Christmas was fast approaching and I still hadn't heard anything. This time I phoned the urology CNS, no answer, so I left a message, I hate talking to a machine, makes me feel like I'm talking to myself. I arrived home from work to a message on my phone. Firstly an apology for not getting back to me sooner and to explain what they were thinking of doing next. The plan was for them to do a CT guided biopsy of the area. I was to receive an appointment within the next couple of weeks. Guess what the appointment didn't arrive, Christmas came and went and I felt it was pointless pursuing the whereabouts of the appointment over this period. I watched Big Ben ring in 2016 but couldn't look at it as a fresh start. A couple of days after the new year I again phoned the hospital explaining that I was worried that the letter had gone missing only to find out that they had decided not to do a CT guided biopsy and an appointment would be sent out for me to meet with the consultant. I again went to see my GP and told her the way I was feeling and worried that I wouldn't be able to convey this across to the consultant. She very kindly wrote me a letter and included all the questions I wanted answers to. The CNS said hello to me as I handed my appointment letter to the receptionist, she asked how I was and I explained I was finding everything extremely stressful, more to the point the length of time I was having to wait to get some answers. I asked if she could pass the letter from my GP to the consultant before I went in to see him.
For what seemed like an eternity I waited in the waiting room until my name was called and the uppity consultant walked in, maybe I'm being a bit unfair calling him uppity but I just wasn't used to the doctors at this hospital being as curt as he was. In a different situation he may well be a very nice man :) Anyway I sat there and before he even said anything I could feel the ever familiar swell starting to stir in my eyes, told myself to get a grip but no, out they sneaked, I searched desperately in my pocket for a tissue at which point the CNS handed me a whole box ( to be honest I thought that was a bit presuming of her as I felt I only needed a couple). He explained that they had discussed my case in depth at their last MDT and they felt the way forward was not to carry out a CT guided biopsy but to perform a partial nephrectomy. Perform a partial nephrectomy on a kidney that had already had a partial nephrectomy and all because of this incy wincey little thing that had decided to take up residence in there. He explained they simply didn't know what it was but they couldn't take the risk of just leaving it and it being related to the lung cancer or thyroid cancer. Another totally ignorant moment that made me feel a bit thick again. I said 'but there was nothing in the lymph nodes so how can it be related?' By this time the CNS had handed me a bucket as a the tissues were not enough haha. I was beginning to feel like I was up the creek without a paddle, that creek that starts with a big SH and ends with an even bigger capital T. It could be totally innocent but they couldn't take the risk of just leaving it. If they could have got a biopsy to give them the answers it would have been a different story, it may have revealed that it was nothing but a growth similar to a cyst or a kidney cancer in which case they may have been able to just keep an eye on it as it was only SMALL. So now the C word had been mentioned but don't worry, its only SMALL. I'm sure if it had have been him in my shoes size wouldn't have mattered. I was being referred to the surgeon but there was no rush, no bloody rush, this had been going on now for 6 months. My boss had pulled me in the office to let me know there were concerns about my attendance and now I was going to need more time off.
February 11th my youngest son's 18th birthday I met with the surgeon, a totally different personality to the other doctor, he reminded me a little of my respiratory consultant. He explained to me their intentions. The aim was for a partial nephrectomy using keyhole surgery and if that proved difficult they would rather that open surgery to remove the part that needed removing they would opt to remove the rest of the kidney. The procedure was to be carried out in around 6 weeks time.
I received a date through the post for April 18th ( almost 9 months since the scan). I didn't think my boss would be happy as this was the first day back after the Easter break. I knocked on his door and gave him a copy of the letter, he said he was sorry to hear that I needed more surgery but as my attendance was causing concern I would have to attend an attendance monitoring review meeting. I understood that I had a lot of time off and the need for an AMR meeting but just wish he could have postponed it until after the surgery. He really got my back up when he asked if I would be better off not working, what I said to him is another story. An outside agency would be chairing the meeting. People that really know me know how private I am and I really didn't want to discuss my health with someone else.
The week before my surgery was due my cousin was rushed into hospital and my daughter in law was took into hospital to be induced as her blood pressure was very high which posed a risk to her and baby. So in the midst of trying to make sure my house was in order, getting things ready for the hospital, ensuring there was enough food in to keep my youngest from living on takeaways, I was trying to divide myself between 2 hospitals and helping to look after my eldest sons tribe. I did consider postponing surgery but decided against it, after all I was going to get to meet the newest addition to my ever extending family before the op, but this baby was in no rush and I went into hospital hoping he would be able to wait a little longer.
I came round from the surgery on a different ward and went into a bit of a panic hoping my phone had found its way to the same ward, just in case my youngest grandchild had decide to make an entrance. It was the next morning when he finally arrived, my eldest son sent me lots of wonderful pictures but it wasn't the same as actually getting to hold him. I wasn't in too much pain, more discomfort than pain but I suppose the meds helped with that. I was discharged 2 days later feeling very weak but glad to be going home. A few days later I received an appointment for a follow up for August 2nd. It actually brought a smile to my face because I thought an appointment that far away must mean that the pathology results were in and this wee thing that had caused me so many sleepless nights was nothing sinister. Yep, you've guessed, I'd counted those bloody chickens before they were hatched, would I ever learn. The nurse had just left after checking the wounds (one of them was a little infected) when the phone rang. It was the surgeon, the old rigmoral, How are you doing, I told him I was relatively well, lacking energy but doing okay. Then the bombshell, they had the initial pathology back and it was definitely a cancer, the good news (if you can consider it good news) was it wasn't related to the lung or thyroid. It would need further investigation and he would write to me when he has more news.
I don't know whether I felt angry about the length of time this had all took, whether it was fear or whether I was upset but I went on a rapid downward spiral. I didn't want to be around anybody, I couldn't really talk to my family because I hadn't told them the news and didn't want to until it was straight in my head. I tried to hide myself away. I remember feeling I need help, so I phoned my GP and blubbered down the phone that emotionally I wasn't in a good place. She asked if I felt up to going to the surgery and I said yes. I took up so much of her time that morning just crying and not being able to understand why I was feeling that way. She said she was not happy that I feeling the way I was but was relieved that it had finally erupted. I didn't know what she meant at that moment in time but I do have some understanding now. I didn't argue when she offered anti-depressants along with referring me to a telephone councilng service. I just wanted some normality back in my life. I went back to work in July on a phased return but before I returned I had to go to occupational health and have another dreaded AMR meeting. I was only in 3 weeks before the summer holidays began. The aim is to return in September working mornings only for the first week and then the second week increase my hours each day until I am back to my full hours.
August 1st I received another letter from the surgeon, it reads as follows -
Dear Wendy,
I hope you don't mind me writing to avoid further delays. The lab have again sought other opinions regarding your kidney tumour. They remain happy that this is a kidney tumour and not related to previous tumours. They are however saying that it is a slightly odd and with your background of other cancer diagnoses they felt it might be wise for you to be referred to one of the genetics specialists for assessment and advice. I hope you don't mind but I have referred you to a lady called Dr ***** . I suspect that there is a decent chance that you and I will be able to chat before you meet the genetist.
August the 2nd was my follow up appointment and I know I should have wrote all the questions I had to ask down but (slap on the wrist) I didn't, so came away kicking myself. I suppose I could write a letter or just wait until I see the genetist (I can't even say that word)
Think I've overworked my computer enough for today :) x
