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Tuesday, 3 December 2013

The Chemo Question

When I was first diagnosed with kidney cancer I had to write down a list of Q&As for the doctor as I hadn't a clue what to expect. One of my queries was about chemo and radiotherapy, as I'd supported my Mom through breast cancer I was well aware of what both entailed.
I was told early on that if the cancer was confined to the kidney (which it was) I wouldn't need additional treatment and that even should any rogue cells have travelled, kidney cancer doesn't respond well to chemo.
Following surgery and on my return home I was laid up for a short while but eventually started to get up and about and then go out. One of my first 'trips' on my own was to the chip shop up the road - I'm easily pleased. I had insisted I'd be fine to go alone and when I got there the shop staff were asking where I'd been (yes I like a chippy tea now and again...)
When they'd established that I'd not been away working or doing anything fashionably exciting I managed to whisper that I'd been ill.
'What with?'
Again discretely, 'cancer'.
'Oh a My a Gooooood' - this for the benefit of the large queue, 'What kind?'
I tried to lean across and quietly say 'kidney cancer'
'Kidney!!!? Did they take it out?'
By this stage anyone in the queue ordering a steak and kidney pie was looking at their options...
The conversation continued along these lines until I was being served at which point the young girl dishing up mouthed to me
'It looks good'
Oh no...
Again she nodded at me and said, 'it is a wig?'
Now my turn to speak up, 'It's my own hair, I haven't had chemo'
This was the first of similarly amusing encounters I had when having to raise the subject of having had cancer. It was generally presumed that I must have had chemotherapy which I suppose is a presumption I might have had. Now after meeting other cancer survivors who've undergone surgery to remove an organ complete I understand it's not unusual.
When I used to take my Mom for chemo I had multi coloured dreadlocks and so many times when sat waiting in the chemo suite people we spoke to presumed I was the cancer patient and that my mad hair was false. I hadn't expected my normal hair to raise the same speculation.
Time for a new 'do'
: )

Tuesday, 26 November 2013

Pause to Say Thank You

You know that pivotal moment, the one that stands you still and stops you in your tracks so that you hesitate long enough to look back?
That was kidney cancer for me.
Despite all the pain, discomfort and worry. Putting to one side the drips, drains, catheters and of course the surgery. Not forgetting (how could I) my hospital stays and the seemingly endless wait for information and of course results. I have a lot to be thankful for.
I didn't know I was ill, I had no pain or discomfort to speak of - or at least I didn't recognise it. The day my kidney tumor introduced itself though painful was to say the least, quick! Not knowing what I faced at that time meant I didn't have much time to worry. In fact, the first moment I remember thinking I was in trouble was when my ambulance had to pull over and give me morphine, even then the pain took over the fear.
The nature of my tumor meant that I would have no chemotherapy or radiotherapy and the fact it was removed along with my kidney intact meant that no further drug treatment would be needed. Just the watch and wait.
Even today, eight months on there are people I know, neighbours and some friends who are unaware I've even had cancer. This partly down to my initial reluctance to tell people and also that I've been able to get up and out and carry on as normal without making too much fuss.
As I said, a lot to be thankful for.
The issues I still face are ones I deal with privately and have written about on this blog which has helped me come to terms with a lot of what has happened. By sharing this it has helped to know that others going through similar or the same may have been helped. This is not something I share or discuss openly and is only publicised here and via twitter.
So Thank You.
Of course thanks go to my family who, as far as I am aware have never read this blog, nor would most know of it - they don't need to, they lived through it with me Thank You.
Friends who have send messages of support, called, sent cards, bought flowers and just been there from the shock discovery through to the treatment. Thank You.
Then there are those friends who have stayed. Now that the big cancer song and dance has died down, normality is settling in and you are still here. The messages, calls (and cakes) still come. Without asking you know when I need you. Without saying, you know who you are. Thank You.
For the many messsages, tweets and emails of support and thanks for my blog. To those of you still battiling with and continuing to fight cancer and those like me who are praying they have seen the back of it, Thank You.
To the James Whale Kidney Cancer Fund I owe thanks for listening to me when I had questions that had no answers. For supporting this blog via twitter and enabling others with kidney cancer to both read and get in touch. Because of this communication I have been introduced to some of the most inspirational people and especially those who I can relate to and empathise with. This has meant our kidney cancer journeys have not been made alone which in turn has meant they have been made that bit easier. Your support helpline and the website are both informative and insightful, giving readers the chance to see not only what kidney cancer involves but what it means to individuals. Thank You.
A big Thank You goes to The Sharon Fox Cancer Centre How can I put into words what visiting your centre has done for me. The blog post I wrote at the time was one of the hardest because it made me cry. I hadn't anticipated the overwhelming emotions that would engulf me by simply walking in the door of your centre. That realisation that I had cancer was one I will never forget and one that I hadn't understood fully until I walked in the door. Meeting the incredibly brave people that work with you and rely upon your charity simply took my breath away. Thank You.
The people I owe a huge debt of gratitude for are the medical team, doctors, nurses, health care assistants, paramedics and hospital staff. I have written my kidney cancer journey from personal experience, some good, some bad, some could be better but it could have been a whole lot worse. I am truly thankful for the intervention of those who diagnosed and removed my cancer. A special thanks goes to my GP and local medical centre who's staff have been incredibly supportive and still are. Thank You.
I never gave my cancer a name as some advised, I get the whole think of someone you don't like and name your tumor after them but it didn't work for me. It didn't actually feel real until it was out and now I feel as though I didn't know enough about it, weird but true.
However, I have blamed my tumor on all those things I should never have done, the one drink too many, the one job too much and the times I should just have said No.
Now I can say Thank You for the opportunities still left to take and the choices yet to make but, having been stood still - I will think twice before I say yes.
Thank You

Thursday, 21 November 2013

Dear Consultant

Dear Consultant,
Following my CT scan a couple of weeks ago I had started to worry about the results. Continuing back pain since surgery and as yet unexplained bleeding has obviously heightened this irrational fear that maybe the cancer had travelled.
As 2 weeks had passed and no news I decided I would call your office and ask why the hold up. I am in contact with 3 other kidney cancer patients in other areas who had scans within a week of my own, all of whom received results within a week of their scan and so I didn't think my asking would be a problem.
I phoned your secretary and explained I'd had a 2 week wait for results and was immediately put on hold while she completed something 'important'. On her return to the phone she looked up my details and told me, 'your results are clear'. To be honest I hadn't expected your secretary to be in a position to give out this information and had obviously been anticipating a letter from you.
An all clear is obviously wonderful news and I was hugely relieved and thankful.
However, this was not acceptable on any level and only added to the catalogue of poor communication and dismissive behaviour I have received from you and your department.
When I went on to ask the secretary what my appointment date was she replied that there wasn't one 'on the system'. She went on to ask me did I want to make one?! Now forgive me if I'm wrong but, I did have cancer, I was supposed to have a 6 monthly check up following my ct scan. Ok, this was already 2 months overdue but even so it would have been reassuring to know I was at least on your system for a recall.
I should not have to request my own appointment should I?
I have received one letter from your office following my kidney cancer and this was dated 6th June, my surgery was March and I'd seen you in May for post op appointment. At this appointment I described the back pain and bleeding, both of which you said had nothing to do with your surgery. You booked me in to have a bone scan as a precaution. Also detailed in this - my only letter was the Histology 'showing a pT1bG2 renal cell carcinoma' and that I would have a ct scan in November with a review in December.
I had asked more detail about my tumor at our post op appointment as obviously being an emergency operation there hadn't been a biopsy beforehand. In fact all I'd been told by one of your doctors was the initial scan showed a 'dirty big tumor' in my left kidney. Another doctor had estimated this at around 7cm diameter. Forgive me if I don't know their names - they didn't introduce themselves.
Your answers to the questions my husband and I put at our meeting with you post surgery were vague to say the least. We had already waited over 3 hours and had then been directed to one of your doctors for this appointment, one I'd waited for since March to discover the answers to my questions. We asked to see you which did not please your doctor at the time and were put back in the queue. Again, I don't think it unreasonable to ask to see the person who performed my surgery and knows what he found?
Questions about how long the tumor may have been inside me met with the answer, 'how far can a horse run'. On causes and/or possible explanations for the cancer, 'take yourself to the children's hospital and ask yourself why they have cancer'. As far as how big, what kind etc., the only information is that which I can't understand as it's in medical abbreviation.
Is it so bad to want to know what you cut out, to need to find out if it could have been prevented or if there are ways I can improve my diet and lifestyle? My Aunt died of kidney cancer and my father had kidney problems, should I not worry that there may be a hereditory factor. I have continuing pain and bleeding that wasn't present before my surgery, is this so easily dismissed?
When I received my letter dated 6th June from you it arrived in a window envelope. Next to my name and address was written in biro, 'bone scan ok'. The postman knew those results before me! Not only had you not bothered to write a separate letter, you had scrawled it at the bottom of an already late communication that was actually written to my doctor.
I want nothing more than to put this whole experience behind me and to feel free of cancer and it's hold on the last 8 months of my life. If you can't understand my need to have answers to questions or even results of scans then I cannot feel trust in your ability to continue as my consultant. Your secretary, after apologising for my upset said herself, 'you must feel quite abandoned? That is an understatement.
I began writing my experience of kidney cancer down whilst in hospital as the pain and distress I was enduring meant that I couldn't keep track of all that was going on. I wrote down everything I knew and all that happened. It wasn't until several weeks after surgery that I began writing this down in blog form. Partly to help me make sense of the experience and also in the hopes it may help others going through similar.
I had struggled to find information on kidney cancer, in particular that from patients themselves and with little or no answers to questions, had looked to other sources for help. My blog, I hoped could maybe give someone going through this ordeal an insight into how it feels.
However, I have left quite a bit out of my diary and toned some of it down as it is both personal and a bit too graphic for me to relate. What I didn't want was to show the experience as something frightening and and bewildering. Well it was.
This could have been helped by the most simple thing of all, information and the way it is given.
I'm sorry to say that once again you have failed to communicate information and have left me feeling as though my kidney cancer was insignificant. I don't want to feel this way any more and therefore will be seeking alternative care.
I am fortunate to have an excellent GP who has ensured all that can be done to help me is carried out. Most importantly he has listened to me and not once dismissed my fears, he has answered questions where he can and given help and advice where needed.
Please God I will never have to return to hospital but one thing is for sure, I have no intention of visiting Heartlands again.

In case you do need reminding of who I am I you can read my blog here An Unfashionable Cancer
You may need to start at the beginning because you missed my arrival as you were away, my diagnosis in particular can be found here The C Word
I think that Day 6 - Questions Answered it's Kidney Cancer  was probably the day when the penny dropped though as the 'dirty big tumor' description really hit home.
Having had 3,800 views I am presuming this diary of my kidney cancer experience may have gone some way to enlighten and hopefully help others going through similar. The messages and emails I've received certainly echo this and so I will continue to write.
I hope you have time to read.

Wednesday, 20 November 2013

All Clear 8 Months On

So, yesterday was 2 weeks since my 6 month (which was actually 8) Ct Scan as advised by the consultant surgeon. As I'd not heard anything and was losing sleep I decided the time was right to call.
At this point I won't go into details of the conversation I had with his secretary, that is for my next blog post...
The fact is, I had to ask the secretary if there was any news and she told me the results were clear.
I had wanted to feel happy and elated but the manner with which I'd had to ask for and the way my result was delivered made me sad and annoyed. There is more and this I will write in my next post.
Today I go to see my GP for advice. Enough is enough, time to move on.
For today I am just so pleased the cancer hasn't travelled. thank God.

Monday, 18 November 2013

Patience Patient

Still waiting for CT scan results.
Still waiting for consultants appointment.
Still waiting for explanations.
Still waiting for the phone to ring, the post to arrive....
Still crossing fingers, saying prayers and counting on the tried and tested saying, 'No news is good news'

Wednesday, 6 November 2013

6 Month Follow Up CT Scan for Kidney Cancer

So here's how the first post op CT Scan went;
My appointment was at 4.30pm at Good Hope hospital, Sutton Coldfield. We arrived in plenty of time which was good as the barrier to the main car park wasn't working and the queues were getting bigger. Some nifty driving by my daughter through the queuing cars and via hospital buildings and we managed to park in the old car park away from the main hospital. (When is that multi storey car park coming....?)
A brisk walk from the car and then through both new and old parts of Good Hope brought us to the XRay Department where I checked in and was directed along another corridor to the CT Scan waiting room. There was no one there to check in with so we took seats with others waiting, some already in gowns and with jugs of water - the form sent with appointment details advised we are required to drink a litre of water beforehand.
Another couple of people came after me, still no one at the desk and in the meantime there was a queue of emergency patients building up on stretchers and in wheelchairs. Eventually a nurse came to the waiting room and booked one of the later patients in - my cue to jump up also. When I explained I'd not checked in, he then explained, 'that's because I wasn't here'. I always find stating the bleeding obvious amusing.
At this point I was given a carrier bag and 2 hospital gowns, one to put on opening at the back with the top one opening at the front. I was allowed to keep bottom underwear and shoes on. (I had not taken up the option to bring my own dressing gown).
If it wasn't apparent already, there was an overflow of emergency cases coming in and a lack of nursing and support staff. This cannot be helped and no one, myself included was complaining. This flurry of activity broke the ice and the lady next to me (also amused by  the mild sarcasm of the nurse) said she had been waiting over an hour.
The lady in question was dressed in a lovely fluffy dressing gown with leopard print slippers and looked quite glamorous considering the venue. She went on to tell us that she was also a kidney cancer survivor and was here for her 3rd year check up post surgery. She went on to say that her husband had also had the condition and unfortunately died from kidney cancer and so she was herself very nervous.  What an awful shame, what are the chances?! I found out that this lady had her surgery at Good Hope, an option I wasn't given and would have preferred. She'd had open surgery though and now suffered from a large hernia which also needed surgery to repair.
Listening to other people's experiences of kidney cancer I feel fortunate that my own tumor was discovered and removed so swiftly. As often heard before, the lady I spoke to had visited her GP a few times about fatigue and blood in her wee but wasn't diagnosed straight away. It was because of her husbands unfortunate and untimely death from kidney cancer that she pursued the doctors and was eventually refered to a specialist by which time she had a tumor the size of a tennis ball in her kidney.
One by one we were taken to an adjoining room to be canulised and the queue started to move down as following this patients were called in to be scanned. I had asked in the meantime whether I should also be given a jug of water as the appointment forms had shown but the nurse said this wasn't neccessary?
In case you are not familiar with what a CT Scan is and why it's performed there is an excellent explanation on
When I was called in to have my scan I asked if I could suck a cough lozenger as I have a really irritating cough and you just know that when you're required not to, you always cough! This was allowed on the condition I made sure I didn't choke...
As it was my 3rd CT Scan I was aware of the procedure, holding breath then breathing, moving in and out of the donut and having the dye pumped through accompanied by the sensation that you've weed yourself, lovely. None of this bothered me as I've been there before. (That is in a CT Scan not weeing myself...)
The only thing on my mind now are the results. I asked if I would be able to get my results from my GP as I still haven't got an appointment date with my consultant. The radiologist checked on her computer and said this wouldn't be possible as it was the consultant who had requested the scan so I will have to be a patient patient.
So this is what they call watch and wait...

Monday, 4 November 2013

The Morning Before the Night After

This weekend I have broken the rules. The unwritten rules that I self imposed post surgery and after the realisation that life as I knew it may have to change. These included to stop piling my food with salt and give up red wine (the alcoholic beverage I most abused).
Over the weekend I have eaten a bag of salt and vinegar crisps and had about 3 glasses of red wine.
Now putting this into perspective with my prior vino consumption, not to mention the amount of salt I put in just about everything, it's not the worst thing I could do. However, the morning after I felt bad. Not hungover I hasten to say as although I have resisted wine for over 6 months I dont think my alcohol tolerance has changed that much. That said, it's been a while since I could sink 6 pints of stella and still irish dance!
If I'm honest I know why I gave in to the demon drink (and crisps!) Tomorrow is my 6 month ct scan check and deny as I might, I am a little worried and starting to dread the thought of going back through the tunnel.
This morning when I woke I felt quite guilty for indulging in those things that were on the banned list but given what I used to drink I daresay 'a little bit of what you fancy' really can do you good. I suppose moderation is the key. This minor lapse was more about Dutch courage and the need to relax and forget for a night why I have such Do's and don'ts nowadays.
Tomorrow night my first trip back through the tunnel since being in hospital will be over and hopefully uneventful. Here's hoping I can raise a glass later in thanks.

* Talking of thanks, the Dutch don't only have a remedy for courage - there's a certain lady in that neck of the woods who said the right things at the right time this weekend so thank you Lisanne X

Friday, 1 November 2013

Cancer Mind Games

My recent bout of illness somehow stood me still again. The time spent in bed recovering gave way to time thinking about where I'd been on this cancer journey. Moreover it led me to thoughts of where I'm going now.
Having run my own business for so long I am familiar with spending time alone with my thoughts, however they were most often concerning work and how to fit it all in. Now, I have time on my hands which would have been used to plan and put in practice new ideas and designs before my illness. Post cancer those plans seem somehow ridiculous and the ideas are not forthcoming. I just can't seem to figure out why.
Is this a feeling of hopelessness, a fear of planning too far ahead in case I can't complete what I've started or is it more to do with the business I was in,  fashion. I'm looking at the industry with almost disdain, is this business really worthy of so much effort I mean,  isn't it all just superficial? What lies beneath the fabrics, latest trends, in colours and must have shapes this season.
I'd often made comments about the industry I was in and was quite disparaging about the language used. All the 'rocking this look' and 'working that trend', the whole 'like my page', 'follow me' almost beggar friend mentality that comes with modern day fashionistas. It didn't stop me being part of it though and unfortunately my principals didn't win through - I was as guilty as the next for clocking my followers, likes and comments.
Now I really don't care.  Like me or don't, 'heart' my designs or not, it doesn't matter unless you mean it.
Over time while running my business I have entered into many collaborations and put together business plans, worked on projects and taken part in numerous events. Some of these were ongoing when I became unwell and as a result they stopped abruptly. I didn't hesitate when closing my business, the calls were made and within a day my online presence and trading ceased, just like that. It became irrelevant.
Now, faced with picking up the pieces - for which I have no excuse not to - I can't. Having been on the outside looking in I have a much clearer picture and I don't see my place in it. I'd be a hypocrite to criticise those still within that circle as I walked the same walk and talked the same talk but I'm almost cringing as I look back. You might as well say 'It's all about Me' because the fight for online superiority and sales is more like a popularity contest.
Conversely I feel that this time really is all about me and finding out what route to take next but this time I won't be pleading with my followers and 'friends' to come with me.
Is that the voice of experience or is it the experience of cancer that is speaking to me. Stripped of my fashionista image, lying in a hospital bed attached to numerous machines I thought little about the cancer inside me. Now, seven months on with recovery going well I think about it more. Let's face it, I'd been carrying that tumor around with me a fair few years according to medical science. Me and my cancer had done a few Clothes Shows's, arranged a fair few fashion events and strutted about town in our glad rags for a while. Perhaps that's it, I can't separate the cancer from the business, I have to allocate blame. I was told to give it a name when it was discovered but I couldn't and now it's become all the things I worked for that were never to be.
I wonder is this common for other cancer survivors? Is the fashion industry really so disdainful or is my reaction a natural response to the shock of having cancer. Had I worked in any other sector would I have the same disrespect for my previous career?
All I do know is that the scars are taking longer to heal than I expected and they run a lot deeper than I knew.

Wednesday, 23 October 2013

Back to Bed

I don't feel very well...
How many times have I said that in the past, when I've had a cold or a bug of some kind and usually it is just that and after a few days I'm back to right. However a week or so ago when I started to feel poorly I said nothing. As I began to feel worse and this became evident to my family I had to admit something was wrong. In the past - by that I mean pre cancer, there was a rational voice in my head telling me that it was probably just a virus and I'd be feeling much better soon. However, this being the first time I've been ill since well, being ill...the voice in my head  was more than a little irrational.
As documented in this blog, I have suffered with back pain since surgery and this is on the side that I have a remaining kidney. Last week the pain increased and I felt very sick, I was also quite feverish and lacked energy. It got so bad I had to take to my bed which was strange as I was transported back 6 months to when I spent a lot of time there in pain. In the same way that things often seem worse at night, I felt worse being in bed unable to do anything and my mind worked overtime. What if it is back?!
A trip to my GP was inconclusive as there really wasn't anything he could do as my symptoms could mean a virus. Also with a CT scan in the next couple of weeks it was best to see the outcome of that. He was extremely understanding and could see I was feeling awful though and asked me to return this week (which I will).
Yesterday was the first day I've felt relatively good again and today is that little bit better. I've shaken off the 'sorry for myself' feeling and put to bed the negative thoughts, a lot of which came when I was feeling my worst. The pain has eased and apart from the usual backache I'm not too bad at all. I've not eaten much for a week as my appetite disappeared and I've lost about half a stone which I didn't need to.
I will have to rethink my dietry changes now as although I'm sure they weren't the cause of this latest illness, my health hasn't improved by eating healthier foods. Maybe moderation will have to be my new mantra.
Either way I'm happy to be feeling well again and thankful all over again for my health. 

Friday, 11 October 2013

Bone Scan

By the time I went for my bone scan I had stopped writing in my journal so this is from memory. The scan took place in May about 2 months after my surgery and was recommended by the consultant surgeon due to continuing back pain.
I turned up at Good Hope hospital that morning with my daughter and was taken into a small room in the Nuclear Medicine Dept where a nurse put a canular into the back of my wrist. Once that was done a specialist came and proceeded to pump in something she referred to as 'stuff' and said it was the best way to describe it. The 'stuff' would flow around my body and enable the scanner to pick up what it needed from my bones (or something like that). Obviously I am not familiar with any of the technical detail of what is involved so if you want to know more check out this piece on
Once the stuff was flowing around my bones I was allowed to leave the hospital for approx 90 minutes during which time I was advised to drink plenty and most importantly 'keep away from small children/babies and expectant mothers'. Apparently this was due to the slight risk of radiation I was carrying which would mean I could give off gamma rays. For the next few hours I was a SuperHero...
With time to kill we went off to have lunch in the nearest Wetherspoons where I sat near a door and looked menacingly at any parents with children or ladies with large stomachs (the fat or pregnant question arose often...)
Back at the hospital I was taken into the room with the scanner and asked to climb on the bed, fully clothed. The specialist then explained that the scanner would come down so close to me it would nearly touch my face and that I shouldn't feel alarmed. She then made sure I was positioned correctly and left the room. For the next 20 minutes I had to lie perfectly still while this huge machine lowered itself down and moved across my body, it was a bit freaky and although I'm not claustraphobic I felt as though I was going to be crushed!
When the scanner had taken all the images it needed the specialist returned to the room and I was told I could leave. Before I went she told me that when going for a wee I must flush the toilet twice after myself as a small amount of radiation may be left, bizarre! Also, I must steer clear from Mums to be and little ones for the next 48 hours.
That night I had the feeling I may be glowing in the dark but no special super hero powers presented themselves.
The results of the scan took a few weeks to arrive and as the saying goes, 'no news is good news' I was sure had there been anything wrong I would have heard.  About 6 weeks later, which was over 3 months post surgery I received a letter. It was from the consultant and contained the information I'd asked for about my operation 3 months ago, seriously! It was brief and to the point AND at the bottom of the letter in hand writing was scrawled, 'bone scan normal'. Now I have to emphasize once more, I am more than happy with the work of the consultant and his team and extremely thankfully to them. However, when it comes to information and the way it is given, the words 'could try harder' spring to mind.
The main thing was that my bone scan had been clear which was excellent news. Unfortunately, the back pain continues so of course does this blog...

Tuesday, 8 October 2013

The Ketogenic Diet Begins...

Until now I have never been on a diet. Nor have I entered a gym. Exercise for me was part of daily life, working, walking, cleaning, dog walking etc. I suppose I have been fortunate not to have needed to exercise for weight loss or health gain but only for pleasure and necessity.
Now however, I am having to watch what I eat and drink, not only because I have one remaining kidney to take care of but also to ensure I don't gain weight as a result of lack of exercise. Since having cancer I have not returned to 'business as usual' in as much as I can't walk, work, clean or dog walk at the same rate as before. At my age (45) it is inevitable that I will start gaining weight - in all the wrong places IF I don't do something about it.
Lately I have benefited from others going through the same, in particular Lisanne Vos' Blog RUKidneyingMe which includes health tips and recipies for a healthy life in the 'Mono Kidney Club'. Another source of healthy knowledge has come from Elaine Cantin's book The Cantin Ketogenic Diet - for Cancer, Type1 Diabetes & other ailments. This book has been kindly lent to me by Sharon Fox Cancer Centre I have also gained a wealth of useful dietary information from the James Whale Kidney Cancer Fund site
I must admit, I am still a believer in the philosphy that 'A little bit of what you fancy does you good' BUT I am currently taking advice from these sources and using what I can. From this I will record the dietary changes I can make and hopefully stick to in order to improve my healthy diet.
So, here I go and first on the Prohibited Food List is Alcohol, one of the benefits of which will be that I'll not sing on a karaoke without it again...!
Ok what's next...

Thursday, 3 October 2013

Sharon Fox Cancer Centre on Surprise Surprise

If you have been following my blog so far you may be interested to see the Sharon Fox's appearance last weekend on prime time UK TV Show Surprise Surprise
If you would like to support the centre by purchasing a calender you can visit the site here at Sharon Fox Cancer Centre
You can also listen to Sharon's interview on local radio TCRFM

The Sharon Fox Cancer Centre Tamworth

I hesitated at putting the title 'Coming Out' for this post as for me, admitting to and telling people about my illness was a big thing to do. Having kept my cancer news on a 'need to know' basis, for several weeks only closest family and friends were aware. Eventually I used the necessary evil that is Facebook to post a brief 'guess where I've been...kind of message' as this would filter to both friends and acquaintances which in turn meant I wouldn't have to tell them personally. The response shocked me, so many people left lovely messages and sent kind wishes, I was quite overwhelmed.
The next step was to get back out and about, I wasn't back to work and so needed to show my face and start going about normal life again. Having run a creative business I was aware that the local cancer charity centre, run by breast cancer patient Sharon Fox held an Arts & Crafts morning once a week. I figured I could go along and get involved, maybe help out. I'd visited the centre before my illness a couple of times but then it was to drop donations or concerning involvement with the charity as a business. This was different - now I was one of the gang!
Sharon was aware I'd had cancer and had herself left a lovely message in response to my facebook 'announcement' so I contacted her beforehand about joining that weeks group. When I arrived outside the centre I was suddenly overcome with all kinds of emotions, fear, anxiety, sadness and panic set in. Once I step through that door they know, I've had cancer. I'm not dropping off a donation, I'm not running a workshop, I'm there because I've had cancer. It was as if the news had hit me all over again and the denial I'd been in was futile, the people behind this door could see through the bravado because they'd been here too.
As I stood outside another lady arrived and as if via telepathy greeted me and opened the door, ushered me in as if we were old friends. Once inside Sharon was there and I was effortlessly introduced to the ladies present (no mention of the C word) just that I was joining in the session that morning. We stood and chatted and then went through to the room where Maggie, who was there to help proceeded to show me some of the art they were working on. So far so good. It was warm and relaxed and I was talking about things I could relate to.
Then it hit again and I can't explain what or why. It was as though I was looking at the activity and hearing the chatter from a distance. The tears started to fall (incidently they are falling now even thinking about it) and I stood and cried. For the first time, outside of my home or a hospital bed the emotion was overwhelming and I let go of some of the fear I'd been hiding.
Maggie comforted me and said all the right things before another couple of ladies offered me a seat in the office for a chat about how I could help when in fact, they were helping me. By this time I was able to articulate how I felt but no explanation was needed as again, they knew. I don't think I made any firm offers of help that day but by the time I left I was strangely empowered. I'd done two of the things that I hadn't done yet, cried in public and talked openly about my experience and I was ok. 'It' was ok. Cancer had taken my kidney and knocked my health about somewhat but I was still here.
Since that visit I have returned to the centre. Admittedly one of those visits was spent in the car park and I didn't leave the car....bad day. However, on the other occasions I wasn't the 'new girl' and saw first hand both men and women enter the centre and speak of their illness, this is a most humbling experience. To witness the work done at Sharon Fox Cancer Centre is emotional whether you are a patient, carer, volunteer or visitor you can't help but feel part of this wonderful place.
This is my way of saying thank you.
Sharon Fox Cancer Centre

Wednesday, 2 October 2013

The Verdict

I've returned to where I left off with my kidney cancer journey and having had to revisit hospital with a suspected blood clot after my surgery, I was determined to steer clear of the place for a while. However, I was still anxious to see the consultant surgeon who had performed my nephrectomy and find out if they had discovered anything from the subsequent biopsy of my tumor. This appointment seemed ages arriving, it was actually 6 weeks but the time dragged as in between there was no one to give the answers I needed.
The appointment was at Solihull Hospital and it was at a urology clinic. After a wait of over 3 hours (yes 3) my name was called and I was finally sat opposite the man who had saved my life and removed the cancer and my kidney. We had met previously of course but this was different, this time I was minus a tumor and out of a hospital bed.
The consultant examined my wound and read the notes from the previous admission for suspected blood clot and wound infection. The scarring wasn't pretty but he was satisfied it was now healing well. He asked questions about my general health and well being which were difficult to answer as I wasn't sure if how I felt was good or bad considering my surgery. Personally I still felt pretty rough and was in a lot of pain from my back - conversely the opposite side. The consultant though said this was all relative to what I had been through although he was concerned about my back pain. He didn't think it had anything to do with the surgery and recommended a bone scan as a precaution.
Then it was our chance to ask questions, my husband was with me which was wonderful as during my admissions and diagnosis all news had been broken to me alone - not by choice. We asked the obvious questions, 'has the cancer all gone' and 'will there be any more treatment'? The answers were pretty much what had been said previously, the tumor was encapsulated in the kidney and had been removed whole, therefore it should be all gone. While 'in there' they had poked around to check surrounding organs and no evidence was found of anything else sinister. As kidney cancer is not generally treated with chemotherapy or radiotherapy there would be no further treatment but I would need to return for regular check ups and CT scans. When asked how long this would be for we were told, 'as long as there's a national health service - indefinately'. I was of course now a renal patient as well as a cancer patient so this I suppose made sense and was reassuring, I was on the radar!
The BIG question of  'is there a chance it has spread' was answered in this way. The consultant took a pen and paper and made a dot on the paper, he said, 'right now there could be a tumor this size inside you, we wouldn't pick it up on a scan and you wouldn't know it was there. You have the choice to leave here and worry endlessly about that or you can choose to go out and carry on living your life as best you can. I suggest the latter'.
Well, that may sound abrupt and a bit too graphic but, it's true. He went on to say that so many elements of our daily life can cause that one cell to go wrong, what we eat, drink, breathe etc. I was at least going to be closely monitored and lets face it, had been walking around for God knows how many years carrying the cancer inside unknowing.
Another BIG question was of course, 'how did it get there?'. I mean, obviously I don't want it back and I wanted to find out if my lifestyle could have had any effect or, more to the point how I could possibly avoid a recurrence. At this stage I was still pretty ignorant of kidney cancer and knew only the statistical figures and they told me it was uncommon in women of my age and was not a well known cancer compared to others. The consultant gave another succinct answer... He said, 'walk into any children's ward where you may find young people suffering with cancer and ask yourself the same question, why them, how come, what caused this?' In other words, if we knew the answers we'd all be better qualified to avoid this awful disease, sometimes there just aren't any reasonable answers and if there are, it's often guesswork.
I left that day together with my husband in the knowledge that everything that could have been done, had been done and nothing was being left to chance. We realised why our wait had been so long, the consultant had spent time explaining thoroughly all we wanted to know, no complaints there.
The next step was a bone scan. In the meantime I could worry about that small dot on the paper that could be inside right now OR I could get on with the life I'd been given thanks to medical intervention and thank God I was here.
I chose the latter.

Tuesday, 24 September 2013

Climb Every Mountain

Apologies for the cringy just had to be!
Most years we go to Wales and when there we always find time to climb up into the mountains where we have our favourite places. Wales has many hidden treasures and amongst them are it's blue lagoons, old slate mine shafts dug high up into the mountains and now filled with water. To get to them involves a steep climb followed by negotiating your way through a small tunnel cut into the mountainside that leads to the inner lagoon. Alternatively your can scramble to the top of the mountain and look down into the pool.
This year I was determined to repeat this visit and spend some time by the side of one of these beautiful, tranquil lagoons, however whether I'd make the climb was another matter.
Well, I did it!

It took a little longer than usual but once there was worth all the effort. While I sat by the lagoon I was able to look back at the struggle I'd had over the past 6 months with some perspective. It has been hard up till now to think about the weeks that followed the discovery of my cancer and I have preferred to forget it. Writing this blog has helped tremendously as not only have I put into words the way I felt and the things that happened but also, I have heard from others who have gone through/going through the same.
Looking back from the top of a mountain I was finally able to see the journey I've made. I can now place myself back at those difficult moments and see that time does heal and the journey gets easier.
More importantly, it doesn't end here.

Friday, 13 September 2013

Six Months Ago Today

When I woke on 13th March 2013 I don't remember feeling unwell. Before that day I'd not complained of being ill, no backache, bleeding or any other symptoms connected with kidney cancer.
I went to the toilet for a wee and discovered I was bleeding which I knew was unusual but still wasn't overly concerned, more puzzled. When I returned to bed I remember clearly saying to my husband, 'I don't think I'm very well'. then the strangest thing was I started crying. I agreed I'd go to the doctor that morning, got myself together and went downstairs to carry on preparing for the day ahead.
Ten minutes later I collapsed. Actually it was more a slide as this enormous pain hit me in the side like none I've ever felt before and I slid down the cupboards in the kitchen. It was like a dead weight in my left side and I could hardly move and so started to drag myself across the kitchen floor. Our two dogs were obviously confused by this and followed me along patting and licking me!
When I reached the bottom of the stairs I was able to call my husband who rushed down and so began this journey, from a pain in the side, via 3 hospitals to a diagnosis of kidney cancer in 24 hours.
The rest is written in this blog. My first experience of hospital (other than giving birth there), cathaters, canulars and irrigation systems - oh the glamour of it all. From a career amongst fashionistas and superficial conversation to sharing my days with elderly poorly ladies discussing bowel movements.
Here and now I'm doing ok and feel the need to get back on track with my life more than ever. I am nagged by a pain in my back which is conversely on the opposite side to where my kidney was removed but this is being investigated. Other than that I'm relatively fine, a bit limpy, a bit bored having closed my business but very relieved that the cancer was found and removed. I was lucky.
As for questions I have loads. I knew nothing of this disease before it hit me. Cancer has affected my life in the form of my Mother's breast cancer but I didn't worry it'd get me. As I've written in my blog I have asked lots of questions, how long was it there, what caused it, what could prevent it, should I change diet....on and on but the answers didn't come from the doctors that cared for me in hospital, there job was to make me better. I have received excellent care from my GP but more answers came from the James Whale Fund for kidney cancer.
I avoided the internet for some time after refusing to Google my condition in case I heard stuff I didn't like. The doctor recommended and I tried MacMillan both of which were helpful but the real insight came from the JWF and I am very thankful.
My business was very reliant on social networking and when this cancer struck me suddenly I quickly closed my business and came offline. I am very private generally about my personal life, the social network was mainly my business persona. When I started this blog, written from my hospital diary I took it offline 3 times before having the courage to leave it live. This was mainly due to the comments and messages of support and thanks I received for telling my story. This has made a huge difference to the way I am dealing with what has happened in a positive way.
Today is a milestone, one I need to stop and think carefully about to decide how I  move forward because that is the only way now. I'll sign off for a week while I make those decisions and when I come back it can only be stronger. I have had kidney cancer and beaten it thanks to the wonderful medical team, my family, my friends and in it's own way, the social network that has given me a voice to say how I feel.

Thursday, 12 September 2013

Remember Me?

Thought I'd just remind people (and myself) of who I was 6 months ago.
Here's the 'About Me' from my website - seems a long time ago...

3 canulars, 2 Xrays & A CT Scan

No sleep.
Not sure whether it's the pain, the anxiety or the fact I'm in this island of a bed in a high dependancy room surrounded by windows that I can't see out of. Periodically the blinds at the windows move as staff peep in to check on me, spooky. It's eerily quiet compared to normal wards apart from beeps of machines. My fellow patients are either really poorly and can't move or like me, afraid to move from the island bed in the centre of the room. It was like Big Brother was watching.
The bed was electronic and moved all ways at the touch of a button which was cool but being in the middle of the room there was nowhere to put anything. When admitted I was fully dressed and this is how I slept with my bag in bed with me! I crept out for a wee in the night but was still in pain so couldn't move fast enough to avoid staff seeing and coming to my aid. Good you may think but I just wanted to go home so didn't want a fuss in case they kept me.
In the morning a wheelchair was brought in and I was once again taken down for a ct scan. The staff shortages meant a member of the admin team had to accompany me, she wasn't very good humoured. 
Once in radiology they tested my canular and surprise surprise it wasn't working, it was tissuing AGAIN! OUCH! Another one was put in and I was sent once more through the ct scanner tunnel.
A few anxious hours wait till the results were sent up and thankfully no blood clot was found. I was given more medication and discharged later that afternoon. Exhausted.

Wednesday, 11 September 2013

4 weeks post Surgery - Back to Hospital

I've now stopped writing my diary daily, I think mainly due to the fact that the days merge together as I'm not able to really do anything.
Ten days after surgery while recovering at home I received a visit from the district nurse following a call by my daughter (herself a nurse) who was concerned about my wound. The nurse was puzzled by the huge 'slug like' blister next to my wound and said all she could really do was re-dress it. She said that all things considered I was doing pretty well and passed me a couple of numbers to call if I was worried.
My diary then jumps 2 weeks.
The last couple of days I have not felt good, the pain has not eased and my back is especially sore. The thing bothering me most is shortness of breath, even climbing the stairs leaves me out of breath. I'm feeling quite faint and very tired.
The district nurse returned to look at my wound, she took a swab and said it looked infected. She was more concerned that I was short of breath and made an appointment for me to see a doctor that day.
Although I know I need to go I'm upset as I have made an appointment to go to the doctor later in the week with my husband to hear the results of my biopsy.
I don't want to receive this news on my own and get quite tearful as I've been alone when receiving all the bad news so far. Not that my husband wouldn't or couldn't be there but that the doctors have just 'come out with it'.
The district nurse says she would ensure the doctor would not disclose my biopsy results but that I would have to go today.
At the doctors I was examined and to my shock told I would have to go immediately back to hospital as there was a chance I had a blood clot. As my daughter had taken me she said she would drive me to hospital and stay till my husband arrived, I didn't want another ambulance trip. By now I was really upset.
Once back at A&E I was admitted and obs carried out. My blood pressure was very low and I had blood taken. The canular they used was green - please note, if anyone comes near you with a green canular question WHY! When he put it in the back of my hand the pain was excrutiating and I couldn't bend my wrist. I later learnt from a sympathetic nurse that green canulars are the largest and used when a large amount of drugs needs pumping in quickly. Why he thought I needed one I don't know?! Thankfully the nurse called another doctor to remove and replace it with a smaller one. Unfortunately he missed the vein and the drugs began tissuing (pumping into tissue rather than vein). As you can imagine by now my hand was black and blue!
Once sorted with canular I was sent to xray where the radiographer questioned me having another ct scan explaining that having only one kidney left it has to work harder to filter the dye around. I was brimming with confidence by this time...
My husband arrived later that evening and sat with me for a further 5 hours till I was admitted - I'd been on a trolley for 8 and a half hours. I hadn't anticipated my next stop, the wards were overflowing and I was sent to the High Dependancy Unit as the ct scanner wasn't available. I now have to spend a night on my own in a high dependancy bed surrounded by huge equipment and shuttered windows that staff peep though regularly. Weird.

Monday, 9 September 2013

Here & Now - Cans & Can'ts

I've skipped forward from my diary in order to show where I'm at right now. As I am writing the blog retrospectively it has been strange to recap what happened from the journal I kept and in part, very painful.
The day I collapsed in pain was March 13th and from then the surgery date was March 27th so I'll be reaching the 6 month anniversary of both soon (no I won't be celebrating).
The way I thought I'd present this post is by telling you what I can and can't do, I am doing this by comparing my day to day life before cancer and the here and now. This is a personal account - I don't expect everyone post nephrectomy to be missing skanking at the local ska nights!
I can now walk more or less painfully for at least half an hour. I can't walk at the same pace or for as far before having niggling pain in my back.
I can shower and bath no problem. I can't have a soak in the bath for too long as the water irritates my scars still - either that or I just don't like the look of them!
I can wear clothes other than elasticated waisted joggers and long loose tops/dresses. I can't get comfortable in anything other than the aforementioned and seem to live in dungarees. I don't like anything on or around my waist still so tend to wear jeans undone and looser clothes.
I can pretty much eat/drink what I want although I've cut out the obvious bad stuff like salt. I have had some alcohol but have become a lightweight (no bad thing) compared to before and feel guilty when I drink now.
I can't eat what I want when I want as unlike before when I was lucky to be a 40 something size 8-10 I now have to watch my weight as I'm not exercising.
I may as well have put I can eat/drink what I want but I can't eat/drink what I want! Guilt and waistline! (Oh and the fact I'd be wearing elasticated waists indefinately...)
I can go out and socialise without people knowing anything is or has been wrong as there's no obvious signs that I've been unwell. I can't go to the same places or do the same things, ska nights, moshpits and the local rowdy pubs are out unless I go dressed in padded clothing!
I can talk about what happened a little easier now and this blog has helped. Being such a huge shock out of the blue it took a while to sink in. I can't share this blog with friends/family openly which is why it's not on Facebook as talking and telling those who know me makes me uncomfortable.
I can get to sleep ok, nothing new there as I've always been able to get off to sleep easily. I can't sleep through the night as I always need a wee at least twice and once I've been I struggle to go back to sleep. Also I still cant sleep on my left side where the surgery took place, it's just uncomfortable.
Other small changes that are significant to me personally.
My dreams when asleep are completely bizarre and unlike anything I've experienced before (maybe another blog there...)
The routine I had when running a fashion business has obviously changed as I've not returned to work yet. This in the main part is not due to my physical abilities but rather the superficial nature of the business I was in and the fact I am looking at that differently now. However needs must so who knows.
That routine included listening to music/radio during the day, strangely this does more to annoy me now and I prefer silence?
As the 6 month anniversary of my surgery approaches I am hoping to mark it by getting back to work or at least to normality, however that may present itself. The fact I'll be minus a kidney and its nasty tumor has obviously had more of an effect on me than I previously cared to admit. Reckon I need to get busy!
I can get on with life and back to normal. I can't shake the bad memory (but don't tell anyone).

Friday, 6 September 2013

Days 20-24 Back to Reality

I'm home again. Just under 3 weeks ago I'd left here with a terrible pain in my side with no idea I had been carrying a tumor around in my kidney for so long* Now I was back to reality, minus the tumor and my left kidney. This must be what is meant by 'finally hitting home'!
The first couple of days of my diary contain mainly personal detail which I have intentionally kept out of this account. My family were going through this ordeal with me and their feelings/memories of it are their own so my blog is about my experience only.
Much of what I have written concerns the pain I was in and the change of routine I faced. Being in pain I didn't leave my bed much for the first couple of days and even then I could only lie with my knees up as the covers or my nightie hurt the wound. I made a kind of tent so that nothing touched my side which although still numb from the surgery, hurt like hell!
I hadn't had a bath/shower for 3 weeks and the thought of either was both inviting and frightening. The alternative was of course washing which my daughter was having to help with - a new experience for us both! Both of my daughters are nurses so in that respect I am very fortunate as their care and understanding of my experience was invaluable.
The remainder of my prescription which my husband was to pick up from the hospital had not been prepared as promised and I went another day without it till he was finally asked to collect late at night, not ideal. The missing drugs were Clexane injections which if you are not familiar with have to be injected into your stomach (in my case) to help prevent blood clotting after surgery. I grew to hate this new daily procedure.
By my third day at home I was feeling quite unwell and my wound didn't look good, there was also a huge blister next to it that resembled a slug! Both of my nursey daughters were not happy with this and called the doctors who said a district nurse would come to see me tomorrow.
When I was discharged there had been no visits from district nurses set up or appts with doctors advised. I was given a discharge sheet which I can quote from in part (without mentioning Dr names)

Main Diagnosos: Left laproscopic nephrectomy

Findings + Treatment: Pt had left nephrectomy

Pt recovered well post op with no complications

Pt c/o pain after operation but this settled with simple analgesia

She was sent home on analgesia and clexane for a total 28 days

Out Pt follow up 3/52   (this means within 3 months)

The fact now was that 3 days after leaving the ward I was in a lot of pain still and my wound was looking angry. Next new experience, a district nurse.

*When I asked the surgeon how long the tumor may have been inside me (it was 7cm dia) he said 'how far can a horse run'? I think he meant it was impossible to tell...
I have since read another blog in which a kidney cancer patient was told that these cancers grow approx 1cm each year. I don't know that this is conclusive but the thought that I've had cancer for 7 years without knowing is some scary thing! I really have been lucky it was found.

Thursday, 5 September 2013

Day 19 - Home Time

The bay I've been moved to is really noisy as there are a lot of machines including breathing apparatus used on other patients. Because of the bed shortages my fellow 'occupants' have varying conditions but only one is a renal patient as they've been moved from other wards.
It's Easter Sunday and as I was awake most of the night I watched a beautiful sunrise over Bordesley Green - the little things eh?!
The ward round that morning was far more relaxed I suppose this was due to it being a holiday so a lot of regular staff were away. The doctor that came to see me was in scrubs and I'm not really sure what his specialism was but I liked him as soon as he said 'You need to go home'. He told me (and I quote) 'It is very noisy in here, you can't have slept well and the food is terrible!' He said I needed rest and he would see if he could get me discharged later that day. What a lovely man.
I had some routine blood tests and a nurse came to examine me and chat about care for my wound as well as order some drugs to take away. As I was expecting to go home I decided to leave the hospital lunch (the food really was apalling) as I don't eat much meat I couldn't survive on cheese pie (cheap pie) for much longer anyway. Bad move, the drugs didn't arrive that afternoon.
Eventually, after waiting till dinner time (my husband had come to pick me up earlier) we decided to leave with a part prescription. The remaining Clexane injections we were told would be ready the following day but my husband would have to return to the hospital to collect. Ridiculous really when you can get them at a chemist?
I was once again being taken out in a wheelchair but this time hopefully home for good. It had been a much better ward than the last one, I even had a nurse escort to the car.
It was a painful journey home, you notice how bad some of our roads are when you've had abdominal surgery! Being home though was the best medicine I could have had and so emotional.

Sunday, 1 September 2013

Day 18 - From my diary

I stopped writing for a few days and picked my diary back up about a week later so will copy from the page;
Didn't feel much like writing, not been feeling too good. The morphine PCA had been taken down and I was taking codeine and paracetomol. It's good to have no canulars attached, easier to move about but the pain is much the same, bad. Friends came to see me today and wanted to bring something but I'm not eating much. They brought me fresh strawberries and grapes and put them in takeaway cartons, the nurse thought I'd ordered a curry! Until now I hadn't allowed anyone other than my immediate family to visit, just didn't want to see anyone but I made an exception and was glad I did, it was a lovely visit.
I saw a doctor in the evening on ward rounds and he said I may be allowed home tomorrow, I hope so, just want to be home now.

Friday, 30 August 2013

Day 17 - Pain in the Heart

I don't remember sleeping that night, it was hard to get comfortable (they still couldn't get a suitable bed so I was on a flat trolley type bed) and the pain was bad. I haven't put what time but in the early hours I had to call a nurse. Most of the pain was concentrated in my tummy and lower back but I had started to get pains in my chest. The nurse on duty was concerned and called for a doctor who then attached an ECG machine to monitor my heart. The results were ok and as they had suspected the chest pains were to do with trapped gasses from the surgery. Further doses of painkillers were given and then it was discovered that the PCA morphine had run out so I hadn't been getting pain relief for a while - explained a lot.
I must have managed to get to sleep eventually but was woken when another ward 're-shuffle' started and me and another lady from the same bay were moved to the next room along. Other women in our bay were taken elsewhere. This was because of the 4 bays in the ward, 3 were usually male and only one was for women. However, at this time 2 of them had been full of women but more men needed admitting. It then transpired that not all of the women were renal cases, some had been given beds from other wards due to bed shortages. Either way, once again we were on the move and so sleep would have to wait, again.
My new bed is by the window and I can see the skyline which is nice. It's amazing how the little things can lift your spirits, watching birds (and planes) pass by was a simple pleasure - I never thought the Small Heath skyline would mean so much! I was also kept amused by the continual bickering of staff who were understandably annoyed about bed shortages.  They blamed other wards for the complaints they faced, believe me some of the patients did not take the bed move lying down...if you know what I'm saying!

Wednesday, 28 August 2013

Fears & Flashbacks

It's nearly 6 months on now and to those who don't know me or haven't heard what happened, you wouldn't be able to tell there had been anything wrong. Physically I look no different, the scars are well hidden.
I am however suffering with back pain which conversely is on the opposite side to that where the kidney was removed. I'll write about this in more detail once I return to where I left off as it became evident about a month after surgery. Since then I've had various tests all of which are inconclusive and suggest either surgery damage (the op would've meant a lot of twisting me about) or I've compensated for the pain on the left by walking incorrectly.
Either way on the outside all looks ok, I'm a bit slower getting around but unless I told you I'd had kidney cancer you'd never know.
Because I was unable to do most of what I did normally, including running my business I have taken time out to recover. Now I am starting to notice that it's becoming more difficult to return to that normality, not because of physical restraints but there's an underlying fear that I can't explain. Having told those that know me personally and people I work with I obviously get a lot of genuine concern and kind comments. I've had visits, flowers, cards and phonecalls all of which have been lovely but now when the 'cancer' is mentioned I almost freeze. For this reason I have been very guarded and even a little reclusive.
I don't know whether it's the pain in my back or the pain from the wound which is obviously still repairing but there are times when I worry about the cause. The obvious question and the one I don't say out loud is, 'has it gone somewhere else'? Outwardly I am quite reasonable and will say all the test are inconclusive and it must be my body repairing itself but inside, I admit, I do have concerns.
Maybe it's my hurry to get back to normal that makes it hard to accept I have to deal with further pain or it could be my reluctance to talk about what's happened, I don't know. Either way the fear of facing up to cancer and the difficulty I'm currently having looking back at my experience are hard to come to terms with.
I have looked forward to 'getting back to normal' for nearly 6 months. Now I may have to face the fact that 'normal' will just be a little bit different from now on.

Friday, 23 August 2013

Day 16 Back on my feet

Woke in a lot of pain so the morphine PCA (patient controlled analgesia) was my favourite new toy. I was more than happy to get rid of the cathater which was removed that morning, one accessory I definately don't want to carry round again! For now I just had the one line in and that was enough, in fact for the pain relief it gave they'd probably have to fight me to get it out.
The breakfast came around at 6.30 and although I was happy to get a coffee and some rice crispies it was short lived as they made me feel really sick.
Shortly after that the ward rounds started and I received a visit from the surgeon which was good, he checked my wound and said there'd be no reason why I shouldn't leave hospital in a couple of days. He then explained that a physiotherapist would be coming around to assist me getting up and out of bed shortly. All of this was very positive and again I was happy to hear it but at the same time I felt awful and the pain was pretty bad so it worried me slightly.
However, when the physio came around I dutifully got myself up and out of the bed and managed to walk to the window and back, it was horrendous! I was so determined to do it because I wanted to get out of hospital as soon as possible and it also felt as though it was expected. On the plus side though had the physio not encouraged me I would have remained frightened to move, I thought my insides were falling out. Later that day I got myself out again and walked to the bathroom which felt liberating, I was thankful not to have to rely on the staff. For a first day after surgery it was a positive one

Monday, 19 August 2013

Day 15 Jelly & Morphine

I spent some time in the recovery room until a bed was found back on a renal ward and I found myself in another 6 bed bay. I was still very drowsy and unsure of the sequence of events for a while. My husband had been allowed to stay with me. I remember feeling very sick. The consultant came to see me briefly and this time my husband was able to be with me. The surgeon said the tumor had been removed as a whole with the kidney by keyhole surgery. He said the lump would be sent away for analysis and that they had looked for stray cells elsewhere, I hadn't been aware this would happen before the operation.
I was in a lot of abdominal pain which I was told was due to the gases pumped in to inflate me during surgery. I was given a PCA pain relieving machine that administered morphine when I pushed a button and they put another catheter in.
After my husband left I slept a lot. I couldn't eat and had attempted jelly with little success as I couldn't move myself up in the bed. The staff told me I was supposed to have a special bed that I would be able to move up and down with a control but there were none available. So I had a standard hospital bed with 2 pillows which meant I couldn't raise myself up or get comfortable. I'd like to say that the staff helped but at this time, they didn't. Sleep was fretful and in short bouts, the night was long and I was in a lot of pain.
I was wearing a hospital gown and when I looked down the front all I could see was a large white pad where the wound was. My left side felt sore from the back to the front and top to bottom. I couldn't see anything and was afraid to touch anywhere. One kidney now.

Saturday, 17 August 2013

An Unfashionable Cancer

Less than 3 weeks before I collapsed and was diagnosed with kidney cancer, this feature in the local paper Tamworth Herald was published.
Looking back at the photographs now it's strange to think I had a tumor growing inside my kidney. Only 2 months prior to that I had exhibited my designs at Clothes Show Live in Birmingham, again with no idea I was unwell let alone had cancer.
A further 6 years before this my mother was diagnosed with breast cancer and I had supported her through the treatments and thankfully on to a full recovery. I had not once stopped to think I was at risk from cancer myself, it never crossed my mind to have any check ups, I didn't even know my doctors name.
However, 1 week before my collapse I found a lump in my armpit, just a small swelling but it made me stop and think and I booked to see a nurse for a check up. At the health centre a nurse examined me and immediately referred me through to a doctor, not what I was expecting. The doctor examined me but by then the lump was not very big, the swelling had gone down. He said it was probably glands and most likely a symptom of something else, little did we know.
Since diagnosis and surgery I have of course had various check ups and examinations and questions about my medical history have been asked. My Dad suffered with kidney problems and sadly died young at 41 from a heart attack. No link to his kidney problems were made though and neither was my Mom's breast cancer connected. No reason for my cancer was given, in fact when I asked how long it had been there the consultant answered, 'how far can a horse run'? If you think that's a vague answer try this, when I asked why I may have kidney cancer specifically the consultant said, 'ask yourself why children have cancer, what have they done'?
I  think the point being made was that there is no hard and fast answer only statistics. Cancer itself is a lottery (another quote from my consultant) it can strike at random and unfortunately this time it was me. The statistics show that kidney cancer is the 8th most common of the diseases and then it affects significantly more men than women. High on the list of risks are drinking, smoking, obesity and high blood pressure - none of which really concerned me (ok so my drink index was occasionally too high...)
So there it was, I had a relatively uncommon cancer and didn't match the statistics. I was running an alternative fashion company that didn't follow the trends. My business was growing, so was the cancer and both were about to stop abruptly.
I still ask myself why, how it came to be there, how long for, was I ill and didn't notice, did it hurt and I carried on and to myself - will it ever come back.
Another quote from my consultant, 'you can either worry about it night and day wondering if there's still some there or you can carry on as normal and hope it's all gone'.
The last but one sentence in my local paper business feature should help me decide;
'I make clothes that are neither in nor out of fashion but take their inspiration from music and we intend to be around for a long while yet'.
Reckon I will.

Friday, 16 August 2013

Day 15 Goodbye Kidney & Cancer its Surgery Time

It was a fretful sleep, worrying about missing the alarm as well as the obvious, my first operation.
It was snowing so we left earlier than planned and made our way to admissions lounge where we sat amongst other patients booked for surgery in a quiet, sparse waiting room. I was called to a smaller room, my husband came with me and I was asked a series of questions by a nurse including, 'which kidney is being removed' - I had hoped they knew this. I had some routine checks, blood pressure, heart rate and then an anesthetist came in and asked more questions, cant remember what now. I was sent back to the main waiting room and another doctor came to see me and from there I was sent back to another small room (again my husband was allowed to come too) where I was given a gown and surgical stockings to put on.
It was then the surgeon came in, the first time my husband had met him or for that matter any of the team of doctors that had looked after me. As I have written previously, this wasn't like a TV drama where your family are taken to one side by a doctor or nurse and have news broken to them or even updates on your condition. At this point my husband had had to rely on me relaying information to him.
The surgeon went through more Q&As and then drew on my side and back the points where he would be making incisions. He was very kind and answered our questions and then said he'd see me in theatre.
It all seemed to quick at that point and I think finally hit home.
We were sent to sit out in a corridor where a theatre nurse in scrubs came over and said it was time to take me down. That moment was awful, having to walk away from my husband sat in the corridor I felt so scared. I was dressed in one of those gowns that you have to hold together, my pants and a pair of adidas trainers.
Incidentally, in the past week I'd asked a friend to cut my hair as I was unable to wash or look after it while in hospital so I decided to cut it all off. It was the shortest of pixie cuts but in my gown and trainers I looked particularly waif like.
Our first stop was another small room where I answered more questions again including, 'which kidney is being removed', should I worry...? From there I went through to the room outside the theatre where another nurse asked me questions with, yes you guessed it, 'which kidney is being removed'. Apparently its just procedure.
The strangest thing for me was walking into the operating theatre, I had envisaged being wheeled in on a bed but going in on foot was bizarre. There were several people all in scrubs and I was invited to climb up onto the bed and leave my trainers underneath, it felt so weird. Then an anesthetist came to check my veins but took some time to admire my sleeve tattoo which he decided was too nice to puncture. Then the team proceeded to hook me up and before I knew it I was gone. No countdowns, no dreams nothing to report.
My next memory is looking up to see my husband in a recovery ward. It was all over.
Five and a half hours had passed, my kidney along with the cancer had been successfully removed.

Thursday, 15 August 2013

Days 7-14 In Limbo

Going home was very emotional as I'd left 6 days earlier not knowing I had cancer and never expecting a stay in hospital. Seeing family, friends and my two dogs was wonderful but at the same time very sad as I was having to break the news to them of what was happening. Even the dogs seemed to know that things had changed and life wasn't the same right now, our routine had abruptly stopped.
I chose not to tell many people and news of my condition was on a 'need to know' basis, I just didn't want to have calls or questions. In hindsight I'm not sure this made it easier or harder for my immediate family as I was restricting them from sharing what was happening to me but of course, was also affecting them.
The business I was running became irrelevant and I closed it. Having used social media daily I ceased all posts and literally shut down everything. At this point I had no idea where things would go. I was to have major surgery in 8 days, that was it, out of my control. What would happen next was the unknown and so I had deal with the here and now and the business felt very much in the past. Also, I didn't want to speak to anyone outside of immediate family and friends so there was no way I would be tweeting my experience at that time.
I suppose looking back it was a kind of limbo, the days waiting for surgery were the only time I actually had cancer, prior to that it hadn't existed to me. Now I was having to wait for it to be taken out, along with a kidney that I suddenly felt rather attached to. The wait wasn't made easier by the pain I was in.
During the 8 days I was home I continued with my diary which had been started in order to remember detail of what was happening to me and I'd continued to help me make sense of it. Things I recorded included sleep patterns, painkiller amounts, snow falling, my daughters 21st, what I ate, visitors and tears. I also made accounts of having to tell family and friends the truth about my hospital stay and the other visit that was looming. Until then no-one knew that I had cancer and telling others made it more real.
My dreams at this time were surreal and may have been made more colourful by the cocktail of drugs I was taking. A lot of what I wrote at this time concerned family and how I felt, these words will remain private and reading back over them almost transports me back to that time, so difficult for all of us.
A couple of days before the surgery my husband took me for my pre-op at Good Hope. This was my first trip outside since leaving hospital and it was lovely to be out in the car. The pre op involved answering a list of questions about my general health and personal info, addresses etc. I had blood tests, an ECG and was weighed and measured - apparently I had the pulse of an 18 year old!
The night before I was feeling a bit sick and unwell but this was probably nerves, I've written in my diary 'I really enjoyed my last supper' Haha I'm not sure I was full of confidence at this point!
To use a cliche the last week had been a rollercoaster of emotions, not only mine. My family had loved and cared for me whilst dealing with the worry and uncertainty of my condition. I'd seen friends break down on hearing my news, I'd even had one offering me her kidney! I'd closed my business and dropped out of my routine quite comfortably, nothing else seemed important at the time.
One more sleep and I'd say hello to Heartlands again and goodbye to cancer (and a kidney). The wait was over.

Friday, 9 August 2013

Day 6 Rude Awakening 3 The Eviction!

Following my Q&A session that morning I was told that pending blood test results taken earlier I may be able to go home later that day. This was my 6th day in hospital and I was feeling really rough and very tired and fed up so the thought of home was wonderful, even though I knew I'd be back soon.
After lunch I fell asleep. I was in an all female bay of 6 which was on a mixed renal ward. At that point I had a cannula in my hand for morphine pain relief but the catheter had been removed.
What happened next still shocks me and those whom I relay this to.
I was woken from what must have been a really deep sleep by a sharp pain in my hand and could hear someone saying my name. As I came round there was a Health Care Assistant by the bed removing things from the side cabinet. Standing over me was a nurse who was removing the cannula (hence the pain). As I started to wake I asked what they were doing and was told I was being moved to the discharge lounge to go home. By now they had my legs out the bed and all my cupboards were emptied onto the bed. The HCA was trying to put my trousers on and I'd started to cry - the first time since I'd been there. I told them I'd not had my blood test results or phoned my husband but they dismissed this and continued stuffing my belongings into carrier bags.
Then a smart man in a suit arrived by the bed and introduced himself as the surgeon who would be removing my kidney. The nurse and HCA stopped what they were doing, obviously not expecting him to be there. I was perched on the edge of the bed, trousers round my ankles and belongings stuffed in bags around me. Awkward silence... The surgeon then asked if I was ok, was on on morphine (I was crying so probably looked a mess). I managed to get myself together and said I'd been woken by the cannula being removed and told I had to leave. The surgeon then addressed the nurse and HCA and said I'd not be going anywhere at which they scurried away. The whole bay was silent and watching.
The surgeon then proceeded to introduce himself properly and explained he'd been on holiday and as he now had a list to follow my operation wouldn't take place for 10 days. He said normally after an embolisation they would remove the organ as soon as possible but unfortunately this hadn't been possible. He said that due to the embolisation the kidney would be swollen and may stick (not sure what to) and so surgery could take longer and dependant upon what they found may be open surgery although keyhole was planned.
All of this information was being given following the rudest awakening from staff at the hospital and so I was understandably distressed. As the surgeon left he went to speak to the sister, presumably about my treatment as he was not happy.
I took myself off to the toilets and for the first time since arriving at the hospital sobbed and sobbed. Looking back I think that the seriousness of my condition had just hit me full on but it was obviously not helped by the rude and thoughtless nature by which I was being evicted from my hospital bed.
When I returned to the ward the other patients were also visibly upset and I sat with a lady who comforted me as others expressed their disgust at what had happened. The mother of a young girl in the bed opposite said she'd only ever seen this sort of thing on hidden camera footage on the TV, it really was awful.
Then the nurse who had woken me returned with the HCA who was also very upset and the ward manager had been called. They asked me to go back to my bed and speak to them which I did but refused to have the curtains drawn around. The nurse said, 'I dont think you understood us we weren't making you leave'. That was it, the lady next to me said 'Yes you were we all saw it' and the mother opposite joined in. The staff were obviously worried I'd complain and were desperately trying to cover their tracks.
I assured them I was fully aware of what had happened but that I had no intention of complaining. What's the point it wasn't going to change my situation. I could see the HCA was genuinely upset and knew she was only following orders as was the nurse. I understand the pressures placed upon them and the need for beds, what they did to me wasn't personal it was just badly handled. I'd get over it.
Following this I was visited by two other senior nurses, one a sister who both asked if I was ok and if I had any complaints. The truth was that if the surgeon hadn't arrived I would have been sitting in discharge lounge waiting for my husband to collect me.
My blood test results came back ok and later that evening I was discharged and my husband collected me from the ward. Leaving the others in the bay was really emotional, strange the bonds you form in such a short time but I knew I'd be back but next time for surgery.

Thursday, 8 August 2013

Dressing up and feeling down

Before I continue with what happened next I thought I'd skip forward again to the here and now and how the day to day is feeling, minus one kidney with a tumor.
On the whole I can honesty say that in just over 4 months it's not immediately obvious and my cancer journey could be 4 years ago as life pretty much goes on as normal. Those people that don't know what I've recently gone through wouldn't need to be told as it has no bearing on what I can do physically. That said, I am still slightly slower and a little more awkward when walking but that's due to subsequent back pain (I'll get to that).
The thing that has bothered me personally more is the adjustments to my wardrobe and appearance that I've had to make. I had expected there to be discomfort on and around where the scarring is but hadn't realised it would carry on for so long. Being a scar of course there is the obvious appearance of said 'stitch up' that is not something I really want to show and tell...!
It was my left kidney and it's 7cm tumor that was removed and fortunately this was by key hole surgery. Unfortunately the kidney and it's tumor were somewhat swollen so the 'keyhole' is rather more 'manhole' in size, approx 8cm. I also have 3 other little incisions that surprisingly seem more irritating but this may be because they are positioned nearer where my waistbands are.
These additions to my body art are the reason my clothes are either uncomfortable to wear or just not sitting right as I also seem to have changed shape! I think that is possibly due to me not being able to exercise and so being naturally slim I have acquired a belly for the first time since having children and so I'm not feeling at my most attractive right now.
Basically I can't wear anything that has a waistband right now unless its loose or elasticated so jeans are difficult unless I leave them undone (which I do regularly). I wont wear anything tight fitting that may highlight my shape or clothes that don't quite reach my waistline so half my wardrobe is currently useless.
The things that don't aggravate my scarring are generally clothes that I wouldn't normally wear and so I feel awkward in them.
I suppose I should be grateful that the reason for my clothing calamity has been removed and caring about what I'm wearing should be the least of my worries. It's just that it's a daily reminder for me of what has recently happened (that and catching myself in the mirror). To everyone else I'm looking fine apart from a slightly strange walk but that's not attracting too much attention.
I should also be grateful for the fact that my job as a dressmaker enables me to make clothes so what am I waiting for...time to design a whole new look!

Wednesday, 31 July 2013

Day 6 Questions Answered - It's Kidney Cancer

At this point I had seen several doctors and a consultant along with different registrars on ward rounds but still hadn't received any definite diagnosis. Neither had my husband been present at any of the various explanations of why I was in hospital or what had led to my admission. This was apart from day 2 when a registrar on a ward round told me the lump bleeding inside my kidney was cancer - news given on my own with no further explanation. Since then I'd also been told I'd lose part of my kidney, the whole kidney, possibly if they stopped the bleeding no surgery and that the 'lump' wasn't yet identified.
For this reason together with my husband I had written down questions that we needed the answers to. As it was impossible to time visiting hours with doctors ward rounds the answers to these questions would inevitably be given to me alone, but we needed answers.
The doctor on that mornings ward round was not anticipating being given 12 questions to answer when he came round to see me, neither was he expecting to have to wait while I wrote down the answers. However, I needed those answers and thankfully he cut to the chase and I felt I finally knew what I was dealing with.
So here are the answers but I've also included what actually transpired as things don't always go according to plan;

Q.When will I have the operation?
A. 3-4 weeks
The surgery actually took place 9 days later. I was told it would have been immediately after embolisation as a rule but the surgeon was away and on return he already had a list to follow.
Q. What are you removing and what is the cause and how do you know?
A. Cancer. We know a dirty big tumor when we see one.
Told you he cut to the chase. No cause given.
Q. What will be the procedure?
A. Keyhole or open, the surgery will depend upon the size of the kidney as it will have swollen due to the cancer bleeding and subsequent embolisation. This can also cause the tumor to stick and therefore be more difficult to remove hence usually removing sooner rather than later.
Q. How long does the operation take?
A. 2-3 hours
It was actually 5 and a half hours.
Q. Has the CT scan shown full extent of the growth or will the operation be exploratory?
A. Yes.
That's all I'd written so I'm guessing it was exploratory...
Q. Will there be a biopsy to determine the grade of the growth?
A. We know what it is.
I didn't get more than this and as you will find out, it was over a month post surgery until I did.
Q. Is there a possibility of reocurrence?
A. Always is.
Another succinct answer.
Q. What is expected duration of hospital stay post surgery?
A. 2 days
It was actually 5 days.
Q. Explain post op procedure and limitations?
A. 6 weeks no chemotherapy or radiotherapy if confined to the kidney.
That's all I wrote.
Q. Referral or revue venue post op?
No answer.
Q. Operation venue?
A. Heartlands, Birmingham.
Q. Will my husband get a chance to speak to the doctor/consultant?
If he's here early morning or late evening.
Shame that didn't fit with visiting times...

Well that's it. All I needed to know about kidney cancer given in a ward round visit on day 6 of my hospital admission, alone.
I was grateful to know what I was facing and felt more prepared now.

Friday, 26 July 2013

Day 5 High's & Lows

Yesterday's embolisation appeared to have worked and the bleeding from the tumor had stopped. The procedure had knocked me about a bit so I'd slept on and off yesterday but at 2am on St Patricks Day I was wide awake.
Usually this would be a day of celebrating which of course involved plenty of alcohol and dancing. Here I was lying in a hospital bed in a considerable amount of pain. There was a lady next to me vomiting continually and another young girl crying on and off. Things always seem worse in the middle of the night but this was a new low. Things were about to get worse though as when the nurse came to check my wee it appeared that I'd started bleeding again, the embolisation may not have worked.
I was dosed up on morphine and monitored closely throughout the night, I have to admit at that point I was very frightened. Eventually as the morning arrived the bleeding subsided again and the pain relief started to kick in - as did the texts of Happy St Patricks Day and bet you're off to the Parade - if only they knew! I had chosen to tell no one about my hospital admission, only close family were aware at this time.
One of the nurses on duty this day was Audrey and she was an angel. Having seen what I'd been through during the night she made sure my husband was contacted and could come in to spend the day with me. It was a first as far as St Patrick's Day's go, hot chocolate in a wheelchair was not what I'd planned but it was a real treat and a chance to have some time outside the ward to try and make sense of what was happening.
It also gave us time to write down some questions for the doctors as I had not been formally told what exactly the diagnosis was and my husband had not seen any doctors at this stage. This is something we both felt was wrong, after watching TV dramas like Monroe or Holby City you presume that with something as serious as cancer the news would be broken to you with a member of your family or someone close, at the very least a nurse. My news came via a ward round doctor in a vague manner just after I'd woken up - not how I expected to find out. Also, there was no way to ensure my husband could be present when a doctor came to see me as the ward rounds varied and visiting times are strict so all diagnosis so far had been given to me alone. By writing down questions between us we would at least be able to hopefully get some straight answers.

Thursday, 25 July 2013

4 Months Post Surgery Progress

I had to leave the blog for a while - it will become clear why once I return to where I left off. Firstly I thought it best to record where I'm at now, 4 months after surgery. It has also become clearer to me why I need to write down my cancer journey as I still struggle to find anything or anyone to compare my experience with. Kidney cancer is on the increase and yet is still one of the least common of the diseases and therefore less information is readily available.
Having had keyhole surgery to remove the tumor and kidney, the scaring was not as extensive as that of open surgery. However, they had to get it out somehow and the scar left is still about 5" long but its the smaller incisions that seem more sore still (where they poked the keys in presumably...) It was the left kidney and my insides seem to be healing according to plan on that side. I am limited physically still with what I can lift and carry etc but it's not apparent unless I tell people.
The problem conversely has been with the right side where I am experiencing quite severe back pain in the kidney area. Obviously as I need to safeguard this one the GP has been carrying out tests to determine what is causing the pain. In the meantime I am taking painkillers when needed - not ideal but needs must. I'm currently awaiting results of more xrays and blood tests but don't expect anything sinister to come from these. The likelyhood is that this has been caused by the surgery and may be a result of me compensating for the initial pain in my left side which is easing now.
Emotionally I still feel cast adrift as far as hospital aftercare goes. Having recently taken my Mom for her breast cancer check up its remarkable how different the cancer care is. The appointment was in a purpose built breast care centre with specialist nurses and everyone from receptionist to doctor was positive and helpful. My only appointment since surgery with the consultant was  together with renal patients, involved a 4 hour wait and made me feel hopeless afterwards. Kidney cancer it seems is a case of get it out and get on, job done. In my Mom's case she is part of breast cancer support groups and visits to surgery are like school reunions, everyone has either been through, going through or supporting someone with the disease and the vibe is a good one of help and support.
I will return to where I left off with my kidney cancer journey shortly. I can just remember shortly after diagnosis looking on the web for similar experiences and finding nothing. I have never been interested in what the cancer does as there's little I can do to stop that but rather how the person copes which is why I'm writing this down now.
I still feel lucky, they found it, removed it and I'm recovering relatively well, my GP is good and very supportive and aside from an unsightly scar and a slightly lopsided gait I'm pretty good. Just need to return to my hospital diary and relive the remainder of my story. Maybe tomorrow...

Thursday, 25 April 2013

Day 4 - Second Rude Awakening!

Woken this morning by a man shouting a tirade of abuse at a member (or members) of staff, to repeat much of it would mean using the C word again and I don't mean Cancer. After last nights musical beds I can only presume that the ward had been even more short staffed that normal. This particular man it seemed was wheelchair bound and had needed to use the toilet but no one had answered his buzzer - he was absolutely furious and was determined everyone was going to hear why. We couldn't see him or any of the staff but every word was audible and he did not mince those words...! When he finally stopped it all went very quiet until an elderly lady opposite said, 'I really enjoyed that!' I think maybe he spoke for many people on the ward, although probably in more colourful language.
When the breakfast was brought around I was told that despite having my embolisation procedure that morning I was now able to eat and would not be nil by mouth.
Soon after I was taken down on my bed into a theatre like room with lots of equipment where the interventional radiologist introduced himself and explained what he was going to do. I was then prepared by 2 of his team who then discovered I'd had a coffee and rice crispies...and had supposed to have been nil by mouth! They were not happy with the ward staff who had also taken out my canular so another had to be put in. 
I was made to feel very comfortable and the team were all very reassuring but I was still a little scared as the procedure is carried out while you are under local anesthetic. I had forms to sign to say I understood the risks involved - I'm glad I'd not looked this up before I went in! A tube was fed up through a small hole made near my groin and up into the artery which was feeding the blood to the tumor, this was then blocked with small beads. I felt very little and although the screens were above me I chose not to watch what was going on. I did however note the music playing which was quite surreal as I was a well know Irish piece called Farewell to Erin which I have played myself many times.
When the embolisation was complete the radiologist himself took me back to the ward which was really nice, the whole team had been extremely kind and reassuring. In fact they said that it was not usual for them to be brought in on a Saturday but I had been on an emergency list and so I am very grateful for their care.
The rest of the day I spent mostly sleeping, although not particularly invasive the embolisation had tired me out, maybe the worry, I was however confident it had gone well and hopeful the bleeding had now stopped.