Its now been 5 months since my 2 failed surgeries. After seeing my consultant I have been waiting for a referral to Cambridge University (Addenbrookes) to have more investigative scans. In the mean time I have come off all medication for the diabetes inspidus, meaning it was a transient side effect of the surgery. That means after 3 surgeries I am luckily to have a fully functioning pituitary gland, even if it functions wrong.
However, I have since felt my body and brain deteriorate. My knees constantly hurt, some days it feels like I have tried to run a marathon, they feel heavy and stiff. I’m tiered no matter how much or little sleep I get. I get days where I just want to flop on the bed and not move, I just want to rest- fat chance with 2 small children and a business to run. The aches and pain in my body seem to be at a constant now, they feel weak and this does get to me. Constant pain is frustrating particularly when there doesn’t seem to be any end in sight, I just have to push through and ignore it as much as possible.
In the last few weeks I have noticed that my muscles have become hard, like they are retaining water. I had bloods to check my kidneys and other renal systems were function and they came back clear. This is one symptom I never had before, and not sure if this is part of the Cushing’s or not. When exercising my joints and muscles sometimes go into such a stiffness they feel like they are going to cramp or my skin might split. It’s horrid feeling, knowing that by exercising I can help to mange some of the symptoms but at the same time it hurts and can leave me feel exhausted afterwards. It’s a catch 22.
After four months my referral to Cambridge came through. I was to have a PET CT scan and a PET MRI scan. They will make a radiation compound that will be injected into my blood stream to help highlight where my body is over producing cortisol. This would then give a better idea for a surgical target or give a better idea of the treatment I need. They would also take bloods and take a 24 hour urine cortisol and midnight saliva test from me. On the day of the scans i had a canular fitted, painful and difficult as usual due to my narrow, movable veins. On the way down to the scan room the nurse had the phone call to say the radiation compound had failed the quality control test and so couldn’t be used.
To say I was disappointed is an understatement. I was crushed, more bad luck, more failure. More time waiting to get well. While she and the endocrinologist looked for another date, I took myself into the nearest toilet to ‘let off steam’. Anger, disappointment, sadness, frustration and loneliness were some of the emotions that came to the surface. Needless to say I haven’t cried as hard since the second surgery was deemed unsuccessful.
When I finally went back into the waiting area I told them I was unsure if I wanted anymore treatment or tests. I had had enough. I still feel that way mostly. Having been ‘ill’ now for 15 months and seeing my body get worse, not knowing what comes next or when is getting too much to deal with. I can’t make any plans too far ahead because I don’t know what might happen or when. I can’t plan for treatment because I don’t know what it is they will want to do or how I might be afterwards. I’ve been living in limbo for months and now when I thought that time might finally be over, I’m back to square one. I have to live with this disease for longer. I feel like my quality of life is compromised, I hate my body, how it looks, how it feels but I can’t do anything to help it. I constantly worry about my children, I don’t have the strength or stamina to play with them as much as I want to. Not only that but I may have to leave them again whilst I have treatment or worse see me ill during or after.
Part of me is ready to draw the line and just the let the disease do its worst, I could ask for hormone suppressants and refuse all invasive tests and treatment. No more waiting no more being poked or prodded. I could move on and do things without the worry of not knowing what comes next. I know the drugs could make me feel worse and its never going to cure me, but at least I could take back some power over the disease. I could have some control over whats happening to me. So far I have had to put a training course on hold and I had planned to open my own fitness studio in September but now that looks like I might have to put that on hold too.
I hate this situation and how it makes me feel. I’m lost and at my lowest so far. I know that I will probably end up going for the scans again on the 13th July, but for now I feel defeated and down and out. All I can hope for is that my body play ball and I can enjoy my two week holiday with my children.
