It's Like This

I haven't written in this blog for sometime, partly as there has been little to share and also because I haven't wanted to share it.
A little before my 12 month anniversary I saw my new consultant and agreed to being signed off to my GP's care - my decision. The reasons I had were down to the initial bad experience I'd had after surgery and my want to be free of hospital care. This may have been premature.
When people ask about my post cancer care they are always amazed that I don't have a consultant or planned hospital visits. For my part this is a proud boast as I haven't wanted the 'experience' to drag on and needed to feel completely free of cancer and all it's association.
However, since surgery I have suffered back pain which I pointed out only 6 weeks post surgery to the consultant surgeon who completely dismissed it. He did arrange a bone scan which was thankfully clear but his disregard for my condition was such that he said 'it has nothing to do with the surgery'.
Before I discovered I had cancer I was not unwell and had no symptoms and No back pain.
My GP having taken on my care after the 12 month sign off has been excellent and has done everything possible to help me cope with the pain. This has meant a steady increased dose of Gabapentin and more recently the addition of Tramadol.
As the pain has increased now and spread to my side and under my ribs, my GP has arranged both Xrays and scans. I am awaiting an appointment currently for an MRI and will also shortly be attending a clinic at the Royal Orthopedic Hospital.
None of the above are things I had anticipated. Although my initial care plan, post surgery had been to undergo 6 monthly CT scans for 2 years and thereafter 12 monthly scans for 5 years. The consultant had also said I would be attending his urology clinic for 'as long as there was an NHS'. I had celebrated in the fact I'd opted out of this system and would just go to my GP 'as and when' needed. After all, the surgeon took the cancer out with my kidney - it's gone.
Having to undergo more scans means the possible discovery of more problems - not something I want to think about. Not something I find easy to write, or talk about either.
So there it is. Not the scenario I had hoped for although I suppose, logically being only 18 months post cancer it's to be expected. Tests, clinics, doubts and even tablets are normal.
I don't want to be normal.

Race For Life - Sutton Park 7th June 2014

The Race For Life events are run all over the country with over 300 events and my daughter Rosie took part for the 3rd time this year. The events are run by Cancer Research UK and all money raised goes to the charity to help the fight against cancer.
In the words of Cancer Research UK, 'Every pound you raise in sponsorship helps more people survive and will bring forward the day when all cancers are cured.'

Thank you so much to everyone that sponsored Rosie, she raised £135 and yes, I am one very proud Mommy.
You can support Cancer Research UK in many ways, just follow the link and help in the fight against cancer http://www.cancerresearchuk.org/support-us

My Cancer Shadow

I’ve been putting a distance between me and my cancer lately. By this I mean that I have attempted to restore the person I was before cancer and dismiss the tag that accompanies me wherever I go, like a shadow. This has been harder to do than I anticipated as people naturally ask ‘how are you’. I will say ‘fine thank you’ after which there is often a pause before the next question comes which is usually something like ‘so you’re...all ok now?’ or ‘are you feeling better you know after...?’

I am not good at elaborating about my illness in person which is probably why I wrote this blog. Don’t get me wrong, it isn’t that I don’t agree with talking about cancer or promoting well being associated with the disease, I just can’t do it well myself. I’ve almost started to dismiss it and will often answer those awkward ‘follow up questions’ with, ‘they took it out so it’s hopefully all gone, job done’, or something like that.

Recently I won a competition to see Prince – my idol of many years, by entering a competition on twitter by a local paper. I was shocked to get a call saying I’d won and could I answer a few questions for an interview which I was glad to. We spoke about my first single, concerts I’d been to, etc and then the question came, ‘You’ve had some health problems recently, I’ve seen your blog...?’ The conversation went on and I did say I think awareness should be raised but hadn’t anticipated the header my ‘win’ would get

En route to Prince with my friend I noticed a link on twitter so clicked to read...’Cancer Survivor Wins Tickets to See Pop Idol Prince’, I couldn’t catch my breath. My friend who was driving was also shocked...Cancer Survivor!!! Now some people may shrug and say, ‘well you are’, it was written on my twitter header BUT this was supposed to be about me being a Prince fan. I was really cross. I had been a Prince fan since 1982, a lot longer than I’d had cancer, I really can’t explain how this made me feel other than I was literally cringing with a kind of shame.

Now to the newspaper in question and the journalist who wrote the article I appoint no blame, I fully understand why this header was given. I did speak about my cancer and didn’t say don’t tell anyone – I have, in a public blog. It’s just that when I saw it there in black and white whilst I was dressed up and ready to party I suddenly felt like a cancer victim again, the shadow was back.

What I am going to say next may be controversial but it’s how I feel. Cancer Sells. It sells newspapers, clothes, tickets to events, art, music, etc, etc. You stick the cancer or charity tag on what you need to sell and bingo, publicity and depending on what you’re giving, you sell your goods that may not have got the marketing boost that cancer can attract. It grabs attention because we’ve all been affected by it in some way. At the end of the day I suppose if charities receive much needed funds it doesn’t matter how the money comes in or how the publicity is raised.

It’s just that maybe, just maybe it should be more about the charity than the individual, business or product. In the same way that heart disease is displayed on cigarette packets, cancer is not nice. It’s drips and drains, canulars and catheters and some of us can’t shake this association and therefore put the disease and the charity before the associated ‘product’ whatever that be. Dedicated charities both local and national need our help and the best way to do this is by giving, whether time, money, care, publicity or goods but most importantly not for profit, or maybe I’m too idealistic?

I suppose I don’t like being reminded of cancer when I’m paying for cards in a shop or by invitations to celebrity events that I surely must support as I’ve had cancer. Not really, I’d sooner support the charities that need the help most, in my own way and my own time thank you.

This is my opinion and I know it’s not shared by many others. It’s just that I am more than a cancer survivor and I have been through other tough times apart from kidney cancer. However I have learnt a difficult lesson, this disease is going to stay with me for good. No matter how hard I try to ignore it, dismiss it, shake off the shadow it’s there sticking like glue. They may have removed the tumor but the cancer remains, it’s stamped me and marked me out. That is how I feel right now. This may change.

I will continue to write my blog and update my progress. I see my dismissal of cancer as positivity in my own way, it’s gone and it won’t come back, as I keep telling myself, job done. 

Kidney Cancer 12 month on - Painful Memories

When I woke up on Wednesday 13th March 2013 I wasn't aware my life was about to change imeasureably. I recall vividly sitting up in bed and saying to my husband, 'I don't think I'm very well' and then shortly afterwards collapsing in the most terrific pain I'd ever felt. I remember trying to drag myself across the kitchen floor, calling to my husband who came running down to find me there.
Looking back there are moments that even make me smile, the two dogs tapping me with their paws as if I was playing some kind of game rolling about on the floor. Then of course the dilemma that struck me when I realised I had to go to hospital and didn't want to leave the house in my pyjamas. My poor husband having to try and prise me into a pair of Gwen Stefani designer trousers that I wanted to wear (I have now invested in joggers!)
What strikes me most about that day was that despite the signs, regardless of how serious things were playing out, I refused to believe there was anything really badly wrong. I insisted that I go alone in the ambulance to Good Hope and even gave my husband my bag, phone, purse etc saying he could pick me up later there. When the pain increased and they pulled over to shoot me up with morphine I don't recall feeling scared only a bit embarrassed because I was crying. After the ct scan when I was taken to the assessment wing I can still hear the nurses whispering 'no-ones told her yet' and I don't think the reality had even begun to sink in. This was serious. I only began to worry when they told me I was being rushed into Heartlands because I'd told my husband to meet me at Good Hope. It was more inconvenient than scary.
My cancer journey is played out in this blog, this recollection in it's entirety is here - although some parts have been tamed down and other bits left out in case I ever had to go back to Heartlands...
I have been secretly dreading tomorrow, privately trying to ignore the emotions that day 12 months ago has stirred up but it's almost here and those feelings are raw.
Outwardly, when asked 'How are you', I will say I'm doing well and that the cancers out so all good and I'm getting on with life. I do believe this and I know it's gone - the scars are there to prove it. I don't dwell, I'm not prone to worrying and imagining the cancer has spread. Even if it had or if it hasn't finished with me I'm not tapping my fingers, sitting waiting for it to happen. What will be will be.
However, my cancer has left it's mark and not just the scars across my stomach. I have back pain which is conversely on the side where my good kidney remains. This pain has been pretty much constant since surgery and shows no sign of abating. When discussed at my post surgery appointment the consultant said it had nothing to do with his surgery - even though it wasn't there before.
Now I can even deal with this, I don't discuss the pain openly and try to dismiss it where I can but there are times when I feel it's there to taunt me. It's like this constant reminder, a prodding finger saying remember when you had cancer.
Looking back 12 months ago I was (I thought) fit and healthy, I didn't know my doctors name and rarely took medication for anything. Now I feel like a contradiction where on the one hand I'm proclaiming how lucky I am and fortunate that my cancer arrived with a bang and was taken out swiftly. On the other hand I am left with a painful reminder that I'm scared won't leave me and that I'm afraid to talk about.
When I look around me now I see people differently. You really don't know what the person in the queue next to you is going through, when you look around there are people everywhere going through untold difficulties. We don't wear teeshirts with slogans warning others, 'recently bereaved', 'receiving chemo', 'just made redundant'. There were times when I was recovering from surgery when I wanted to shout out 'They've just taken my kidney out!' but this would have been met with some rather strange looks and I dare say been a wee bit scary haha.
Tomorrow I just want to let go, put behind me what happened a year ago and mark the day with some fun and laughter and make new memories. Maybe though it's time to also face some home truths, things may never be quite the same again and that painful memory, cancer can't simply be erased. Being here to tell the tale, however painful is living proof that there is life after cancer.
My slogan teeshirt company will shortly feature on Dragon's Den ;-)

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

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.