Caring for someone with cancer is utterly exhausting. Caring for someone I love with all my heart is exhausting yes, but also such a privilege. Every minute of my waking day now is focused on getting everything right - the meds, the food, the rest, the moving about, the sleep, the social interaction, the just about everything. I have no idea how I get through each day. I'm not even on auto pilot but I am managing to get through.
We are in such a fluid situation with things changing every few days. Trying to get into a routine is tough and it frequently goes haywire but from somewhere I get the energy to do the things essential for the day. Pain relief takes up tonnes of time - administering the this that and the other through the rig tube, getting the steroids down him, the thrush medication, the anti biotics, the liquid vitamins, the fortisip, the maxijul, the movicol and so it goes on and on. He has lost weight this week a little and we are both so disappointed but his body is using up the calories faster than we can get them down him. He's still getting up everyday but heads straight for the armchair and spends most of the day dozing though is still interested in things around him.
This morning our three sons happened to arrive all at the same time and as they all lay on the bed with him chatting and laughing and crying I looked on with such sadness but pride. All these special moments to treasure. They were talking about all sorts of things with him and I could see how it lifted his spirits to be surrounded by his boys. The dogs and cats joined in too on the bed and for that tiny fragment of time all was well with the world.
In direct contrast to last night when we had to call the doctor due to his pain. He was so reluctant for me to do so as he said it would just be the beginning of the end but I needed him more settled than he was. Eventually we got some sleep but it was a tough night. His pain meds have been increased tonight in the hope that we can do something to ease him.
The cancer is on the march of course, I can see that but as it's affecting his nerves behind his eyes they have warned me that it will be difficult to keep him absolutely pain free. He's trying Pregabilin liquid (which I've had to be extra pushy for) aswell as the patches. He is the master of understatement though and it's a tough call judging his pain level.
Cancer is such an awful disease. It takes away from us those we love but worst of all it takes them away over a long time, slowly and painfully. I just want him to be pain free - I've promised I will do what it takes to do that but only time will tell.
I'm simply living in the cancer bubble now - I have no idea what is happening in other peoples lives or indeed the world. I find it so odd that even through this extraordinary time I am living through there is still the expectation that I will behave as normal. Even family members seem a little taken back when I no longer play hostess. In fact I can't even remember the last time I made anyone a cup of tea even - shame on me!!! What are people expecting?
I feel quite numb most of the time. I think my emotions have left me maybe with a view to returning in the far off future. I can't seem to "feel" things like I used to. My heart feels like a rounded breeze block of cement which I drag around each day with me. I have cried now and again but there will be time later for tears. I have this running commentary going through my head every minute of every day reminding myself of the terrible things to come yet trying so very hard to enjoy each day with him.
We often have a cuppa about 4.30 am. We sit and chat about nothing and everything. The peace within our house is beautiful at that time in the morning, listening to the birds getting ready for the day. We reflect on our lives and laugh and giggle and reflect again. We talk about what we mean to one another and about my future on my own. We have run our own business for over 25 years now and sadly I am still having to work even though we have got managers in for the short term. I decided it would break his heart to sell so we decided to keep everything just as it is until things change. How I wish I worked for someone else. The luxury of having sick leave and simply switching off from work responsibility is so very attractive. Unfortunately life doesn't flow in the direction we choose. I'm still having to do VAT returns, pays wages and all the one million things it takes to run a business and employ people. I know they are all worried about their jobs, hopefully they can be reassured for the short term. But its something we have built together and when I'm on my own who knows what will happen. Where will my motivation come from. It's just too overwhelming at present so business as usual I guess for now.
I know it's tough for everyone who works and cares but it's definitely no picnic being self employed and caring either. People still expect things to run as they have always run. The help out there doesn't exist for self employed so we just have to get on with it but I feel fairly sure I shall pay a high price in the future for operating every day trying to fire on all cylinders.
In the meantime we are enjoying the humdrum of life. It's the little things that truly matter. The kind words, the little jokes, the well chosen smile, the down right daft names we call each other, the squeeze of the hand. It all calms. It all helps.
I asked him the other day what he wants now.
He replied he simply wants love.
Nothing else. Just love.
I'm most definitely up for that.
