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Friday, 22 April 2016

Third Time Lucky

What a week. I've had two hospital appointments in different hospitals where I've had a mammogram, ultrasound, blood tests and met my latest urological cancer consultant.
First up was Burton Breast Care Unit where I was referred as I've got more lumps - I kept this quiet as I was confident it would be ok. My history and my Mom's breast cancer meant they had to be thorough - and they were, they discovered a cluster of cysts. My confidence dwindled when one of the lumps was difficult to identify and a doctor had to be called in, thankfully it wasn't anything nasty and I could tick that one off and run. Despite my bravado I can now admit to a few tears when  got outside and my brave face slipped a little.
My real worry was the appointment I had yesterday at the Queen Elizabeth in Birmingham. My anxiety wasn't centred on the C word however but because this is the third hospital I've had a referral to. Having had a bad experience at my first hospital and being dismissed early from the second I almost felt like a naughty child being given a last chance. Despite reassurances from family, friends and my GP as well as support from other kidney cancer patients I was uncomfortable with having to start again.
After a two hour wait by which time I was feeling sick with nerves we were called in. The first thing I noticed was that there were two other nurses present in the room, one of which was a uro-oncology nurse specialist. This is the first time I'd seen a specialist nurse in 3 years, I hadn't realised they existed at the other hospitals and only found out about them when Macmillan asked if I'd met with one.
The consultant led a quickfire Q&A which was a little awkward as I really didn't want to speak about my previous experience, I wasn't there to complain. It was established that the hospital protocol stated that I should/would have received regular CT scans for 2 years and continuing ultrasound scans for the remaining 3 years giving a full 5 year remission period. Therefore I have been booked to have a CT scan soon so they can assess what's happening now.
I asked about my family history, my Dads kidney problems, my Aunt's death from kidney cancer and my own health record having kidney disease on it. I was told that this wasn't relevant right now and that a CT would be needed to help determine any issues. I'm still no clearer about this but will ask again after the scan.
We discussed other ongoing health concerns but again the scan will be necessary to see if there are any underlying problems. I also mentioned the back pain I've suffered with since surgery and he did say this could be nerve damage and therefore he would refer me to a pain management specialist. Again this was a first as at Heartlands I was told it had nothing to do with the surgery even though I'd had no pain before it.
The nurse specialist took notes throughout and when we were leaving came out with me to further reassure us of what would now follow. I was sent from there to have a blood test to see if my kidney is functioning properly so I can have the CT scan. The nurse gave me a copy of the notes outlining what had been said as well as a leaflet about the service and a holistic questionnaire to fill in. She was wonderful and made me feel a whole lot better.
All in all it was a far better experience than any I've had previously. As well as an introduction to a nurse specialist it was the first time I've received any kind of leaflet from a hospital in 3 years. I will welcome pain management as I don't want to remain on medication indefinitely and being up to date with appointments and scans will also be a relief.
I hope now I can put the past 3 years behind me and focus on keeping well and moving on. I'm confident that I'll receive the correct care from the QE and reassured that the nurse specialist is on hand to speak to if I have concerns. That in itself is a huge relief.
I'll update next with my CT results but I'm confident things are going well and this time is definitely third time lucky.

Wednesday, 6 April 2016

Fear & Loathing

The date for my referral is through, Thursday 21st April at the Queen Elizabeth Hospital in Birmingham and I'm not sure how I feel about  this. Having been signed off from Queens Hospital in Burton at only 11 months this will be my first specialist appointment in over 2 years.
I've just passed my 3 year cancer anniversary and have admitted to feeling quite lost and bewildered about my ongoing care. While I can't fault the treatment from my GP, I know that as a cancer patient I should still be under the care of a specialist. This has been established and questioned by many sources now and although I was compliant in being signed off, it was the wrong decision.
It took me months to build the courage to ask about a new referral and when I did my GP was quick to arrange this, he was never comfortable with my discharge from Queens. Other factors led to this appointment as health wise I have had a few problems lately but it was a tough decision to make.
Now the date is approaching I feel terribly apprehensive but not just about the health implications. Obviously I'm a little nervous about having another scan and I'm quite anxious to ensure my family history is better examined. The fact that my Dad's suspected kidney disease and my Aunt's kidney cancer were dismissed initially doesn't fill me with confidence.
The truth is I feel like a nuisance. From the start I had a rocky journey which is what led to me changing hospital trust, it was fear that led me from the hospital where I was originally admitted. Being dismissed from my second choice hospital wasn't an issue at the time, I was actually relieved not to have to go back into that environment.
The QE is going to be my third hospital in 3 years and that makes me sad. Apart from my GP there has been no continuity of care and now I have to start again at square one. The thought of walking into a new hospital and meeting another specialist fills me with dread.
Back when I was first diagnosed I was told I should give my tumour a name, maybe of someone I particularly disliked. I didn't like this idea one bit, the thought of some kind of enemy living inside me didn't sit right. I  preferred to ignore it and hope it all just went away. Unfortunately, that's pretty much how I've dealt with my treatment ever since. Now I have to face facts and get back on the radar and that means facing up to what was the enemy within once more.