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.
Saturday 28 September 2013
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!!
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!
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
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?
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.
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
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
Saturday 9 March 2013
Alison
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| Alison with Floella Benjamin in January 2013 after delivering her speech to the parliamentary reception. |
The trouble with getting involved with bowel cancer charities after diagnosis is that through these links we get to make friends often with people who have bowel cancer too at stage four. Mainly through the time I have spent on the beating bowel cancer forum I got to know Alison. We hit the forum right at the start and with out northern friend suze started to post to get it up and running. Alison was always good at advising newly diagnosed people, she showed her understanding of the turmoil that they must have been going through but tempered that with solid advice and lengthy responses to help reassure people but point them in the right direction to make sure that my symptoms were checked out.
I used to read her responses in awe of their depth, but followed her lead and did my best to emulate her responses when I came across someone new.
I also used to look forward to seeing her posts being placed, often we would just have some banter and as the forum grew and we had more regular posters it would be about catching up with each other and finding out how our days had gone.
Alison also used facebook and twitter and anyone who was involved with beating bowel cancer would be a friend. She was also tireless in her quest to ensure that bowel cancer shouldn't be the killer that it is through her work with beating bowel cancer in promoting awareness. Her final speech would be at the parliamentary reception at the Houses of Parliament in January, I was only a couple of weeks post op but so glad that I made the effort to be there as it would be the last time I would see her.
Her speech captured the audience as she talked bout her experience of care under the NHS and afterwards she came out for a drink. We hugged a goodbye, she was tired and limited to a wheelchair to get about more easily but her strength of character did not dwindle.
Who would know that only two months later this vibrant , ballsy, stoic woman would be gone.
The bowel cancer community miss her desperately, I miss her friendship and her care and our mutual understanding being in the same position.
This is my blog and with that in mind I have to touch on the fact that Alison's death has led me to contemplate my own mortality, she left us so quickly in the end, she was diagnosed after me and has gone before. I am so lucky to still be here and still well, but it gives me a sudden urgency to sort out my affairs, get that will signed, sort out the clutter, make sure things re in place for the boys. When will my time come? .......I can only hope that I leave even a tenth of the love behind me that Alison has, her just giving page is sailing towards two thousand pounds raised, the outpouring of love and messages from friends and acquaintances must be such a comfort to her family.
Rest easy Alison you did the best you could and now it's time for you to out your feet up and keep an eye on everyone from your new vantage point.....much love x x
Tuesday 12 February 2013
Luxor hospitals private wing.
I have looked back over my posts and I can't see where I have written about my diagnosis......the discovery that I had bowel cancer, if I have then maybe it isn't such a bad thing to publish it twice for those who just happen upon my blog and don't know about bowel cancer.
The background to my diagnosis must be the fact that I suffered from IBS since I was a child. If I hadn't then I think I would have been more aware of changes in bowel habit, but I didn't even think twice about it.
I did have griping colicky pains and a sudden urge to use the loo on frequent occasions but I did nothing until I found myself awake through the night with terrible gut ache, so bad I phoned in sick and went to the gp. By then the pain had gone he checked my abdomen and decided it was a urine infection. I was quite happy to leave and forget about it.
A couple of weeks later I set off with the boys for a holiday in Luxor Egypt. We arrived in Gatwick with some time to spare and Adam said that he wanted to buy a wrestling magazine from wh smiths for the flight, I told him to be quick and meet us there. Joe got what he wanted and then Zak and then the most awful thing I heard our flight being announced as ready to go.....no Adam, joe ran around wh smith but he was no where to be found....then they called out for the family elkamouri really panicking now I went to information to get them to pita call out for him when suddenly I saw him meandering towards us from the other side of the airport, not being able to find his mag he went to the others shop.
We ran and we ran as they announced over the tannoy that our luggage was about to be removed if we didn't arrive at the departure lounge soon, the boys were way ahead of me jumping onto the next moving walkway, I was flagging finding it hard to keep up I just kept running and running when suddenly joe appeared behind me shouting this way !!!! Ii had run right past the departure gate.
We quickly went through with our tickets and passports only to arrive on the Tarmac faced with a bus full of passengers waiting for us..... We hadn't been on the bus more than two minutes before I announced to all that it was Adams fault, I couldn't deal with the shame.
We had a good flight and on arrival at the airport we got a cab to the hotel ibis. I made an arrangement with the cab driver to pick us up the following day with a guide to go and see the valley of the kings and queens and Hatshepsut temple.
The receptionist at the hotel was very nice and gave us a lovely room with a view over the Nile it was stunning. We unpacked and the boys changed and went down to the pool later we had a buffet meal, I only booked half board so we got breakfast and an evening meal and paid for our drinks, as I wasn't fussed about drinking this was a cheaper option.
The following morning the cab arrived to take us sight seeing. It was soooo hot baking, only a few tombs are open at any one time and out guide took us first into a small one and then to a couple of larger tombs, we weren't allowed to talk in the tombs but it was enough to see the ancient hieroglyphics. We had our picture taken next to. Tutankhamen s tomb which you can see somewhere else in the blog.
We saw the temple which was astonishing, it had been renovated over forty years back to its original splendour and was just amazing. Whilst we were there the most famous Egyptian historian was filming next to us, whenever you see anything on the news about Egypt he is there with his blue shirt and wide brimmed hat.
We spent the afternoon by the pool after I arranged with the cab to come back on wed morning to take us to the Karnak temple, then in the evening had something to eat.
Around 8pm I sat chatting to an English woman briefly in the reception area during which I started to feel a bit bloated. I headed back to the room and attempted to go to the loo to no avail. I felt really uncomfortable and just wanted to pass wind at least, but nothing.
The boys went to bed and I tried to settle but my stomach wasn't moving and now I was starting to have griping pains, these increased as the night went on and became more and more excruciating. I was desperate to pass a motion but however much I tried nothing would come, the pain came in waves rippling through my abdomen. I was curled up in bed, then on all fours, then sitting up, then lying down, then walking around, then back on all fours I had become a little bit out of control starting to moan and groan with the pain. As soon as it was morning I told Joe to phone the reception for a doctor.
A young Egyptian doctor came to see me, seif the receptionist came to the room too. The doctor gave me some tablets and said that if it wasn't better in an hour to call. It wasn't he came back tried to put a drip in put couldn't and then said you have to go to hospital.
Both he and seif went with me in a cab, the boys were in the pool by now and I didn't get a chance to tell them what was happening.
We arrived at the hospital and it was just a blur of people and me in the middle of it just in agony, I was vertically incoherent by now. No one gave me pain relief apparently it is policy. Seif and the doctor were talking to the hospital docs. I was taken to the private wing and had a room to myself, a basic room by uk standards but a haven for me none the less. The nurses were very sweet with their little English and my bit of Arabic we managed. They gave me an enema, my first ever! But i was beyond caring by now, put a drip in my arm and a tube down my nose into my stomach, a singular experience. I began to feel so much better and had a snooze.
I then was take to have an X-ray and also an ultrasound, the male nurse who carried this out did so whilst chatting me up!
I returned to my room and a while later the boys appeared!! They had gone back to the room at the hotel and found me gone! They went to reception and had been told I was at the hospital so they got a cab and here they were! It was good that by then I was virtually back to normal so they flopped out on the sofa in my room for a snooze. Later they got a cab back to the hotel after I made sure that they knew where my purse was in case they needed anything, as it was they had made friends with a few kids who got them drinks with their all inclusive bands and whose families took them under their wing.
I was never told by anyone at the hospital what the problem was just that I needed to sea doctor when I got home. The following day the boys arrived again but this time with the woman I had spoken to the night I was taken ill, she was still wet having jumped up when she saw the boys leaving not wanting them to travel alone again. It turned out that she lived in Lewisham too....small world the boys remained in contact with her children after the holiday.
By now I wanted to go one doctor wanted me to have a colonoscopy another said I had to stay, I became upset and the nurses indicated don't worry they would sort it, they talked to another more understanding doc and he let me go but said I had to come back on Friday the following day to have the colonoscopy.
I went back to the hotel and that night spent the night on my own in the hotel room whilst the boys went to sleepover with a friend in another part of the hotel!!
The next day I asked seif to go to the hospital with me, they had my passport and I needed to pay my bill to get it back, I withdrew 500 pounds in dollars from the cashpoints this was all I needed to pay. I got my passport and went to see the doctor in a busy clinic, he told me i didn't need to have the procedure just to seethe doc on return home, even though it was a colonoscopy I was going to have I made no link with bowel cancer, I didn't have any thought abut what it was I was just glad I felt better. I got a fit to fly certificate from the doc as advised by my insurance nurse and left.
I did not eat for the rest of the holiday or drink anything fizzy. I can't remember if I used the loo at all. That afternoon me and The boys went for a sail on the Nile on a felucca, the boys were not happy about this at first as they had things planned with other friends but it was a lovely thing to do peaceful and beautiful as the sun went down.
I booked a ride in a hot air balloon over the valley of the kings for the Sunday morning, we just spent the day around the pool on the Saturday. The boy who took the hot air balloon bookings chatted me up too and asked to remain in touch, he was quite tenacious. I sat with a couple of young British girls that evening on the terrace chatting and remarked on how full on the Egyptian men were.....they didn't know what I meant not having he my problem, I think I must have a look they like as I was constantly approached when I was outside the hotel, my limited Arabic does come in useful at times, imshi the most meaning go away!
We had to get up really early on this day morning and had them waiting for us already before we were all up, I got the boys to move as quick as they could and we landed bleary eyed in reception and were taken by minibus to the riverside picking up other travellers on the way.
we then got into boats with a covered area where breakfast was waiting for us, we sat with a middle aged couple from Australia and the wife's sister, they were very nice.
we arrived on the other side of the Nile and were taken to the launching site where there were at least ten or more balloons lying on their side with gas flares blowing them up. It was still dawn before the sunrise and they looked like huge lanterns, they gradually got bigger and bigger until they were all standing proud and we were told which baskets to get into and scrambled in.
I had never been in a hot air balloon before same as the boys an as i don't like heights i was a bit apprehensive about how this was going to go. One by one the balloons gently lifted off until there was a stream of them lighting up the sky, we rose higher and higher and i didn't mind at all it was lovely. Gradually the sun rose and we saw the pyramids basking in the glow, it was magical. We continued to travel and floated over other historical ruins, we ended up on the green side of the Nile and the pilot played with us as the date palms came towards us and it looked as though we were going to crash into the tops we would just skim them, you could have reached out and plucked yourself some dates. At one point passing over what looked like shells of houses i realised that it was the open roof of somebodies home and could make out the shape of two bodies under a cover fast asleep, right beneath us.
The flight lasted about an hour and we landed in the desert with children of eleven and twelve begging for money all around us they had been following the balloons on their last few meters.
We still got back to the hotel in time for breakfast and then spent the rest of the day again by the pool, the boys favourite pastime hooking up with all their new friends.
Our final day was Monday, i was sad to say goodbye to Seif as he had been so kind, he took my number and did keep in contact with me for a good few years by intermittently wishing me a happy new year or just asking how i was. this stopped about a year or so ago the number i had didn't work and then i lost it. I still have the same number but i doubt i will hear from him again.
In the morning Adam and Joe stayed by the pool and Zak and i went to the museum of mummification, where we saw mummies in various states and animals that had been mummified. Zak really enjoyed it and we got a horse and cart ride back to the hotel.
We flew that afternoon back to England and ended up in the same seats we had coming, i even had the same Asian couple sitting next to me.
About half an hour into the flight i started to feel queasy, just not right. I asked the flight attendant for some water as i had been avoiding fizz, but she bought me tonic as it is good for sickness. I started to feel very uncomfortable and ended up in the toilet to throw up which made me feel better for a while.
I noticed a spare chair right next to the door so moved into it leaving the boys a few rows behind. Whenever the loo was empty i would pop in.....heave and then return to my seat. I watched the clock ticking round a five hour flight, it was excruciating.... bearing in mind the fit to fly cert and the nurses warning about landing elsewhere if need be i kept going till i knew we were over the channel. I had already told the flight attendant that i had been in hospital, they said someone should have informed them but this hadn't happened.
Once i knew we would land in the UK i asked the flight attendant to get a paramedic on arrival, i had been sitting there working out if i could manage getting the luggage by now i was visibly shaking and just felt so bad just ill not in pain. I decided i couldn't, if the car had been parked at the airport i may well have found he strength to struggle on and drive home but as my friend Lu had it whilst we were away and was meeting us i just gave in.
The plane landed and then the captain announced that there was a sick passenger on board and would everyone mind remaining seated until the paramedics were on board.....i could see everyone looking around and felt like raising my hand in acknowledgement, yes for it is i holding you all up. In the end it wasn't too bad as i was at the back of the plane they let everyone in the front go. I told my tale to the ambulance man and he said that i needed to go to the hospital with him.
The ground crew took the boys passports from me and Lu's number who i had spoken to and told what was happening, she ended up having the boys for a week for me.
I walked off the plane into the ambulance and ended up at the east surrey and Sussex hospital. I was in a and e for a bit and Lu came there with the boys and my suitcase, we pulled some things out of it that i would need including my x ray! and then she left with the very tired boys.
I was taken onto a ward for the night, well actually a nice room to myself and after getting pain relief had the best sleep.
In the morning my room was suddenly filled with various nurses junior doctors, heads of department, registrars and my consultant. It was all a bit of a blur they had looked at my x ray luckily still having an old fashioned screen to use. My consultant introduced himself as mr Aslam and as quickly as they arrive they left. One of the nurses came in and said that although Mr Aslam could come across as abrupt he was very good and most nurses would be pleased to have him looking after them which was reassuring.
I remained in that room for a couple of days during which i had CT scans and then a colonoscopy, i truly had not considered what was causing my problem until then i felt well now and in my optimistic way just assumed everything would get sorted one way or another.
I was awake and watching the screen during the colonoscopy and saw the camera snake through my colon until it came across a huge donut like thing blocking its way, there was no way it was getting past that. Mr Aslam told me that it was a tumour and that this was the cause of my problems. I then was tided up and left in my bed in a little cubicle next door.
Mr Aslam then came to see me, he was very straightforward he said that they needed to send a piece of the tumour that he had got for a biopsy but that he had 25 years experience and that he felt that this tumour was malignant, did i know what he was saying?....yes i did. So that is what it is, ok we cut it out and carry on.
The bowel nurse came in then and was very sweet and kind and made me feel more upset than the doctor had.
I returned to my room until the next day when i was moved to the step down ward, where i would go after my op, there was a spare bed and they didn't want to lose it.
On Friday 30th August 2007 in the afternoon i was wheeled down to theatre. I had the epidural that i didn't want in the first place and then went to sleep.
I woke up on the step down ward, it was night time and in a bed in the corner i could here a young guy complaining of pain and heard the Doctor say his epidural hadn't worked. I was in a cold sweat and feeling very weird i couldn't work out why but when i heard this i realised i was in pain. I called the Doctor as he past and he said he would come back. He did and ran some ice over my legs could i feel it? yes i could!! mine hadn't worked either so they set me up with a morphine pump.
When the biopsy came back they found that i had one lymph node affected out of 24 and that chemo would be a probable option. Nothing had gone through the bowel and i think i was very lucky, later my oncologist would talk about two lesions on the lungs that they thought maybe chest infection scars.
The long and the short of it is i spent 12 days in the hospital after that. He managed to avoid fitting a colostomy bag for which i was grateful and once the bowels started to move a bit i was able to go.
The day before i left my wound was found to be infected and the sister asked if i would stay a bit longer but i wanted to go, i was lucky that the district nurse at my surgery was very good i called them to let them know i was home and she came to see me and got me registered onto the system although this should have already been done. I guess the problem of two authorities being in the mix.
One day she asked which way henryson rd was and i asked if she was going to see jenny a friend of mine who was nearing the end of her battle with breast cancer. She was so for he next few days we passed messages through her. When i was able to get out and about i went to see her, she was in bed and not responding at all, she had three boys like me the youngest carl was only 13 and crying in the lounge......Jenny died the following day 11th Oct 2007. I see the boys out and about the oldest two were in their late teens early twenties when she died....they are all doing ok. Jenny was the glue that held them together, but they are managing and getting on with their lives.
The background to my diagnosis must be the fact that I suffered from IBS since I was a child. If I hadn't then I think I would have been more aware of changes in bowel habit, but I didn't even think twice about it.
I did have griping colicky pains and a sudden urge to use the loo on frequent occasions but I did nothing until I found myself awake through the night with terrible gut ache, so bad I phoned in sick and went to the gp. By then the pain had gone he checked my abdomen and decided it was a urine infection. I was quite happy to leave and forget about it.
A couple of weeks later I set off with the boys for a holiday in Luxor Egypt. We arrived in Gatwick with some time to spare and Adam said that he wanted to buy a wrestling magazine from wh smiths for the flight, I told him to be quick and meet us there. Joe got what he wanted and then Zak and then the most awful thing I heard our flight being announced as ready to go.....no Adam, joe ran around wh smith but he was no where to be found....then they called out for the family elkamouri really panicking now I went to information to get them to pita call out for him when suddenly I saw him meandering towards us from the other side of the airport, not being able to find his mag he went to the others shop.
We ran and we ran as they announced over the tannoy that our luggage was about to be removed if we didn't arrive at the departure lounge soon, the boys were way ahead of me jumping onto the next moving walkway, I was flagging finding it hard to keep up I just kept running and running when suddenly joe appeared behind me shouting this way !!!! Ii had run right past the departure gate.
We quickly went through with our tickets and passports only to arrive on the Tarmac faced with a bus full of passengers waiting for us..... We hadn't been on the bus more than two minutes before I announced to all that it was Adams fault, I couldn't deal with the shame.
We had a good flight and on arrival at the airport we got a cab to the hotel ibis. I made an arrangement with the cab driver to pick us up the following day with a guide to go and see the valley of the kings and queens and Hatshepsut temple.
The receptionist at the hotel was very nice and gave us a lovely room with a view over the Nile it was stunning. We unpacked and the boys changed and went down to the pool later we had a buffet meal, I only booked half board so we got breakfast and an evening meal and paid for our drinks, as I wasn't fussed about drinking this was a cheaper option.
The following morning the cab arrived to take us sight seeing. It was soooo hot baking, only a few tombs are open at any one time and out guide took us first into a small one and then to a couple of larger tombs, we weren't allowed to talk in the tombs but it was enough to see the ancient hieroglyphics. We had our picture taken next to. Tutankhamen s tomb which you can see somewhere else in the blog.
We saw the temple which was astonishing, it had been renovated over forty years back to its original splendour and was just amazing. Whilst we were there the most famous Egyptian historian was filming next to us, whenever you see anything on the news about Egypt he is there with his blue shirt and wide brimmed hat.
We spent the afternoon by the pool after I arranged with the cab to come back on wed morning to take us to the Karnak temple, then in the evening had something to eat.
Around 8pm I sat chatting to an English woman briefly in the reception area during which I started to feel a bit bloated. I headed back to the room and attempted to go to the loo to no avail. I felt really uncomfortable and just wanted to pass wind at least, but nothing.
The boys went to bed and I tried to settle but my stomach wasn't moving and now I was starting to have griping pains, these increased as the night went on and became more and more excruciating. I was desperate to pass a motion but however much I tried nothing would come, the pain came in waves rippling through my abdomen. I was curled up in bed, then on all fours, then sitting up, then lying down, then walking around, then back on all fours I had become a little bit out of control starting to moan and groan with the pain. As soon as it was morning I told Joe to phone the reception for a doctor.
A young Egyptian doctor came to see me, seif the receptionist came to the room too. The doctor gave me some tablets and said that if it wasn't better in an hour to call. It wasn't he came back tried to put a drip in put couldn't and then said you have to go to hospital.
Both he and seif went with me in a cab, the boys were in the pool by now and I didn't get a chance to tell them what was happening.
We arrived at the hospital and it was just a blur of people and me in the middle of it just in agony, I was vertically incoherent by now. No one gave me pain relief apparently it is policy. Seif and the doctor were talking to the hospital docs. I was taken to the private wing and had a room to myself, a basic room by uk standards but a haven for me none the less. The nurses were very sweet with their little English and my bit of Arabic we managed. They gave me an enema, my first ever! But i was beyond caring by now, put a drip in my arm and a tube down my nose into my stomach, a singular experience. I began to feel so much better and had a snooze.
I then was take to have an X-ray and also an ultrasound, the male nurse who carried this out did so whilst chatting me up!
I returned to my room and a while later the boys appeared!! They had gone back to the room at the hotel and found me gone! They went to reception and had been told I was at the hospital so they got a cab and here they were! It was good that by then I was virtually back to normal so they flopped out on the sofa in my room for a snooze. Later they got a cab back to the hotel after I made sure that they knew where my purse was in case they needed anything, as it was they had made friends with a few kids who got them drinks with their all inclusive bands and whose families took them under their wing.
I was never told by anyone at the hospital what the problem was just that I needed to sea doctor when I got home. The following day the boys arrived again but this time with the woman I had spoken to the night I was taken ill, she was still wet having jumped up when she saw the boys leaving not wanting them to travel alone again. It turned out that she lived in Lewisham too....small world the boys remained in contact with her children after the holiday.
By now I wanted to go one doctor wanted me to have a colonoscopy another said I had to stay, I became upset and the nurses indicated don't worry they would sort it, they talked to another more understanding doc and he let me go but said I had to come back on Friday the following day to have the colonoscopy.
I went back to the hotel and that night spent the night on my own in the hotel room whilst the boys went to sleepover with a friend in another part of the hotel!!
The next day I asked seif to go to the hospital with me, they had my passport and I needed to pay my bill to get it back, I withdrew 500 pounds in dollars from the cashpoints this was all I needed to pay. I got my passport and went to see the doctor in a busy clinic, he told me i didn't need to have the procedure just to seethe doc on return home, even though it was a colonoscopy I was going to have I made no link with bowel cancer, I didn't have any thought abut what it was I was just glad I felt better. I got a fit to fly certificate from the doc as advised by my insurance nurse and left.
I did not eat for the rest of the holiday or drink anything fizzy. I can't remember if I used the loo at all. That afternoon me and The boys went for a sail on the Nile on a felucca, the boys were not happy about this at first as they had things planned with other friends but it was a lovely thing to do peaceful and beautiful as the sun went down.
I booked a ride in a hot air balloon over the valley of the kings for the Sunday morning, we just spent the day around the pool on the Saturday. The boy who took the hot air balloon bookings chatted me up too and asked to remain in touch, he was quite tenacious. I sat with a couple of young British girls that evening on the terrace chatting and remarked on how full on the Egyptian men were.....they didn't know what I meant not having he my problem, I think I must have a look they like as I was constantly approached when I was outside the hotel, my limited Arabic does come in useful at times, imshi the most meaning go away!
We had to get up really early on this day morning and had them waiting for us already before we were all up, I got the boys to move as quick as they could and we landed bleary eyed in reception and were taken by minibus to the riverside picking up other travellers on the way.
we then got into boats with a covered area where breakfast was waiting for us, we sat with a middle aged couple from Australia and the wife's sister, they were very nice.
we arrived on the other side of the Nile and were taken to the launching site where there were at least ten or more balloons lying on their side with gas flares blowing them up. It was still dawn before the sunrise and they looked like huge lanterns, they gradually got bigger and bigger until they were all standing proud and we were told which baskets to get into and scrambled in.
I had never been in a hot air balloon before same as the boys an as i don't like heights i was a bit apprehensive about how this was going to go. One by one the balloons gently lifted off until there was a stream of them lighting up the sky, we rose higher and higher and i didn't mind at all it was lovely. Gradually the sun rose and we saw the pyramids basking in the glow, it was magical. We continued to travel and floated over other historical ruins, we ended up on the green side of the Nile and the pilot played with us as the date palms came towards us and it looked as though we were going to crash into the tops we would just skim them, you could have reached out and plucked yourself some dates. At one point passing over what looked like shells of houses i realised that it was the open roof of somebodies home and could make out the shape of two bodies under a cover fast asleep, right beneath us.
The flight lasted about an hour and we landed in the desert with children of eleven and twelve begging for money all around us they had been following the balloons on their last few meters.
We still got back to the hotel in time for breakfast and then spent the rest of the day again by the pool, the boys favourite pastime hooking up with all their new friends.
Our final day was Monday, i was sad to say goodbye to Seif as he had been so kind, he took my number and did keep in contact with me for a good few years by intermittently wishing me a happy new year or just asking how i was. this stopped about a year or so ago the number i had didn't work and then i lost it. I still have the same number but i doubt i will hear from him again.
In the morning Adam and Joe stayed by the pool and Zak and i went to the museum of mummification, where we saw mummies in various states and animals that had been mummified. Zak really enjoyed it and we got a horse and cart ride back to the hotel.
We flew that afternoon back to England and ended up in the same seats we had coming, i even had the same Asian couple sitting next to me.
About half an hour into the flight i started to feel queasy, just not right. I asked the flight attendant for some water as i had been avoiding fizz, but she bought me tonic as it is good for sickness. I started to feel very uncomfortable and ended up in the toilet to throw up which made me feel better for a while.
I noticed a spare chair right next to the door so moved into it leaving the boys a few rows behind. Whenever the loo was empty i would pop in.....heave and then return to my seat. I watched the clock ticking round a five hour flight, it was excruciating.... bearing in mind the fit to fly cert and the nurses warning about landing elsewhere if need be i kept going till i knew we were over the channel. I had already told the flight attendant that i had been in hospital, they said someone should have informed them but this hadn't happened.
Once i knew we would land in the UK i asked the flight attendant to get a paramedic on arrival, i had been sitting there working out if i could manage getting the luggage by now i was visibly shaking and just felt so bad just ill not in pain. I decided i couldn't, if the car had been parked at the airport i may well have found he strength to struggle on and drive home but as my friend Lu had it whilst we were away and was meeting us i just gave in.
The plane landed and then the captain announced that there was a sick passenger on board and would everyone mind remaining seated until the paramedics were on board.....i could see everyone looking around and felt like raising my hand in acknowledgement, yes for it is i holding you all up. In the end it wasn't too bad as i was at the back of the plane they let everyone in the front go. I told my tale to the ambulance man and he said that i needed to go to the hospital with him.
The ground crew took the boys passports from me and Lu's number who i had spoken to and told what was happening, she ended up having the boys for a week for me.
I walked off the plane into the ambulance and ended up at the east surrey and Sussex hospital. I was in a and e for a bit and Lu came there with the boys and my suitcase, we pulled some things out of it that i would need including my x ray! and then she left with the very tired boys.
I was taken onto a ward for the night, well actually a nice room to myself and after getting pain relief had the best sleep.
In the morning my room was suddenly filled with various nurses junior doctors, heads of department, registrars and my consultant. It was all a bit of a blur they had looked at my x ray luckily still having an old fashioned screen to use. My consultant introduced himself as mr Aslam and as quickly as they arrive they left. One of the nurses came in and said that although Mr Aslam could come across as abrupt he was very good and most nurses would be pleased to have him looking after them which was reassuring.
I remained in that room for a couple of days during which i had CT scans and then a colonoscopy, i truly had not considered what was causing my problem until then i felt well now and in my optimistic way just assumed everything would get sorted one way or another.
I was awake and watching the screen during the colonoscopy and saw the camera snake through my colon until it came across a huge donut like thing blocking its way, there was no way it was getting past that. Mr Aslam told me that it was a tumour and that this was the cause of my problems. I then was tided up and left in my bed in a little cubicle next door.
Mr Aslam then came to see me, he was very straightforward he said that they needed to send a piece of the tumour that he had got for a biopsy but that he had 25 years experience and that he felt that this tumour was malignant, did i know what he was saying?....yes i did. So that is what it is, ok we cut it out and carry on.
The bowel nurse came in then and was very sweet and kind and made me feel more upset than the doctor had.
I returned to my room until the next day when i was moved to the step down ward, where i would go after my op, there was a spare bed and they didn't want to lose it.
On Friday 30th August 2007 in the afternoon i was wheeled down to theatre. I had the epidural that i didn't want in the first place and then went to sleep.
I woke up on the step down ward, it was night time and in a bed in the corner i could here a young guy complaining of pain and heard the Doctor say his epidural hadn't worked. I was in a cold sweat and feeling very weird i couldn't work out why but when i heard this i realised i was in pain. I called the Doctor as he past and he said he would come back. He did and ran some ice over my legs could i feel it? yes i could!! mine hadn't worked either so they set me up with a morphine pump.
When the biopsy came back they found that i had one lymph node affected out of 24 and that chemo would be a probable option. Nothing had gone through the bowel and i think i was very lucky, later my oncologist would talk about two lesions on the lungs that they thought maybe chest infection scars.
The long and the short of it is i spent 12 days in the hospital after that. He managed to avoid fitting a colostomy bag for which i was grateful and once the bowels started to move a bit i was able to go.
The day before i left my wound was found to be infected and the sister asked if i would stay a bit longer but i wanted to go, i was lucky that the district nurse at my surgery was very good i called them to let them know i was home and she came to see me and got me registered onto the system although this should have already been done. I guess the problem of two authorities being in the mix.
One day she asked which way henryson rd was and i asked if she was going to see jenny a friend of mine who was nearing the end of her battle with breast cancer. She was so for he next few days we passed messages through her. When i was able to get out and about i went to see her, she was in bed and not responding at all, she had three boys like me the youngest carl was only 13 and crying in the lounge......Jenny died the following day 11th Oct 2007. I see the boys out and about the oldest two were in their late teens early twenties when she died....they are all doing ok. Jenny was the glue that held them together, but they are managing and getting on with their lives.
Wednesday 30 January 2013
Special K
Saturday morning after I returned to the ward I was quite sleepy, I wasn't aware of anything more than that but sue in the bed opposite said that they had been quite concerned about me and muttering about ketamine. I remember being woken by the nurse calling me and opened my eyes to see her looking at me quite intently, I had it seemed gone pinpoint and Jenny the nurse called the junior doctor to have a look at me. They decided to stop giving it to me and up the fentonil doses that I was getting. The hallucinations were still happening when my eyes were shut, the consultant anesthetisist came to see me and just before he arrived I told him that I had just seen people walking round but that they were drawn with a pencil, he said that this was a typical ketamine reaction and agreed I should come off it. Not sure why anyone would take it recreationally on the basis of my experience.
The night before sue in the opposite bed had realised that we had a mutual friend in suze from the beating bowel cancer forum so we became chatty very quickly. As we talked I could hear a voice from the end of the ward complaining about it is, later I could clearly hear her complaining to the nurse that she won't be bullied and she wanted to go home, she knows staff are busy but she needs them and she had enough and wanted to go, I realised that she was talking about me. The atmosphere became a little tense until Adam and Zak came to visit that afternoon, after they left pat suddenly exclaimed from her bed oh aren't your boys lovely, beautiful hair, lovely lovely boys. From that point I decided that it was better to work with her than against her.
The night before sue in the opposite bed had realised that we had a mutual friend in suze from the beating bowel cancer forum so we became chatty very quickly. As we talked I could hear a voice from the end of the ward complaining about it is, later I could clearly hear her complaining to the nurse that she won't be bullied and she wanted to go home, she knows staff are busy but she needs them and she had enough and wanted to go, I realised that she was talking about me. The atmosphere became a little tense until Adam and Zak came to visit that afternoon, after they left pat suddenly exclaimed from her bed oh aren't your boys lovely, beautiful hair, lovely lovely boys. From that point I decided that it was better to work with her than against her.
Monday 28 January 2013
Post operative opera.
So I was wheeled down in the morning but later than expected as they had not taken bloods for cross matching so one of the doctors had to come down and take it before I went down. It turns out I have a particular antibody and they had to check that they had compatible blood in case I needed it, they thought that maybe I received it in a previous transfusion.
So finally head down around 10am and am wheeled into the pre op room. It was really cold in there, but I met with the aneasthetist again and her colleague both ladies and both lovely. I had to have the epidural again given awake sitting in the edge of the bed, not the best feeling but manageable. They were pleased with where it was sited. We chatted away whilst all this was being done and they answered any questions about the procedure including one about my allergy to chloramphenicol eye drops. I didn't think that this was particularly relevant in terms of my op but she y do said that actually it really was as during the op my eyes would not be blinking and can dry so they would inset eye drops and usually chloramphenicol to hydrate them.
So then then they do the knock out injection and as happened before the next thing I know I am waking up in recovery.
As I woke in my stupefied state I could hear people asking how I was and there seemed to be some concern, I remember feeling a strong urge to pass a motion which I knew I couldn't but there was this huge pressure down below and also that my stomach felt like it was covered in bee stings. I drifted in and out and then gradually woke up more fully, for the second time my epidural hadn't worked properly so they set my up with a pump with fentonil.
I had one to one nursing through the night and towards the early morning, two of the nurses were concerned about my pain relief, they still thought that the epidural was delivering some pain block to the abdomen, but they were not too sure now, I should have not been feeling anything but I was. They sprayed a cold spray onto my abdomen and I nearly went through the roof, on each spot the feeling was the same as the next. They mumbled to each other and said that someone needed to come and look at this.
I can't remember who came next but they did the same with the same result and they came to the conclusion that the epidural hadn't worked at all.
At handover in the morning a lovely nurse called Dora came to look after me, she usually worked in itu but they were short in recovery so she was working there for a bit to help out. She couldn't have been nicer and more professional. One of the staff nurses questioned my continued placement in recovery as the other patients had left and was told it was because that had to sort out my pain control.
Dora washed me, got me drink checked the dressing and removed the epidural. Did my observations and chatted through the day.
Someone came to see me from the pain relief team, they suggested that ketamine was a good pain reliever if I didn't have hallucinations.
After they gave it to me I felt fine whilst my eyes were open but when I closed them It would be like watching a movie screen, I saw ants marching in line down a rock and remarked to myself at how the
high definition, there were other little scenes all completely different to each other, but as I was fine when asleep or when my eyes were open I didn't worry.
I the afternoon my middle son Adam arrived to see me with a paper and my favourite Lindt chocolates, my appetite was quite gone and at that point they were not sure whether I could eat or not as a care plan hadn't been put together. So I asked the nurse to pass them round the recovery team, ther was no polite refusal they went within minutes with squeals of delight and 'oh just what I need!' It was quite satisfying. After staying for an hour or so Adam headed home and I waited further whilst they got me sorted.
Finally around 7pm I was ready to go up onto the ward, Dora came with me and I felt quite emotional saying goodbye to her after she had spent the day caring for me so well.
On arrival at the ward Leon and tash my two salsa friends were there in he corridor as they wheeled me in in my bed then Alyson a neighbour , Trevor who I used to work with and my cousin sue appeared. Alyson and sue had made friends in the day room whilst waiting. It was nice to have such a welcome.
They all remarked on how well I looked which I guess was true, for someone who had been through such major surgery I felt quite awake and with it, more so than I did last time, there was a mention that I might not be morphine tolerant which would explain why I was so out of it after my last op.
After a while equine left and I settled down for my second night on the ward. I was to be woken at around 3am by pat calling for the nurse, I told her they were busy and later asked why she didn't use her call button......this didn't go down too well as I was to find out later.
So finally head down around 10am and am wheeled into the pre op room. It was really cold in there, but I met with the aneasthetist again and her colleague both ladies and both lovely. I had to have the epidural again given awake sitting in the edge of the bed, not the best feeling but manageable. They were pleased with where it was sited. We chatted away whilst all this was being done and they answered any questions about the procedure including one about my allergy to chloramphenicol eye drops. I didn't think that this was particularly relevant in terms of my op but she y do said that actually it really was as during the op my eyes would not be blinking and can dry so they would inset eye drops and usually chloramphenicol to hydrate them.
So then then they do the knock out injection and as happened before the next thing I know I am waking up in recovery.
As I woke in my stupefied state I could hear people asking how I was and there seemed to be some concern, I remember feeling a strong urge to pass a motion which I knew I couldn't but there was this huge pressure down below and also that my stomach felt like it was covered in bee stings. I drifted in and out and then gradually woke up more fully, for the second time my epidural hadn't worked properly so they set my up with a pump with fentonil.
I had one to one nursing through the night and towards the early morning, two of the nurses were concerned about my pain relief, they still thought that the epidural was delivering some pain block to the abdomen, but they were not too sure now, I should have not been feeling anything but I was. They sprayed a cold spray onto my abdomen and I nearly went through the roof, on each spot the feeling was the same as the next. They mumbled to each other and said that someone needed to come and look at this.
I can't remember who came next but they did the same with the same result and they came to the conclusion that the epidural hadn't worked at all.
At handover in the morning a lovely nurse called Dora came to look after me, she usually worked in itu but they were short in recovery so she was working there for a bit to help out. She couldn't have been nicer and more professional. One of the staff nurses questioned my continued placement in recovery as the other patients had left and was told it was because that had to sort out my pain control.
Dora washed me, got me drink checked the dressing and removed the epidural. Did my observations and chatted through the day.
Someone came to see me from the pain relief team, they suggested that ketamine was a good pain reliever if I didn't have hallucinations.
After they gave it to me I felt fine whilst my eyes were open but when I closed them It would be like watching a movie screen, I saw ants marching in line down a rock and remarked to myself at how the
high definition, there were other little scenes all completely different to each other, but as I was fine when asleep or when my eyes were open I didn't worry.
I the afternoon my middle son Adam arrived to see me with a paper and my favourite Lindt chocolates, my appetite was quite gone and at that point they were not sure whether I could eat or not as a care plan hadn't been put together. So I asked the nurse to pass them round the recovery team, ther was no polite refusal they went within minutes with squeals of delight and 'oh just what I need!' It was quite satisfying. After staying for an hour or so Adam headed home and I waited further whilst they got me sorted.
Finally around 7pm I was ready to go up onto the ward, Dora came with me and I felt quite emotional saying goodbye to her after she had spent the day caring for me so well.
On arrival at the ward Leon and tash my two salsa friends were there in he corridor as they wheeled me in in my bed then Alyson a neighbour , Trevor who I used to work with and my cousin sue appeared. Alyson and sue had made friends in the day room whilst waiting. It was nice to have such a welcome.
They all remarked on how well I looked which I guess was true, for someone who had been through such major surgery I felt quite awake and with it, more so than I did last time, there was a mention that I might not be morphine tolerant which would explain why I was so out of it after my last op.
After a while equine left and I settled down for my second night on the ward. I was to be woken at around 3am by pat calling for the nurse, I told her they were busy and later asked why she didn't use her call button......this didn't go down too well as I was to find out later.
Wednesday 9 January 2013
Admission day
So finally the admission date comes around. I had been told to wait until two pm and then someone would call to tell me what was happening. Three came and I decided to call, they still can't find a bed, at five they phone back and say you might as well come in to page ward although a bed still hasn't been found. I don't head in until 7 when I get there I am told that originally a bed was found on the other side of the hospital but that someone had just been discharged so I could stay he which is the digestive system ward.
I wait another couple of hours in the day room with a sweeping vista over Westminster and Big Ben and the London eye. Nurse comes in with a goody bag, two protein drinks, two pre op drinks and two sachets of picolax. Lovely!
I bolt down the picolax and then try one of the the fortisip drinks...tropical... Yuk!!!!! Unpalatable I don't make the black current either but they manage to find a caramel shake one, very nice.
Finally they lead me to the ward and the first thing that hits me is the stench!!!! I guess of people with wounds and no baths for a little while, it was truely awful. I immediately just wanted to go home, but instead I sat on the bed and unpacked. I ended up in tears I was hoping for something more like I experienced at Lewisham the wards there are fine but theses beds are too close together and as I said the smell!
I asked for the curtains to be drawn and after a while I was much better, managed to tether my I pad to my phone but it means that I will be constantly going over my data, I cannot believe that the hospital doesn't have wi fi access for the patients. They have one of those prepay tv,s over the bed but I will still to my I pad.
Lights went out at 11 and then this woman in the bed at the end started, nuuuurse eye please oh dear no nurseesss in a very winy woe is me tone. Constantly!!!! For an hour nuuuuurse, however much sympathy you have for someone who has had surgery it wears thin as does her voice.
I have another picolax and wait for the results nothing as yet, I have been given an undulating bed I assume for pressure sores and to keep me moving after the op, it's like being on a boat! So now I am going to try and catch a bit of sleep I am to be woken at 6am if the bowels don't get me first for my pre op drinks, and then the old me will depart and this new model will appear nuuuuuurssseeee!!!
I wait another couple of hours in the day room with a sweeping vista over Westminster and Big Ben and the London eye. Nurse comes in with a goody bag, two protein drinks, two pre op drinks and two sachets of picolax. Lovely!
I bolt down the picolax and then try one of the the fortisip drinks...tropical... Yuk!!!!! Unpalatable I don't make the black current either but they manage to find a caramel shake one, very nice.
Finally they lead me to the ward and the first thing that hits me is the stench!!!! I guess of people with wounds and no baths for a little while, it was truely awful. I immediately just wanted to go home, but instead I sat on the bed and unpacked. I ended up in tears I was hoping for something more like I experienced at Lewisham the wards there are fine but theses beds are too close together and as I said the smell!
I asked for the curtains to be drawn and after a while I was much better, managed to tether my I pad to my phone but it means that I will be constantly going over my data, I cannot believe that the hospital doesn't have wi fi access for the patients. They have one of those prepay tv,s over the bed but I will still to my I pad.
Lights went out at 11 and then this woman in the bed at the end started, nuuuurse eye please oh dear no nurseesss in a very winy woe is me tone. Constantly!!!! For an hour nuuuuurse, however much sympathy you have for someone who has had surgery it wears thin as does her voice.
I have another picolax and wait for the results nothing as yet, I have been given an undulating bed I assume for pressure sores and to keep me moving after the op, it's like being on a boat! So now I am going to try and catch a bit of sleep I am to be woken at 6am if the bowels don't get me first for my pre op drinks, and then the old me will depart and this new model will appear nuuuuuurssseeee!!!
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