In March I completed a fairly rigorous chemotherapy regime - RCHOP. For the first time in over a year, I felt wonderful and able to tackle most things. However, in the subsequent months, I quickly noticed that simple tasks had started to make me feel increasingly tired. Then, without warning, came the pain.
The pain was isolated to the groin area. It then spread to my abdomen and lower chest – all areas of previous lymphoma. I was now being literally ‘knocked-out’ for much of the day. The sensation might be termed as that of being disorientated and a hellish sensation of feeling so very ill. I’m frequently white – it’s an experience that I can’t relate to any other illness or disease I’ve had before - other than cancer.
In this time I have emailed the Mac folk, visited the consultant and had many consultations with blank-faced doctors eager to send me out the door to ‘try’ a different potion. My cupboard is full of failed drugs regimes. I’ve been offered psychological support and pain management – both of which I’ve refused as I regard them as distractions to the main event. The consultant always refers me back to the GP for initial advice – which is never more than the head-scratching routine as indicated. The haematologist couldn’t feel any new areas of involvement when we last met. However, there were no such signs when I was finally diagnosed via a CT scan last year.
So here I am, eight months into the symptoms with no clear idea or notion of what might be going on. A PET scan in March 2008 initially gave me some guarded good news, with only a few areas of concern. My bloods were OK last time. I don’t really know what to do for the best. I don’t expect absolute guidance – it’s just the frustration of it all is getting the better of me.
