Where am I now?

So here I am in the brilliant hospice.  The care and attention to getting me better has been incredible. I've also had some fab visits from dear friends, so many well-wishes and messages and gorgeous gifts.  I feel so lucky to have such wonderful people around me, wherever they are in the world.

Beautiful!

When I arrived, I wasn't in a very good way.  Yes, I had managed to stand a little with the hospital physio's help, but I wasn't strong enough or confident enough to do much more.  I can now stand with help and walk/shuffle with the help of the zimmer frame.  I am being looked after holistically - medically, physically and emotionally.  They are also concerned about the whole family - it's not all about me!

I'm just going to take a minute to write about hospice care, as it isn't always what people think it is. The aim is to improve the lives of people who have a terminal illness, however long that may be, and people - such as myself - may need to go in and out for short or longer periods over time.  I've taken advantage of pain control, physiotherapy, occupational therapy, complementary therapies, palliative care and rehabilitation as well as the amazing care received overall from the staff and volunteers who work here.  There's also financial and practical advice and support for the whole family such as respite and counselling.  They try to be almost a home from home - for example, I've decorated the room with photos and drawings the girls have done and I get brought a Baileys once in a while which is most pleasant!  I have a family room with a sofa bed, so we've also had a couple of family sleepovers which were fantastic. Hospice care is free and this one is a charity (I assume they all are?), with most of its funding coming from donations, so everything helps.

Back to the present.... Yesterday the hospice arranged for me to go home for the day. This was the best ever! They've found a wheelchair I can use and so I was transported in their special van back home. Our cat was so pleased to see me! I had a nice long cuddle with her; we've missed each other!

Isn't she gorgeous?

The OT came over to discuss what's needed to get me home and we developed a plan of action, so I am more confident that things will start happening to get me there soon. My husband cooked a lovely lunch and we watched the new Thor movie, which I've been dying to see for ages! My mum collected the girls from school and came over so I also got to see them all which was brilliant. And then I had to say goodbye which is always difficult. But it has meant I am even more eager to get home as it was so lovely to be there with everyone. Patience and time, but I will get there... we're aiming to get me home later next week!

Transferring closer to home

Once the back brace had been fitted, I was returned to the local hospital pretty swiftly.  In fact, I think it may have been the same day.  We were very happy with this as it meant less travel for the family as well as being a more familiar setting.  However, by the time I got there, the night shift was just coming on and they didn't quite know what to do with me or where to put me!  So getting settled was a bit of a nightmare: getting the right bed (I need an electric one), the right medicines, being put in the right place - but by the next day, everything was sorted and I was in my own room with my up-to-date, correct drug chart and a perfect bed.

The hospital staff were all brilliant.  They are so kind and caring and, despite being so busy, did as much as they possibly could for me.  They all learnt how to deal with the brace.  At night, I had (and have) to be laid completely flat and log rolled out of it by four people.  I then must sleep straight and flat on my back.  In the morning, I got (and get) log rolled back into the brace and that meant I could start to sit up.  It was really weird at first, having been flat on my back for over two weeks; the dizziness was the hardest to overcome initially.

Once I had got used to sitting up, it was time to start to think about mobilising.  Apparently, one's muscles start to forget to work after just eight hours - which is why legs may feel wobbly in the morning!  I had no idea.  So after a few weeks, my legs were completely gone and I needed the hospital's physiotherapists to help me walk again.  I don't remember how long this process took, from being stuck in bed to being able to sit out in chair.  Apparently it was a few weeks, but to me, it's a bit of a blur.  But with the patience, skill and kindness of the physios, I was finally able to get out of bed and shuffle to a chair!

Sitting out in the chair

From here, it was a matter of starting to properly walk again which took practice each day - but each day, I was walking further and further with the help of my lovely trolley walker.  My first big outing was to the hospital's reception, where we could sit, chat and people watch.  This was lovely after having been stuck in the one room for however long!  And the other thing I needed to practice was stairs - again, which took some time, but I did it.

My trolley walker.  I still haven't pimped my ride.

Once this was under control, we were finally able to start to think about getting me home.  I had a day trip home with the hospital's Occupational Therapist to check what we had, what was needed and how best furniture and equipment could be arranged to ensure I was mobile but safe.  The only hiccup was getting a care agency to come in at an appropriate time with the right number of people to log roll me; this delayed the discharge process for over a week, which was very frustrating but luckily I was allowed day trips home in the meantime.  However, a great agency was found and finally, I left hospital at the beginning of April 2013.  I had been in hospital for seven weeks.

Again, the support I received from friends and family was my lifeline. The visits I received made my days, as well as all the kind messages and contacts via the internet and phone. It all meant - and means - so much to me.