Monday, August 2nd 2010

The last Jacuzzi… and departure

My last day at St Michael’s Hospice flew by at warp speed. I allowed myself the luxury of having one last Jacuzzi bath which may actually be the last bath I ever take as all the healthcare professionals supporting me have talked me out of having a bath in my new extension on the grounds of safety. I was also told that the hospice itself is planning to remove the bath and install a wet room as apparently this is what people prefer. However during the time I was with them I tried to make use of it practically every day as I found the hot soapy water soothing on my muscles (yes I’ve still got a few smile_regular ). Mind you, all the rolling around on the bed I had to endure afterwards as they dried and dressed me soon undid all the benefits I’d gained.

I don’t know if it was a simple case of anxiety at the thought of leaving the safety net of the hospice, or just another progression of the disease, but I woke up feeling very tired with very little appetite and generally not feeling at my best. I struggled through breakfast and by the time lunch arrived (poached cod in parsley sauce with potatoes and vegetables) was barely able to pick through a few mouthfuls. In the end I gave up and had an ensure drink. My appetite has been dwindling again for about the past week and I’m a bit concerned that I’ll end up in exactly the same situation I was in when I was admitted to hospital i.e. surviving mostly on high calorie drinks with a few bits of food here and there. It does seem to be rather cyclic.

The ambulance to take me home arrived shortly after 2 PM. I travelled the distance home lying on a stretcher bed but they transferred me (inside the ambulance) to a stretcher chair when we arrived, and it was this that the two-man crew carried me up the stairs in. A staff nurse from St Michaels Hospice stayed with me until one of my own carers arrived later in the afternoon.

And just like that I was home again after a five-week absence. Happy to be home? Hmmm, I’m not so sure at the moment. I guess that’s kind of a strange thing for me to say considering I was very reluctant to leave the house in the first place but since then my needs have changed. However, had I been trapped in a hospital ward for five weeks my reply would be somewhat different! I must say that I felt very safe in the hospice with help of all kinds only a pushbutton away 24/7. Here at home things will be slightly different and I will have a greater reliance on technology to see me through the times when no one is around. But for now I will reserve judgement and just see how everything pans out over the next few weeks, allowing everyone, myself included, to find their way in this next stage of the disease and all that it entails.

My new beefed up care package kicked in this evening with Linda, a new carer to my team, coming to assist Debbie for the first of my double ups. Finally the gantry hoist fitted above my bed early in the year was going to get some use! The sling we’ve been given is a different kind to the one I got used to in the hospice and at the moment it feels a little strange especially as this one has reinforcement straps inside the hood which supports the head. I’m sure I’ll get used to it soon enough though.

In addition to the CommuniCare alarm I wear around my ankle I now have another means of calling for help in the form of a wireless phone called the Possum Freedom. This nifty little device clips onto the side of my Possum Primo! environmental control system which when mounted on a stand can be transported between my study and the bedroom. The phone has been loaded up with emergency contact numbers so even in bed, paralysed as I am, I will still be able to make a phone call. To me this is a major upgrade in feeling safe giving me the reassurance that I’m not so isolated. The profiling features of my bed have also been programmed into the Primo! so if I need a positional change in the night I should be able to alleviate some kinds of discomfort myself. I must admit though that it did feel a little worrying at first when I heard my carers leave for the night.

Before signing off I just want to say a big thank you to Ann and Debbie who have been doing a lot of running around on my behalf (as usual) these past few days getting everything ready for my return home. Thanks girls, it really is appreciated. I also want to thank my brother, Jason, who’s now taken over IT duties from Bernie, and managed to spend some time with me this evening setting up my computer and all the paraphernalia that I now need to operate it.

Mark

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