So the first few days back at home all I could do was sleep. I had absolutely no energy and even taking a shower was exhausting. Thankfully my mum was still around to help me with the cooking, cleaning, etc or I fear I may have wasted away (or at least starved for a couple of days!).
The first week consisted mostly of sleeping, eating and going out at least once a day in order to get some fresh air. I could barely manage to read or go on the computer because at this stage I was still suffering from headaches and even though the painkillers helped, it was difficult for me to concentrate for long periods of time.
I couldn't really see much improvement and was getting very discouraged because once I had returned home and was no longer spending all day lying in a motorised and adjustable bed, my severe backaches had also returned. But after a couple of evenings something quite miraculous happened, I felt cold! Now this may seem pretty ridiculous to most people but for me, this was one of the first signs that things were different...
Ever since I had started suffering from the symptoms of Cushing's and had put on weight, I was always feeling hot and sweaty and was practically incapable of feeling the cold. This isn't to say that I didn't realise when the temperature was cooler, but that it didn't matter to me because I was always hot. Now my body was sensitive to the cold and even drafts! I actually had to start turning the heating on in the evenings.
As the days progressed I was starting to improve, having less headaches and being able to focus for longer. But week 2, the first obstacle hit! I got a bad cold. Again, this doesn't seem like much, but when your body is no longer producing the hormone which helps you fight infection and your nose is still sore and sensitive from surgery, a cold is one of the last things you want. Needless to say, any time I felt a sneeze coming on I tried very hard to stifle it.
Luckily week 2 did have a highlight: my 2 week post-op follow-up with my consultant. She was very pleased with the results from my blood tests from the hospital and had already received the histopathology of my tumor which was good. They have a new test now which determines the rate at which cells regenerate themselves and basically the higher it is the more likely that the tumor is malignant or will come back. My tumor had a renewal rate of less than 2%. A very good result indeed.
She told me to lower my dose of hydro (replacement steroid) every 2 weeks until I was down to 10-5-5.
I also had a chat with the specialist nurse who told me about the emergency injection and gave me a leaflet indicating in which instances I needed to adjust my dosage.
In case of illness with fever, I am to double my dose for the duration of the fever. If I vomit or suffer from diarrhea I also have to double my dose and if I vomit again and the oral hydro is not absorbed I need to do an emergency injection. This injection is also necessary if I suffer from sudden shock such as a bereavement, car accident, or injury. A lot of information was exchanged and it wasn't until I got home and started reading the papers again that I started to worry a bit.
For example, it says that I need to be careful if I start feeling drowsy and faint because I could slip into a coma and die! Needless to say, reading this scared me because living alone means that you always fear that something might happen and that you aren't able to react. Thankfully mum reassured me and I told myself that there was no point in worrying about something that "might" happen!
So just as I managed to get rid of the cold in week 3, I developed a skin infection on my neck. Now this infection is actually something I've had for a few years now. It started around the time when I was back in HK in 2006, but I had started treating it then and it had gotten better. Then when I returned to the UK, I had seen a dermatologist in France for my acne and he assured me that the thing on my neck would go with my acne treatment. It never fully went away but because it wasn't bothering me, all the other Cushing's stuff kind of pushed it to one side.
But this time it refused to be ignored, the spot on my neck started swelling and it was now very painful not just to the touch but even when I was moving my head. So I went to the Doctor's since I had a weekly appointment there anyway with the nurse in order to monitor my blood pressure. The doc gave me some antibiotics and informed me that I also had a slight fever.
"Oh CRAP! what do I do now?". My leaflet says I should double up my dose but I just wasn't sure since it was only a mild fever. So I tried to get a hold of my consultant. Of course, she's impossible to reach and the woman answering the phone is completely unhelpful borderlining on rude even though I've told her this is an emergency and I am happy to speak even to a nurse as I'm sure they could answer my question. After about 2hrs of panicking about what to do and not wanting to do something wrong, I have the good sense to call the Pituitary Foundation helpline. The woman I speak to is an absolute angel and although she reminds me that she cannot give medical advice, as an ex-cushie who also takes hydro, she reassures me that I can/need to take a double dose and that in any case, doubling up will not do me any harm however not having sufficient steroids in my system can. So with piece of mind, I double my dose and vow to never rely on speaking to my consultant in case of emergency!!
Week 4 and my neck and back haven't really improved but I'm starting to feel much better and am actually getting frustrated by the fact that I can't do much. Mum is an invaluable support as she is sensitive to my needs. We go out every day and she pushes me to motivate myself but also understands that sometimes I just need to stop and rest. I'm so glad she's around because people aren't very sympathetic at first glance. This is because I have no scars to show and don't exactly look like I'm dying either! Back at the doc's and another series of antibiotics. Good news, I can reduce my BP medicine dose as it's staying stable at the moment.
Week 5, still no improvement on the neck and back front but apart from that I'm feeling pretty good. I'm still sleeping a lot but mentally I'm much more alert and have more and more energy. I am able to go out for entire days even though I have to pause regularly to rest my back. The previous weekend I have a visit from my cousin and it's lovely to have a girl's weekend shopping, chatting, laughing, etc...
But this is the week that mum leaves and I have to admit that goodbyes are tough! Not having been alone for about 6 weeks and having had a really lovely time with her, I struggle to fight back the tears...
I've realised that this has now become a VERY long post so I shall split it again here and will wrap up the last couple of weeks in Part 3.
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