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Saturday, 28 September 2013

Degeneration

I have found a good friend in Jane from the forum, she is intelligent funny not that much younger than me and to cap it all used to be married to a Moroccan and both her boys are mixed like mine. She however managed to extricate herself and find a good man in Al and went on to have a little girl too.
She posted something on the forum the other night which I could so strongly relate to, she had accepted that she will not live a long life. Me too, not everyone wants to hear that 'oh don't say that' 'oh you'll probably be around for years' everyone means well and likely feel that to except yr limitations is to give up. Well ironically I still hope to be well, I still hope to see my boys grow up but I know that this  isn't going to happen.
I booked some theatre tickets earlier On in hone year before I was taken ill, I have stopped doing that now. I missed the performances because I was too ill. I can't count on the future anymore and have realised sadly that I am unlikely to go abroad again and visit beautiful countries. The insurance is too high and the risk too great. So already I am limited through this disease, already I cannot take it for granted that I will be here if I book in advance.
Likelihood is it will be a while yet but my body is starting to fail me already. In the six years up until my last op it's soldiered on and not give me much in the way of grief, a niggle here and there. But now I have back pain and PV bleeding that increases the more energetic I am from the pelvic tumour, so caught between a rock and a hard place in respect of getting my stamina back. I have also developed a problem I think called bppf ......that's short for a long worded condition which basically means that if I get up quickly and more likely if I turn suddenly in bed the room starts to spin. It started when I was in Orlando Florida last year and was so bad at times I would hold onto the bed in case i fell off! Whilst i was in hospital in tommies I told the surgeon who got me a head scan just in case, everything was fine, it isn't a nice sensation but I am getting used to it and just close my eyes and remain still until it passes.
If feels like the start of the slippery slope, how long will I be able to manage the pain of the tumour in my spine? At what point does the pelvic tumour become a problem, and my lungs they aren't feeling up to scratch at the moment but that could be my general malaise. Such a guessing game.

Monday, 16 September 2013

So much for making plans!

Well no sooner had I arranged to head to Devon than I started to suffer some excruciating pains. It started on the Saturday 20th July the weekend that Jade Joes girlfriend had planned a mad hatters tea party in my garden. I was meant to make cup cakes but as the weekend went on mad the pains continued to rack my stomach they were soon off the menu.
The party went ahead whilst I spent the day in bed. Tuesday I should have dropped joe and his mates and jade to gatwick as they were flying out to southern France for a week staying in Elliot's mum and dads French apartment.
They left around 2am I didn't settle and around five am decided enough was enough! I did call for an ambulance but was told they didn't have any available, I felt a bit guilty calling one anyway so ended up borrowing money off Zak and getting a cab. Adam was brilliant but obviously worried.
I walked into a and e and sat with a few people complaining about their wait and detailing their problems to each other. One by one they were called in triage and then came back to sit in the red seats, I was next and told the nurse about my symptoms and history and afterwards assumed I would return to the red seats, but she told me no come this way and took me through to a cubicle with thankfully a bed I could lie on.
A registrar came to see me, I would see him later on his next rotation in HDU. The doctor directed the nurse to give me an NG tube.....awful. She tried my right nostril but it wasn't having it at all and the pain was awful, so she put it through my left nostril instead which I wouldn't ay was easier it is such an uncomfortable process but was better then the right. By the end of the procedure my nose was running and my eyes were streaming.
I don't think it was that long really before I ended up on a ward, cedar ward to be exact.again I was in an end bed next to the door. Across from me was ester who had been in a car accident it turned out, initially I found her difficult but then as the days went on realised that she had mental health problems and probably a slight learning disability. She was a bit of a kid at times and totally inappropriate in her requests for example anyone who appeared on the ward would be called over in her hope that they would answer her questions. She was very sweet and gave me some mango juice but then wanted some back. She did the same with rolos telling me to shut my eyes before she gave them to me, having sussed her out I offered her some back which she eagerly accepted. If she had visitors it was fine and from the morning till visiting time at three she would constantly ask what the time was every half hour!! If she didn't have visitors and you did she would ask questions butting into the visit where she could.
Next to me and in a couple of days opposite me when I moved to a window bed was Brenda. Brenda had been very ill and nearly died and had already spent three months in hospital. She was a proper south Londoner with the accent to match, as I got to know her it transpired that her son was in prison, something to do with his girlfriend.she trusted no one and had been hood winked by men that she had been with. The nurses she loved to think she got on with which she did on the whole, but she also used to get annoyed when they didn't come immediately that she called them, looked to me that they were busy and prioritising, but Brenda thought they couldn't be bothered. She did have a difficult situation with a Stoma that leaked as it was in the wrong position due to the need to be her when she arrived. We did get on though and I think she wanted to become lifelong friends, but I headed off the ward after just over two weeks to have my op and didn't return.
The surgeons didn't want to operate but after more than two weeks of no food and no gas coming through the Stoma they decided enough was enough. I was wheeled down to surgery for the third time in my third hospital on the 9th Aug having found a met in my spine on my ct scan since arriving at hospital they wouldn't give me an  epidural, but as the last two hadn't worked I wouldn't have wanted one anyway.
I remember the anaesthetist putting me under and the next thing I remember is waking in HDU. They had found adhesions all through my bowel, three surgeons got inthere and had a go all female....in the end they got to my small bowel which they couldnt work on but luckily found a way of by passing it which is what they did, the surgeon made it clear that i could not have continued without the op. i was very lucky that they could do something there was a chance they would go in and not be able to do anything. The Macmillan doctor had advised that I get my affairs in order before the op...I did getting my will signed the day before!!
I had a little section of ward to myself and very nice one to one nurses. Well in the main anyway one nurse I hardly saw. I have little memory of being there apart from the interminable search for a vein as mine are so bad. A junior doctor tersely looked and suggested my foot, I said I was not going to have a line in my foot and she was not sympathetic at all, I was causing her more grief than she wished of at the time I think. In the end a consultant anaesthetist who was really lovely used a portable ultra sound machine to find a vein. I told him that they wante to put it in my foot and he agred that was not appropriate, I thought I heard him tell the doc in question that the foot was not acceptable or maybe it is wishful thinking.
After a weekend in HDU I moved to Juniper ward the sister ward to cedar. I managed to get my own room here which was good. Had to wait another couple of weeks before I was able to leave it had been a month since I arrived. Carol next door arranged to pick me up outside the entrance  which wasn't too far from my room. When it got near to the arranged time I pressed the call button for help with my stuff but no one came so I ended up carrying three bags of stuff to the car.
I took the lift down and walked down the corridor I was feeling quite weak already and struggling through the window I could see carol standing on the pavement looking out towards the hospital entrance I was willing her to look back and check the route I would becoming from but no she looked left right but not behind!! As I got to the exit a lady asked if I needed help as I was wobbling by now I just dumped the bags on the floor before I collapsed as carol finally saw me. A small amount of frustration which at the time seemed the worst thing I had experienced....it wasn't and at last I could go home. A summer spent in hospital!!

Thursday, 18 July 2013

Holiday time

I am in the process of seeing if I can take the boys well the young two on holiday in August to Cornwall, I have a good friend who has a farm on the banks of the tamar and hope they have the room for us to stay with them.
We have been down before when Zak was six and Adam 10 and they loved it, playing on hay bales although it was dangerous and driving phils car around one of his fields in turn with me sitting in the back.
Phil is like a brother really he is an only child too and we met when we worked together when I was 19 and he 17.
He is now with another friend Wendy and she moved down in April after through me they were reacquainted, we all worked together in another home in the 80's in fact when I was expecting Joe Wendy gave me her old clothes, she had three girls.....they had told me on the scan that he was a girl!! So for a brief period he was resplendent in pink baby gros!
The trip landing has reminded me of good times, as a child visiting wools Combe in north Devon every year, building sand castles on the beach with dad and body surfing before the beach was filled with surfers dragging their boards behind them. Rolling down the dunes that circle the cove. Visiting lee and horse riding, the year that they let me gallop out on my own along the cliff. Looking in rock pools for crabs and sticklebacks. The excitement of going to visit my friend Jayne who had moved to Plymouth after we both moved from aldershot. It did really always seem to be sunny, so hot that on the beach we would get four rocket lollies one for me mum and dad and one for the dog a liver and white cocker spaniel called pal, on the long journey from Norfolk to Devon she would be my pillow in the days before seat belts, I would and my radio in the back too and remember listening to dont go breaking my heart as we trundled along in dads old rover 80. We knew we were near when the roads started to narrow to the point that one of the cars would have to reverse into a passing lane to let the other through.on the way down we would visit wookey hole at cheddar gorge, but never visited stone henge which I would hopefully visit on the way down with the boys if I take the A303.
So we will see Devon just means happy sunny times to me and I would love to go back again, here's hoping Wendy and phil ok the trip!

Wednesday, 10 July 2013

Nearly there

I haven't popped anything on here for a while I have been busy feeling crap....my body is letting me down for about a month I have had griping pains, determined it is due to constipation which I have never really suffered from before, having a colostomy bag men's that I have no input into pushing range along and have to rely on medicinal means. The colicky pain continued on and off whilst I was at Glastonbury and in the end on the night the stones played their historic gig at the pyramid stage I was round the corner in my tent listening to them on the radio.
This I have to say was also due to Zak being caught by the child catchers once again, he seems to make this a habit and I thought we had finally finished with them now he knows where he is going at Glastonbury. It turns out that during dizzee rascal he got pulled out by security and once they had him they wouldn't let him go till I got him.
I had arranged to meet him for chic at the west holts and earlier that day had gone there with him so he knew where it was. I waited for him during which chic played and me and my friend danced and danced to the point where a woman came up and said thanks for making her night!! The gig was brilliant and topped off at the end when Noel Gallagher walked past, two woman who should know better became very exited at seeing him and I shouted hello to which he turned and looked and said hi!!
But still no zak, so I headed back to the tent which was right on the other side miles away. I headed to the loos before going back to the tent hoping Zak would be there but never got there as whilst in the loo the phone rang.
Hello it is the police here we have Zak!!! Please can you make your way to worthy farm to collect him. It was now around 1.30 am and the thought of having to go on another march I found completely impossible, was there no way to meet them somewhere? Apparently not, so I got my head around the fact that I wasnt going to head to my bed and made my way to worthy farm situated above the pyramid stage.
As I walked along a young lad started walking with me, he told me I would have to help him find his tent! He had decided to remove his contact lenses and couldn't see a thing....we walked about five minutes and suddenly he said here I am bye! Just as I was wondering how much help he thought he needed.
After that I stopped at a security shelter, they are dotted all around the camp sites and asked if I was going the right way? The guy I spoke to told me he would walk with me and show me, his name was tim. We started to chat and in the end I explained that I hadn't been well and that this walk was becoming difficult. I said I had cancer as I truely was finding the going difficult somehow you don't want them to think that you are a wuss. We stopped at a bench and I had a sit, during which it transpired that he was arranging to go and get Zak himself instead of me having zero walk. I have to say I was soooo relieved and waited chatting to another nice security woman until he appeared with Zak and a social worker.
They walked back with us and Zak led the way clearly knowing his way around, she said it was clear that Zak was sensible and that everything was fine. Zak was very annoyed at having missed chic, he thought they would let him go once he was out of the crowd.
So we ended up back at the tent around 3.30am I spent the following day in camp during which I had a very scary moment. Everyone had left and I was changing my bag in the tent, it was only when I had removed one and was abut to put another on that I realised that it hadn't been precut!! Everyone's stoma is a different shape and the company usually cuts a hole in the bag so that the stoma fits in perfectly, I was faced with a small hole s that needed to be larger. I started trying to pick at it bit by bit when suddenly Brendan's friend Peter appeared...did he have scissors? Yes he did on a Swiss Army knife!!!! Catastrophy averted I sat and cut holes in all the bags I had, had he not turned up I would have been in quite a pickle!
Zak and I went to see roderiguez ....sugarman in the afternoon which we both enjoyed then headed back to the tent. By then I was knackered my stomach was playing up again and the thought Of heading out to the pyramid stage, simply felt impossible. Zak headed off and so there I was in the tent listening to the stones live on radio two.....I was nearly there!
Since coming home my stomach has still been bad so in the end I downed a couple of sachets of movicol which seemed to do the trick. Sod's law once that was sorted my back started to hurt badly, real throbbing pain, paracetamol and co coda mol just took the edge off it but today I had ibuprofen and miraculously the pain is almost gone, I hope that this means it is a flare up of my old muscular pain rather than anything more sinister.
I am hoping that

Monday, 27 May 2013

Here or there?

I am trying to determine today where I come from.....a simple task for most people but as a child I moved around so much that by the time we stopped I had lost a sense of having a home town.
I was born in woolwich, for years it was just the place on my passport because I never went there again. My parents lived on the other side of London at the time in hownslow near heathrow. Dad was in the army and working in woolwich at the time and I was born at the mother and babies army hospital, it no longer exists, but years ago when passing the sun in the sands roundabout dad pointed up towards shooters hill and said 'you were born up there'
Ironically years later in 1988 on the 23rd sept which was my parents anniversary too I would get married in woolwich registery office, I didn't want to marry where I lived in Lewisham  as the surrounding area wasnt so pretty and the inside of the woolwich registery office had a sweeping marble staircase and wood panelling in the hallways, much better for pics so I used my friends boyfriends address as mine.
In 1964 dad was posted to Singapore, I was only two or three but I do have memories of the time that we had there, just glimpses. I remember walking up a hill with my parents a bit in the distance in front of me. On recollection I can feel the distinct fear that I was going to lose them and get left behind and started crying, another memory is of looking at the moonlight through a bamboo woven roof as mum and dad said goodnight and gave me my toys...mum always said that this never happened but then one day remembered going to an island for a little holiday. I guess it was such a change for me that I remember those two incidents after arriving there. I also have a picture my dad took of me playing in a storm drain, I can remember him calling my name and turning to look and him taking the pic, I think the pic is on this blog somewhere.
So then Colchester, tip tree to be precise whe I remember the tonibell ice cream man coming and having measles and my mum giving me a Chrysler flavoured syrup for it which tasted lovely. I can still remember the layout of that bungalow and it was where I fell in love with the monkees at about age five when I used to walk next door to watch them because they had a tv and we didn't.
After Colchester aldershot, we lived in the army housing estate and that is where I met Jayne, who I remain in contact with now, again pics else where on the blog. We were both onlies but our parents we add opposite ends of the scale mine older and jaynes very young but our parents became friends and remained in contact for years, both our dads were called Peter too.
I went to primary school there, it was my first day at school and not long after I had a big argument with a girl and hid in the Wendy house refusing  to come out. Later I would be in a class that made a huge wire and papier mâché dinosaur and I so wanted to take it home but mum wouldn't let me. Susan had fillings and I wanted some too and mrs o Brian's son used to come in a wheelchair with her and we gave her and him apples. We caught ladybirds off the bushes on the estate and kept them in jam jars with holes in the lid and a bit of greenery.
One day the dog a cocker spaniel got out and my mother ran through the estate trying to catch h, one day she disappeared altogether and a few days later we found out that she was living with a family around the corner and got her back.
Dad taught me  to ride a bike and Jayne and I would spend the day up in the woods and at the playground on the swings singing boom bang a bang bang.
At the military tattoo dad would be in a tent taking people's blood to let them know what blood group they were....would never happen now!! Dd used to come home for lunch in his uniform, just after I had finished watching with mother and around the time I would listen with mother, he would sweep me up and kiss me and i could feel the coarseness of his starchy green jacket.
I also remember one day going to auntie lily jaynes mum and fainting, I later found out it was  the day that mum  went into hospital. For a while it was just me and dad and I would stay at jaynes sometimes. One day dad took me to see mum on the way we stopped to see some donkeys and dad took a picture of me with one, we continued and all I remember is feeling a bit scared, there was a woman with a black beehive type hairdo walking down the corridor laughing into her brush with a friend, mum was subdued and I didn't really understand what was going on....it was another episode of manic depression, now known as bi polar.
When we left aldershot I thought it was for another town and then later another...but no! We moved to Gt Yarmouth in Norfolk because dad got a job there in the haematology department at the hospital.
 I didn't realise this at the time but he and mum decided to settle somewhere for my education. We
didn't know anyone in the area and as I went to one side of the country Jayne and her parents headed off to the other in Plymouth!!!
Initially we lived in a holiday camp at mundersley and I didn't go to school, I guess because the job was ready but the house wasnt. After a short while we went to caister, second avenue right opposite the beach. I did start to attend school there but only for a short time until we moved to bradwell and I started at home field infant school.
I was new not local and it was the final year before we moved to the junior school. My teacher was mrs peek a large woman who wore a brown tweed ish suit and was very stern. I quickly worked out that she had a table of favourites, lee I remember was on that table and Deborah who was meant to look after me but ended up bullying me.
I sat infront of mrs peeks desk where she could see me with Alan fitzgerald, a naughty boy which meant I must have been too. She shouted at me a lot, I was practically deaf and later went in to have adenoids out tonsils out and grommets in. Another fainting day when mum and dad left me there.
Mrs peek was awful, tore my work up infront of me, told me off in assembly made me stand in the front, told the other kids to go and left me there on my own. I waited and waited and decided she had forgotten me I crept back into class and when she saw me she bellowed, 'did i tell you to comeback ' and sent me back to the hall, the secretary found me crying in the corridor and took me back.
I walked all the way home across the village because I had left my book at home, mum complained that she was giving me books I had read when I was five! I have never ever hated a teacher so much. Years later mum was astounded to hear what she had been like, she had been the perfect teacher in their eyes, from how she interacted with them, she knew I was deaf but still got angry when I didn't answer straight away.
I met new kids at my next school in the village not least Debra dye, she lived on the next road to me and we spent loads of time together in and out of school. We made blue Peter rooms for our dolls out of card board boxes, used make up for the first time. Debra and I drifted when we went to grammar school. I went to see her in the eighties as I heard she had a brain tumour, she died about 15 years ago.
Oriel grammar school was ok, I could have made better use of my opportunities but I didn't, never one for studying or revising. I had lots of parties and they were always well attended, initally at home and later in the local church hall, mum was the booking clerk which was very helpful and dad would come as the appropriate adult. Otherwise friday night was spent down the ocean rooms, doing our disco moves. I left in 1981 after spending the summer working at woolworths and at tiffanys nightclub on the seafront.
So then I landed in Lewisham and have been here ever since, long than I have lived anywhere but I don't call it my home town, gt Yarmouth was where I remember growing up, my roots go back on dads side in Sussex near Hastings and mum in the Lake District and I do feel a sense of belonging there although in never lived there.on Facebook I have hometown as gt Yarmouth but should it be Lewisham?

Sunday, 28 April 2013

Hannah

We lost Hannah last night.......a beautiful,vivacious, intelligent, elegant young woman. Someone who had her struggles in life without the addition of a bowel cancer diagnosis.
I can't actually pin point the day that I first met her, it feels like I have always known her....she was kind and caring even in the midst of her own turmoil she would think of others. I found out tonight that whilst I was in hospital as she became sicker she asked after me, I shed some tears after that news, they have been pouring on and off all day, poor Zak my youngest keeps double taking me and  wondering  whats up? I only wish that I had had the time to talk to her again but by the time I left hospital she had become very poorly. Oh I did explain to Zak, he said it was very sad especially as he met her last year when we went to cheer Dafydd on when he carried the Olympic torch, he said she was really nice.
I will treasure a handwritten card (she had beautiful handwriting) that she sent me to say thankyou for a card and gift I had sent her, so thoughtful, so lovely.
I will remember your laughter, your fantastic smile your friendship....I am thankful that you found love before leaving, mark was there to the end, not quite two years but he was there when she needed him in her corner and isn't it better to have the experience of true love than never to have had it at all? I hope that gives him solace in the hard times ahead.
Hannah was only 30, all her life ahead of her and snatched away by a disease that if caught early can be cured........this isn't just about old people, the bowel cancer community are fuming this needs to be resolved so that no more parents have to lose their child and everyone gets to live the life that they were destined for.

Thursday, 25 April 2013

Back to the room with a view

Around The middle of March I suddenly felt unwell. Something like a bug I thought, temperature, lethargy lack of appetite.......so just ride it through and take pain killers. So I rode for a week and another by this time I wasn't even getting out of bed, the boys were bringing me glasses of milk which was the only thing I fancied and copious amounts of orange squash as I felt so thirsty.
By week three I had enough and called the enhanced recovery nurse I was in contact with through the surgery I had at tommies in Jan. She spoke with my surgeon who suggested I turn up at his clinic at guys the following day.
Wednesday 3rd April and I haul myself out of bed, manage to find something to wear leggings and a sloppy jumper easy......wash my hair..hard and dry it.....harder. I realise I won't make the walk to the station so drive the car down, park it precariously on a double yellow and stick my disabled badge in the window hoping for a sympathetic traffic warden. Just as I am about to get out the phone rings, it's Stuart from beating bowel cancer asking if I can do an interview with sky later that day as the is piece running on he cancer drugs fund......I wish I had the energy and time but had to decline. This was to be the last time I used my lovely expensive phone, somehow I managed to lose it on the way to the hospital, I wasnt with it to be fair but it couldn't have gone at a most in opportune time as once Mr George w and examined me he decided I should be admitted.
The ward is in St Thomas's so they got me a cab and I managed to negotiate the interminable lift to get to the ward.
On arrival I met Sarah a lovely nurse who only just started working there a couple of days after I had my op in Jan, like meeting an old friend.
Again I ended up in the worst bed on the ward near the entrance in the far corner, luckily a couple of days later the bed with the view became vacant and they swopped me over to the view of the London, the Thames and Westminster bridge.
Oh dear somehow I have just lost the rest of the blog I just wrote, not in the mood to try again so I will cut to the chase......
A CT scan and MRI indicated a mass around my bladder, this was impeding the left ureter and
caused it to become restricted in turn causing the left kidney to swell. Urology were sent to look at it and discussed stents and drains into the kidney. The hope also being that whatever the mass was when removed would resolve the problem.
I ended up having another smaller op under GA where they discovered that the mass was a large abscess, no wonder I felt so bad....this was cleared and biopsies taken of other tissues which turned out to be a return of the tumour....this is quick in the scheme of things ESP as to date my tumours have meandered along slowly. It doesn't happen too often apparently but in my case it has.
There isn't anything left in the way of surgery really but my consultant pondered on whether brachiatherapy might be an option. Planting radio active seeds straight into the tumour....the MDT discuss me on Monday so I shall have to wait till then to see what they think.
Can't say it isn't a pain that I am back to square one with less options, but I don't feel it's over yet, chemo is still available though at this moment I am not up for it I just want a bit of time feeling normal again, I am still fighting with energy levels. I am not wailing or bemoaning, what's the point?
































sooner I got my paracetamol the better I would feel. At handover at 8pm I told the nurses that I was
starting to feel rough and they assured me I would get my tablets once they had finished. I waited and waited, the night nurse I hadn't met before Janis, I watched her come and go until after two hours she sat by the opposite bed on her phone chatting to her family...when she finished I asked for my drugs. When she came to give them to me I asked if I could have a word, I said I asked for my mess at 8pm if I get them quickly I feel better but you left me for two hours feeling ill, and then you sat talking on your phone it made me feel neglected. She apologised and after that always looked after me if she was on the ward, we ended up getting on very well, I have promised a delivery of cakes for everyone once I feel up to it.
My new neighbour in the bed opposite was 75 year old Joan a proper south London gran and great gran. Quite a character and had been in the hospital since February being 'fattened' up for her surgery to repair a fistula. She had the surgery whilst I was there on April 15th, she was so fearful she wouldn't come back but it seemed to go ok. We had some good chats and had a similar perspective on things but she would f  and blind which I found funny although her daughters whenever they visited would be saying mum stop it it's embarrassing. I do hope she gets home soon, I gave her my number so I hope she does let me know how she gets on.
I continued feeling rough, no pain just incredibly ill...... I was pleased I got sorted via the clinic I couldn't imagine walking into Lewisham hospital and telling them in A&E I felt ill and being looked after.
The morning after I arrived my blood results were in and my infection markers were hitting the roof indicating that I had some big infection somewhere. A few days later after a CT scan and MRI which showed a mass of some sort around the bladder which seemed to be constricting my left ureter causing my left kidney to swell I had an op under GA.
It turned out I had a large abscess this was the mass they had seen around the kidney, they cleared it and took biopsies of what they found in the pelvis.
I immediately started to feel better and my temperatures stopped I also had huge amounts of antibiotics. The histology results confirmed that the mets have returned to my pelvis which is a bit of a bugger, especially as they have appeared so quickly. Mr George wonders if brachiotherapy might be  an option on the tumour where radioactive seeds are placed directly in the tumour, there is also
chemo too. Ironically my lungs are still not affecting me which was always my onco's major concern.
How do I feel about this news? Well I guess it's just more of the same, I don't feel too bad just lacking in energy but doing more than I was. I don't think having cancer will really get to me until I am suffering