Checking In

Just thought I would do a post to say that things are plodding along fine at this end.  I've been off work for almost a month now and have been focusing on building up my strength, mobility and confidence and it's been progressing really well. Going out in the car or wheelchair isn't really a big deal any more; my husband and I have got the knack of manoeuvring me about so it's more and more straightforward each time. It would be great if I didn't have to sit in the wheelchair to get about and could rely on my lovely trolley walker, but I don't think that will happen for a little while. In the meantime, I am just enjoying my new-found freedom, even if it does mean I have to sit and be pushed!

It's quite amazing to experience the world from this viewpoint and see just how much things aren't thought about for physically disabled people - things like dropped kerbs being wonky or broken, shops' A-boards in the way on the street and even people who just don't seem to see the wheelchair and act surprised when they nearly crash into it! But on the flip side, there's plenty of ways that things have been thought out properly and we're really appreciating those; I liked this trolley thing at Sainsbury's that clicked on to the wheelchair and we could shop quite easily with it (apart from avoiding the aforementioned oblivious people).

Another brilliant development was that, at the weekend, we discovered I am able to get in and out of bed with my husband's help, and sleep in my back brace. It's not the most comfortable of arrangements, but it does mean that I don't have to have four carers put me to bed at 9.30 pm every single night and wake me at 7.00 am every single morning. What it also means is that, when I have fab friends over for say, oooo Eurovision, I can cancel the carers and stay up late! So we are trying again this weekend and if it is still easy, I may just do it every Saturday night.  Hurrah for being able to manage my own time and stay up on a Saturday!

At least it wasn't nil points for the UK!

The only fly in the ointment is that I am so tired all the time. I assume this is a combination of my body trying to work to get me functioning again but also it's hard to sleep. No specific reason, just general discomfort and me thinking I guess. But it's annoying when I just randomly drop off in the day, especially in public! Need to sort that really, especially if I start to drool....  eek!

I'm getting more mobile!

I've been home now for just over two weeks and we have been slowly adjusting to everything in the meantime. Every day, the carers come in to get me up, into my back brace and washed/dressed first thing. Then I either chill out on my chair or sort things; have also had lots more visits from professionals to ensure everything is as it should be.  The carers come back at lunchtime to get me standing and I go for a little walk - every day, not a great distance but further than the previous day and for a little bit longer. It's getting easier to stand and walk with support. And then in the evening they get me back to bed and remove my brace.

We've also had some lovely visits from friends and family which is always good, especially when I am sitting up in normal clothes rather than trapped in a hospital bed! And I've managed to do some work which has been brill - both for my employment and for the PTA, which gives me confidence that my brain hasn't melted with everything going on. I hope that next week I can build on this some more.

I have had two really good things happen this week though with regards to my mobility. Firstly, my wheelchair has arrived which means I can get around the house and out into the garden. Technically, it's an indoor chair but can be used briefly on flat pavement so using it on the garden path is fine. I'm also getting better at driving it. Bring on BBQ weather!  And secondly, I learnt today how to get in and out of the car thanks to the OT. This means we can go out this weekend, perhaps for a Mother's Day meal? Or at least down to the beach. Hurrah! She also recommended ditching the zimmer frame and returning to the wheely trolley walker I got last year.

My ride awaits!

So all in all, (literally) small but positive steps forward.

Homeward bound?

Today we had a very productive day with lots of things getting organised and/or finalised including equipment, care arrangements, safety issues, transport - so many pieces of a puzzle that needed being put together to get me home. And I do believe that today, the puzzle is almost complete!

Everyone has been totally amazing to get us to this point. And as much as the hospice is wonderful, I do want to be home with my husband, girls and cat. Please keep everything crossed that our scheduled date of Thursday goes ahead as planned!

And life goes on....

Once I got home, it was time to try to get back to some semblance of normality.  This wasn't the easiest at first.  We had to have my electric hospital bed downstairs and carers coming in twice a day at 7.00am and 9.30pm, which is a little restrictive but necessary.  We also had many, many phone calls and professional visits and appointments to manage - again necessary but a little overwhelming.  But people were doing their best for me and it was (and still is) very much appreciated - everyone was wonderful.  The best bit, of course, was visits from friends and family and it was lovely to catch up in my own home!

Fun at the beach!

I probably spent a month or two rehabilitating, as well as determining a plan of action to get on with life. I made plans with my manager about how to return to work, I joined the school's PTA, I started blogging money-saving ideas. And we did stuff as a family as much as we could.  As long as I was wearing my brace, I could pretty much carry on as normal.

Of course, there were a few blips here and there; my immune system is shot to pieces coping with the cancer, I guess.  The worst was high calcium levels, when calcium from the bone leaks into the blood system, making me exhausted, sick, loss of appetite, lack of concentration and confusion.  These episodes resulted in my ending up in the local hospice who are simply incredible.  They looked after me by giving the medicine and care needed to get me better and they got me home safe and well.  It's the most amazing place and we are so lucky to have it in our area.  It's a charity, so most of its budget comes from fundraising so any donations help!

On the whole, I was getting on with things really well.  I was phasing back into work and enjoying going into the office and seeing everyone - oh, and doing the work too!  We were doing loads of fun stuff as a family and I was being social with friends. Everything was - sort of - normal!

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.