Hanging in there.....

A short post and a quick update from Sarah. We are currently still doing fine although I am very sad to report that we see little changes every day in terms of Dave's health and wellbeing deteriorating.

It has been a very busy week one way and another. We have had lots of visitors and people calling in to love and support us and have lots more people coming over the weekend. Visitors now need to be limited to half an hour max as Dave is finding himself very tired. It feels like a bit of a topsy turvy world where the time just flies by with visitors, phone calls, medical professionals visits. Two major achievements stand out this week. On Wednesday Rob, Trish, Claire and I took Dave for a walk by the river in the wheelchair and yesterday afternoon Dave and I actually incredibly managed a walk in to town with Dave in the wheelchair again but we ran a few errands and even managed a trip to Costa Coffee for a coffee and a caramel shortbread! It is really a case of seizing every moment, so if the sun comes out and it is not too cold and Dave is feeling reasonably okay we are off in a flash still trying to squeeze every last drop out of life.

This week we unwittingly gave some people a terrible fright as on Wednesday night, unbeknown to us our phones stopped working and quite a few people tried to call us apparently. On Thursday morning we realised the problem and fixed the phones but a lengthyish chat with Caroline and the trip to town meant that we were again not answering the telephone. Late that afternoon I spoke to Howard who by this time sitting down in Bicester was beside himself worrying and I had to reveal that whilst he had been worrying incessantly we had, in fact, been out enjoying ourselves in Costa Coffee and oblivious to his angst. Stuart, stuck in Berlin and even more worried had immediately booked a flight back to the UK for this weekend, rather than the visit he had planned for later next week!

In the midst of all this we have had a plumber in for a couple of days fixing our upstairs shower. He had an accident this morning where a large ceramic tile fell off the ceiling on to his head creating a 2cm gash on his head which bled profusely. I found myself torn between my two patients and thought I would have to rush him off to casualty but managed to stem the bloodflow in time thankfully. Aside from this most of the remaining time has been spent looking after Dave and still chasing the DSS to try to successfully claim benefits. We have now been waiting since the beginning of December for some money which is very frustrating and when your clock is ticking in the way that ours is, time spent in call centre queues is absolutely infuriating.

I am getting more night care support as of today. Night times are the toughest times particularly with Dave's shortness of breath. I have found going to bed upstairs and listening for Dave through the baby monitor impossible. I was becoming fixated by listening for his breathing and anxious that he would not be able to call me over the monitor if he was short of breath. So, on the nights when we have had no carers I have been sleeping downstairs on a mattress on the floor next to his bed. This is tough as it is distressing enough anyway, but when you add the earsplitting noise of the oxygen machine, the whirring of the hospital bed and the cat trying to sleep on my head it becomes very difficult. I have been up and down with Dave a lot during the night and then at 5am Hermione has been deciding it is time to get up and constantly pouncing on various parts of my anatomy or chewing my hair. So yesterday I asked Caroline for more support as it is my intention that I get enough sleep so that I can fully support Dave during the days and make the most of the time with him. Yesterday, we were offered night carers 7 nights a week but Dave and I are not ready just yet to relinquish what we see as all of our independence, so we have accepted care every other night as a compromise and a way of retaining a bit more of our private space.

So, in summary, we are still doing okay. Still lots of love and laughter in the house but with a fear in the background that everything could change in an instant.

One other thing to mention is that if you are calling us the phones may sometimes be switched off while Dave is asleep at night and during the day. We need to do this for him to get some rest. If you don't get through please try again or leave a message but do try not to worry too much or call someone else who will know the current situation. I'm not promising to return your call unless it is urgent as our clock is definitely ticking...

Dave does still like phone calls and will talk to you if he is well enough, otherwise you will need to make do with me! Dave has also been receiving lots of lovely emails acknowledging him as a person which have been great and very moving for both of us. My thought on those how lovely to be acknowledged while you are still here rather that just at your funeral as happens with most people. The cards various people have also sent have also been great.

Finally, we would like to say thank you to those of you who contributed to take the fundraising over the £3k mark - we made it by Thursday night which was fantastic. And for those of you who are still thinking about donating - for God's sake get on with it! And if you can think of anyone else who would like to read the blog, forward the address on. We are starting to hear stories of people distributing the address to people they work with to stop those everyday moans and complaints and also of people using the blog on training courses as a way of inspiring people.In addition to the doctors using the blog at the hospital, Caroline also asked yesterday if it could be used as a training tool for Macmillan staff. If you have any other ideas, please let us know!