About three weeks ago I received an urgent phone call about some bloods I had had done the previous day. It had taken me a few days to get them done, following some weeks of problems with energy and mobility which I assumed was sciatica and stress related (going through some emotional stuff with hubby). Anyway apparently calcium was high and HB very low and they wanted me in hospital. A week later following tests, blood transfusions, neuro surgeons and other stuff, I had been diagnosed with two broken down vertebrae in my back with some sort of suspicious swelling behind, and suspected lesions up my spine. Treatment was to be radiotherapy asap and a switch to some new drugs.
I managed to escape the hospital after a week as I had a band tour to go on and didn't want to miss it! That was a struggle as I hadn't started treatment yet so was very mobility restricted, but it was nice to get away anyway.
The radio has predictably left me weak and very dependent on my husband for things like getting upstairs. This has been hard to cope with as I am very independent. I wrote an informal blog in the early hours of the morning a few days ago, entitled 'Feeling dirty'. This came out of the fact that I was taking a lot out on Tim out of sheer frustration - I felt annoyed, dirty, even contagious which wa badly affecting me. The steroids had much to do with this I think - as I am now chopping these down I am starting to feel more like myself again but those early days when I was on a higher dose, and still struggling with what I had just been through in hospital...that was interesting times.
I mentioned earlier that my husband and I had been splitting up before all this kicked off again. I am happy to say this is not currently still happening but we obviously have some issues to overcome and I do see us very much in a patient-carer relationship at the moment. This has led to frustration on my part as well - he can be affectionate but that is very much taking a back seat to the essential practicalities at the moment. He goes to work but in between is running around almost constantly. It is Carers week this week and our eyes have been opened to what carers have to do, just from his brief experience so far.
This has been very helpful for me to put down in words and I welcome comments and thoughts.
