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.

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.

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!

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.

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

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.

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.