Yesterday i went out with Joe and his girlfriend Jade, on arriving at the local train station i bumped into some friends and we sat together on the train.
During the discussion one of them told me that a mutual friend, who i have as a friend on Facebook had because of the symptom information that i had put up on there, gone to have tests herself to ensure that she was ok, i don't know the detail but i was chuffed to hear that i had in some part helped her get checked out.
Then stone me! this evening a good friend popped round who is going through a bit of a tough time and during the conversation said that after we had discussed symptoms that she was having a few weeks ago she had finally gone to get checked out and had been sent for a colonoscopy, she is only a month older than me. They found a polyp the size of a golfball and removed it. The doc said it looked benign and that if she had left it any longer then she could have been in trouble.
Hearing about these things does give me a little pang of regret that i hadn't done the same thing, but it is far overweighed by the fact that the knowledge i have amassed because i didn't get checked out has already helped others. Feels really good infact :o)
Tuesday 31 January 2012
Monday 30 January 2012
Daddy's Girl
I have talked at length about my mother in an earlier post and i have discussed my three boys, Dad seems to have been left behind although he is someone that i miss dreadfully even after 15 years.
i guess Dad and i had no choice but to become closer Mum would often make no sense and often put me in the position of being the adult when she was in the midst of her depression and i was to find out a few years ago that she was sent home from Singapore where we lived for a year or so without me when she became ill over there. Being the only child i was often left on my own with her when dad was working or out in the evening at the Buffs for example.....an army thing a lot like the masons....Royal antediluvian order of Buffaloes.....yes don't ask, i have a few medals of Dad's associated with it but my only memories are dinner and dance evenings and Dad being out on a Monday night....oh and at his funeral a guard of honour that Mum and i passed through on the way into the church with the coffin! Being on my own with Mum could be a trial especially if she was on the down side of her Manic Depression, now known as Bi polar. As a teenager i resented her and relished the time with Dad even more especially on our own.
Dad was the middle of three brothers, his oldest Brother Gerald was a handsome blond haired blue eyed boy. He left England in the 1940's when at the end of the war in the RAF he went into Paris and met Annie a Parisian woman who he later married and moved to Paris to be with, they had one daughter my cousin Katherine. He was a mechanic and did well from the move as once he learnt French he was used to translate new mechanical information for Leyland and it gave him great opportunities to travel the world.
The youngest brother John worked as a farm labourer he fell in love with Winnie who was tied in to the family her mothers father being Johns granddad's brother. They married and had three children Stephen , Keith and Helen....she did me a favour and got Helen first which is how i ended up Hazel. In the mid 60's they saw the ads for people to emigrate to Australia and decided that this was what they needed to do. Unfortunately just as they should have left Helen was hurt badly in a car accident and it delayed their move, when she finally recovered they left as one of the last to go in 69. It caused a huge rift between them and My father and Gerald as they didn't tell anyone that they were going, although we lived not too far away when they left Dad refused to see them off. He didn't get to see John again until three months before he died when John came back for the first time to see him. Which is when we found out that he couldn't tell anyone that they were leaving because Winnie's dad had beaten him so badly for taking his only child away that they had to do it without his knowledge.
Dad was the brother who went to college his cousin told me that she remembered him spending a lot of time in his grandparents attic with his science set. He did well at school and decided to go into the army and this became his career, he went into the royal army medical cour so that he would have a job when he came out. He travelled around the world, and later met mum at a night class, when he was living in West Norwood, she lived in Wandsworth and was working at St Georges as a lab tech, she asked him to accompany her home and that was it. He drove a Norton motor bike and they would hare around London on it. They married on 23rd Sept 1961 and i arrived in Oct 62 i would later also get married on the 23rd Sept in 1988.
Dad aspired to get on and worked hard to get a house and security, he was very determined that i would speak properly and would often say what!!!? if i said bu er instead of buTTer for example and yeh instead of YES! he would also chastise friends visiting if they did the same. As a consequence i do the same with the boys he taught me that mis pronunciation jarrs, whether right or wrong as accents are great things too.
I got on well with Uncle John when he came over in 1996 when Dad became ill he was different to dad and this was highlighted further when the three brothers came together for the first time in 30 years for his last birthday on May 12th 1996 when i went up with John and Adam who was only a month old then and Joe 4 to mum and dad's in Thirsk North Yorks and uncle Gerald and Aunt Annie came over from Paris. Dad was clearly the odd one out of the three and on occasion became exasperated with their banter, but this was also due to his illness Cancer on the pelvic bone which had been diagnosed in the October previously.
The night in October 95 when mum phoned to say that Dad had been diagnosed with cancer i have to say was the single worst night of my life, it was the start of things changing, i think it was probably worse than losing him in a way, just such a bolt from the blue.
Dad had always been the solid one and the reliable one growing up. He had his moments though, a quick temper and a big hand! there was one occasion where he lost it completely. I was watching Abigails Party i remember in the 70's and i had bought some silly coke can radio which for some reason he decided i shouldn't have done and and just went for me big time. To this day can see his face contorted with rage as he hit me, Dad was 6ft 4! I wasn't one for just taking it and hit back and as i did manged to get away and ran out of the house. I remember walking around the village, we lived near Gt Yarmouth in Norfolk then...looking for my dad's car to come and find me, i really thought he would have calmed down and looked for me. I have never really addressed this before or told anyone but it is a piece of my life that i never forgot, and i think i never forgot it because he never came to look. I ended up at one of the phone boxes in the village and called the Samaritans, only time i ever have done so. I ended up going home and climbing through my bedroom window {it was a bungalow} in order to avoid mum who i saw sitting in the kitchen in the dark, Dad had gone to bed, i don't think i ever really forgave him for that. As it was being a petulant teenager i refused to talk to him for a week which resulted in him coming to my bedroom one evening in tears and apologising profusely which was worse than the beating!
So that makes him sound awful but he wasn't, i think for both of them i was the child they thought they might never have and i was the only one they could have, Dad had already had prostrate cancer when i was 6 months old ensuring i would never have siblings and mum miscarried before she had me and had me at age 40, i literally made it by the skin of my teeth!
Dad would do anything really, he was a great taxi service and when i had the infamous parties at the school hall he would come for the evening as the appropriate adult but would let us get on with having fun. He taught me how to master the basics in driving before paying for lessons until i passed. He bought a cheap car during my lessons so that if i damaged it....which i did! it wasn't too much of a problem, he laughed when i swung in through the gates left handed and jammed the passenger side on the gate post.
He paid for music lessons and school trips, he joined the PTA and was chair during the transition from Grammar to Secondary which happened the year that i left. He would take me to work when he was on call and i would play with the centrifuge and he would point out what he was looking for on a film when looking through the microscope {he was a haematologist}. My early memories are of him coming home at lunchtime in his Army uniform and seeing him taking blood in a tent for charity at the annual tattoo so that people could find out what blood group they were, my goodness wouldn't get away with that now!
After i left home i would return for weekends and on occasion we would go out for a drink together, he told me once that should he go after mum {he never really believed that he wouldn't} that he would move into a smaller place and i would have to make the decision on whether he was coping or not, later he was to tell my aunt that he would have moved in with us if we wanted to help with childcare. He saw Joe for 4 years and adored him. He would take him to the shops for toys when we visited and bounce him on his knee, but if he was naughty his voice would get serious and Joe would know that he couldn't push things any further.
One of the things that people remembered him for was his booming laugh. I remember doing the make up for Under Milk Wood at school, the first night the audience weren't really getting the humour in the play but on the second night dad was there and suddenly you could hear him laughing heartily at all the right places and the rest of the audience duly followed, a lot of cast members were coming back stage commenting on it.
Dad loved reading, Dickens especially, his favourite being bleak House and we would go to the library every Saturday together, he always had a book in his hand to read. He also loved classical music and had quite a collection, i initially professed not to like it but then in music lessons was introduced to Holst and came home raving about it and gradually listened to more, and now have a collection of my own, however less than dad. He also was a great gardener, as a child i don't remember mum buying vegetables. Dad had an allotment and on occasion i would wander down there to help and have a chat. He had a greenhouse at home and would wander down each night for a cigarette, you could see the tip of it burning in the dark, he grew tomatoes in the green house and would bring me the first crop especially, as they were and have always been my absolute favourite veg, there is nothing to compare with the taste of home grown tomatoes.
When we bought the flat in London he helped with the deposit and when we had the chance to buy the freehold he financed that. He and mum would visit every month or so driving down from Thirsk where they moved to in 89 and he would always bring some cuttings and plants for the garden. He never got to see the house and the big garden we have here, mum came once after he died.
It is one great regret that he never got to see the boys grow up and be more of a grandad. Mum did have that opportunity but didn't really relish it like he would have done. Adam was three months old when he died.
I feel that he and mum have been around since their passing and odd things happen which would take me so long to write here that make me believe that there is more than this.
There was something going on around his death too....... for ages during his illness i had thought that i would want to write to him to let him know how much i loved him and how much i appreciated all he had done for me, we were never so physically demonstrative that i could feel comfortable doing that in person. The last time i spoke to him he phoned and asked if i could get him into hospital for a rest, however much mum was doing for him at home he actually wanted the security of being in the local cottage hospital ten minutes walk into town.
In the end the district nurse came in over the weekend and he went in. I decided that whilst he was in for a bit of respite i would write to him it would bypass mum and just be between him and me.
On the day that Uncle John had returned to Australia after seeing dad, his father in law died! poor uncle John had to return with Winnie the following week to get her mum sorted into a home and sell the property. It took a good while and when they knew they were going to have it all sorted they booked to go and see dad a couple of weeks before the date of travel as it was cheaper. Auntie phoned and asked if they could come to me for a few hours as the connections from Kent to Yorkshire were a few hours apart, as i was on maternity leave i said that i would come down and collect them from Lamberhurst and take them directly to Victoria. Dad was admitted into hospital a week before i was due to collect them.
So the night before i was due to get them i wrote Dad's letter...in the morning i called the Cottage Hospital to get their address, the receptionist asked if mum had been in touch and i said no i had written dad a letter and wanted to send it to him and could i have the address, she said yes but talk to sister. So i waited and sister came on the phone, had my mum been in touch?.....no, so she said i really think i need to tell you that your dad has deteriorated and we don't think he will last out the day. It was such a shock and suddenly getting the letter to him became vitally important, i confirmed that they had a fax and the sister said that if i got it to them she would read it to him. I re wrote some of it then as a goodbye letter, and remember saying that although i wish that he could stay that i understood if it was time for him to go. I told him that if i had another boy his middle name would be Willard, Dad's surname Joe already had his first name Peter...Zaki does indeed have Willard as a middle name it meant a lot to me that Dad at least had some knowledge of him. Cousin Stephen had asked me to source a book of war poems for him and send them back with uncle John, in there i found a couple of poems about the security of hospital and one on dying, i put them in for him too. Next i had to fax it, i couldn't from home and i knew Vince who lived in the flat above worked from home and so i landed in tears on his doorstep. He managed to get it there for me and sister read it to him as requested in the afternoon before Mum visited......he died 10 hours later at 2am the following morning.
I then went down to collect John and Winnie, in tears at times whilst i was driving but pulled it together before i arrived. I told them i had news assuming that they didn't know....but mum had already told them!! I never really got to the bottom of why she never told me, because she didn't until she phoned on Tuesday morning to say he had gone 30.7.96 but something intervened anyway to ensure i got to say goodbye.
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| In Singapore 1964 |
Dad was the middle of three brothers, his oldest Brother Gerald was a handsome blond haired blue eyed boy. He left England in the 1940's when at the end of the war in the RAF he went into Paris and met Annie a Parisian woman who he later married and moved to Paris to be with, they had one daughter my cousin Katherine. He was a mechanic and did well from the move as once he learnt French he was used to translate new mechanical information for Leyland and it gave him great opportunities to travel the world.
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| Dad's parents and two brothers. |
Dad was the brother who went to college his cousin told me that she remembered him spending a lot of time in his grandparents attic with his science set. He did well at school and decided to go into the army and this became his career, he went into the royal army medical cour so that he would have a job when he came out. He travelled around the world, and later met mum at a night class, when he was living in West Norwood, she lived in Wandsworth and was working at St Georges as a lab tech, she asked him to accompany her home and that was it. He drove a Norton motor bike and they would hare around London on it. They married on 23rd Sept 1961 and i arrived in Oct 62 i would later also get married on the 23rd Sept in 1988.Dad aspired to get on and worked hard to get a house and security, he was very determined that i would speak properly and would often say what!!!? if i said bu er instead of buTTer for example and yeh instead of YES! he would also chastise friends visiting if they did the same. As a consequence i do the same with the boys he taught me that mis pronunciation jarrs, whether right or wrong as accents are great things too.
I got on well with Uncle John when he came over in 1996 when Dad became ill he was different to dad and this was highlighted further when the three brothers came together for the first time in 30 years for his last birthday on May 12th 1996 when i went up with John and Adam who was only a month old then and Joe 4 to mum and dad's in Thirsk North Yorks and uncle Gerald and Aunt Annie came over from Paris. Dad was clearly the odd one out of the three and on occasion became exasperated with their banter, but this was also due to his illness Cancer on the pelvic bone which had been diagnosed in the October previously.
The night in October 95 when mum phoned to say that Dad had been diagnosed with cancer i have to say was the single worst night of my life, it was the start of things changing, i think it was probably worse than losing him in a way, just such a bolt from the blue.
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| Me and Dad around 1973 |
So that makes him sound awful but he wasn't, i think for both of them i was the child they thought they might never have and i was the only one they could have, Dad had already had prostrate cancer when i was 6 months old ensuring i would never have siblings and mum miscarried before she had me and had me at age 40, i literally made it by the skin of my teeth!
Dad would do anything really, he was a great taxi service and when i had the infamous parties at the school hall he would come for the evening as the appropriate adult but would let us get on with having fun. He taught me how to master the basics in driving before paying for lessons until i passed. He bought a cheap car during my lessons so that if i damaged it....which i did! it wasn't too much of a problem, he laughed when i swung in through the gates left handed and jammed the passenger side on the gate post.
He paid for music lessons and school trips, he joined the PTA and was chair during the transition from Grammar to Secondary which happened the year that i left. He would take me to work when he was on call and i would play with the centrifuge and he would point out what he was looking for on a film when looking through the microscope {he was a haematologist}. My early memories are of him coming home at lunchtime in his Army uniform and seeing him taking blood in a tent for charity at the annual tattoo so that people could find out what blood group they were, my goodness wouldn't get away with that now!
After i left home i would return for weekends and on occasion we would go out for a drink together, he told me once that should he go after mum {he never really believed that he wouldn't} that he would move into a smaller place and i would have to make the decision on whether he was coping or not, later he was to tell my aunt that he would have moved in with us if we wanted to help with childcare. He saw Joe for 4 years and adored him. He would take him to the shops for toys when we visited and bounce him on his knee, but if he was naughty his voice would get serious and Joe would know that he couldn't push things any further.
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| Mum and Dad 1993 |
Dad loved reading, Dickens especially, his favourite being bleak House and we would go to the library every Saturday together, he always had a book in his hand to read. He also loved classical music and had quite a collection, i initially professed not to like it but then in music lessons was introduced to Holst and came home raving about it and gradually listened to more, and now have a collection of my own, however less than dad. He also was a great gardener, as a child i don't remember mum buying vegetables. Dad had an allotment and on occasion i would wander down there to help and have a chat. He had a greenhouse at home and would wander down each night for a cigarette, you could see the tip of it burning in the dark, he grew tomatoes in the green house and would bring me the first crop especially, as they were and have always been my absolute favourite veg, there is nothing to compare with the taste of home grown tomatoes.
When we bought the flat in London he helped with the deposit and when we had the chance to buy the freehold he financed that. He and mum would visit every month or so driving down from Thirsk where they moved to in 89 and he would always bring some cuttings and plants for the garden. He never got to see the house and the big garden we have here, mum came once after he died.
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| Dad and Adam |
I feel that he and mum have been around since their passing and odd things happen which would take me so long to write here that make me believe that there is more than this.
There was something going on around his death too....... for ages during his illness i had thought that i would want to write to him to let him know how much i loved him and how much i appreciated all he had done for me, we were never so physically demonstrative that i could feel comfortable doing that in person. The last time i spoke to him he phoned and asked if i could get him into hospital for a rest, however much mum was doing for him at home he actually wanted the security of being in the local cottage hospital ten minutes walk into town.
In the end the district nurse came in over the weekend and he went in. I decided that whilst he was in for a bit of respite i would write to him it would bypass mum and just be between him and me.
On the day that Uncle John had returned to Australia after seeing dad, his father in law died! poor uncle John had to return with Winnie the following week to get her mum sorted into a home and sell the property. It took a good while and when they knew they were going to have it all sorted they booked to go and see dad a couple of weeks before the date of travel as it was cheaper. Auntie phoned and asked if they could come to me for a few hours as the connections from Kent to Yorkshire were a few hours apart, as i was on maternity leave i said that i would come down and collect them from Lamberhurst and take them directly to Victoria. Dad was admitted into hospital a week before i was due to collect them.
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| Last pic of me and Dad he died a month later. |
I then went down to collect John and Winnie, in tears at times whilst i was driving but pulled it together before i arrived. I told them i had news assuming that they didn't know....but mum had already told them!! I never really got to the bottom of why she never told me, because she didn't until she phoned on Tuesday morning to say he had gone 30.7.96 but something intervened anyway to ensure i got to say goodbye.
Friday 27 January 2012
Dreams aint what they used to be.
There was a time when i would be dreaming quite heavily and everything that was happening to me in that dream would seem completely real, sometimes i might not want to wake up but on other occasions the shock, tension the terror and the sadness pervading the dream would make me wake up for a few minutes with the taste of it still in my mouth and my emotions, and then i would realise that it wasn't true and breath an imperceptible sigh of relief, put it behind me and carry on with my day.
Now the reverse applies i find myself feeling that same shock and that same terror, tension and sadness but i can't wake up. You often hear the words 'it's a living nightmare' and to be honest that is the nearest that i can describe the days, when the feeling of inevitability about my situation and the fact that my cancer cannot be cured, makes me feel like i am in a waking dream or nightmare, it is a very surreal feeling especially whilst i feel so well.
If i want to completely scupper the day.... well night usually, all i need to do is start to think about the boys and my demise and how it will affect everything and what i will miss, then the tears start to roll and my mind spirals out of control and suddenly you've been in this limbo of sadness for the whole night and then have to get up and start the day.
I have learnt not to go there now, i leave the TV on sleep as i settle down and the noise and pictures fill up the empty spaces in my mind where the bad stuff can take hold. When moving through the day i talk nonchalantly about my prospects and throw it into the conversation as if it is no more than a comment on the daily news. Should the conversation steer towards my boys i have to be careful that is my trigger for not being able to hold it together, so i have to quickly check myself if this happens.
But the weirdest thing now, is that i am finding on occasion when i go to sleep my dreams are lovely and i am well and i am in my future and the cancer isn't there, and it is wonderful and gorgeous to know that i will be here for years to come in the bosom of my family......and then i wake up to reality.
Now the reverse applies i find myself feeling that same shock and that same terror, tension and sadness but i can't wake up. You often hear the words 'it's a living nightmare' and to be honest that is the nearest that i can describe the days, when the feeling of inevitability about my situation and the fact that my cancer cannot be cured, makes me feel like i am in a waking dream or nightmare, it is a very surreal feeling especially whilst i feel so well.
I have learnt not to go there now, i leave the TV on sleep as i settle down and the noise and pictures fill up the empty spaces in my mind where the bad stuff can take hold. When moving through the day i talk nonchalantly about my prospects and throw it into the conversation as if it is no more than a comment on the daily news. Should the conversation steer towards my boys i have to be careful that is my trigger for not being able to hold it together, so i have to quickly check myself if this happens.
But the weirdest thing now, is that i am finding on occasion when i go to sleep my dreams are lovely and i am well and i am in my future and the cancer isn't there, and it is wonderful and gorgeous to know that i will be here for years to come in the bosom of my family......and then i wake up to reality.
Tuesday 24 January 2012
Be loud Be Clear!!!! Symptomatic neglect!
It is bowel cancer awareness week, looking at other blogs and peoples experiences of being diagnosed a lot of people did the right thing they went to their doctor, even though they may not have been listened to at first that is where they went.....i did once and too late. Why was that?.....what would i have done differently and why did i ignore the symptoms for so long, in fact why did i never really persue a diagnosis?
- Medical history doesn't excuse symptoms.
At age 6 months old i was very poorly. I reacted badly to a pudding of fresh fruit with sugar, i dehydrated and started to have febrile fits. Mum told me that they gave me 50 50 they didn't know what was wrong but luckily i pulled through and within a short time was well enough to go home. Now my mother and father being fairly intelligent people and who both worked at hospitals in labs became too clever for my own good possibly. Mum decided in her wisdom that if it was fruit that caused my reaction then this should be limited and somehow decided that i should be given glucose to help ward off future problems and reduce sugar intake. I remember whenever i had a glass of water i had a teaspoon of glucose in it, i have tried it once later in life and it was bloody awful. I was also limited to one orange at a time as it would cause loose stools, which i guess happens with a lot of people. Anyway it set a seed in my head that i suffered with bowel problems and unlike other people changes in bowel habit was normal for me. This continued from being a child to being an adult, i would never in a million years think it was worth bothering the doctor about my bowel habits...
What should i have done in retrospect?...I should have seen a doctor at some point to get a proper diagnosis of IBS, i was self diagnosed, i did take Joe to see the doctors for changes in bowel habit when he was about 11 and he was diagnosed with IBS but never for myself. Would it have made a difference i don't know but it is something i really should have done.
- Pain is there for a reason.
The other thing i ignored was definite pains. I would find very often that i would be out and suddenly get really gripeing colicky pains and then a sudden urge to go to the loo, oddly enough it seems to happen when i was shopping, maybe the walking around i don't know. Somehow i was always able to ride it through, i would stand in the shop or wherever i was and discretely just clench and breathe until the feeling of urgency passed. But i would have to ride the pain and pain is there for a reason. I should have gone to the doctor to explain that i would have these awful stomach pains and the urgent need to go, i didn't.... i told myself it was part and parcel of my IBS and something i just had to deal with.
- What was normal for me wasn't even normal anymore.
Has to be said that this was nearer the time i was diagnosed but still i carried on without seeking help. I found that i started to feel like i hadn't finished pooing properly that there was more, but try as i might nothing would come so i just give up. I also noticed that my stools were smaller than normal, ribbon stools that are described as a typical symptom. What i should have done is look these symptoms up on the net, but i didn't, i should have also visited my doctor but i didn't bother with that too. It was just an odd symptom. I also noticed a bit of mucus too but put it down to food not digesting, or maybe i didn't even query it.
- They wouldn't even take my blood.
I always used to be a blood doner, it was something that i had never considered not doing, Dad was a haematologist and mum a phlebotamist it was the family business :o) Nearer the time of my diagnosis the blood kept rising to the surface, i was anaemic, i must go home see the doctor and get some iron tablets. I did, but me and the doctor didn't really discuss more than a change of diet and heavy periods.
- I am never ill
Three years without a day off sick, i am if not actually physically fit, a nevertheless healthy individual. I really couldn't have anything really wrong with me and i am a really easy patient if i have to be, this drawn from my only interface with a hospital being the birth of my three boys. All went fairly swimmingly gas and air and nothing more required. So i wouldn't even think of worrying about being actually ill in anyway. If you walk around with that kind of security about your personal health you don't worry about signs and symptoms.
- The pain was never too much
I finally went to the doctor about symptoms directly related to the unknown tumour a week or so before going on holiday to Egypt, where i would eventually be in so much agony with stomach pains that i would finally call for a doctor to try and relieve the pain which would just not go away, i still suffered the rippling waves of pain in my stomach and a total inability to go to the loo at all, no matter how hard i tried all night, before calling for help in the morning by which time i was like an animal and looked at least 6 months pregnant with the way my stomach had distended from the bowel blockage.
I had spent another night in not inconsiderable pain that week before going away, but although it kept me awake all night by the morning it had gone, but i called and made an appointment anyway and called work to say that i wouldn't be going in through lack of sleep.
The doctor felt my stomach and asked about whether it was painful to urinate, but he didn't ask me any questions about bowel cancer symptoms. If he had asked about
Change in bowel habit TICK
Stomach Pain TICK
Anaemia TICK
Not feeling i had finished TICK
Thinner Stools TICK
Mucus TICK
What he wouldn't have got was blood in stools i never experienced this. His diagnosis was a urine infection, he gave me tablets which i never even took as i knew it wasn't this. What i should have done was push the point, this pain had kept me awake all night!! maybe he should have pushed the point too, he was also a doctor i didn't feel too comfortable with and would usually ditch in favour of someone else, i wasn't prepared i guess to pursue matters with him, another doctor i may have done and indeed another doctor may have felt the lump that must have been apparent in the colon asked some questions and got some tests sorted....but it would have ruined my holiday! :o)
So i merrily went on my way and had a holiday half from hell and half well i didn't eat a thing from the day i had the blockage as i didn't want to go through it again, for those who know how i love my food they will know how bad that pain must have been and if i had at any point bothered to question what was happening to my body and how i was feeling i would never needed to have made that decision because it would have all been done and dusted by then. As it was on landing in Gatwick from my holiday with the boys i left the plane in an ambulance and had my op 4 days later.
This picture is of me at the valley of the kings on the morning that i was taken ill, 24 hours later i would be nearly incoherant with the pain of the tumour blocking my bowel.
So people just need to know the symptoms, that's the main thing....you need to be armed to fight instead of bullets you need a knowledge of symptoms, it doesn't take long to learn but it could save your life, early diagnosis 90% cure!!!
This picture is of me at the valley of the kings on the morning that i was taken ill, 24 hours later i would be nearly incoherant with the pain of the tumour blocking my bowel.
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| Me and the boys 23.8.07 The morning before i became ill 2nd day in Egypt. |
So people just need to know the symptoms, that's the main thing....you need to be armed to fight instead of bullets you need a knowledge of symptoms, it doesn't take long to learn but it could save your life, early diagnosis 90% cure!!!
Saturday 21 January 2012
Thoughts on Dying, without trying to be toooo morbid!
When i think of what it might be like to die, because believe me i have considered it a few times over the last year or so, i have two thoughts. One it will be nothing and if it is nothing then it won't bother me, the other is that there is something, now don't get me wrong i don't have a faith, but i am also very open to the suggestion that this is not it. I don't believe in God i think God is something that man has manifested in order to give himself purpose. I do not understand the idea that Jesus died for us, what God would believe that this was a sacrifice worth making and the whole idea of it just doesn't make sense. The creationist theory doesn't stand up and of course it would have to be the woman who gets punished for eating the apple. Buddhism has been the nearest i have gone towards faith as it comes from within they don't look at external mystical sources to underpin their faith.
Anyway energy doesn't just disappear does it? What ever the life force is that commands our body and thoughts be it a soul or spirit can't just dissipate and become nothing....well this is what i am counting on and the thought that i will never see my parents again or my children is too awful to contemplate anyway....so i don't!
I think of all the people who have died before, we have all known we have it coming so i will just meet my fate that much earlier. It is all relative anyway, i could argue with someone that at least they got to see their kids grown and settled before they die, then what about the girl i knew who died a few years ago suddenly from lupus, who at 27 never got to experience the joy of motherhood or leave her legacy behind, talk to the parents of the baby who died stillborn and at least i saw my children grow and flourish. It is all relative so i never ask why me or be moan my lot, i feel far more sadness for my boys who in the future will wonder how i would have handled that situation or realise that in this situation i would have done this or that for them, as i have done when remembering my dad and all the lost moments that we never got to share or that he got to see.
The one thing that gives me peace and calm about dying is that if there is something beyond this existence then my parents are already there and waiting and it would be so good to see them again with all my uncles and Aunts that i have lost recently. When i imagine the point of passing on in my head i see mum and dad and have the feeling of walking into a completely new experience completely overwhelming but tempered by their love and support. I have never thought that it would be awful and i have never dwelt on the pain that maybe in place and yes harping back to the beginning it is just maybe nothing and if it is well that's me gone, but i tend towards there being another life however alien a concept that it is, it is less alien to me than the existence of an omnipotent God.
However i know that i will be buried by a baptist minister, how hypocritical does that sound! and i am happy for her to carry out a service, because she is also a good friend and neighbour. She lives next door and has been so helpful and supportive when i haven't been well and she knows me. I have attended too many funerals where the celebrant has appeared at the last minute and had a half hour chat with the family in order to encapsulate the essence of a person's life. I feel lucky for me and especially the boys that Carol will be there to arrange it all before i go and then deliver what i want at the end. Through Carol's influence and attending the youth club and going ot soul survivor the boys are far more faithful than me, even though i spent my youth going to sunday school and my parents were faithful to the end in the church of england and were a big part of the christian community where they lived, so having a christian service will mean more to them than to me.
The service will be what i want i firmly see it as my way of saying goodbye, the advantage of knowing that your time is on it's way is the preparation that you can make in saying goodbye and ensuring that as much as you can your feelings are expressed and legacies left. I feel very strongly about leaving words of the future, i remember watching Gavin and Stacy of all things and finding the scene in the car on the way to the wedding so emotional when Stacy's uncle reads her a letter from her dad who passed away, telling her how he wished he could be there and leaving her words of wisdom. That appeals to me so that somehow although you are not there you can still have some input into a special moment.
I have started to write things down in a book and of course there is this blog which the boys and my friends in the 'real' world do not have access to at the moment as i would feel too vulnerable for people i see on a daily basis to read what i am writing here, but those of you who read this because we have connected through our shared experience of cancer or have found this looking through, are quite welcome, you either understand enough of what i am saying or are far away enough not to compromise how i feel about writing all this down. But when i am gone or maybe nearer the end then i hope it will be of some comfort or of interest for those i know personally to read it.
Anyway energy doesn't just disappear does it? What ever the life force is that commands our body and thoughts be it a soul or spirit can't just dissipate and become nothing....well this is what i am counting on and the thought that i will never see my parents again or my children is too awful to contemplate anyway....so i don't!
I think of all the people who have died before, we have all known we have it coming so i will just meet my fate that much earlier. It is all relative anyway, i could argue with someone that at least they got to see their kids grown and settled before they die, then what about the girl i knew who died a few years ago suddenly from lupus, who at 27 never got to experience the joy of motherhood or leave her legacy behind, talk to the parents of the baby who died stillborn and at least i saw my children grow and flourish. It is all relative so i never ask why me or be moan my lot, i feel far more sadness for my boys who in the future will wonder how i would have handled that situation or realise that in this situation i would have done this or that for them, as i have done when remembering my dad and all the lost moments that we never got to share or that he got to see.
The one thing that gives me peace and calm about dying is that if there is something beyond this existence then my parents are already there and waiting and it would be so good to see them again with all my uncles and Aunts that i have lost recently. When i imagine the point of passing on in my head i see mum and dad and have the feeling of walking into a completely new experience completely overwhelming but tempered by their love and support. I have never thought that it would be awful and i have never dwelt on the pain that maybe in place and yes harping back to the beginning it is just maybe nothing and if it is well that's me gone, but i tend towards there being another life however alien a concept that it is, it is less alien to me than the existence of an omnipotent God.
However i know that i will be buried by a baptist minister, how hypocritical does that sound! and i am happy for her to carry out a service, because she is also a good friend and neighbour. She lives next door and has been so helpful and supportive when i haven't been well and she knows me. I have attended too many funerals where the celebrant has appeared at the last minute and had a half hour chat with the family in order to encapsulate the essence of a person's life. I feel lucky for me and especially the boys that Carol will be there to arrange it all before i go and then deliver what i want at the end. Through Carol's influence and attending the youth club and going ot soul survivor the boys are far more faithful than me, even though i spent my youth going to sunday school and my parents were faithful to the end in the church of england and were a big part of the christian community where they lived, so having a christian service will mean more to them than to me.
The service will be what i want i firmly see it as my way of saying goodbye, the advantage of knowing that your time is on it's way is the preparation that you can make in saying goodbye and ensuring that as much as you can your feelings are expressed and legacies left. I feel very strongly about leaving words of the future, i remember watching Gavin and Stacy of all things and finding the scene in the car on the way to the wedding so emotional when Stacy's uncle reads her a letter from her dad who passed away, telling her how he wished he could be there and leaving her words of wisdom. That appeals to me so that somehow although you are not there you can still have some input into a special moment.
I have started to write things down in a book and of course there is this blog which the boys and my friends in the 'real' world do not have access to at the moment as i would feel too vulnerable for people i see on a daily basis to read what i am writing here, but those of you who read this because we have connected through our shared experience of cancer or have found this looking through, are quite welcome, you either understand enough of what i am saying or are far away enough not to compromise how i feel about writing all this down. But when i am gone or maybe nearer the end then i hope it will be of some comfort or of interest for those i know personally to read it.
Musically speaking.
I love pick of the pops on radio two and i am listening to it now. Music has always been important all through my life. As a child in the 60's on a Saturday would walk next door as they had a TV and we didn't to watch The Monkees last year in May i went to see them for the first time at The Albert Hall with some friends, a real dream come true even if Mike Nesmith who was my favourite wasn't there. We had quite good seats and at one point during 'Alittle bit me a little bit you' i connected with Pete who i am convinced looked at me whilst singing, how could he have missed my bald head, i was on chemo at the time and was so warm i thought sod it and took the wig off.
My other early musical memory is the dancette record player and the very few records that we had that i liked to listen to. Mum had bought Uncle Mac 45's which were OK but the album i ordered and would ask to have put on at the age of 5 or so was The Beatles A Hard Days Night, my parents weren't ordinarily interested in chart music but they had heard so much about this new band called the Beatles that they bought one album. It remains my favourite of theirs to this day and i know every word note and phrase off by heart.
Mum would listen to radio Two and i remember Jimmy Young and when i hear the sounds of the sixties i can sometimes be transported back to the particular house that we lived in at the time...it remains my station of choice and i listen to it at work and home maybe to the annoyance of the guys at work.
We moved around a lot until i was Seven as Dad was in the army, royal army medical cour. I was born in Woolwich though they lived in Hounslow at the time but the army maternity hospital was there. It always seems ironic that i ended up getting married in Woolwich and live not far away now but up until the age of 18 when i came to London i never went near there at all again.
So we lived in Hounslow and then to Singapore for a year, back to Colchester and then Mill hill, Aldershot which i loved and is where i met Jayne who i am still in contact with to this day, another story, Then dad came out of the army after 22 years and we moved to Gt Yarmouth in Norfolk so that i would have some stability at school. In hindsight it wasn't the best move for me i didn't like the new school and apart from being bullied by pupils as i wasn't'local' i was bullied by a teacher too who is the only person i don't think i can ever forgive or feel less hatred for now i am so much older.
I moved to the junior school the following year thank goodness and made friends with Debbie Dye, Debbie and i lived quite close to each other and spent all our time together out of school, we nicked our first make up from the local shop and am appalled to say, i think it was an eye shadow, it was the only time and i don't really know why we decided to do that. We made blue peter dolls houses out of cardboard boxes and listened to records at my house in the front room. When we left Junior school we both went to the grammar school but Debbie went into another class and although we remained friends we were never as close as we were when younger. When i left the area to come to London a couple of years later i heard that she had been diagnosed with a brain tumour, i went to see her the next time i went home and i remember her showing me the shunt she had draining the operation site, she still had her long dark hair but underneath it was all shaved away. We had a nice afternoon together and i never saw her again, mum and dad in a few years moved to north Yorkshire and i had lost contact with Debbie by then. In 2010 i attended a school reunion and saw Rosemary who lived on Debbie's road and was the same age, i always knew she would know what happened to Deb and sure enough as i thought might have been the case she told me that she had died 10 years ago.
As i grew older my record collection grew, i would avidly listen to the chart show on a Sunday whilst having a bath and tape it too by putting the radio next to a tape recorder. I would then write down the chart and also had Disco 45 each week to check the lyrics. I bought Jackie and would cover my bedroom wall with posters, mainly of David Cassidy not Donny but now having seen them both on the TV David Cassidy is a very unlikeable self absorbed character and Donny far more personable.
I also loved Queen and in 1979 another fan at school called Peter suggested that we arrange to go and see them. We got about 15 tickets for their Christmas gig at the Alexandra palace in London and arranged to hire a van. My dad as usual came up trumps and said that he would be happy to drive us down. So me and my friend Hilary and Peter and various other guys from different years in the school piled in on the morning of the 22nd Dec 1979 and headed for London. We got there really early and were at the head of the queue, it was freezing and we must have been standing there for 6 hours but we were young and enthusiastic and it didn't matter. When the doors opened we charged in and got to the very front. There was the main stage and then a cat walk that jutted out into the crowd. It came up to just above my chest i stuffed my bag in front of me and had my arms leaning onto the stage itself. It was worth the wait as the concert was fantastic it was the crazy tour so all the main hits had already been released including Bohemian Rhapsody which they played. But the most wonderful thing was when Freddie came in for his encore singing we are the champions sitting on the arms of superman, he jumped down and whilst he was singing reached into the crowd and grabbed my outstretched hand!!!!! mine!!! my right hand to be precise and as he held onto it a pile of hands like ivy on a tree latched onto my arm and hand to try and get to him too. When he let go and after all the other hands had released in defeat one more hand grabbed mine and in my ear i heard this man's voice say 'that will do for me,' {the hand that held Freddie's}.
So Queen was a staple and i bought each album as it was released and spent hours on my own in the front room listening to them.
Each week i would save my money and buy a 45 for about 50p. I would then buy albums and to this day is still have all of them stored away i cannot envisage a day when i won't have my vinyl. The 45's came in very handy when i started to have my parties. My parties became infamous not sure how but initially they were the very awkward 12 year old affairs with 10 girls and 2 token guys. Gradually they just got bigger and the numbers of boys nd girls started to equal out. They stopped marking special occasions IE my birthday and it just settled into, about time we had a party. Once the decision was made then the lists had to be drawn up who was in and who was out, what boys needed to be there IE who fancied who? As always music was provided by myself and as the parties got bigger i had another ace up my sleeve my mother was responsible for booking the village hall, so we just had to check her diary to see when it was free and bingo!
Dad would always come to be the adult in attendance, but he would usually just sit in the second smaller room and let everyone get on with it, we drank cider and dubonnet or Martini, some would bring a party four and we would just go for it, there would be kissing in the corners and in other corners those who couldn't hold their drink kas well as they thought would well you can imagine. It was all a bit wild at times and when i look back and think about how kids today are branded wonder why as we were much worse!....or maybe that's just me?
The next stage came when we all started to turn 18 and we moved up a notch again to book local function rooms for birthdays so the final year at school was an endless round of 18th birthday party invites in more salubrious surroundings and i think by then we had worked out our riotous years and were now smart and sophisticated.
I have continued my love of music since leaving home that summer after working in Tiffany's night club on the sea front. I worked in the buffet avoiding the bar for my lack of adding up skills. That was a great summer of Radio One special DJ nights where i saw DLT, Steve Wright, Noel Edmonds, Peter Powel, Simon Bates etc..... the best of the bunch? Simon Bates who hung out with us afterwards and bought everyone drinks. We also had cabaret at times and i remember Bernie Of he and the Ostrich fame coming in to borrow knives and forks for a gag he was going to do. We also had splogginess abounds on when one of them infamously set their hair alight during a fire eating act the punters graciously threw their beer over him to put him out before taking him to hospital. Funnily enough recently on Facebook a thread started on them and i mentioned this memory to which the actual band member replied as he was friends with someone i knew too.
Since leaving home i have continued to attend gigs and then very late in life started to go to Glastonbury, last year when i lost my hair with chemo friends collected 200 pounds for me to get a wig, i didn't need that much and so they paid for my Glasto ticket for me. The pic above is one of the favs that i have taken when going there, just walking down through the tipi field i caught this couple kissing, it's a very Glasto pic. Below is me there last year with a bunch of friends wearing a stetson i was sent from Texas by someone i went to school with who lives there now. Sarah the skinny tall one has turned out be a fantastic friend and who was responsible for me going to Glasto in the first place as she arranged ot have a her 40th there however i was the only one to get tickets so went with the boys on my own, but we have gone together ever since tickets willing. Jan the little on in the hat is my long time friend in London we worked together in 1982!! She is the friend who can't help crying if we talk about me going. Sarah had breast cancer herself a year or so before i was diagnosed and i remember how i felt when i was told which helps me understand when i tell others, i can be too blase sometimes and i forget how it can shock and affect people, after all it is only me!
When mum died i downloaded a load of Jim Reeves on i tunes and loaded it onto my ipod with other soothing classical pieces and other songs i knew she liked and some that i thought she would like. I had it playing on a speaker in her room randomly as she died. It is often said that hearing goes last and i wanted her to not be left with no stimulation at all.
Beth neilsen Chapman holds a specail place for me and i saw her a couple of years ago too and met her after the gig. I was able to tell her how her music had affected my life and that is quite a special thing to do. The last time i had to say goodbye to mum as i was going home she said "oh don't say goodbye it is so final just say aurevoir' the next time i saw her she wasn't able to speak so coherently. At her cremation i played 'say goodnight' which Beth wrote after the death of her husband from cancer...the following line is not goodbye, it was very apt and a beautiful song. You can find it on her album Sand and Water, Sand and Water is also a beautiful song about loss and grief. I will try and insert a link to it
www.bethnielsenchapman.com
There that works and to the amazon site for her music too, she has had breast cancer herself and a brain tumour, her writing is lovely musically and lyrically. Have alook through her stuff there is lots there only love another that i can relate too, so many
http://www.amazon.co.uk/Sand-Water-Beth-Nielson-Chapman/dp/B000002NDY/ref=sr_1_11?ie=UTF8&qid=1327158647&sr=8-11
I do a lot of thinking about what songs i would have at my funeral, even before i was ill it is something that i would ponder on. The boys know that 'don't stop me now' by Queen is on the list. I love a good hymn too and would likely use Dear lord and Father that i used at mum's funeral as i love it so. The list changes here and there the Say goodnight would be there too and i think at the cremation.....yes i have indeed thought about it!!! The Lark Ascending by Vaughn Williams i love classical music through my dad's influence, it is a beautiful piece and i love the soaring notes as the swallow disappears into the sky at the end........
Mum would listen to radio Two and i remember Jimmy Young and when i hear the sounds of the sixties i can sometimes be transported back to the particular house that we lived in at the time...it remains my station of choice and i listen to it at work and home maybe to the annoyance of the guys at work.
We moved around a lot until i was Seven as Dad was in the army, royal army medical cour. I was born in Woolwich though they lived in Hounslow at the time but the army maternity hospital was there. It always seems ironic that i ended up getting married in Woolwich and live not far away now but up until the age of 18 when i came to London i never went near there at all again.
So we lived in Hounslow and then to Singapore for a year, back to Colchester and then Mill hill, Aldershot which i loved and is where i met Jayne who i am still in contact with to this day, another story, Then dad came out of the army after 22 years and we moved to Gt Yarmouth in Norfolk so that i would have some stability at school. In hindsight it wasn't the best move for me i didn't like the new school and apart from being bullied by pupils as i wasn't'local' i was bullied by a teacher too who is the only person i don't think i can ever forgive or feel less hatred for now i am so much older.
I moved to the junior school the following year thank goodness and made friends with Debbie Dye, Debbie and i lived quite close to each other and spent all our time together out of school, we nicked our first make up from the local shop and am appalled to say, i think it was an eye shadow, it was the only time and i don't really know why we decided to do that. We made blue peter dolls houses out of cardboard boxes and listened to records at my house in the front room. When we left Junior school we both went to the grammar school but Debbie went into another class and although we remained friends we were never as close as we were when younger. When i left the area to come to London a couple of years later i heard that she had been diagnosed with a brain tumour, i went to see her the next time i went home and i remember her showing me the shunt she had draining the operation site, she still had her long dark hair but underneath it was all shaved away. We had a nice afternoon together and i never saw her again, mum and dad in a few years moved to north Yorkshire and i had lost contact with Debbie by then. In 2010 i attended a school reunion and saw Rosemary who lived on Debbie's road and was the same age, i always knew she would know what happened to Deb and sure enough as i thought might have been the case she told me that she had died 10 years ago.
As i grew older my record collection grew, i would avidly listen to the chart show on a Sunday whilst having a bath and tape it too by putting the radio next to a tape recorder. I would then write down the chart and also had Disco 45 each week to check the lyrics. I bought Jackie and would cover my bedroom wall with posters, mainly of David Cassidy not Donny but now having seen them both on the TV David Cassidy is a very unlikeable self absorbed character and Donny far more personable.
I also loved Queen and in 1979 another fan at school called Peter suggested that we arrange to go and see them. We got about 15 tickets for their Christmas gig at the Alexandra palace in London and arranged to hire a van. My dad as usual came up trumps and said that he would be happy to drive us down. So me and my friend Hilary and Peter and various other guys from different years in the school piled in on the morning of the 22nd Dec 1979 and headed for London. We got there really early and were at the head of the queue, it was freezing and we must have been standing there for 6 hours but we were young and enthusiastic and it didn't matter. When the doors opened we charged in and got to the very front. There was the main stage and then a cat walk that jutted out into the crowd. It came up to just above my chest i stuffed my bag in front of me and had my arms leaning onto the stage itself. It was worth the wait as the concert was fantastic it was the crazy tour so all the main hits had already been released including Bohemian Rhapsody which they played. But the most wonderful thing was when Freddie came in for his encore singing we are the champions sitting on the arms of superman, he jumped down and whilst he was singing reached into the crowd and grabbed my outstretched hand!!!!! mine!!! my right hand to be precise and as he held onto it a pile of hands like ivy on a tree latched onto my arm and hand to try and get to him too. When he let go and after all the other hands had released in defeat one more hand grabbed mine and in my ear i heard this man's voice say 'that will do for me,' {the hand that held Freddie's}.
So Queen was a staple and i bought each album as it was released and spent hours on my own in the front room listening to them.
Each week i would save my money and buy a 45 for about 50p. I would then buy albums and to this day is still have all of them stored away i cannot envisage a day when i won't have my vinyl. The 45's came in very handy when i started to have my parties. My parties became infamous not sure how but initially they were the very awkward 12 year old affairs with 10 girls and 2 token guys. Gradually they just got bigger and the numbers of boys nd girls started to equal out. They stopped marking special occasions IE my birthday and it just settled into, about time we had a party. Once the decision was made then the lists had to be drawn up who was in and who was out, what boys needed to be there IE who fancied who? As always music was provided by myself and as the parties got bigger i had another ace up my sleeve my mother was responsible for booking the village hall, so we just had to check her diary to see when it was free and bingo!
Dad would always come to be the adult in attendance, but he would usually just sit in the second smaller room and let everyone get on with it, we drank cider and dubonnet or Martini, some would bring a party four and we would just go for it, there would be kissing in the corners and in other corners those who couldn't hold their drink kas well as they thought would well you can imagine. It was all a bit wild at times and when i look back and think about how kids today are branded wonder why as we were much worse!....or maybe that's just me?
The next stage came when we all started to turn 18 and we moved up a notch again to book local function rooms for birthdays so the final year at school was an endless round of 18th birthday party invites in more salubrious surroundings and i think by then we had worked out our riotous years and were now smart and sophisticated.
I have continued my love of music since leaving home that summer after working in Tiffany's night club on the sea front. I worked in the buffet avoiding the bar for my lack of adding up skills. That was a great summer of Radio One special DJ nights where i saw DLT, Steve Wright, Noel Edmonds, Peter Powel, Simon Bates etc..... the best of the bunch? Simon Bates who hung out with us afterwards and bought everyone drinks. We also had cabaret at times and i remember Bernie Of he and the Ostrich fame coming in to borrow knives and forks for a gag he was going to do. We also had splogginess abounds on when one of them infamously set their hair alight during a fire eating act the punters graciously threw their beer over him to put him out before taking him to hospital. Funnily enough recently on Facebook a thread started on them and i mentioned this memory to which the actual band member replied as he was friends with someone i knew too.
Beth neilsen Chapman holds a specail place for me and i saw her a couple of years ago too and met her after the gig. I was able to tell her how her music had affected my life and that is quite a special thing to do. The last time i had to say goodbye to mum as i was going home she said "oh don't say goodbye it is so final just say aurevoir' the next time i saw her she wasn't able to speak so coherently. At her cremation i played 'say goodnight' which Beth wrote after the death of her husband from cancer...the following line is not goodbye, it was very apt and a beautiful song. You can find it on her album Sand and Water, Sand and Water is also a beautiful song about loss and grief. I will try and insert a link to it
www.bethnielsenchapman.com
There that works and to the amazon site for her music too, she has had breast cancer herself and a brain tumour, her writing is lovely musically and lyrically. Have alook through her stuff there is lots there only love another that i can relate too, so many
http://www.amazon.co.uk/Sand-Water-Beth-Nielson-Chapman/dp/B000002NDY/ref=sr_1_11?ie=UTF8&qid=1327158647&sr=8-11
I do a lot of thinking about what songs i would have at my funeral, even before i was ill it is something that i would ponder on. The boys know that 'don't stop me now' by Queen is on the list. I love a good hymn too and would likely use Dear lord and Father that i used at mum's funeral as i love it so. The list changes here and there the Say goodnight would be there too and i think at the cremation.....yes i have indeed thought about it!!! The Lark Ascending by Vaughn Williams i love classical music through my dad's influence, it is a beautiful piece and i love the soaring notes as the swallow disappears into the sky at the end........
Thursday 19 January 2012
Chipping away
I'm sitting here thinking about what it is that has hit me today. I really shouldn't be surprised but i am, i have always been told that this isn't going to get better but i put that to the back of my mind. It's the gradual chipping away of the hope that makes it hard, and a big piece caming falling off today.
And what is it that makes me sad? It isn't the threat of my demise, it's the worry of what i leave behind, i love my boys but i sometimes think if i hadn't had them then i wouldn't have to worry about them. In terms of my loss i guess it is about missed events, missed grandchildren, missed occasions, missing sharing experiences. Not being there for them when they still need me, my two younger ones at least are not yet independent and able to manage as adults Joe the oldest is barely there himself but he at least is finding work and has a good relationship at the moment.
The other feeling i have apart from sadness is well it isn't a feeling it's a worry, i don't know how this will affect me physically and when?, it is like living with a timebomb. They ask how is my breathing?, my breathing is fine!! apart from me not being fit i see no difference, i feel no pain anywhere. What am i looking for? when will it start to affect me and how?
Now i feel even more that time is running out, i will have the next few months feeling rough from the chemo and i really want to make the best of what i have whilst i can do things. I want to travel with Zak and maybe the others, there is so much to sort out before i go, update will, de clutter house, have fun! do things i enjoy rather than having the stress of work.
So next thing is the practicalities, find out if the morgage is paid off should i go..if it is then i certainly won't pay it off with my pension i shall have fun with it. That's the next thing look to getting early retirement bit more tricky but in light of recent events shouldn't be that hard in theory in practice another thing, i am so good at carrying on, when i actually need to break down with it all. I am on Avastin for goodness sake it's the beginning of the end, whoever works whilst having their third dose of chemo!!!??. Just me because i am so afraid of everything crashing in if i don't and afraid of the same if i do!
Enough i need to sleep it's been emotionally draining today, i shouldn't have any problem drifting off.
And what is it that makes me sad? It isn't the threat of my demise, it's the worry of what i leave behind, i love my boys but i sometimes think if i hadn't had them then i wouldn't have to worry about them. In terms of my loss i guess it is about missed events, missed grandchildren, missed occasions, missing sharing experiences. Not being there for them when they still need me, my two younger ones at least are not yet independent and able to manage as adults Joe the oldest is barely there himself but he at least is finding work and has a good relationship at the moment.
The other feeling i have apart from sadness is well it isn't a feeling it's a worry, i don't know how this will affect me physically and when?, it is like living with a timebomb. They ask how is my breathing?, my breathing is fine!! apart from me not being fit i see no difference, i feel no pain anywhere. What am i looking for? when will it start to affect me and how?
Now i feel even more that time is running out, i will have the next few months feeling rough from the chemo and i really want to make the best of what i have whilst i can do things. I want to travel with Zak and maybe the others, there is so much to sort out before i go, update will, de clutter house, have fun! do things i enjoy rather than having the stress of work.
So next thing is the practicalities, find out if the morgage is paid off should i go..if it is then i certainly won't pay it off with my pension i shall have fun with it. That's the next thing look to getting early retirement bit more tricky but in light of recent events shouldn't be that hard in theory in practice another thing, i am so good at carrying on, when i actually need to break down with it all. I am on Avastin for goodness sake it's the beginning of the end, whoever works whilst having their third dose of chemo!!!??. Just me because i am so afraid of everything crashing in if i don't and afraid of the same if i do!
Enough i need to sleep it's been emotionally draining today, i shouldn't have any problem drifting off.
Fountains
The photo at the head of my blog is of Fountains Abbey near Ripon in North Yorkshire. It was a place my father loved and he and mum would visit there often walking through the majestic grounds in its georgian splendour, with formal arrangements and landscaping around large glass topped lakes. As you walk further you see the Abbey in the distance, walking through the cloisters is like stepping back to the peace and quiet of the Abbey all those years ago. The last time i went there was in August last year, a detour made especially to go there on the way back from Durham and the wedding we had just attended. I don't know if i will get back there again, although my neighbour has a house in northumberland that we stayed in and could again.
Dad's wishes were that his ashes were scattered at the abbey and mum did this a few weeks after he died, i have never been completely sure where his went, but 10 years later i found myself there with my mum's ashes to scatter as she wished to be with dad. I wasn't allowed to scatter them within the boundaries of the abbey and the nearest i could get was under that small green tree in the photo.
Dad's wishes were that his ashes were scattered at the abbey and mum did this a few weeks after he died, i have never been completely sure where his went, but 10 years later i found myself there with my mum's ashes to scatter as she wished to be with dad. I wasn't allowed to scatter them within the boundaries of the abbey and the nearest i could get was under that small green tree in the photo.
Taken Away
I went out for lunch with my boss and i guess good friend yesterday. We worked together 18 years ago when i was a deputy and he a support worker, bow i am the Area manager and he the regional manager...my boss. We were chatting and i was talking about whether i would be leaving work because of my op or not. At some point i made a comment about when it takes me, the cancer, he doesn't like it when i say things like that and shies away from it.
Instead of ignoring it i challenged it, 'i was talking about that with people i know who have cancer too, we said how difficult it can be when you say things like this, we see our doctors and we know what they say to us, would i disappoint you if i died?' He said no but when you care for someone it is hard to hear that kind of talk and you don't want to acknowledge it.
Today i went to see my Oncologist, just before i left work the Bowel Nurse from Guys called wanting to arrange my scans at St Thomas's so that the surgeon would be able to see them. I explained that i was in-between two camps, the surgeon i saw with her in attendance in September was very gung ho about me chances, talking about a second bite of the cherry and paying no never mind to the situation with the lungs. I had been referred to him by my colorectal surgeon when it was discovered that i now had a tumour in the pelvis, worked out that it had been there at least 2 years from the start of the symptoms.
He duly sent me off to his oncologist to sort out radiotherapy who got me to sign a consent form where she ticked cure! i felt that this wasn't completely correct from what i had been told by the oncologist at Lewisham but who is going to refuse to sign for a cure!?
A week before radiotherapy was to start i had a call from the registrar at lewisham who clumsily tried to explain why he was calling, reading between his ramblings i realised that they were changing my radiotherapy regime. Later my oncologist at Lewisham was to explain that they had no idea that i had been referred to the surgeon at Guys and only found out at a planning meeting when they saw my name on the list. They immediately raised concern that my lung mets weren't being considered and said that the radiotherapy needed to be changed so that side effects weren't so great, hence the weeks delay.
They also ensured that i signed a new consent form...they took my cure away from me, which i wasn't surprised about but still signing for palliative and prolonging isn't fun.
I saw my consultant again this afternoon for the results of my latest CT scan. Gary the bowel nurse was in the room, the last time i saw him they told me that the lungs had tumours, so i said 'why are you here, you usually don't appear unless there is bad news?' He mumbled something about being around and wanting to come in when what he should have said was...'because it's bad news!'
The oncologist went on to tell me that the tumours in my lungs had grown a bit, and that there were more but that none of them were more than a few millimetres long. However this meant that surgery was not an option. That was tough, the thought that i have to live with this tumour in my pelvis, i wanted it out when i first heard of it and although it would be a huge operation i still wanted it out. But this isn't going to be, i asked if i maybe able to have it later...no, the lung mets are far more worrying and more likely to get me before the pelvic tumour. So i don't have to have major invasive life changing surgery and i am gutted!
Then he said that he wanted to get me onto chemo as soon as possible, to return in two weeks after having an MRI scan, he would contact the bowel nurse at guys re the scans arranged at St Thomas's.
What chemo was i going to have? Oxalyplatin and Capecitabine that i had before, they worked but i have had numb feet every since and this would likely make it worse, but the icing on the cake i will have Avastin too. Avastin always comes across as the end of the road chemo, i didn't think i was at that junction yet i feel well and healthy, no breathing problems, no pain, no weight loss in fact everyone remarks upon how well i look!
It's a lot to take in i shed a few tears, but i can always bring myself back. Gary the bowel nurse said he was there if i needed anything i said i wouldn't, he said he would be there, i said that i would be unlikely to call as i never need anything. On reflection i may have been a bit rude i don't know but i knew that i wouldn't call and was just trying to explain that.
I took the MRI request form up to X Ray, before doing that the nurse who i always banter with when she weighs me called me back saying don't you have an appointment to make with us? She could see the other form in my hand that i had forgotten about. Oh yes, so i went and waited for the appointment to be made Feb 2nd at 2.30pm.
This is hard, this is tough really, i have coasted up till now i think, always thinking i had a few more years at least and maybe completely blocking it out at times, but now it looks as though it is being shaved away. It's not easy to feel the creeping onset of illness when you feel so well though, but i am now getting a taste of it.
Luckily i walk to the hospital, it's a lovely walk through the park, apart from the guilt i always feel for having the walk without the dogs but the last time i took them with me and then tied them up in the park whilst i had a quick appointment, i came back to find a very well meaning woman had phoned the RSPCA to report them abandoned, luckily they hadn't come yet, and then when i went to have bloods done and a friend came with me to look after them Rudy ran off immediately after i disappeared and remained missing until i came back. We spent a half hour wandering around the first park area looking for him until we gave up and walked over the spiral bridge that crosses the rail track and on towards where i had left the car only to find him sitting by it expectantly awaiting our return, that! i thought was very cute and loyal and forgave him the half hour wasted looking for him elsewhere....my friend however was less forgiving.
I walked back this time on my own to the same spot over the bridge and then over the river and through the newly landscaped river bank and river walk that the council put in last summer, at times you would think you were in the country not the middle of Lewisham. That walk is a godsend the cool late afternoon air clears your mind and just walking with your thoughts can calm things right down.
Luckily the boys were at Jam club after school so i had a while before they came home to compose myself.
And then i made the dinner.
Instead of ignoring it i challenged it, 'i was talking about that with people i know who have cancer too, we said how difficult it can be when you say things like this, we see our doctors and we know what they say to us, would i disappoint you if i died?' He said no but when you care for someone it is hard to hear that kind of talk and you don't want to acknowledge it.
Today i went to see my Oncologist, just before i left work the Bowel Nurse from Guys called wanting to arrange my scans at St Thomas's so that the surgeon would be able to see them. I explained that i was in-between two camps, the surgeon i saw with her in attendance in September was very gung ho about me chances, talking about a second bite of the cherry and paying no never mind to the situation with the lungs. I had been referred to him by my colorectal surgeon when it was discovered that i now had a tumour in the pelvis, worked out that it had been there at least 2 years from the start of the symptoms.
He duly sent me off to his oncologist to sort out radiotherapy who got me to sign a consent form where she ticked cure! i felt that this wasn't completely correct from what i had been told by the oncologist at Lewisham but who is going to refuse to sign for a cure!?
A week before radiotherapy was to start i had a call from the registrar at lewisham who clumsily tried to explain why he was calling, reading between his ramblings i realised that they were changing my radiotherapy regime. Later my oncologist at Lewisham was to explain that they had no idea that i had been referred to the surgeon at Guys and only found out at a planning meeting when they saw my name on the list. They immediately raised concern that my lung mets weren't being considered and said that the radiotherapy needed to be changed so that side effects weren't so great, hence the weeks delay.
They also ensured that i signed a new consent form...they took my cure away from me, which i wasn't surprised about but still signing for palliative and prolonging isn't fun.
I saw my consultant again this afternoon for the results of my latest CT scan. Gary the bowel nurse was in the room, the last time i saw him they told me that the lungs had tumours, so i said 'why are you here, you usually don't appear unless there is bad news?' He mumbled something about being around and wanting to come in when what he should have said was...'because it's bad news!'
The oncologist went on to tell me that the tumours in my lungs had grown a bit, and that there were more but that none of them were more than a few millimetres long. However this meant that surgery was not an option. That was tough, the thought that i have to live with this tumour in my pelvis, i wanted it out when i first heard of it and although it would be a huge operation i still wanted it out. But this isn't going to be, i asked if i maybe able to have it later...no, the lung mets are far more worrying and more likely to get me before the pelvic tumour. So i don't have to have major invasive life changing surgery and i am gutted!
Then he said that he wanted to get me onto chemo as soon as possible, to return in two weeks after having an MRI scan, he would contact the bowel nurse at guys re the scans arranged at St Thomas's.
What chemo was i going to have? Oxalyplatin and Capecitabine that i had before, they worked but i have had numb feet every since and this would likely make it worse, but the icing on the cake i will have Avastin too. Avastin always comes across as the end of the road chemo, i didn't think i was at that junction yet i feel well and healthy, no breathing problems, no pain, no weight loss in fact everyone remarks upon how well i look!
It's a lot to take in i shed a few tears, but i can always bring myself back. Gary the bowel nurse said he was there if i needed anything i said i wouldn't, he said he would be there, i said that i would be unlikely to call as i never need anything. On reflection i may have been a bit rude i don't know but i knew that i wouldn't call and was just trying to explain that.
I took the MRI request form up to X Ray, before doing that the nurse who i always banter with when she weighs me called me back saying don't you have an appointment to make with us? She could see the other form in my hand that i had forgotten about. Oh yes, so i went and waited for the appointment to be made Feb 2nd at 2.30pm.
This is hard, this is tough really, i have coasted up till now i think, always thinking i had a few more years at least and maybe completely blocking it out at times, but now it looks as though it is being shaved away. It's not easy to feel the creeping onset of illness when you feel so well though, but i am now getting a taste of it.
Luckily i walk to the hospital, it's a lovely walk through the park, apart from the guilt i always feel for having the walk without the dogs but the last time i took them with me and then tied them up in the park whilst i had a quick appointment, i came back to find a very well meaning woman had phoned the RSPCA to report them abandoned, luckily they hadn't come yet, and then when i went to have bloods done and a friend came with me to look after them Rudy ran off immediately after i disappeared and remained missing until i came back. We spent a half hour wandering around the first park area looking for him until we gave up and walked over the spiral bridge that crosses the rail track and on towards where i had left the car only to find him sitting by it expectantly awaiting our return, that! i thought was very cute and loyal and forgave him the half hour wasted looking for him elsewhere....my friend however was less forgiving.
I walked back this time on my own to the same spot over the bridge and then over the river and through the newly landscaped river bank and river walk that the council put in last summer, at times you would think you were in the country not the middle of Lewisham. That walk is a godsend the cool late afternoon air clears your mind and just walking with your thoughts can calm things right down.
Luckily the boys were at Jam club after school so i had a while before they came home to compose myself.
And then i made the dinner.
Friday 13 January 2012
Back to work and other things.
Back to normal now after yesterday, i went into work and arranged to attend an introductory course on neuro linguistic programming! on the 8th Feb....it may have earnt me brownie points with the new boss as it seems she is a practitioner herself.
Had two staff approach me today asking to move from day work to waking nights, both with solid childcare reasons for the change, not sure if they both know that they have asked me but with only one waking night post available i am going to need the wisdom of Soloman to work this out!
After work i came home and then headed out to the South bank to meet up with ex work colleagues. Just over a year ago we went through a big shake up as the company nearly folded. I had been working for a couple of years as a project manager, directly managing a service in camberwell and line managing two other services in Dulwich. I was told that i would need to return to my substantive post as care manager and four of my ops team colleagues decide to take redundancy, these were the ones i got on with best. I then had to reapply for a new job or take redundancy too, i was gung ho for the redundancy for a good while but then there were niggles about my health this was four months before i was told the cancer had returned so i decided at the last minute i should apply for the new post of area manager which would mean managing 2 or 3 care homes instead of one.
I was successful but then told that i would have work miles from where i live which i found hugely irritating and annoying and so didn't want to manage the homes that i was being given. If ever a diagnosis could come at the right time my newly active tumour cells made their mark just when i needed them.
A week after i was told of my new houses i got the diagnosis and the information that i would need to go back onto chemo. The doctor was great and e mailed my boss to say that i couldn't possibly work so far from home whilst having treatment so they arranged to leave me where i was.....phew.
Taking on the new contract meant that i lost a lot of the terms and conditions i had bought with me a few years earlier when we were transferred over from being run by the local authority. I lost 6 days annual leave a year and my sickness entitlement changed dramatically, from 6 months full pay 6 months half to 40 days full pay 40 days half. I was lucky enough to still be on the 6 months full pay when i had my op and first round of chemo.
I started the chemo in the December and was due to finish in June, i went through my 40 days paid leave during that period and continued working where i could with provision to work at home too. Gradually as the time came for me to be back at work without having chemo the spectre of going to work in Wandsworth raised it's head again. But then! an employee who i used to manage discovered that anyone who had a pension with Southwark, which i do must continue to work in Southwark, again timing could not have been better, instead of me pleading my case for not working further away i was asked if i minded taking on two houses in Dulwich, a ten minute drive from home! result.
That's where i work now, i manage two supported living services for people with severe learning disabilities. I enjoy the work and quite frankly am glad now that i am back in the services and working directly with tenants and staff. The organisation has changed dramatically and we are about to be taken over by another company. They are cancelling staff contracts and then offering them new posts for less pay and slightly more hours. Support workers are paid 8 pounds or so an hour, social care is being run into the ground, companies are bidding to provide support and in order to do this are reducing the price to gain the contracts. We know that commissioners are looking at price over quality when they take give out contracts. Driving down the cost of care then means that you cannot hire the people that you need to support people successfully. I was flabber gasted to find that Joe my son is being paid a comparable wage to stop people in the street and ask them to text a number to raise money for scope, it's difficult job but in no way comparable to that of a support worker who has to provide personal care, write complex reports, be aware of signs of abuse, write risk assessments, clean, do laundry, prepare for reviews, liaise with professionals, support tenants in the community, with medical appointments, deal with challenging behaviour in my homes case the risk of being scratched..i could go on.
Anyway i mentioned my line managers response to me being ill yesterday, incidentally this is someone i worked with 18 years ago when i was the deputy and he was a care officer, we have been friends for years but at work his approach irritates me enormously! Well the people that i met up with tonight would have been far more supportive as they were the first time i was ill, i was texting Patti from my bed keeping her informed of what was going on and her responses were encouraging and supportive and didn't make me feel that i wasn't valued and that getting better was the priority.
My previous boss and previous line manager met up tonight for a drink with three other people, one of whom still works in the company, funnily enough i was oncall tonight for the whole organisation and she was the second oncall! I recieved a call too which she was in a position to sort out with her knowledge of that part of the service.
It was great to see them and they have been in touch all through my treatment, Katie is four months older than me and as i came back from my first round of chemo she went off to have a mastectomy after finding a lump. She is fine three years on and continues to remember when i have had appointments and scans and always checks in by text to see how things are. Patti who was head of operations is one of the best managers i have ever worked with, knew everything that was going on worked like a trojan and also had great interpersonal skills, and brilliant at organising and getting projects going. Since she left it has all gone to the wall. She left after tragically losing her husband very quickly to lung Cancer he was 44 and died 5 months after diagnosis. He died just before his oldest son's career rocketed as a guitarist, he is the lead guitar on Plan B's album if anyone has the album on the back page there is a picture of his dad Simon {Patti's Husband} which Plan B put in as a tribute.
We had a great evening i arrived late as usual and missed the meal, afterwards we went to a pub opposite waterloo station. Was good catching up but makes me realise how much i miss working with them.
Had two staff approach me today asking to move from day work to waking nights, both with solid childcare reasons for the change, not sure if they both know that they have asked me but with only one waking night post available i am going to need the wisdom of Soloman to work this out!
After work i came home and then headed out to the South bank to meet up with ex work colleagues. Just over a year ago we went through a big shake up as the company nearly folded. I had been working for a couple of years as a project manager, directly managing a service in camberwell and line managing two other services in Dulwich. I was told that i would need to return to my substantive post as care manager and four of my ops team colleagues decide to take redundancy, these were the ones i got on with best. I then had to reapply for a new job or take redundancy too, i was gung ho for the redundancy for a good while but then there were niggles about my health this was four months before i was told the cancer had returned so i decided at the last minute i should apply for the new post of area manager which would mean managing 2 or 3 care homes instead of one.
I was successful but then told that i would have work miles from where i live which i found hugely irritating and annoying and so didn't want to manage the homes that i was being given. If ever a diagnosis could come at the right time my newly active tumour cells made their mark just when i needed them.
A week after i was told of my new houses i got the diagnosis and the information that i would need to go back onto chemo. The doctor was great and e mailed my boss to say that i couldn't possibly work so far from home whilst having treatment so they arranged to leave me where i was.....phew.
Taking on the new contract meant that i lost a lot of the terms and conditions i had bought with me a few years earlier when we were transferred over from being run by the local authority. I lost 6 days annual leave a year and my sickness entitlement changed dramatically, from 6 months full pay 6 months half to 40 days full pay 40 days half. I was lucky enough to still be on the 6 months full pay when i had my op and first round of chemo.
I started the chemo in the December and was due to finish in June, i went through my 40 days paid leave during that period and continued working where i could with provision to work at home too. Gradually as the time came for me to be back at work without having chemo the spectre of going to work in Wandsworth raised it's head again. But then! an employee who i used to manage discovered that anyone who had a pension with Southwark, which i do must continue to work in Southwark, again timing could not have been better, instead of me pleading my case for not working further away i was asked if i minded taking on two houses in Dulwich, a ten minute drive from home! result.
That's where i work now, i manage two supported living services for people with severe learning disabilities. I enjoy the work and quite frankly am glad now that i am back in the services and working directly with tenants and staff. The organisation has changed dramatically and we are about to be taken over by another company. They are cancelling staff contracts and then offering them new posts for less pay and slightly more hours. Support workers are paid 8 pounds or so an hour, social care is being run into the ground, companies are bidding to provide support and in order to do this are reducing the price to gain the contracts. We know that commissioners are looking at price over quality when they take give out contracts. Driving down the cost of care then means that you cannot hire the people that you need to support people successfully. I was flabber gasted to find that Joe my son is being paid a comparable wage to stop people in the street and ask them to text a number to raise money for scope, it's difficult job but in no way comparable to that of a support worker who has to provide personal care, write complex reports, be aware of signs of abuse, write risk assessments, clean, do laundry, prepare for reviews, liaise with professionals, support tenants in the community, with medical appointments, deal with challenging behaviour in my homes case the risk of being scratched..i could go on.
Anyway i mentioned my line managers response to me being ill yesterday, incidentally this is someone i worked with 18 years ago when i was the deputy and he was a care officer, we have been friends for years but at work his approach irritates me enormously! Well the people that i met up with tonight would have been far more supportive as they were the first time i was ill, i was texting Patti from my bed keeping her informed of what was going on and her responses were encouraging and supportive and didn't make me feel that i wasn't valued and that getting better was the priority.
My previous boss and previous line manager met up tonight for a drink with three other people, one of whom still works in the company, funnily enough i was oncall tonight for the whole organisation and she was the second oncall! I recieved a call too which she was in a position to sort out with her knowledge of that part of the service.
It was great to see them and they have been in touch all through my treatment, Katie is four months older than me and as i came back from my first round of chemo she went off to have a mastectomy after finding a lump. She is fine three years on and continues to remember when i have had appointments and scans and always checks in by text to see how things are. Patti who was head of operations is one of the best managers i have ever worked with, knew everything that was going on worked like a trojan and also had great interpersonal skills, and brilliant at organising and getting projects going. Since she left it has all gone to the wall. She left after tragically losing her husband very quickly to lung Cancer he was 44 and died 5 months after diagnosis. He died just before his oldest son's career rocketed as a guitarist, he is the lead guitar on Plan B's album if anyone has the album on the back page there is a picture of his dad Simon {Patti's Husband} which Plan B put in as a tribute.
We had a great evening i arrived late as usual and missed the meal, afterwards we went to a pub opposite waterloo station. Was good catching up but makes me realise how much i miss working with them.
Thursday 12 January 2012
Just one kind word.
Not sure why it happens but i woke up feeling just like i didin't want to bother today, another broken nights sleep due more to hot flushes i think now that i am menopausal, age wise but also due to the treatment i have had. I lay in bed and debated what to do and decided to take leave. Then recieved a message from my line manager saying he had phoned me at work and what was i doing. I messaged back that i didn't feel good and was aiming to start later but would be taking leave. He responded with if you are sick you need to take sick leave and phone HR. I have been using my leave when sick so that i don't get half pay and was told that this was an option by a previous head of HR.
I then got a call from school to say that Zaki had been found in a class using an eraser to mark a desk in a class that was being disruptive and that his response to the teacher was inappropriate, it just dragged the day down more.
I then tuned into radio two and the discussion on the welfare reform bill and everywhere i turn it seems that no one wants to help those of us fighting cancer. If i could just stop working and be at home for whatever time i have left to concentrate on fighting this disease who knows i could be around for ages yet.
All it takes is for one person to respond differently, my line manager took the party line, he didn't ask how i was or say he was sorry i felt unwell i am made to feel like i am shirking my duties, yes it is harder to be engaged at work but i have been. Has he forgotten that in the week before christmas i was working flat out on support plans and that when they were presented to the social worker on the 23rd Dec he remarked upon how good they were.The week that i orignally wanted to take leave. Ok i took leave from the 24th Dec for a week and then extended it for another week, but he has seen my annual leave card and that is the first time this year that i have had two weeks off otherwise it has been a day here and there to cover when i was feeling ill.
As i look well, walk with a smile on my face try and continue without going on about my illness and am putting on weight rather than losing....the typical response of a comfort eater everyone thinks i am fine. I am not, everyday i push thoughts of death and the detreitus that would be left in my wake aside so that i can function, but on occasion on days like today the walls crack and it overwhelms me. By the time the boys come home i will have pulled myself together and will be making the tea.
I don't either want to be a different person to who i am i am strong and i do manage through difficulties but don't look at me and think what you see is what is inside, and respect the fact that i have been through a major surgery then 6 months of chemo, innumerable CT scans and doctors appointments MRI, PET scan. I have suffered numbness in my hands and feet through oxalyplatin and left with numb feet still, i have lost my hair with Irinotecan and spent 24 hours awake through taking steroids. I have suffered sleepless nights through worrying about the future or having hot sweats bought on by my treatment. I travelled every day to St Thomas's hospital to have radiotherapy for five weeks and continued to work through. I have spent more time than i would like to admit sat on the loo because my bowels have protested against the various treatments they have been subjected to, and i haven't even suffered as badly as others in my situation!.....yet
Ok now sadness has turned into anger well a mix of the two. I really need to see if i can get early retirement i need to remember to talk to the docs about it on Thursday.
I then got a call from school to say that Zaki had been found in a class using an eraser to mark a desk in a class that was being disruptive and that his response to the teacher was inappropriate, it just dragged the day down more.
I then tuned into radio two and the discussion on the welfare reform bill and everywhere i turn it seems that no one wants to help those of us fighting cancer. If i could just stop working and be at home for whatever time i have left to concentrate on fighting this disease who knows i could be around for ages yet.
All it takes is for one person to respond differently, my line manager took the party line, he didn't ask how i was or say he was sorry i felt unwell i am made to feel like i am shirking my duties, yes it is harder to be engaged at work but i have been. Has he forgotten that in the week before christmas i was working flat out on support plans and that when they were presented to the social worker on the 23rd Dec he remarked upon how good they were.The week that i orignally wanted to take leave. Ok i took leave from the 24th Dec for a week and then extended it for another week, but he has seen my annual leave card and that is the first time this year that i have had two weeks off otherwise it has been a day here and there to cover when i was feeling ill.
As i look well, walk with a smile on my face try and continue without going on about my illness and am putting on weight rather than losing....the typical response of a comfort eater everyone thinks i am fine. I am not, everyday i push thoughts of death and the detreitus that would be left in my wake aside so that i can function, but on occasion on days like today the walls crack and it overwhelms me. By the time the boys come home i will have pulled myself together and will be making the tea.
I don't either want to be a different person to who i am i am strong and i do manage through difficulties but don't look at me and think what you see is what is inside, and respect the fact that i have been through a major surgery then 6 months of chemo, innumerable CT scans and doctors appointments MRI, PET scan. I have suffered numbness in my hands and feet through oxalyplatin and left with numb feet still, i have lost my hair with Irinotecan and spent 24 hours awake through taking steroids. I have suffered sleepless nights through worrying about the future or having hot sweats bought on by my treatment. I travelled every day to St Thomas's hospital to have radiotherapy for five weeks and continued to work through. I have spent more time than i would like to admit sat on the loo because my bowels have protested against the various treatments they have been subjected to, and i haven't even suffered as badly as others in my situation!.....yet
Ok now sadness has turned into anger well a mix of the two. I really need to see if i can get early retirement i need to remember to talk to the docs about it on Thursday.
Wednesday 11 January 2012
Zaki has developed a new sleep pattern he crashes around 6pm and wakes early morning, i hardly see him but he gets himself up and off to school without being woken by me!.....need to think of something to keep him going tomorrow.
Went to Adam's parents evening, the expectation is that he acheives A* to B+ in all subjects in fact it is only Drama that is B+ However the reality is that the highest grade he is working at right now is C in Maths and English.....he has promised to start working harder they have all said that it isn't too late for him to do better.
I lost my phone! between the car and home i popped to the shop on the way home and really hope i didn't drop it anywhere inbetween but i don't think i took it in there.
Well i need to get some sleep hoping that Zak will be up and ready tomorrow and may just give his a brother a wake up call for me!
Went to Adam's parents evening, the expectation is that he acheives A* to B+ in all subjects in fact it is only Drama that is B+ However the reality is that the highest grade he is working at right now is C in Maths and English.....he has promised to start working harder they have all said that it isn't too late for him to do better.
I lost my phone! between the car and home i popped to the shop on the way home and really hope i didn't drop it anywhere inbetween but i don't think i took it in there.
Well i need to get some sleep hoping that Zak will be up and ready tomorrow and may just give his a brother a wake up call for me!
Tuesday 10 January 2012
Yuk
had the CT scan this morning, it has got to the point that the staff now remember me, two recognised me from previous visits, as the dye flooded my veins i did begin to wonder if i was hitting the kill or cure mark. They inject a dye into your arm and you can feel it warming your body top to toe inside, there are a number of peculiar feelings that the cancer sufferer is subjected to in the course of their treatment.
Anyway results next week, and i am off to bed, having argued with Joe and Zak already this week tonight was Adam's turn i made macaroni and cheese but added cauliflower on top which he didin't like even though i didn't give him it just the macaroni and he just blew his top.
Need sleep.
Anyway results next week, and i am off to bed, having argued with Joe and Zak already this week tonight was Adam's turn i made macaroni and cheese but added cauliflower on top which he didin't like even though i didn't give him it just the macaroni and he just blew his top.
Need sleep.
Monday 9 January 2012
Wrong
I had to drink barium meal today with breakfast dinner and tea, it actually doesn't tast that bad but i still have to take a deep breath and wallop the lot in one go. Something that tastes like orange and looks like milkl is just wrong! Ct Scan in the morning, at least i am near enough to walk to the hospital and it's quite a nice route through the park.
I digress!
I have just spent the day and much of the weekend cleaning!. I started in the kitchen and moved things to the cupboards from the worktops and shifted the things around that i use all the time and put my present to myself a new food processor out ready to use.
The trouble with the kitchen is that when you move off to tackle another room in this case the lounge, some how it becomes ready to clean again after you have finished in there. The lounge as been done top to toe, sofa's out the back of the tv wires tidied and dust cleaned off...that will last about an hour i am guessing why is it that there is always a mountain of dust!? I ordered a new tv unit in the next sale, that came last week and i had an enjoyable afternoon putting it together, when instruction are clear it's quite a therapeutic exercise. It had magnetic catches and drawers on rollers and it all fitted!! and i didn't have to take it apart and do it again because i had put something in the wrong way round. It looks much better and less dusty than the perfectly serviceable glass table that they sell with each unit, i had just had enough of seeing the wires and the dust. It is now sitting in the hall waiting to be dealt with.
There is also a huge silver tv sitting in the hall upstairs, the old kind pre flat screen. Joe had it in his room and with his first paycheck and a loan from his friend he is now the proud owner of a 40 inch sony flat screen to watch and game on. He tried to do a deal with his younger brother to swap it for his 19 inch tv so he could watch tv and game at the same time!!?? when i got quite annoyed about this idea and suggested that it might have been nice if Zak didn't want it to put it in the kitchen to replace the one that was nicked last year co incidentally whilst i was having my last session of chemo. ...They came through the garage and shut the kitchen door so that the dogs couldn't get to them, so much for having what i thought were good security they bark at everything and loudly!!
Joe argued as is his wont till the cows came home and me being such a mature and sensible mother argued against him even though in my head i knew that what i was saying wasn't getting me anywhere and was contradictory to what i felt. We have since sorted this out, Zak decided he didn't want a huge tv in his small room hence it's place on the hall landing, where we risk life and limb clambering over it to get the the bedrooms or bathroom. I need to look and advertise it locally for free if collected.
I did Zaki's room last night whilst he was asleep he keeps crashing at all hours as his body clock keeps getting pushed out of sync when he is on school hols. He woke up and came in to completely lose it becuasei had touched this or that and put things in the wrong place, i in turn lost my temper and we ended up rowing too! He apologised later and so did i, i need an internal switch one to flick and remind me that with the potential lack of time left with the boys the last thing i want to do it argue, but when the red mist descends it is hard to find it.
So today glutton for punishment after having done my room, de cluttered and tidied ready for if or when i end up in there convalescing and receiving visitors, also pre empting a time in the future when things may have to be sorted through when i am not around. I look at all the stuff i have amassed and really do think now well things are really not that important. I point out on occasion as i did the other day when Joe came in to chat with me what things are. The wardrobe and tallboy were my mum's circa 1920's and the story behind it...it's a good one i think i have said before that i should get my mothers story into print.
This story was about the day the bailiffs came, the family had gone from being quite well off to having nothing because of my grandad's business endeavours, my mother felt that he was naive my aunt her sister in law felt that he was a bit of a shyster, i never knew him so have no idea which is true. He was a farm manager and made a good living out of it but worked away from home a lot. My Grandmother was a teacher and died from Breast cancer in her late fifties, she died without making a will so all her money went to paying off her husbands debts, if a will had been made then my mum and her brother Joe would not have had to go through what they did, i made my will 20 years ago ....reminds me i need to update it!
My mother knowing that the bailiffs were on their way had the foresight to get the car and drive it away to the butchers, she always used to tell me she knew how to drive but i never ever saw her behind the wheel. The car ended up being their only source of revenue after everything was taken of value and with the money they got from its sale my uncle went to the auction to buy back some of their belongings, i cannot imagine how hard that must be, we are lucky these days that there are more chances in place with financial problems. I don't know exactly what he bought but i did know from my aunts perspective that they bought mum's wardrobe, dressing table and tall boy for her as she had been the one to manage to enable them to have some money to do it. My mothers story was always that Joe and Joan had bought her furniture for themselves, they said that when they offered it to her she said that she didn't want it, so they kept it until they died, i ended up taking the wardrobe and tallboy as my cousins didn't want them, so mum's furniture is back with me in my room. My mother and aunt Joan didn't get on from day one, she married uncle Joe soon after my grandmother died and my mother always felt that this wasn't right and determined to cause trouble for them which she did try hard at! An interesting and complicated woman my mother.
My uncle Joe died 6 months before my mum, and i was there with the family on the day. There in lies another tale, i would save it but i shall likely forget. I had a call from Aunt Joan on the Wednesday to say that Joe was very ill and not likely to live much longer, my cousin John was going to travel down from Scotland and Val was getting a flight from South Africa bother arriving Friday, she lived in Maidstone so i was the nearest in London, some family on my aunts side though were visiting and were with her for support until they came.
My Aunt and Uncle were more like grandparents to my boys, with their only grandchildren living in South Africa they had not had the opportunity to see them much. Melinda their grand daughter was in the uk for a year when Joe took ill but most of the time it was me and the boys on Joe's side who would go and visit. Auntie was quite fierce and it was important that we turned up on time otherwise i would get a little bit of a tongue lashing,She was a great cook and would do things that she knew the boys liked and would have arranged something for them to do, go swimming at the local leisure centre, a visit to the wildlife trust, Moat Park to feed the ducks and play on the swings etc. Then she and Joe would go about half an hour before us where ever we were and then i would bring them back to have tea.
Anyway when i heard that Val was coming i said that i would meet her at Heathrow and drive her to Maidstone, on the the Thursday Auntie phoned to say uncle Joe was so much better and not so ill now, but arrangements were made and John and Val would be coming.
When i arrived at Heathrow John was there too and Melinda he decided to detour without telling anyone knowing what flight Val was coming in on. We didn't rush as we knew uncle Joe was better and sat with a tea just catching up i hadn't seen John since i was 11 though i had seen Val every year for the last three or so when she came over to work as a full time live in carer for someone which also gave her the opportunity to see her parents. Both John and Val i knew had issues at times with their parents once i was in the middle of it with her and Aunt Joan, Val is the nicest person i know so it was disconcerting to see how difficult her relationship was with her mum.
Suddenly whilst having the tea and taking some pics the phone rang and it was Auntie Joan demanding to know where we all were as Joe had taken another turn and she needed to get to the hospital. We all hastily left to get into the cars, Melinda came with me and Val with John. We got out of the park first and just hared down the motorway to Maidstone, not sure the name of the hospital. Anyway we parked and went to the ward just in time to see Uncle Joe being wheeled out to the heart ward. Aunt Joan was very annoyed that we were late and said 'where are Val and John' i explained that they were just behind us but she was obviously agitated that they weren't there.
After a few minutes we saw them coming towards us Val opened her arms and said Hi mum with a smile, obviously the wrong thing to do, Aunt Joan said 'how can you smile at a time like this!' and turned her back on them both, Melinda went to see her mum and suddenly i was left standing with my Aunt waiting whilst they settled Joe into the ward, with her immediate family son daughter and grand daughter standing a distance away from us. She kept saying why is she happy this isn't the time to be happy and i tried to pacify the situation i felt and told Auntie that Val was just pleased to see her after so long.... and 'why hadn't john come straight here?' again i suggested that he had been driving all night from Scotland and would need a break and had decided to collect his sister not knowing that i would be doing it. She was still annoyed as we went in to see the doctors, walking with me and her arm in mine with her family bringing up the rear! I would phone Mum later that day and tell her about this, 'that's how Joan is' i suddenly after all these years saw what mum had to deal with as well as what Joan did, as much as they argued they relied on each other they loved each other and 6 months later when Mum died Aunty Joan would be the first person i would phone.
They sat us in the family room and the doctor and a nurse came in, you could see that it was grave news but his mistake was to ask what do you know till now? My aunt launched in and gave him chapter and verse about Uncle Joe's illness for the last week or so, i could feel the rest of us thinking he has something to tell us come on, but that was what she needed.. to take time, she had been married to Uncle Joe for 60 years they had only received their telegram from the Queen 5 months earlier.
When Auntie Joan finished with 'and that's where we are now' the doctor very kindly explained that uncle was very ill and that he wanted to know if Auntie wanted them to intubate him should he become worse, Auntie Joan didn't know what to say, i asked if this was with a view of curing him or prolonging and they said the latter. My cousins and Aunt discussed it and agreed it would be better not to intervene should he become worse. My aunt then went in to see him, we gradually visited one by one.
He was alert when i saw him and i chatted a little, i was hesitant to say it but i thought it's now or never. Earlier when talking to mum she said that she didn't get a chance to say sorry, i wasn't sure what for but i told him this, my Aunt Joan was so pleased with it and a year or so later would ask if my mum really asked me to say it, well she didn't, but i just said she did say that she wanted to, which seemed to appease her. I said goodbye knowing that it would be a final one, my uncle Joe was a very quiet man Joan always did the talking, my mum too, he really didn't have a choice. But he had a very dry sense of humour Auntie Joan would rattle on and then Uncle would just say one thing in response and we would all crease up, he would just sit with a cheeky smile on his face.
He died later that evening, my cousin Val was trained as an Opera singer and she apparently sang as he slipped away. She sang at his funeral too, i took little Joe along with me for that, as she sang i started to well up, she said later that she was holding it together fine until she looked at me, i had realised at that point and quickly looked away.
Auntie Joan continued for a couple more years, she found it really difficult on her own and i would go and visit when i could without the boys though. She would always book at a pub in the country for a meal and take me there. We would chat and sometimes cry a bit remembering mum and Joe. She would often ask if she had made the best decision to let him go, i never doubted that she had and told her that.
The last time i saw her Val was over, she told me that she had cancer which wasn't such a surprise as i was aware that she hadn't been well. It was in her lungs, 50 odd years of smoking had paid it's price even though she had given up a few years before.
She had decided that day that Val and i would go through 'the box' i had heard about this box but never seen it, it held information about the family collected over the years. John had already gone through it and taken some letters to give to a museum or something i believe which may have been of local interest. Val said that she didn't want any of it so it was down to me to take it. I am so pleased to have it, looking through there are loads of old pictures many in portrait studios, the problem is a lot of them are of people i don't know. I imagine i can track some down and some faces are named on one pic so i can track them down in another. There are letters written by my grandfather, old recipes that if they didn't cure you sound like they would certainly kill you! Ledgers from the farms that my grandad managed including Lord Vesty's in Gloucestershire including a notice and fine for moving cattle when it was prohibited. Some poignant letters, one to my grandad from my grandmother saying how they will always be sweethearts, one from my mum to her dad as an 11 year old, my mum and uncles school reports etc. I was curious to keep finding someone called Bunty mentioned in the writing, gradually i realised it was in reference to Uncle Joe! John and Val don't know why he was called this and it was something i couldn't ask mum or Aunt Joan about as i didn't know whilst they were alive. When you lose that generation you wish that you had found out more when they were around to answer the questions.
Anyway the box which in itself must be well over 100 years old is in my bedroom, and now and again i open it up and look through it. It prompted me to start another box using a big chest with Chinese carvings on it that mum and dad got from Singapore, in it i am popping anything to do with the boys and me and mum and dad.
So that is my room sorted near enough, then onto Adams which was an absolute bombsite!! He is 15 and just drops everything where he stands. It took me ages to do but when something is that bad to begin with there is an enormous sense of satisfaction when it is finished, i will just need to keep on top of him to keep it tidy. It has spurred Joe into doing his room, i did a little in there but was quickly losing the will to live!
Just the garden to sort now!
The trouble with the kitchen is that when you move off to tackle another room in this case the lounge, some how it becomes ready to clean again after you have finished in there. The lounge as been done top to toe, sofa's out the back of the tv wires tidied and dust cleaned off...that will last about an hour i am guessing why is it that there is always a mountain of dust!? I ordered a new tv unit in the next sale, that came last week and i had an enjoyable afternoon putting it together, when instruction are clear it's quite a therapeutic exercise. It had magnetic catches and drawers on rollers and it all fitted!! and i didn't have to take it apart and do it again because i had put something in the wrong way round. It looks much better and less dusty than the perfectly serviceable glass table that they sell with each unit, i had just had enough of seeing the wires and the dust. It is now sitting in the hall waiting to be dealt with.
There is also a huge silver tv sitting in the hall upstairs, the old kind pre flat screen. Joe had it in his room and with his first paycheck and a loan from his friend he is now the proud owner of a 40 inch sony flat screen to watch and game on. He tried to do a deal with his younger brother to swap it for his 19 inch tv so he could watch tv and game at the same time!!?? when i got quite annoyed about this idea and suggested that it might have been nice if Zak didn't want it to put it in the kitchen to replace the one that was nicked last year co incidentally whilst i was having my last session of chemo. ...They came through the garage and shut the kitchen door so that the dogs couldn't get to them, so much for having what i thought were good security they bark at everything and loudly!!
Joe argued as is his wont till the cows came home and me being such a mature and sensible mother argued against him even though in my head i knew that what i was saying wasn't getting me anywhere and was contradictory to what i felt. We have since sorted this out, Zak decided he didn't want a huge tv in his small room hence it's place on the hall landing, where we risk life and limb clambering over it to get the the bedrooms or bathroom. I need to look and advertise it locally for free if collected.
I did Zaki's room last night whilst he was asleep he keeps crashing at all hours as his body clock keeps getting pushed out of sync when he is on school hols. He woke up and came in to completely lose it becuasei had touched this or that and put things in the wrong place, i in turn lost my temper and we ended up rowing too! He apologised later and so did i, i need an internal switch one to flick and remind me that with the potential lack of time left with the boys the last thing i want to do it argue, but when the red mist descends it is hard to find it.
So today glutton for punishment after having done my room, de cluttered and tidied ready for if or when i end up in there convalescing and receiving visitors, also pre empting a time in the future when things may have to be sorted through when i am not around. I look at all the stuff i have amassed and really do think now well things are really not that important. I point out on occasion as i did the other day when Joe came in to chat with me what things are. The wardrobe and tallboy were my mum's circa 1920's and the story behind it...it's a good one i think i have said before that i should get my mothers story into print.
This story was about the day the bailiffs came, the family had gone from being quite well off to having nothing because of my grandad's business endeavours, my mother felt that he was naive my aunt her sister in law felt that he was a bit of a shyster, i never knew him so have no idea which is true. He was a farm manager and made a good living out of it but worked away from home a lot. My Grandmother was a teacher and died from Breast cancer in her late fifties, she died without making a will so all her money went to paying off her husbands debts, if a will had been made then my mum and her brother Joe would not have had to go through what they did, i made my will 20 years ago ....reminds me i need to update it!
My mother knowing that the bailiffs were on their way had the foresight to get the car and drive it away to the butchers, she always used to tell me she knew how to drive but i never ever saw her behind the wheel. The car ended up being their only source of revenue after everything was taken of value and with the money they got from its sale my uncle went to the auction to buy back some of their belongings, i cannot imagine how hard that must be, we are lucky these days that there are more chances in place with financial problems. I don't know exactly what he bought but i did know from my aunts perspective that they bought mum's wardrobe, dressing table and tall boy for her as she had been the one to manage to enable them to have some money to do it. My mothers story was always that Joe and Joan had bought her furniture for themselves, they said that when they offered it to her she said that she didn't want it, so they kept it until they died, i ended up taking the wardrobe and tallboy as my cousins didn't want them, so mum's furniture is back with me in my room. My mother and aunt Joan didn't get on from day one, she married uncle Joe soon after my grandmother died and my mother always felt that this wasn't right and determined to cause trouble for them which she did try hard at! An interesting and complicated woman my mother.
My uncle Joe died 6 months before my mum, and i was there with the family on the day. There in lies another tale, i would save it but i shall likely forget. I had a call from Aunt Joan on the Wednesday to say that Joe was very ill and not likely to live much longer, my cousin John was going to travel down from Scotland and Val was getting a flight from South Africa bother arriving Friday, she lived in Maidstone so i was the nearest in London, some family on my aunts side though were visiting and were with her for support until they came.
My Aunt and Uncle were more like grandparents to my boys, with their only grandchildren living in South Africa they had not had the opportunity to see them much. Melinda their grand daughter was in the uk for a year when Joe took ill but most of the time it was me and the boys on Joe's side who would go and visit. Auntie was quite fierce and it was important that we turned up on time otherwise i would get a little bit of a tongue lashing,She was a great cook and would do things that she knew the boys liked and would have arranged something for them to do, go swimming at the local leisure centre, a visit to the wildlife trust, Moat Park to feed the ducks and play on the swings etc. Then she and Joe would go about half an hour before us where ever we were and then i would bring them back to have tea.
Anyway when i heard that Val was coming i said that i would meet her at Heathrow and drive her to Maidstone, on the the Thursday Auntie phoned to say uncle Joe was so much better and not so ill now, but arrangements were made and John and Val would be coming.
When i arrived at Heathrow John was there too and Melinda he decided to detour without telling anyone knowing what flight Val was coming in on. We didn't rush as we knew uncle Joe was better and sat with a tea just catching up i hadn't seen John since i was 11 though i had seen Val every year for the last three or so when she came over to work as a full time live in carer for someone which also gave her the opportunity to see her parents. Both John and Val i knew had issues at times with their parents once i was in the middle of it with her and Aunt Joan, Val is the nicest person i know so it was disconcerting to see how difficult her relationship was with her mum.
Suddenly whilst having the tea and taking some pics the phone rang and it was Auntie Joan demanding to know where we all were as Joe had taken another turn and she needed to get to the hospital. We all hastily left to get into the cars, Melinda came with me and Val with John. We got out of the park first and just hared down the motorway to Maidstone, not sure the name of the hospital. Anyway we parked and went to the ward just in time to see Uncle Joe being wheeled out to the heart ward. Aunt Joan was very annoyed that we were late and said 'where are Val and John' i explained that they were just behind us but she was obviously agitated that they weren't there.
After a few minutes we saw them coming towards us Val opened her arms and said Hi mum with a smile, obviously the wrong thing to do, Aunt Joan said 'how can you smile at a time like this!' and turned her back on them both, Melinda went to see her mum and suddenly i was left standing with my Aunt waiting whilst they settled Joe into the ward, with her immediate family son daughter and grand daughter standing a distance away from us. She kept saying why is she happy this isn't the time to be happy and i tried to pacify the situation i felt and told Auntie that Val was just pleased to see her after so long.... and 'why hadn't john come straight here?' again i suggested that he had been driving all night from Scotland and would need a break and had decided to collect his sister not knowing that i would be doing it. She was still annoyed as we went in to see the doctors, walking with me and her arm in mine with her family bringing up the rear! I would phone Mum later that day and tell her about this, 'that's how Joan is' i suddenly after all these years saw what mum had to deal with as well as what Joan did, as much as they argued they relied on each other they loved each other and 6 months later when Mum died Aunty Joan would be the first person i would phone.
They sat us in the family room and the doctor and a nurse came in, you could see that it was grave news but his mistake was to ask what do you know till now? My aunt launched in and gave him chapter and verse about Uncle Joe's illness for the last week or so, i could feel the rest of us thinking he has something to tell us come on, but that was what she needed.. to take time, she had been married to Uncle Joe for 60 years they had only received their telegram from the Queen 5 months earlier.
When Auntie Joan finished with 'and that's where we are now' the doctor very kindly explained that uncle was very ill and that he wanted to know if Auntie wanted them to intubate him should he become worse, Auntie Joan didn't know what to say, i asked if this was with a view of curing him or prolonging and they said the latter. My cousins and Aunt discussed it and agreed it would be better not to intervene should he become worse. My aunt then went in to see him, we gradually visited one by one.
He was alert when i saw him and i chatted a little, i was hesitant to say it but i thought it's now or never. Earlier when talking to mum she said that she didn't get a chance to say sorry, i wasn't sure what for but i told him this, my Aunt Joan was so pleased with it and a year or so later would ask if my mum really asked me to say it, well she didn't, but i just said she did say that she wanted to, which seemed to appease her. I said goodbye knowing that it would be a final one, my uncle Joe was a very quiet man Joan always did the talking, my mum too, he really didn't have a choice. But he had a very dry sense of humour Auntie Joan would rattle on and then Uncle would just say one thing in response and we would all crease up, he would just sit with a cheeky smile on his face.
He died later that evening, my cousin Val was trained as an Opera singer and she apparently sang as he slipped away. She sang at his funeral too, i took little Joe along with me for that, as she sang i started to well up, she said later that she was holding it together fine until she looked at me, i had realised at that point and quickly looked away.
Auntie Joan continued for a couple more years, she found it really difficult on her own and i would go and visit when i could without the boys though. She would always book at a pub in the country for a meal and take me there. We would chat and sometimes cry a bit remembering mum and Joe. She would often ask if she had made the best decision to let him go, i never doubted that she had and told her that.
The last time i saw her Val was over, she told me that she had cancer which wasn't such a surprise as i was aware that she hadn't been well. It was in her lungs, 50 odd years of smoking had paid it's price even though she had given up a few years before.
She had decided that day that Val and i would go through 'the box' i had heard about this box but never seen it, it held information about the family collected over the years. John had already gone through it and taken some letters to give to a museum or something i believe which may have been of local interest. Val said that she didn't want any of it so it was down to me to take it. I am so pleased to have it, looking through there are loads of old pictures many in portrait studios, the problem is a lot of them are of people i don't know. I imagine i can track some down and some faces are named on one pic so i can track them down in another. There are letters written by my grandfather, old recipes that if they didn't cure you sound like they would certainly kill you! Ledgers from the farms that my grandad managed including Lord Vesty's in Gloucestershire including a notice and fine for moving cattle when it was prohibited. Some poignant letters, one to my grandad from my grandmother saying how they will always be sweethearts, one from my mum to her dad as an 11 year old, my mum and uncles school reports etc. I was curious to keep finding someone called Bunty mentioned in the writing, gradually i realised it was in reference to Uncle Joe! John and Val don't know why he was called this and it was something i couldn't ask mum or Aunt Joan about as i didn't know whilst they were alive. When you lose that generation you wish that you had found out more when they were around to answer the questions.
Anyway the box which in itself must be well over 100 years old is in my bedroom, and now and again i open it up and look through it. It prompted me to start another box using a big chest with Chinese carvings on it that mum and dad got from Singapore, in it i am popping anything to do with the boys and me and mum and dad.
So that is my room sorted near enough, then onto Adams which was an absolute bombsite!! He is 15 and just drops everything where he stands. It took me ages to do but when something is that bad to begin with there is an enormous sense of satisfaction when it is finished, i will just need to keep on top of him to keep it tidy. It has spurred Joe into doing his room, i did a little in there but was quickly losing the will to live!
Just the garden to sort now!
Wednesday 4 January 2012
The Menagerie!
A photo introduction to the menagerie!
{Mama} Cass
Sister to Hendrix
Hendrix was a very difficult teenager and drove his mother out of the house!
But he and his sis get on fine.
They Think they rule the roost.....but not quite!
Three chickens get in the way of their plans Joanie, Winnie, and Annie.....named after my three aunts! Joanie is the longest surviving having gone through some fox massacres she always manages to defeat him.
Hendrix was a very difficult teenager and drove his mother out of the house!
Three chickens get in the way of their plans Joanie, Winnie, and Annie.....named after my three aunts! Joanie is the longest surviving having gone through some fox massacres she always manages to defeat him.
The dogs bark a lot!!!!! and think they have the edge but in any battle they always end up the losers
Ozzy like a daily paper in his hallway upstairs.
And this is just because it always makes me smile..... a lot!!!!
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