a bedridden husband at home were going to be a challenge. The toile ting problem for a start! He was able to ask for a bedpan but he certainly wasn't going to go on demand with a carer there so I was quite nervous about that aspect of things. It's not easy to move an Eleven stone man with no muscle tone whatsoever. However, like most of the things we've done over the years I knew that somehow we would manage. I was concerned that we couldn't just leave him in the hospice and he was concerned about how we would cope with him at home. However, I went home on Sunday to move some furniture and start to prepare. He had been hoisted out into the wheelchair the day before and was quite perky. Yes it was all going to be ok. How wrong was I . I received a call from the hospice saying I needed to get back ASAP as he was very poorly. It's 45 mins away and that drive was hell. I arrived to find him in a very deep sleep and with little or no response. I agreed the way forward with the lovely kind caring doctor on duty but I was in no doubt it was going to be tough once again. So the move home was out now. He didn't respond all day Sunday and Monday but picked up everso slightly yesterday during the day. However at 4.00 am today he woke up. Very agitated and restless. It's been a nightmare and a very real one too. It has taken the doctored twelve hours to get him comfortable and I realise now we are very close to the end. It's horrible. Thank goodness we are not at home as I think it would just crush me. Everyone is so desperate to get him sorted but one of the major problems is his mucositis . I could never believe that something so awful could result from previous radiotherapy treatment. But it's playing he'll with him. He's so weak he can't cough it out, it's too far back for them to suction, if we dry it up with drugs it just clogs his airways. If we completely knock him out he won't be able to have the few small coughs that he is currently . The tumour is closing in on his neck and throat and all I can see is an uncomfortable man who must feel like he is suffocating. How bizarre that the biggest problem he is enduring is a side effect of treatment. Head and neck cancers are the work of the devil for sure and my wonderful rare and gentle husband does not deserve all this. I've stopped feeding him today too which is just awful. He's had chronic runs and is so distressed by everything. I feel sure the nurses are suffering too. It's upsetting for them that they are having to witness his suffering and we have limited options. Thank goodness we are not home. Out three sons have arrived today and I've sent them all back home . It's savage having to watch dad rattling and trying so hard to just have one good cough. It's horrid if people have a bad chest but in some ways it's easier to deal with. Everyone of course is being so kind but I'm living on the edge now. It's almost impossible to concentrate on anything but even writing this blog has focused my mind away from the horror for a few minutes. I read this week that most people want to die at home well think a goodness my husband wasn't one of them. He has had enough drugs today to sink a battleship and yet he still suffers. I would be hysterical by now if I was having to wait for a district nurse or home doctors to visit me. Drugs on tap is what he needs. Its getting dark outside now and I'm dreading tonight. I sleep on the little camp bed by his side and every rattle and breath sears it's way through me. This isn't the end I promised him. He has times of being calm but they don't last. I even thought about leaving him tonight and going home but that's not my style. He wouldn't leave me I know that for sure . It's taking very last ounce of grit for me to listen to it. It's vile. Thanks goodness it's just us two. The nurses will be popping in shortly and they will be kind to me and touch my hand and out an arm around me and I will cry, just as I have done all this week. Why does kindness set off that series of events? They tell me it's good to cry but I don't feel good about anything . It's so lonely here even though I'm surrounded by good kind and caring people . I want what I can't have. It's a taste of things to come. So we will see what the nigh brings once more. Please please darling husband rest easy. I'm there for you right by your side but just let go now. Think of beautiful things, you don't need to fight anymore . Go in your journey until we meet again. My rare and gentle man xx