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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!