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).

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.

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