Friday, 7 March 2014

Until it all goes wrong

Just before Christmas, I had another blip whereby the pain was so bad it was hard to move. Of course, it all happened at my work's Christmas do, which I had been looking forward to for months, so I had to leave early.  Typical! So we contacted the GP and my hospice nurse who arranged for another MRI scan to be carried out at the local hospital.  This was done, I spent another night in a ward and then was transferred back to the bigger hospital for another dose of radiotherapy.  Luckily, I was only there for a couple of nights and the treatment did the trick.  This meant I was able to have the Christmas at home I wanted, cooking my perfect meal with my family and presents, food and wine galore.  Fantastic!
Oh Christmas Tree...
However, fairly soon after this, I noticed my legs and feet were getting really puffy.  I had an appointment with my oncologist mid January 2014 who said it was just one of those things that sometimes happens and the treatment is sometimes worse than the cure; I was advised to keep my feet up as much as possible.  Easier said than done! I also got the results of the MRI and a bone scan - the cancer had spread in my bones - but they had forgotten to do a CT scan so we didn't know about the liver.  But chances were, that had spread too. Not a surprise, but disappointing that the hormone treatments weren't 100% working.  It looked like chemo is in the future.

In addition, it turned out that a medication I had been taking to strengthen my bones and help with the calcium problem had done something weird with the bones in my mouth, so I needed to have surgery at the end of January to sort this out.  This was done by the maxillofacial unit at the local hospital, and seemed to be a quick and easy operation despite the fact my jaw was quite painful afterwards.  They said this was normal.

However, none of this stopped us from carrying on as normally as we could but each day was getting harder, especially as my legs became heavier, my mouth hurt and it was hard to eat and I felt more and more unwell.  Despite this, we booked a local holiday at the beginning of February to have a break and celebrate my birthday.  We had a wonderful time and I thank everyone who helped us to go so, so much! We got a disabled lodge for five of us but were upgraded to an even better one in which we each had our own room (husband and I shared though!) with en suite and an outdoor hot tub which was amazing!  The girls loved it! They went swimming and to the indoor playground whilst I relaxed, we went out for some gorgeous meals and outings. But again, each day I was feeling worse and my mouth was being really weird and painful to the point I could barely open it and nearly everything tasted horrible.

On our final day, my legs started bleeding so we got the medics in.  They advised us to go back to A&E - so we did.  We left late afternoon, so we only missed one overnight stay and actually, I think it was better to leave earlier when it was quiet than be stuck in a queue with loads of people and traffic trying to check out at the same time early in the morning.  And lucky we did - when we arrived at the local hospital's A&E, it transpired I had a massive infection in my jaw, presumably caused by the mouth surgery, that was treated immediately that evening.  This was a most unpleasant experience involving local and general anaesthetic and pain, so I won't go into detail, but I ended up in intensive care for a couple of days and then transferred into a ward.  I was there recovering for about a week and a half, with barely enough energy to lift my arms.  And once again, because I was bed bound with heavy legs, my mobility has gone again.  I was getting intravenous antibiotics, so was being poked constantly so cannulas could be fitted - I've ended up with a PICC line this time.  This experience wasn't great but again, the staff couldn't do enough for me with limited resources.  But it was very difficult and, if I'm honest, depressing.

So thank goodness for the local hospice.  One of the doctors visited me and we ended up making plans to transfer me as soon as the infection had cleared, wounds had started healing well and I could move about a little.  That's where I am now and it's amazing, as ever.  The care is superb, the infection looks like it's almost gone, if not completely gone, the wound is looking ok and I am shuffling about as much as I can, this time with a lovely zimmer frame.  It's now just a matter of getting things in place and my health up to scratch, so I can go home.

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