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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.