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Wednesday, 12 November 2014

The Story So Far

The longer I leave between these blog posts, the harder it is to write and the more I forget where I left off. It's important therefore that I remind myself of how far I've come.
It's now almost 20 months since my 'Rude Awakening' when I collapsed suddenly with kidney cancer without warning and with no prior symptoms. Before that time I was in the process of building my business Missfit Creations which had only 2 weeks previously been featured in a local business editorial for the Tamworth Herald 
When I look back over the weeks immediately following my cancer shock I recall the need for complete privacy. I went from a daily social network presence to a complete online blackout, I simply disappeared along with Missfit Creations.
I wasn't ashamed of my cancer I just didn't want to explain it and couldn't bear the sympathy. In order to cope with what was happening I had to shut out everything and everybody but those closest to me plus a few unavoidable 'need to know' people.
My return from self imposed oblivion to the social network was actually more to do with my business than my personal life. I was afraid that people would think my company had gone bust and that I had failed rather than actually be concerned about my welfare. The response to my subsequent post explaining the kidney cancer shocker was incredible with so many lovely comments and messages I was completely overwhelmed.
Once on the road to recovery I began to get out and about again and started to write this blog as I'd kept notes from day 1. One of the places I visited was the Sharon Fox Cancer Centre which became another milestone in my journey as the reality of what had happened suddenly hit me.
I made several attempts to get back to work, having a home based business at least meant I didn't have far to go - or so you'd think. In fact my business became for me a catalyst of my kidney cancer, I felt it carried some of the blame for what had happened. I'd shoved everything and anything to do with Missfit Creations into my workshop when I became ill and now as I took things back out the memories came too.
Thankfully along this journey I found the James Whale Fund for Kidney Cancer as the team there gave invaluable support and advice. Not only that, it was an introduction to others who were going through the same and whose own experiences reassured me that my fears were normal. I was able to face up to the reality of kidney cancer more easily in the knowledge that I wasn't alone.
My recovery has also been hindered by ongoing back pain since surgery which has, thanks to my wonderful GP been investigated thoroughly. I am currently waiting to have physiotherapy and acupuncture to hopefully alleviate this, the cause of which is still uncertain other than it's NOT cancer which is all that matters.
I suppose one of the most important things I've learnt since having kidney cancer is patience. I thought that if I blocked everything and everybody out, I could decide when I'd be back to normal Wrong, that was quite a waiting game. Things won't ever be the same as, apart from the fact I have only one kidney, I've been given a second chance and that's a precious gift so I won't try to hurry my life along again.
Since having my cancer removed I've cut a few things out myself including alcohol, salt and those 'elements' of my business that were dragging me down. I've learnt that I don't need to surround myself with people whether in person or online, it's ok to take time out.
While waiting for diagnosis and treatment for my back pain I have begun exercising again, I regularly cycle and have recently begun running. The latter I've kept quiet for a while as I needed to be sure it was right for me, now I can run a mile in under 10 minutes regularly I reckon I'll keep it up.
I'd like to summarise by saying that it's business as usual but it isn't. My Rude Awakening happened for a reason but I'll never know what that was. Thanks to my cancer oblivion I have a healthier lifestyle and new business opportunities so I can close the kidney cancer chapter and start anew.

Wednesday, 17 September 2014

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.

Wednesday, 11 June 2014

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

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. 

Wednesday, 12 March 2014

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 ;-)

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.

Wednesday, 29 January 2014


I have thought long and hard about writing this post - blame is not a pleasant verb when used to point the finger. However, my finger is poised...
How many times I have asked myself the question 'why me?', along with so many other hundreds/thousands/millions of cancer sufferers and survivors. Was it something I ate, my lifestyle, did I worry to much, work to hard or drink too much? So many questions.
More specifically and the recurring question for me is 'why kidney cancer?' It still puzzles me given the statistics and general reasons for this disease, foremost being smoking, drinking and obesity, oh and the fact it is most common in men.
When I speak about blame I'm not only looking inward at the ways I may have been able to prevent this cancer myself but also at factors out of my control. If I hadn't taken on a certain job and met certain people which certainly led to more stress and financial uncertainty...but then with cancer, there are no certainties.
In the cancer lottery why was I picked and moreover why did I end up on the kidney cancer team? If I liken it to school sports lessons it's like being one of the last ones chosen or in a raffle missing out on the wine and chocolates and getting the Yardley bath soap.
Don't get me wrong here, I haven't got a cancer preference...My Mom has gone through breast cancer, my Uncle prostrate cancer, an aunt died of kidney cancer and another Uncle lost his battle against bone cancer. If I had a choice I'd decline the invitation to join any of the cancer teams, it's just that team kidney didn't have as much of a following. For this reason the aftercare, information and general knowledge available with diagnosis wasn't good.
Going back to that point of diagnosis, the bit where I was eating my rice crispies in a hospital bed and the doctor on ward round mentioned the tumor I needed removing...I blame him for not bothering to find out I hadn't been told I had cancer. I could go on with my pointy finger and aim the blame at lots of things like this but as in this doctors case, he didn't intentionally upset me. He hadn't decided to break the news that I had cancer in a 'Surprise Surprise' manner, it just happened, he was sorry. But, I can't get rid of the blame.
I needed to know more but didn't want to have to google it.
My need to be better informed was only heightened when other people echoed the questions I needed answers to, when I discovered I wasn't the only one who needed to know more. My lack of knowledge about the illness I had shocked family and friends who presumed that I would be in possession of all the facts after a stay in hospital. The sum total of my understanding of kidney cancer was that the tumor was in my kidney and both would be removed, job done.
Maybe it's the same for those unfortunate enough to be picked for the other teams like breast cancer, maybe the questions never end. My Mom has never truly believed the cancer has gone and still worries it will return. The only difference is that she goes to dedicated group support and her appointments are in a breast care centre, oh and she has an array of pens, bags, keyrings etc she's collected for her cancer.
Kidney cancer seems to be the unfashionable cancer and it picked me. I need to stop allocating blame but to help do this, I need answers. Likewise, I would like to think that other people being diagnosed at this time haven't had to face the same wall of uncertainty that I did. Part of the reason for this blog was to try and put down my experience in an honest account that wouldn't frighten someone facing kidney cancer. After all, I am a survivor.
However, maybe now it's time to start getting those answers and to let go of the blame and do something to help with support for kidney cancer patients. After all, it's rude to point.

10 Months post Nephrectomy

I had an appointment with my GP today following an ultrasound scan a couple of weeks ago.
Aside from the fact I have been writing this blog for the past 10 months, I do still find it difficult to talk about my kidney cancer openly, more so I don't like discussing detail. Therefore I am not going to fill you in on the why's and wherefore's of my latest investigations other than to say it was a bit more than I bargained for and involved something that resembled the microphone Terry Wogan used in Blankety Blank! Thankfully there was nothing unusual to report from this ultrasound and I will not be filling in any blanks as to where and why.
I  discussed the continuing back pain with my GP and have been prescribed Gabapentin and although my doctor explained very well what these would do I'm afraid I can't relay this information exactly as I'd probably get it wrong. It is something to do with the nerves transmitting pain I think...either way I'll give them a go albeit reluctantly as I'm not a fan of tablets of any kind.
So, 10 months post surgery and how do I feel? If you ask me this generally I will say fine just have some continuing back pain that's being investigated. If I answer honestly I can tell you it's starting to get me down.
My left side where the scar is still feels mostly numb and tingly to touch, the doctor said that nerve damage due to surgery means this may not get much better but that this was unavoidable which I understand. Beneath the scarring it is still tender, this I found out when the doctor examined me. I generally don't touch it if I can help it and definitely don't apply pressure as it's still uncomfortable if I wear tighter clothing. Also, I still can't lie on that side.
On my right side I have this uncomfortable back pain in my kidney area (hence initial worries...) It is worse when I am sitting/kneeling/bending and varies from mild ache to quite painful throbbing. More recently I have developed a pain just underneath my right rib, again worse when sitting/bending and this is almost constant but not major it's more uncomfortable. Occasionally though it becomes a sharp shooting pain.
This right sided pain could very possibly be unconnected to the kidney cancer, it's only because it's developed since surgery that the two are compared.
The day after my surgery I was told I had to get out of bed and walk - I did. This was possibly one of the most painful and frightening memories I have of hospital as I felt I had to do as I was told but the pain was unbearable. Following this the cathater was removed and I therefore had to walk to the bathroom - again incredibly painful. I have vivid memories of trying to walk following surgery and every time was a painful experience, this went on for some weeks.
Now it does seem logical to presume that in order to compensate for the pain on my left side I put more weight on my right? I think I even wrote in this blog that I had a lopsided gait for a while. Maybe this is the root cause of the back pain I now have, either way I just want it to go - without drugs.
I am doing the McKenzie exercises still and added yoga to this. I walk at least 2 miles a day or more and am generally very active which is good. I just can't sit still!
Next week I see my new consultant who presumably now has all my information transferred from Heartlands and so will be better informed in which case, so will I.
Till next time.

Friday, 10 January 2014

Cancer & Fashion

Ok, so two words that don't go together are Cancer and Fashion right?
Why not? I try to avoid statistics so without giving percentages, there's a hell of a lot of us affected by this disease one way or another. Not only does it f**k up your health, it can play havoc with your wardrobe.
I'm really not being flippant here. You ask someone who's had the trauma of mastectomy about bra shopping or a person who's undergone abdominal surgery about waistbands. This is without even going down the chemo route and how hair loss affects your confidence in how you look.
From the hospital bed to the supermarket aisle, no matter where we are - how you look will undoubtedly affect how you feel.
I am embarking on a project to work with the Sharon Fox Cancer Centre to develop clothing and accessories that are made for cancer patients with a fashion conscience. Just because you receive that dreaded diagnosis does not mean you have to abandon your dress sense and forget about your individuality.
There are many wonderful products available that are designed specifically with cancer patients in mind, the difference I would like to add is individuality.
To start this off we are planning to run some headscarf workshops to show some simple ways to make and accessorise headware. With the focus on individuality it'll be a chance to experiment with a range of fabrics so we can design for everything from punks to princesses. As well as the scarves we will be looking at ways to disguise those awful drips an drains for those of us that have had to endure one or the other during hospital treatment. I personally had an 'irrigation system' which I preferred to call my 'Juicy Couture'.
The workshops will be a chance to meet, chat and make and will hopefully provide a chance to sit and relax while making something that can benefit either the maker or the centre. At the same time it can be a useful source of information and ideas of how we as a group can put cancer firmly on the fashion map. Lets not allow cancer to dictate how we look, we really can 'make' a difference.

All Change

First of all, Happy New Year to those of you who have read my blog since last year - I hope and pray for a healthy, happy and positive year for us all.
My friend Lisanne Vos who writes RUKidneyingMe Blog and is herself a recent kidney cancer patient and who has been a huge inspiration, asked me what my word for 2014 will be. Lisanne has chosen 'Magnificent' and so was a hard act to follow...I kept coming back to the same word, 'Positivity' and so have stuck with this. So here's to that + sign!
As far as my treatment goes, I have now successfully changed hospital trusts thanks to the help and advice from my GP. My first appointment with new consultant was just before Christmas and was a pleasant experience which is a first, previous encounters have not been as good. The consultant couldn't examine me as she had no record of my treatment as none of the notes had been transferred from Heartlands and she therefore had no history of my case. As introductions go though it was very nice, I even got 2 hugs off her.
She explained that she would attend a meeting with other specialists on 9th January where - providing my notes had been received, they would discuss my case and possible treatment. I wait to hear for news of this now.
The back pain has continued and although I'd like to say there's some improvement I'm afraid it's pretty much the same, the pain has also moved up to just underneath my ribs at the front. I find sitting down uncomfortable for any lengthy period and need to move around frequently to relieve the pain. I am trying not to rely on painkillers and so rarely take them, only usually at night time if the pain interrupts my sleep. It's a mystery still which is why I'm keen to know what the new consultant makes of this. One thing I know for sure, I had no back pain prior to my surgery, it has started since.
I have an ultrasound scan booked later this month but don't want another ct scan just yet, I've had 3 now in 10 months plus a bone scan so no more radioactivity for me thank you.
To try and alleviate the pain I have tried McKenzie back exercises as advised by my GP and more recently pilates and yoga. I am persevering with the yoga though only at home, the class I attended with a friend just resulted in us giggling the whole time!
I have continued to draw a lot of positivity from friends and family and from other people I've met through this blog since my diagnosis. It still amazes me how truly inspiring some people are and as such I do plan to give back something of this positive vibe through my work. More on that in my next post...
Here and now I am still thankful to be rid of my cancer and fit and able enough to get up and out and about so no excuses - time to get back to work and make a difference.

Wednesday, 1 January 2014

2013 When Time Stood Still

At this time of year I hear so many people comment on how quickly time has flown. For me it paused in March and from then on life continued as if in a dream where time is of no relevance. People came in and out of my life, things started and stopped, days came and went but life itself was on pause. I had cancer.
Fortunately this experience started suddenly with no time to prepare, no appointments to make or results to wait for. My cancer - although having been inside me for a while, decided to introduce itself on March 13th with a grand gesture by hemorraghing. My subsequent ambulance rides, scans and hospital admission were super swift and there it was, kidney cancer.
Once in hospital I was embolised (scroll back - it's all in the blog) and thereafter had a nephrectomy (yes my medical vocabulary has grown) to remove the tumor in my left kidney.
It was the days, weeks and months that followed that stood me still. 
As many cancer patients will know, you don't often know you have cancer until it's discovered and you need surgery to remove it. There's not usually an introduction, it's not phased in so you can get used to the idea, once you know it's there you really don't want it to hang around and get familiar.
In my case the tumor was encapsulated inside my kidney and so thankfully hadn't started to have a look around any other organs and move in. Once it was removed I was on the 'watch and wait' (to which can be added 'hope and pray') that no cells have made the move elsewhere. This was when time began the stop starty thing.
Once back home and recovering I was unable to do most of the day to day things I was used to; walking the dogs, cleaning the house, shopping and of course work. You would imagine that time would drag with so much of the day spent resting and recuperating but it didn't. During this period of rest I felt almost removed from my former life in such a way that I could look at it from a distance and decide which parts I missed and what I could do without. Rather like New Years Eve when you can reflect and make resolutions, I spent time putting my life in order. Believe me there's nothing like a tumor inside a major organ to stop you in your tracks and shake some sense into you (not that I'd recommend it...)
Fast forward 9 months to this New Year 2014 and I have woken up more hopeful and less anxious about what the coming months will hold than I have for several years. It's as if cancer has given me a right of passage, I can say 'Ok, do your worst, I've survived cancer'. I feel I have made a transition from uncertainty and hesitance to confidence and acceptance.
I start 2014 minus a vital organ and less the tumor it housed but with the knowledge that I am a survivor and as such I'm here for a reason.
Time to press Play