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Thursday, 25 August 2016

Best Letter Day

Since my pain management appointment I have received a letter from the consultant, it is the best letter I've had from a hospital professional, ever. From the start it's evident that the doctor listened as he has written in detail about me, of when and how my cancer was discovered, my treatment including where I was treated and why. He speaks about the pain I've experienced and how that has been managed so far, the drugs I've been prescribed, the way they made me feel, everything.
The letter then goes on to outline the suggestions he has made for managing the pain from now on. At the appointment he not only detailed the ways in which I could ease the pain but he found examples on the internet. One suggestion was trigger point massage with a ball, another was a TENS machine along with massage and he didn't dismiss acupuncture. For each of his suggestions he showed me examples and even advice on where to purchase - apparently a toy dog ball can be equally as good as a more expensive massage ball.
All of this was in the letter which was nearly 2 pages long, the very first letter of this type that I have had since my diagnosis over 3 years ago. What a difference it makes, how much better you feel knowing that the consultant charged with your care actually 'cares' and cares enough to detail it in writing.
The very worst example of a letter I had was my initial diagnosis letter which I should have received soon after my surgery but actually arrived nearly 2 months later. This contained the nitty gritty, or should have done. It actually read less like a letter and more like a list. What made it worse was that I'd had to have a bone scan in the meantime and to save an explanation of that the consultant simply wrote 'bone scan clear' across the top of the letter he should have sent weeks previously. Not only that, this latest result appeared in the window of the envelope so the postman saw it before me!
So I am now taking the advice given and currently sit wired up to a TENS machine which is becoming oddly addictive. I'm unsure of whether it is actually relieving the pain or just diverting my attention from it but either way it's helping when it's on. The trigger point massage ball helps to a degree although I have to hide it from the dog!
The letter has helped tremendously though in restoring my faith in consultant care.

Friday, 19 August 2016

Pain Management Revelation

A couple of weeks ago I had an appointment with a pain management consultant, something I should probably have had at least 2 years ago. Over that time I have experienced pain in my back around the area of my remaining kidney and underneath my ribs. This has gone largely unexplained and has been evident since my nephrectomy over 3 years ago.
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to  take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)

Friday, 22 July 2016

Time Out

After a 3 week wait I am happy and relieved to say that I was given the all clear by the QE in Birmingham following my latest abdominal ct scan. Relief is an understatement as for the first time in a couple of years I was starting to have my doubts. Generally throughout my cancer ordeal I've remained pretty optimistic but after a series of investigations into ongoing pain I wasn't my usual confident self.
My unease had been heightened after the ct scan itself was paused while the radiographer approached me and asked if I had something on my side? As you can imagine this made me even more nervous about the results - I never found out what that was although I'm told that sometimes they pick up strange images?  More than anything though I've felt as though I've been reliving cancer just by having to attend related appointments, let alone the wait for results.
Since April this year I've had a mammogram and chest ultrasound, a scan of my womb and overies, renal ultrasound, chest xray and a ct scan. There's not much of me that hasn't been caught on a camera of one description or another and in all those images they've not found any evidence of cancer. If that's not cause to celebrate I don't know what is!
I've crossed the 3 year line and only 2 more to go before I get the definitive all clear.

Wednesday, 25 May 2016

Catching Some X Rays

This week I went for my annual chest x-ray which has followed closely on from a renal ultrasound and another scan of my bladder area. Just prior to this in April I was sent for a mammogram on some breast lumps which proved to be cysts after they'd also done an ultrasound of my chest area to be sure.
Before this latest x-ray I answered a few brief questions about my medical history and mentioned I have a CT scan in just over a week. This meant the radiographer had to seek advice on whether the x-ray could take place as they don't want to give me too much radiation. I'm already starting to wonder whether I've got any superpowers (apart from glowing in the dark).
The go ahead was given and another couple of inside out pics were taken of my lungs and chest area ready to be fast tracked to my GP before the CT scan date. Once that is done I don't think there'll be any more places on me (or in me) that haven't had an image taken.
Having spent the weekend before last celebrating my eldest daughter's wedding, I'm seeing more and more photo's of me pop up on social media - note to self  'I need to practice my being caught unaware face...' Thank goodness hospital x-ray departments don't have a Facebook page...I don't think my abdomen would attract many likes! I would also worry the radiographer may mention the state of my fast fading spray tan as once I'd got into the hospital gown I realised it looked like I hadn't washed for the past 10 years. Another note to self, 'spray tans look great on wedding photo's but raise some eyebrows when you're in the nip being scanned!'
So now it's just a trip through the ct tunnel for the scan I should have had over 12 months ago if I hadn't been wrongly discharged by the hospital. This will be the 6th x-ray/scan in 2 months, talk about making up for lost time. In fact only this morning I had another call from the hospital asking me to return for a renal ultrasound but when I mentioned I'm due a CT they said that would be ok.
I suppose I should be grateful for this burst of interest in my chest and abdomen, I mean now I'm really back on the radar and being taken care of. However, there's always the fear that they may spy something unpleasant which makes oblivion more appealing. The other concern I have is the CT scan itself, my first encounter with this machine wasn't good as I'd been rushed in as an emergency in great pain. Even sitting outside the scan room watching the warning lights flash off and on fills me with dread, it's like the all seeing eye.
I'll keep this blog updated as results come in, so far so good.

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.

Tuesday, 22 March 2016

For the Record

Today is the anniversary of my fathers death, he died 36 years ago very suddenly of a heart attack. I remember very little about him as I was only 12 at the time, I never had a 'grown up' conversation with him so don't feel like I know the real him.
There are so many questions I'd ask him, so much I'd like to find out but right now there's a very pressing question I need answering. 'What was wrong with your kidney's?'
The little I do know is that my Dad had problems with his kidneys, he had been hospitalised while still a young man and as he grew older suffered terribly with kidney stones. Family members know a little about his condition but nothing conclusive and so today I approached the NHS records office.
After my 3rd phone call I was put through to someone who said that his medical files would have been destroyed after 25 years, no joy there then. I've no one else left to ask and therefore may never know exactly what kidney issues he had.
My own medical records show that in 1975 and '77 I had procedures to investigate my kidney function by having  pyelography (Google wasn't enjoyable at aged 10). Next to this information is written 'Kidney Disease', no explanation just those 2 words.
All of this I told to my consultant when admitted originally, all of it was dismissed without investigation.
I have another referral coming up, this time it'll be to the QE Hospital, Birmingham, I was hoping I'd be able to share some family history at this appointment. My biggest concern is that if there are any hereditary factors then my two daughters may also share this risk.
Without medical record evidence though I think I've reached a dead end, literally.