It is time for me to write a blog soon.
Over the last 2 weeks I have been realy recovering well, eating, out walking everyday and also been shopping.
Of to the Hospital Thursday (3rd Sept) to find out my next treatment.
I am setting targets and the next one is to travel across london next month to visit my sister.
thank you everyone for your kind words of support.
love and peace
Lucy
xx
Monday, 31 August 2009
Tuesday, 18 August 2009
Lists, Panic attack and the safe haven of a list
One of my main comfort zones ,in life is my lists are very important this is from a shopping list, a things to do before I die list to a list of “things to do”.
They make sure I don’t forget an item of shopping, give me something to tick off and show me progress and as I found this week be an anti panic attack tool.
On Monday I received a letter from work informing me that from the 17th September my sick pay entitlement from work would go to half pay, not a total surprise to me as I know the rules at work and that I would only get full pay for six months, then another six months of half pay to well I cross that bridge in March 2010.
The first list was one I first made back in April when I was first diagnosed with cancer (that time has passed so quickly) this list looked at the possibility that I my income could be affected as I did not know how things were going to pan out.
I had also put my name onto the housing list and had my status upgraded along each stage of diagnosis, new medication I was put on and any other status updates.
I have been working since July 1979, yes 30 years! a unbroken run of 30 years, though not with the same employer, but my current one (Southend Borough Council) is the longest place I have worked at (10 years in November).
So I have always been used to a earning a wage, which gives me a feeling of security when paying for my rent and to a extent maintaining my life style and this gives me a fair degree of independence.
Back in March/April as I was starting to worry about my health the first thoughts of a uncertain work future did enter my head, work may be supportive, they are still a business and do not pay people forever to sit at home, whether its cancer to bird flu.
So when that letter dropped on my mat telling me that my pay would go to half sick pay as from 17th September, it was in the Lucy plan.
However that night I did not sleep well, I really hardly slept and ended up reading quite a lot of my peter James book to listening to good radio at 4am.
It was not only the letter that was unsettling me, other things such as is I really a horrible person? will I die alone and reoccurring cancer and being trapped in Whitechapel hospital for the rest of my life.
The base of my security was being blasted away and not chipped at.
So making a list the next day did help, it made the problems look smaller and more containable and less scary.
I was able to trim of some not so needed direct debits of my monthly list (£32.15p) which I could buy a week’s shopping at my local Lidl so not to be sniffed at.
I did contact housing at the council and I am now on A list/level standing for a one bedroom flat.
For me this is perfect, I don’t need a house, much too big for me, a flat is so ideal.
I can start looking at council properties online tomorrow to show a preference; ok I may not get it! But it is a start.
I chased up my critical illness claim at the bank for payment of my loan.
So this will help, I know that worries will return.
It is not just a financial readjustment I am going through, but also a life change.
I have had a work routine for 30 years, now I don’t have to get up at a certain time.
I do set a alarm clock to get into a routine, it feel a lot different when you know you don’t have to get up after the third or fourth snooze button alarm press.
I do my daily walk to build up my exercise and eat to get my weight back on, I feel in this changing limbo.
I still get tired a lot and have been told this could be how I am now, so a slower life style beckons, who knows.
I feel I life in a smaller and lonelier world and this also scares me as I spend so much time alone.
Perhaps I need an activity list!
I am in a limbo until my next hospital appointments for chemo and once again I am in the unknown as to how this will affect me.
For the moment the panic attacks are on hold..................for now
They make sure I don’t forget an item of shopping, give me something to tick off and show me progress and as I found this week be an anti panic attack tool.
On Monday I received a letter from work informing me that from the 17th September my sick pay entitlement from work would go to half pay, not a total surprise to me as I know the rules at work and that I would only get full pay for six months, then another six months of half pay to well I cross that bridge in March 2010.
The first list was one I first made back in April when I was first diagnosed with cancer (that time has passed so quickly) this list looked at the possibility that I my income could be affected as I did not know how things were going to pan out.
I had also put my name onto the housing list and had my status upgraded along each stage of diagnosis, new medication I was put on and any other status updates.
I have been working since July 1979, yes 30 years! a unbroken run of 30 years, though not with the same employer, but my current one (Southend Borough Council) is the longest place I have worked at (10 years in November).
So I have always been used to a earning a wage, which gives me a feeling of security when paying for my rent and to a extent maintaining my life style and this gives me a fair degree of independence.
Back in March/April as I was starting to worry about my health the first thoughts of a uncertain work future did enter my head, work may be supportive, they are still a business and do not pay people forever to sit at home, whether its cancer to bird flu.
So when that letter dropped on my mat telling me that my pay would go to half sick pay as from 17th September, it was in the Lucy plan.
However that night I did not sleep well, I really hardly slept and ended up reading quite a lot of my peter James book to listening to good radio at 4am.
It was not only the letter that was unsettling me, other things such as is I really a horrible person? will I die alone and reoccurring cancer and being trapped in Whitechapel hospital for the rest of my life.
The base of my security was being blasted away and not chipped at.
So making a list the next day did help, it made the problems look smaller and more containable and less scary.
I was able to trim of some not so needed direct debits of my monthly list (£32.15p) which I could buy a week’s shopping at my local Lidl so not to be sniffed at.
I did contact housing at the council and I am now on A list/level standing for a one bedroom flat.
For me this is perfect, I don’t need a house, much too big for me, a flat is so ideal.
I can start looking at council properties online tomorrow to show a preference; ok I may not get it! But it is a start.
I chased up my critical illness claim at the bank for payment of my loan.
So this will help, I know that worries will return.
It is not just a financial readjustment I am going through, but also a life change.
I have had a work routine for 30 years, now I don’t have to get up at a certain time.
I do set a alarm clock to get into a routine, it feel a lot different when you know you don’t have to get up after the third or fourth snooze button alarm press.
I do my daily walk to build up my exercise and eat to get my weight back on, I feel in this changing limbo.
I still get tired a lot and have been told this could be how I am now, so a slower life style beckons, who knows.
I feel I life in a smaller and lonelier world and this also scares me as I spend so much time alone.
Perhaps I need an activity list!
I am in a limbo until my next hospital appointments for chemo and once again I am in the unknown as to how this will affect me.
For the moment the panic attacks are on hold..................for now
Monday, 17 August 2009
The Anti BNP march
I should stress before I write that I am NOT a member of the BNP or in any way share their evil beliefs.
As a Unison activist I have leaflet dropped and worked on stalls handing leaflets at election time as the BNP has gone very close in the local elections in Southend (thankfully never won a seat yet).
Funny isn’t it one sentence into this blog and I am quick and eager to establish that I am not a Nazi or this blog may not be read or I may get a brick through my living room window.
Yet I write as I feel a bit uncomfortable after Saturdays anti BNP march.
I am proud of our democracy we live in, our freedom of speech without getting a truncheon across the head or being thrown into a jail as a political prisoner.
Freedom of speech and BELIEF is a very important value and also I acknowledge the right to protest.
Yet are we in danger of turning into a society that says you can have your freedom of speech or belief ...............as long as I agree with it.
See on Saturday the BNP were having a party meeting, this was a meeting of like minded people meeting, ok the political beliefs they shared where not my cup of tea, but did they not have a right to meet and share their own views within a safe environment?
Is this not what us people in a minority group have done over the years to escape persecution whether we are Gay, Trans or of a different creed?
Yet a mob marched on them, and even threatened them, is this not a danger of turning yourself into what you most hate or dislike?
Would a visitor from another planet for the day been unsure of who was who on Saturday as words of BNP scum was shouted and yes there were children of BNP members at that meeting there.
When do we get a right to call people scum?
Did not Ghandi preach peaceful protesting and non violence?
IIs this how we deal with things now, get into a mob and lynch people who dare disagree with us.
Also the police over the years have been a safe haven for me, whether when I was attacked by a group of chavs (in my Goth days) or even in my Pre full transition days.
So Saturday as part of their JOB they had to marshal the protest as they do ANY, it is their JOB.
But they were referred to as THUGS, once again a flipping disgrace.
Yet when we have anti western Muslims shouting support of the 9/11 bombings I don’t see them marched on!
In life we will never always agree with people, this country will always flirt with fascism, (remember the pre war Mosley days?) and we should beware the shadow of fascism, but also beware we do not know the difference between our enemy and what we stand for.
An angry mob never put across a positive message or image.
As I say before anyone critises me for this post (there be one person who won’t read my introduction) I am not a fascist, I am a peaceful person who believes we can’t protest in a non violent way and also not act like a member of a sheep heard.
As a Unison activist I have leaflet dropped and worked on stalls handing leaflets at election time as the BNP has gone very close in the local elections in Southend (thankfully never won a seat yet).
Funny isn’t it one sentence into this blog and I am quick and eager to establish that I am not a Nazi or this blog may not be read or I may get a brick through my living room window.
Yet I write as I feel a bit uncomfortable after Saturdays anti BNP march.
I am proud of our democracy we live in, our freedom of speech without getting a truncheon across the head or being thrown into a jail as a political prisoner.
Freedom of speech and BELIEF is a very important value and also I acknowledge the right to protest.
Yet are we in danger of turning into a society that says you can have your freedom of speech or belief ...............as long as I agree with it.
See on Saturday the BNP were having a party meeting, this was a meeting of like minded people meeting, ok the political beliefs they shared where not my cup of tea, but did they not have a right to meet and share their own views within a safe environment?
Is this not what us people in a minority group have done over the years to escape persecution whether we are Gay, Trans or of a different creed?
Yet a mob marched on them, and even threatened them, is this not a danger of turning yourself into what you most hate or dislike?
Would a visitor from another planet for the day been unsure of who was who on Saturday as words of BNP scum was shouted and yes there were children of BNP members at that meeting there.
When do we get a right to call people scum?
Did not Ghandi preach peaceful protesting and non violence?
IIs this how we deal with things now, get into a mob and lynch people who dare disagree with us.
Also the police over the years have been a safe haven for me, whether when I was attacked by a group of chavs (in my Goth days) or even in my Pre full transition days.
So Saturday as part of their JOB they had to marshal the protest as they do ANY, it is their JOB.
But they were referred to as THUGS, once again a flipping disgrace.
Yet when we have anti western Muslims shouting support of the 9/11 bombings I don’t see them marched on!
In life we will never always agree with people, this country will always flirt with fascism, (remember the pre war Mosley days?) and we should beware the shadow of fascism, but also beware we do not know the difference between our enemy and what we stand for.
An angry mob never put across a positive message or image.
As I say before anyone critises me for this post (there be one person who won’t read my introduction) I am not a fascist, I am a peaceful person who believes we can’t protest in a non violent way and also not act like a member of a sheep heard.
Saturday, 15 August 2009
Things you can take for granted when they’re gone
After nearly 2 weeks back home and nearly back to my old routine, I was thinking about things I realised I had taken for granted while in hospital and even after as I recover and build up to normal health again.
Personal Hygiene
This would mainly include bath/shower and clean hair.
Due to the amount of tubes and drains in post op a bath is out of the question and also washing of hair.
After 3 weeks in tubes, I was finally able to wash my hair; my first bath when I got home was total heaven.
The vote amongst us ladies on the ward of most missed – clean hair.
Change of scenery
Yes stuck in a hospital ward for 5 weeks, you do miss the great outside.
When I finally got to sit out on the balcony it rained, instead of moaning I thought it’s wonderful.
As was a walk to the canteen for a change of location.
Your own bed
Nothing beats your own bed, its little niches and bumps that conform to your body and own personal comfort.
Independence.
You lose a lot of this, especially the first week post op as you really can’t do a lot for yourself, (even sitting yourself up in bed.
Once you can start doing little things for yourself it feels just wonderful.
Freedom of body movement
This is due to tubes in your body, they control how you move, sit and sleep.
When they come out total bliss.
Peace and quiet
You do get used to the hospital wards noises and lights on at unusual times, cleaners coming round at 6am, you just cannot beat control of your own environment noise and light wise.
Freedom from pain
Perhaps this should be at the top of the list, but to be in pain is horrible, you really would do anything to be free from it.
Getting about
I am now building up my walks but still need people to buy things from the shop for me, or to drive me there, I do miss not being able to go to the shops for myself, also it affects retail therapy.
Change in life circumstances.
I just had my letter from work that tells me from 17th September my sick pay goes to half pay, I was quite calm, had expected it and said “whatever”
Appreciating life
I know I’m boring as I keep saying this! But you really do see life so differently when affected by your health to my degree and you do notice that people moan about a whole lot of nothing at times.
Personal Hygiene
This would mainly include bath/shower and clean hair.
Due to the amount of tubes and drains in post op a bath is out of the question and also washing of hair.
After 3 weeks in tubes, I was finally able to wash my hair; my first bath when I got home was total heaven.
The vote amongst us ladies on the ward of most missed – clean hair.
Change of scenery
Yes stuck in a hospital ward for 5 weeks, you do miss the great outside.
When I finally got to sit out on the balcony it rained, instead of moaning I thought it’s wonderful.
As was a walk to the canteen for a change of location.
Your own bed
Nothing beats your own bed, its little niches and bumps that conform to your body and own personal comfort.
Independence.
You lose a lot of this, especially the first week post op as you really can’t do a lot for yourself, (even sitting yourself up in bed.
Once you can start doing little things for yourself it feels just wonderful.
Freedom of body movement
This is due to tubes in your body, they control how you move, sit and sleep.
When they come out total bliss.
Peace and quiet
You do get used to the hospital wards noises and lights on at unusual times, cleaners coming round at 6am, you just cannot beat control of your own environment noise and light wise.
Freedom from pain
Perhaps this should be at the top of the list, but to be in pain is horrible, you really would do anything to be free from it.
Getting about
I am now building up my walks but still need people to buy things from the shop for me, or to drive me there, I do miss not being able to go to the shops for myself, also it affects retail therapy.
Change in life circumstances.
I just had my letter from work that tells me from 17th September my sick pay goes to half pay, I was quite calm, had expected it and said “whatever”
Appreciating life
I know I’m boring as I keep saying this! But you really do see life so differently when affected by your health to my degree and you do notice that people moan about a whole lot of nothing at times.
Thursday, 13 August 2009
Next leg of the Lucy cancer tour
I have been home for just over a week now (since Monday 3rd August) and have just got home from my latest appointment at Whitechapel.
A sad little day as I hugged the doctors and Nurses from the team, I have been referred back to Southend hospital and the team have been fantastic to me and showed a lot of respect to my family.
One thing I won’t miss is my last tube coming out “the NG nose feed” this tube has been with me for six weeks, but was very important as it fed me whilst waiting for my bowl to “restart” after surgery, thank you NG nose feed tube but I won’t miss you!
So I need about six weeks to recover and put weight back on (dietian told me to eat ice cream etc, said I was too healthy!) I am buying some puddings and ice cream to supplement my fresh fruit; I have about 3 stone to put back on.
But my next stage is to start chemo and I felt it was time to think blog and reflect, as I am scared of this stage but spoke to some people in hospital and have been given a support number about losing my hair and the other side effects of chemo.
But I am ready to face the next stage and as usual appreciating every step and new day of life.
So five weeks in hospital, two operations (total of 14 hours) 3 visits to the high recovery unit and a loss of three stone and a lost “friend”; I am tired and need rest!
Whitechapel is a ok hospital, just the nurses are overworked and who does enjoy hospitals, I am glad I had my IPod player, books and laptop.
The day of the original operation.
I was not nervous on this morning; I had been expecting the op and had time to think about it and what it meant.
As I checked into the ward I saw other patients being shown through to the waiting area.
I first had a visit from the anesistist team, who advised an epidermal for post op pain relief, which I was happy to do, then my gown to change into and my white anti DVT socks.
I was told I was in theatre at 10:30 as I was the “major” op of the day.
I was glad I brought my book in as it was 9am.
I had a man come up to show me to the theatre as we walked there, this felt strange, I can understand how a prisoner feels being lead to “the chair” or the gas chamber”.
I remember as I saw the doors in front of me that lead to the theatre, don’t look through them!
I had the epidermal put in and this hurt a lot.
Then I was out.
My first awareness as I was waking up was PAIN lots of PAIN; I was on my way to the high dependency unit and for my pain control.
My epidermal was not working, so a second option was being used, it took over 2 hours for this to settle down, it was horrible, crying and awful pain, then blessed relief and sleep.
I was there for a night then time to move onto a ward, the beds are in high demand here, really the purpose is to get you comfortable, sort your pain control and move you on.
But I was still getting pain (the faulty epidermal) so I still needed a visit from the pain team (I know sounds like pinhead and co from hellraiser!) and then finally I had morphine on a button press.
Then my first visit from my lovely sister and arseole dad (dad was to be banned by me later) they fought over a chair until I reminded dad that Jeanette was:
Recovering still from a operation herself
She was a lady so give the seat up
He was showing himself up
He then relented and sulked, yes my dad can sulk for England.
I was on sips of water at this stage, now this was a hot month and I so wanted to gulp back the water, but sips it was and no food at this moment.
With the sips of water and other little things like be able to sit in bed comfortable you realise the simple little things you take for granted in everyday life and also being in hospital yourself dignity.
What mean by this is simple things like bathing and washing, to me hygiene is very very important, so important that I would not date a person with poor personal hygiene.
Due to the drains I had in and other tubes my wash was a bowl of water by my bed.
Also at this stage I was so glad of another fact, that I had laser for facial hair removal!
At this stage I had been of hormones and was also in a ladies ward, imagine if I had not had laser on my face and stubble sprouting over my face? So please any trans people reading this article and thinking of transition the first thing you do is sort out your facial hair removal.
I went off track!
But I had a limited washing routine but was able to keep some dignity and also make friends on the ward and not worry about “do I pass” ok I don’t worry about this anymore.
At this stage I was also starting to vomit a lot and the doctors also worried.
I was told that I needed a second operation as possibly the “join” back to my stomach may not be working, also the body produces a lot of fluid everyday and mine had no way of dealing with it without tubes and machine help.
The fact I was being sick while on a feed was not a good sign, so after a long cry and cuddle from the ward sister I signed the consent form for my second operation.
Also my sister phoned bless her, also at this stage she asked me have you heard from “person x” to which I said no it’s like she’s just disappeared.
I was nervous before this operation, the stakes where different now, what if this did not work? What would it mean for me, I knew it already meant my hospital stay was to be extended?
Well back in recovery after, back in pain and the pain team was not about.
A nurse made a discussion to give me some morphine to they were on duty and this felt wonderful.
Also they got my book for me.
I am so glad I like reading as while in places such as I was, it is a wonderful escape to find in a book.
Back to a different ward this time and the tracing of my suitcase, laptop etc etc!!
Now a tribute to my sister, it took her nearly 2 hours to get from her house to the hospital and would have cost about £12, yet every Friday and Sunday she done this while also working and keeping a home, thank you Jeanette I love you so much.
She asked again heard from “person x” I said no, she really wanted to call her; I said no, she is most properly in a self pitying mood. My sister made this journey, person x could not contact me, what a fake!
I did speak to “person x” online at one stage, but it felt like care by numbers and perhaps im in a different place and it’s not worth being angry or feeling rejected.
I am fighting for my life and trying to be as positive as possible amongst my many feelings of fear, anger and uncertainly, they are a fragile ego who suffers self pity. I did notice they become the focus for my anger, perhaps it was because I wanted to grab hold of them, shake them and say want to swap problems?
Anyway let’s move on, I done the mourning for this friendship and now the tombstone is in place I got to forget negative and fake people.
I did feel better after this op and was walking in no time, but still I could not eat and a different tube needed to be put in.
Back for a local knock out drug and yes back to recovery (for last time) as it had been a rocky road again.
I was able to come back to the same ward and my see my friends again to wild applause.
When you’re in a surgical ward and everyone else has had a surgery of some kind you really do bond and share lots and in this ward us girls did, it was a privilege to know women such as Doreen, Kathy, Lucy and Jill.
Then I got to sit on the balcony in the fresh air, total heaven and this become our daily gossip spot.
So minutes blurred into hours into days and I got into my own routine.
Tubes come out, except the NG feed and I finished three books (2 Dean Koontz and one Richard Layman for the record) watched lots of films and television.
Then I got the word let’s put you onto a soft food diet.
Now eating felt so strange and unpleasant after four and a bit weeks without it, but I managed not to be sick and found a fondness for strawberry jelly.
Has I was not being sick and the only thing keeping me in hospital was my feed it was put to me how I felt about going home with a NG feed and changing it myself, and I was like YES I can do this just let me go home!
Has I was packing my case to g home (this felt wonderful) I noticed I still could not find my DVD case, this had 20 films in, series 3 of Xena and friends and had been missing since my second operation, but I could not get stressed I thought I still got my laptop, IPod and PSP and I replace the films.
I have replaced friends and xena for a grand total of £20 from play.com is life worth getting this stressed? To me the answer is no.
Another happy memory of my hospital stay is the wonderful messages of support from Caroline and Demi (yes my twitter and blog friends) Caroline getting so many people to email, to a woman feeling deserted by a so called friend this was a priceless moment and I love and thank Caroline so much.
After being home for a week and now my nose feed out its onto the next stage, Southend hospital and chemo, so it be more headscarves shopping next week (my aim to go to town) and a look at more wigs.
I will fight on and believe me every day is a treasure, remember if you have troubles face them and don’t let them get you down.
Love and peace to everyone and thank you for taking the time to read my blog and comment back, I always value it.
A sad little day as I hugged the doctors and Nurses from the team, I have been referred back to Southend hospital and the team have been fantastic to me and showed a lot of respect to my family.
One thing I won’t miss is my last tube coming out “the NG nose feed” this tube has been with me for six weeks, but was very important as it fed me whilst waiting for my bowl to “restart” after surgery, thank you NG nose feed tube but I won’t miss you!
So I need about six weeks to recover and put weight back on (dietian told me to eat ice cream etc, said I was too healthy!) I am buying some puddings and ice cream to supplement my fresh fruit; I have about 3 stone to put back on.
But my next stage is to start chemo and I felt it was time to think blog and reflect, as I am scared of this stage but spoke to some people in hospital and have been given a support number about losing my hair and the other side effects of chemo.
But I am ready to face the next stage and as usual appreciating every step and new day of life.
So five weeks in hospital, two operations (total of 14 hours) 3 visits to the high recovery unit and a loss of three stone and a lost “friend”; I am tired and need rest!
Whitechapel is a ok hospital, just the nurses are overworked and who does enjoy hospitals, I am glad I had my IPod player, books and laptop.
The day of the original operation.
I was not nervous on this morning; I had been expecting the op and had time to think about it and what it meant.
As I checked into the ward I saw other patients being shown through to the waiting area.
I first had a visit from the anesistist team, who advised an epidermal for post op pain relief, which I was happy to do, then my gown to change into and my white anti DVT socks.
I was told I was in theatre at 10:30 as I was the “major” op of the day.
I was glad I brought my book in as it was 9am.
I had a man come up to show me to the theatre as we walked there, this felt strange, I can understand how a prisoner feels being lead to “the chair” or the gas chamber”.
I remember as I saw the doors in front of me that lead to the theatre, don’t look through them!
I had the epidermal put in and this hurt a lot.
Then I was out.
My first awareness as I was waking up was PAIN lots of PAIN; I was on my way to the high dependency unit and for my pain control.
My epidermal was not working, so a second option was being used, it took over 2 hours for this to settle down, it was horrible, crying and awful pain, then blessed relief and sleep.
I was there for a night then time to move onto a ward, the beds are in high demand here, really the purpose is to get you comfortable, sort your pain control and move you on.
But I was still getting pain (the faulty epidermal) so I still needed a visit from the pain team (I know sounds like pinhead and co from hellraiser!) and then finally I had morphine on a button press.
Then my first visit from my lovely sister and arseole dad (dad was to be banned by me later) they fought over a chair until I reminded dad that Jeanette was:
Recovering still from a operation herself
She was a lady so give the seat up
He was showing himself up
He then relented and sulked, yes my dad can sulk for England.
I was on sips of water at this stage, now this was a hot month and I so wanted to gulp back the water, but sips it was and no food at this moment.
With the sips of water and other little things like be able to sit in bed comfortable you realise the simple little things you take for granted in everyday life and also being in hospital yourself dignity.
What mean by this is simple things like bathing and washing, to me hygiene is very very important, so important that I would not date a person with poor personal hygiene.
Due to the drains I had in and other tubes my wash was a bowl of water by my bed.
Also at this stage I was so glad of another fact, that I had laser for facial hair removal!
At this stage I had been of hormones and was also in a ladies ward, imagine if I had not had laser on my face and stubble sprouting over my face? So please any trans people reading this article and thinking of transition the first thing you do is sort out your facial hair removal.
I went off track!
But I had a limited washing routine but was able to keep some dignity and also make friends on the ward and not worry about “do I pass” ok I don’t worry about this anymore.
At this stage I was also starting to vomit a lot and the doctors also worried.
I was told that I needed a second operation as possibly the “join” back to my stomach may not be working, also the body produces a lot of fluid everyday and mine had no way of dealing with it without tubes and machine help.
The fact I was being sick while on a feed was not a good sign, so after a long cry and cuddle from the ward sister I signed the consent form for my second operation.
Also my sister phoned bless her, also at this stage she asked me have you heard from “person x” to which I said no it’s like she’s just disappeared.
I was nervous before this operation, the stakes where different now, what if this did not work? What would it mean for me, I knew it already meant my hospital stay was to be extended?
Well back in recovery after, back in pain and the pain team was not about.
A nurse made a discussion to give me some morphine to they were on duty and this felt wonderful.
Also they got my book for me.
I am so glad I like reading as while in places such as I was, it is a wonderful escape to find in a book.
Back to a different ward this time and the tracing of my suitcase, laptop etc etc!!
Now a tribute to my sister, it took her nearly 2 hours to get from her house to the hospital and would have cost about £12, yet every Friday and Sunday she done this while also working and keeping a home, thank you Jeanette I love you so much.
She asked again heard from “person x” I said no, she really wanted to call her; I said no, she is most properly in a self pitying mood. My sister made this journey, person x could not contact me, what a fake!
I did speak to “person x” online at one stage, but it felt like care by numbers and perhaps im in a different place and it’s not worth being angry or feeling rejected.
I am fighting for my life and trying to be as positive as possible amongst my many feelings of fear, anger and uncertainly, they are a fragile ego who suffers self pity. I did notice they become the focus for my anger, perhaps it was because I wanted to grab hold of them, shake them and say want to swap problems?
Anyway let’s move on, I done the mourning for this friendship and now the tombstone is in place I got to forget negative and fake people.
I did feel better after this op and was walking in no time, but still I could not eat and a different tube needed to be put in.
Back for a local knock out drug and yes back to recovery (for last time) as it had been a rocky road again.
I was able to come back to the same ward and my see my friends again to wild applause.
When you’re in a surgical ward and everyone else has had a surgery of some kind you really do bond and share lots and in this ward us girls did, it was a privilege to know women such as Doreen, Kathy, Lucy and Jill.
Then I got to sit on the balcony in the fresh air, total heaven and this become our daily gossip spot.
So minutes blurred into hours into days and I got into my own routine.
Tubes come out, except the NG feed and I finished three books (2 Dean Koontz and one Richard Layman for the record) watched lots of films and television.
Then I got the word let’s put you onto a soft food diet.
Now eating felt so strange and unpleasant after four and a bit weeks without it, but I managed not to be sick and found a fondness for strawberry jelly.
Has I was not being sick and the only thing keeping me in hospital was my feed it was put to me how I felt about going home with a NG feed and changing it myself, and I was like YES I can do this just let me go home!
Has I was packing my case to g home (this felt wonderful) I noticed I still could not find my DVD case, this had 20 films in, series 3 of Xena and friends and had been missing since my second operation, but I could not get stressed I thought I still got my laptop, IPod and PSP and I replace the films.
I have replaced friends and xena for a grand total of £20 from play.com is life worth getting this stressed? To me the answer is no.
Another happy memory of my hospital stay is the wonderful messages of support from Caroline and Demi (yes my twitter and blog friends) Caroline getting so many people to email, to a woman feeling deserted by a so called friend this was a priceless moment and I love and thank Caroline so much.
After being home for a week and now my nose feed out its onto the next stage, Southend hospital and chemo, so it be more headscarves shopping next week (my aim to go to town) and a look at more wigs.
I will fight on and believe me every day is a treasure, remember if you have troubles face them and don’t let them get you down.
Love and peace to everyone and thank you for taking the time to read my blog and comment back, I always value it.
Thursday, 6 August 2009
quick update
I will write a longer blog next week, it has been a 5 weeks of ups and downs and life changes
I am settled at home and starting to eat again
I do value life so much, but feel sad as I think a freindship has "bitten the dust" how anyone could just "dissappear" while I needed all the support, thats their loss.
No spell check here, so forgive typos
I am going to continue to fight as I start chemo soon, I do feel postive and do feel like life is a second chance.
My sister was wonderful while I was in hospital and also I want to thank Demi and Caroline for their support and all the wonderfull messages I got, they do help me so much.
love and peace to you all
lucy
xxxxxxxxx
I am settled at home and starting to eat again
I do value life so much, but feel sad as I think a freindship has "bitten the dust" how anyone could just "dissappear" while I needed all the support, thats their loss.
No spell check here, so forgive typos
I am going to continue to fight as I start chemo soon, I do feel postive and do feel like life is a second chance.
My sister was wonderful while I was in hospital and also I want to thank Demi and Caroline for their support and all the wonderfull messages I got, they do help me so much.
love and peace to you all
lucy
xxxxxxxxx
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