Where was I? Oh yes, August 2015 :)
After numerous phone calls and messages to the Thyroid oncologists secretary I finally received the long awaited letter from them. Yes I thought, I may finally be able to reduce my medication and begin to feel somewhere near normal (normal for me that is haha ). I should really stamp that phrase 'don't count your chickens before they're hatched,' on my forehead. The letter started off well, a huge sigh of relief, even though my blood measurements wasn't excellent they did give a bit of room to try reducing my dose. I was to take 100mg of thyroxine one day and 125mg the next. Fantastic news I thought, but like I have indicated things are never that easy for me. my fine motor skills are not brilliant and those 25mg pills are so small I was lucky to even see them and the dope I am I would forget what dosage I had took the previous day so it was more of a pain than anything. Anyway back to the letter. Further down the letter I was thanked for attending the hospital for a CT scan and although there was nothing untoward reported they had noticed a small area on my LEFT kidney which could be a cyst but looked slightly different to the other cysts on my kidneys. They felt it needed further investigation and had referred me to the urology dept at my local hospital.
Now this I really wasn't worried about as from childhood I had always had a slight problem with my left kidney. As a child it was described as a scraggy kidney, in other words it was a bit bone idle to do the job it was meant to do, a bit like the colleague at work that never seems to do any work but takes all the praise for the work of others haha. I was hoping I could put an end to it all during the summer holidays so I didn't have to ask for yet more time off work but no such bloody luck. When I didn't receive an appointment for the urologist I phoned the oncologists receptionist again to ask who I had been referred to so I could phone them and get some idea of when I would have an appointment. She told me but advised me to wait a couple of weeks before I contacted them. I took her advice but still no news so I phoned the urology dept. To my surprise they hadn't heard of me apart from when I was under that dept years back. I was beginning to feel a little frustrated but at the same time felt as if I was being a bit bothersome by phoning them all the time. The secretary at the urology dept took down my details and asked who was referring me so she could contact them. I received a phone call to say she had managed to contact them, they had faxed a report across and I should expect an appointment in the next few days.
Cancer really didn't cross my mind with this one, I just thought it was old problems rearing their ugly heads again. In hindsight even though I say it didn't cross my mind I think there is always a small doubt lingering at the back of the mind. I received my appointment, it wasn't really anything to write home about except I needed to have another CT scan. I did ask the question why as it was only recently that I had one. Apparently they needed to do one for their records. I felt a bit silly because I assumed all the hospital records were linked up. Off I plodded for yet another scan and was given an appointment to see the consultant for the beginning of November. I was getting a little upset about how long everything was taking and no matter how hard I tried I couldn't see an end in sight. Things were really beginning to take their toll on me and I don't know whether it was me feeling emotionally drained or the cold weather but I was taking a lot of time off work due to various infections and a low mood. Don't talk about cry me a river, somebody would only have to ask how I was and I would cry enough tears to fill the Atlantic Ocean twice over. I was becoming a right old whinge bag and I couldn't find the key to put an end to it. I was trying to keep it all together but underneath I had had enough and for the first time in a long time I wanted my mum to give me one of those special cuddles that only a mum can give but she had passed away in 1985 due to breast cancer. I didn't realise it at the time but it was the start of me going through a depression. If you were on the outside looking in I don't think anybody would have suspected that I was going through it as I was really good at hiding it. My eldest son was fighting his own demons so I didn't want to burden him with how I was feeling, my youngest was applying to universities and I was trying to support him through that and my closest sibling had just been diagnosed as being a diabetic so I was trying to support her through that. At that time I felt very lonely even though I was surrounded by people.
In between having the scan and my appointment with the urologist I had an appointment to see my respiratory consultant and I looked forward to seeing him, a friendly face to help me make light of everything that was going on. Imagine my disappointment when I arrived only to be told he was away and I would be seeing somebody else. I walked into the consultants room with my CNS and was dismayed to not get the usual jolly smile. I sat down and the stranger behind the desk started talking, asking how I'd been but not really waiting for a reply. He said from the lung point of view they were quite happy and the recent CT had shown nothing new or untoward. He then said the urologist would speak to me about the tumour on my kidney. Talk about feeling foolish, I looked at him whilst trying to stop the floodgates opening then turned to the CNS. I explained I didn't have an appointment until November and I was unaware that this thing on my kidney was anything else other than a cyst. She said she was going to try and get my appointment moved forward and she would phone me the next day. I decided to walk home even though the heavens had opened, at least nobody would be able to notice my tears. A couple of days later I had an appointment with my GP and while I was choking back tears (yes again) I was trying to explain what had gone on at the hospital. She said 'Oh Wendy I think there has been a misunderstanding.' She brought up a letter on her screen which she explained didn't indicate cancer but they were a little unsure what it was and continued to explain when they say tumour it can be benign as well as malignant. I convinced myself that being a bit ignorant I had totally misinterpreted what they had said and felt a wave of relief. As you have probably realised by now things never go straightforward for me. Back up to what was beginning to feel like home from home, I went for my follow up urology appointment, spoke to a lovely nurse and was generally feeling quite positive. My name was called and I sat in the consulting room awaiting the doctor. Not the usual kind of doctor I was used to, in fact I felt he was quite stand offish. He said after looking at the scans they couldn't be certain what it was but not to worry it was very small and I probably would never have known it was there if I hadn't had the scan. In saying that they felt they should do ultrasound guided biopsy of it and that would happen around December time, 5 months since I had my first scan. By this time I was beginning to question my own sanity, why did they find it necessary to perform a biopsy if they were sure it wasn't cancer. Confused.com lol.
Nothing to eat or drink on the morning of the biopsy. was given a gown to change into and I sat and waited and waited and waited picturing a enormous cup of coffee when it was all over. The nurse came over and asked if anybody had been to see me yet, it was now 11.30am and I'd had nothing to eat or drink since 2am that morning. She got on the phone and told me a porter would be here shortly. It was 1.30pm before anybody came, a comical bloke that had me giggling all the way down to the x-ray dept, it took my mind of the huge coffee even if it was only for a few minutes. Only a few more minutes and I would be able to close this chapter, the end was within reach, yeah right. The technician got everything ready, 2 doctors entered the room, the younger of the two got me in position and asked what the scar was on my side, I explained that I'd had a partial nephrectomy 18yrs ago due to a longstanding problem with that kidney. She ran the probe over the area, not gently neither. then spoke to the other doctor, he took over with the probe, got me to lie on my back and then asked if I would be comfortable lying on my belly, I got into position and waited in anticipation still focusing on the ever growing cup of coffee at the end of it. He put the probe down and told me they were unable to carry the procedure out and guess what, I burst into tears, I don't know whether it was lack of caffeine or the fact I was again sitting in limbo lounge. Don't worry he said, where there's a will, there's a way. Its just back to the drawing board and it is only tiny. I wanted to scream that the size was not the issue, it the bloody uncertainty of it all, all the confusion and me getting on with things. I really think my guardian angel is a bit of a joker at heart :) Niagra falls started again. Before I left the hospital I was told I would have an appointment before Christmas haha.
