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Friday, 14 February 2014

The Best News Ever

Yesterday I had my appointment with the consultant at Burton (after turning up  to the wrong hospital last week...) Finally I would be able to discuss my latest scan results and hear an experts opinion on how my care should proceed.
When I met the consultant she told me that my scan images had finally arrived from Heartlands which has caused the initial hold up with my appointment. I could see the images for myself on the screen, for the first time.
The consultant explained that my case had been discussed at an MDT (Multidisciplinary Team) meeting where it was agreed that the cancer had been completely removed and no other abnormalities seen. She then went on to explain that as the cancer was a low grade - good cancer, if there can be such a thing - this was also good news as that meant there was far less chance of it returning.
Taking all of this into account together with the fact that I was making a good recovery it was therefore decided that I would be able to continue my care with my GP. At 11 months post cancer diagnosis (to the day) I was going to be signed off. This was the most amazing news for me and I couldn't thank her enough.
There were still questions I needed answering, the issue of ongoing back pain being one of them. However, being able to see the images for myself and having things explained to me in detail left me in no doubt that whatever was causing the pain was not cancer. Furthermore it wasn't related to my remaining kidney - one that I intend to look after and keep.
For this reason I agreed that should the back pain persist I could take things up with my GP who has already been excellent and I have total faith in.
I did ask about the scarring and numbness/pain surrounding the area and this as expected is down to probable nerve damage and of course is still healing. This seems to be a common complaint with nephrectomy patients and one which often doesn't appear to leave completely. I can only hope that it improves over time and would rather put up with that than what lay beneath. I mentioned exercising as my tummy is still a bit bloated and the scarring is not pleasant and the consultant said that there's no reason why not as long as I'm careful.
I questioned whether in her opinion the consultant thought the back pain could have been due to surgery or possible lack of aftercare - which if you read from the start of this blog will become clear. This was a question that I didn't expect to be answered and it wasn't as there's no way of knowing, I suppose I'll never know. However, it evident that my consultant at Heartlands had still not forwarded notes which I presume include surgery detail and this is a cause for annoyance.
All I wanted from day one was to know what was happening to me. Not having the facts or being able to find out results simply added to the uncertainty and fear that cancer brought with it. In less than 3 months, since changing hospital trust, I have been given those facts in a clear and concise way and moreover I have been spoken to as a person rather than a patient. This has empowered me rather than leave me feeling helpless. Now, on hearing that less than 12months into my cancer journey I am being discharged I am extremely proud and happy. Most of all I am thankful, I'm one of the lucky ones.
I had a final question for the consultant, this was concerning the possibility of hereditary kidney cancer as discussed in recent studies looking particularly at women with the disease under the age of 45. I have been curious as my Dad had problems with his kidneys but unfortunately died young of a heart attack. As I have 2 daughters though it is a concern I wanted to ask about. The consultant couldn't discuss in detail but said that this was unlikely in my case and that she had a booklet with further information in I could read, I may have already had one...
Believe it or not, I didn't but here I was 11 months on, the day I was being discharged, receiving a booklet about kidney cancer. I also received another hug from my new, soon to be ex consultant. Much as I would have loved to see her again I was very glad this was my final appointment.
This won't be my final post as I do intend to update on how my recovery continues and will look forward to a celebratory 12months post kidney cancer blog on March 13th.
Thank You again to the James Whale Kidney Cancer Fund for the help and support given during my illness. I would urge anyone going through similar or supporting a kidney cancer patient to get in touch.
Thank You X

Thursday, 6 February 2014

Right Time...Wrong Place...

Ok, scrap that last post. today isn't the day. It would have been had I arrived at the right hospital...
The day has gone a little like this;
The letter I received with my appointment information on was from Burton hospitals trust as was the last one where I had to go to the local hospital, the Robert Peel to meet the consultant. The difference with the latest letter was that it had the date and time but not the venue although, the letter head was from Burton. Had I scrolled down to all the info which included car parking I would have noticed the car park was in Burton, not Tamworth! Of course I didn't read this because I intended to walk. Totally my fault, I should have checked.
So, I put on my trainers for the walk to the hospital - nearly 3 miles, and set off. Along the route I decided to take a short cut through Lady Meadow which is, as it sounds, a great big field. The footpath through it looked dry enough until I got to the middle....and sunk! By the time I reached the other side I was splattered in mud and my black trainers were now brown.
I got to the hospital and had to hurriedly nip to the toilet and try cleaning myself up with paper towels - not that they helped much. By the time I got to reception I must've looked like I'd been in a cross country race! When I handed my appointment letter over to the receptionist she went away and on coming back said, unfortunately all your details are in Burton, which is where you should be.
As you can imagine I was both annoyed and embarrassed as I had an audience, who to be honest looked more interested in my 'mud wrestler' outfit. The receptionist was lovely and offered to call them for me but I declined and went out myself to make the call.
The secretary I spoke to was also very understanding and said they would arrange for my appointment to be rescheduled, hopefully next week. Then it was time to walk home.
I have to admit that I also felt quite upset by this time as I'd hyped myself up to getting some answers this morning and maybe an idea of how my back pain can be managed. I think had I not already looked like a complete state I may have cried. However, I put my earphones in and set back off, en route I stopped off at Sainsbury's to get a bit of shopping.
Now I don't know whether it was that I was listening to MIA at the time or because I was upset about the mornings disappointment that I lost my cool... Against my better judgement I decided to use the self check out which as usual had plans to make me look more ridiculous than I already did. After repeatedly telling me it wanted to weigh things that didn't need weighing and then shouting about unexpected items in the baggage area I lost it and told it to F**K Off!
Time to leave. Sigh.
Oh well, I'm getting better at waiting...

Today's the Day

Finally, after weeks of waiting I received the confirmation in writing from my consultant last week which read;
'We have now managed to get hold of your scan from Heartlands. This does not show any evidence of spread or abnormalities'.
How easy was that Heartlands?
At last I have the reassurance and peace of mind I've waited for since last November, it's just a shame that it's taken so long and couldn't have come from the team that should have been looking after me.
The letter also invited me to discuss how to proceed with my care at an appointment this morning where I will meet for a second time with my new consultant at Burton. This time though, she will be in possession of the facts - as will I which means she can take up from where Heartlands left off.
I am still angry and quite upset when I look back on what could have been a far more straightforward and painless experience. It certainly does appear to have been a lack of communication that led to most of the poor care I received from the Heartlands team. However, I still believe that the disease itself, kidney cancer has been neglected as far as care packages go. From the moment I was admitted the uncertainty and neglect were often down to lack of information rather than lack of actual care. Even my diagnosis was a complete farce.
I have a list of questions once again, my last list was made prior to confirmation of my diagnosis while in hospital and queried what would be happening. This list has been put together 10 months post surgery and includes questions about why certain things didn't happen or indeed weren't investigated.
I am 100% sure that the cancer has been removed and there is no spread which is a huge relief and has given me incredible peace of mind. Now I need to establish why I ended up with ongoing back pain and how this can be alleviated. I also intend to ask about diet and exercise which was completely dismissed by my previous consultant. I am no longer leaving my health and well being up to chance and if I can't ask an expert what chance do I have?
So, I will check back in when I will hopefully have the answers to at least some of my questions. I don't expect the consultant to be in possession of all the answers and I do understand that most cancers are unpredictable, if they knew the reasons why then there would be a better chance of a cure.
My first meeting with my new consultant was extremely positive and I am very pleased to have changed to her care so I am anticipating a productive and informative meeting.