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.

So, what exactly is wrong with me?

What happened next? Well initially, I was sent home on the Friday night with some crutches.  But early the next morning we had a phone call from the A&E Registrar, telling us to get back to the hospital to get in the system to enable an MRI scan first thing on the Monday.  So we did!  I had a couple of interesting nights in the ward, still pretty much unable to walk anywhere but sitting up, reading my book and just waiting really to see what was happening. But Monday morning, it all kicked off following the scan (or scans; there may have been a CT scan too).

I was laid flat and told to not move.  Turns out I have tumours in my spine which were pressing against it and compressing it, so it was becoming less and less able to support me - hence the fact I couldn't walk.  Without additional support, by bending the spine, it was making everything worse and - worst case scenario - if it all went wrong, I was risking paralysis.  From here, it's a bit of a blur, but I was bundled flat into an ambulance and taken to a bigger hospital with a large oncology department, the same one where I had my chemo all those years ago, so at least I was familiar with it!

While I was there, I spoke to my oncologist who gave me more detailed results of my scan.  As well as the bone and spine cancer, there is some in my liver.  There was possibly a spot in my lung as well but that hasn't been mentioned since, so it may have just been a shadow on the scan - fingers crossed.

So I had five bouts of radiotherapy to reduce the tumours, which seemed to work as well as reducing the pain.  Additionally, I was (and still am) on pretty heavy duty painkillers.  I was also started on hormone treatment to see if that would help to keep things at bay - the cancer, especially in the bone, is manageable for a time, hopefully years.  I also had to lie flat permanently while they organised some sort of back brace for me.  This took about two weeks.  Thank goodness for Smartphones and 3G which kept me in touch with the world!  I must confess, the whole lying flat experience was a nightmare for so many reasons but the love and care I received from friends and family - in person, online, phone etc - kept me sane and positive.  I cannot thank you all enough for that and for the ongoing support since.

This particular hospital experience ended with the finding and fitting of the brace.  As you can see, it was a solid plastic piece of armour!  But it meant I could sit upright and begin to think about being mobile.  So my next step was rehabilitation and so it was back to the local hospital to get walking again...

My original back brace

Diagnosis of Secondary Cancer

Four years ago, in April 2010,  I was diagnosed with breast cancer, at the age of 35. I had a mastectomy, chemo and radiotherapy and I outlined my chemo experience in this blog.  For a while, we thought I'd kicked it. Life continued perfectly, with my wonderful husband and two young daughters. I even got my dream job.  I felt that I had done it, I had 'beaten' cancer and was on the road to a happy and healthy life with my gorgeous family.

About two years ago, we moved house and that's when I started to notice my body wasn't quite right.  My back was a nightmare! But I have always had problems with my back so I didn't think much of it - just kept popping the painkillers and doing what I could. But as the weeks and months went on, this became less and less. Even though we'd just moved, I wasn't able to sort out the house or decorate it as I wanted, as I wasn't physically able. My husband was worried that I had become super lazy!

However, things started to go really wrong about a year ago.  It was snowy and icy and one day, I slipped on the ice during the school run and felt like I cracked my back so it was even worse than before.  From this day, I was finding it more and more difficult to be fully mobile.  Walking became harder and harder until the day after Valentine's Day 2013, when I was unable to walk more than a few metres.  This culminated in a trip to A&E; following X-rays and scans and hurried conversations, it turned out the cancer has metastasised into (or developed into secondary) bone and liver cancer. It's incurable. But so far, it's manageable. So I am living with cancer, and I will live, as long as I bloody can. Things haven't been easy and I will post about what's been happening since I was diagnosed, but this gives a brief background as to how this second round started.  

Suffice to say, it's not been the easiest year.  But whatever happens, I will live with this shit disease. My girls need me, my husband needs me, my friends and family need me and I need them and refuse to leave them any time soon.