Tuesday, June 28th 2011

Home again and the beginning of the next phase

I was discharged from St Michaels Hospice at 4 PM this afternoon, four weeks exactly since I was admitted. Over the past 12 months I have spent a total of three whole months (spread over three visits) at the hospice which makes this my second home! Before moving on I would just like to express my sincerest gratitude once again to all the staff and volunteers at the hospice who made my stay there a very enjoyable one. I know I’ve said this before but truly if you could take what they have at the hospice, scale it up, and wrap it around the world, then the earth would be a much better place for everyone.

I had mixed feelings about leaving the hospice because I knew that I was entering a late stage of the disease and that effectively I was going home to die. That may not happen just yet of course but it is certainly something that I am acutely aware of every time I try to breathe. The agreement I have with the hospice however is that should my difficulties become too much to manage at home during the final stage then I will transfer to the hospice, otherwise my desire is to spend my remaining days in my own home with the hospice at home team supporting me there.

I have some new equipment in the home that needed to be in place before I was allowed to be discharged. The equipment is an oxygen concentrator, a machine for providing oxygen in the event that I suffer another shortness of breath episode. We also have an oxygen cylinder as a backup in case of power failure. I would stress however that this equipment is only going to be used in emergencies. I am not planning to spend my days hooked up to an oxygen supply.

My new 24 hour/7 day a week care package commences this evening meaning that the number of hours care I receive increases from 84 hours to 168 hours a week! Previously there were several gaps in the day where I was alone. With my breathing in decline that is no longer sensible so I now have a waking nurse each night and a carer to fill in the afternoon gap where I used to have some time to myself. I had fought to maintain some degree of independence for as long as I could but even I was ready to accept the changes after recent events. It will seem strange at first always having someone here with me but also reassuring. Tonight we begin with a nurse from the hospice at home team.

Mark

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