jujuc

I WILL FINALLY GET MY BUM BACK!!

2011-06-29T10:54:00Z

Hi everyone, I haven't blogged for awhile but I have been around supporting others.

I had a telephone call this morning from my colorectal nurse telling me that I am to be admitted to hospital on the 6th July (exactly 2 years to the day since all this started)

My surgeon wants to build up my electrolytes prior to an operation on the 8th July to reverse my iliostomy.

It has been a long 2 years but now I can see a light at the end of a very very long tunnel. I finally get my bum back!

I intend sticking around as usual to give my support to everyone that wants it.

Love Julie xxx

Love Never Dies!

2011-03-28T20:33:52Z

28th March 2006 the day my world collapsed!!!

I will never forget you!

Love Never Dies!

Always and Forever My Darling! XXXXXX

Special treatment!

2011-03-21T12:58:39Z

Well I do feel special! I was sitting watching morning TV when my phone rang.

It was my surgeon!

I blogged a few days ago that I have been waiting for an appointment to see him after 4 weeks from leaving hospital , this came and went and I have had no appointment.

To cut a long story short, he rang to ask if I had received an appt, I said no that I was waiting for todays post to come and if I didn't get one then I was going to ring his secretary. He said that I should have been to see him at 11-15am and when I didn't turn up he was worried as it wasn't like me not to!

Anyway he has made a special appointment for me on thursday at 3-30pm on the ward. I am to go to the ward and ask the nurses to page him and he will come to see me!

Special treatment or what? Hows that for service?

I hope that everyone waiting for appts will get them soon!

Love Julie XXX

I Want My Life Back!!!!

2011-03-19T10:51:22Z

I was discharged from hospital 4 weeks ago after a 3 week stay!

The Dr said they would see me in 4 weeks in the clinic.

No appointment as yet!!

I have been having trouble with my illiostomy stoma and rang the colorectal nurse for advise.

The nurse asked me if I had seen anyone since I was discharged? My answer was no!

The nurse said that she would get my surgeons secretary to send me an appointment, now that was over a week ago!

Why when they say 4 weeks don't they stick to it? It is more than likely going to be 8 weeks as I know that we usually get about 3 weeks notice.

Now the urology specialist said that he would see me in 2 months, I have had the appointment for 2 weeks already .

I have a new grandson to meet, he is already a month old. He lives a 9 hour car journey away!

I have a posh wedding to go to in Scotland in June and have been promised that my temperary illiostomy will be reversed by then!

I don't have a cat in hells chance!!!!

Cancer! Hospitals! Doctors! I am sick of it all!

I Want My life Back!!!!!!!

Love Julie xx

Miracles do happen

2011-03-13T22:45:06Z

My partners 79 year old borther was diagnosed with prostate cancer on new years eve.

Since then he has been taking hormones and antibiotics.

On wednesday 9th March he went into hospital to have the tumour removed.

When he came round from the operation the surgeon told him that he had done everything he could for him.

My partners brother asked what that meant.

The surgeon said I did nothing.

Oh said my partners brother so this is the end then?

No said the surgeon, there was nothing there to be done. I can't understand it there was something there, the scans and the blood tests all said there was something there but there isn't now, it has gone!

How could that be asked the patient. The surgeon said he didn't know maybe the hormones or antibiotics did it but all I know is that there are no tumours you don't have cancer now!

Wouldn't that be wonderful it if could happen to us all?

Love Julie xxxx

Didn't get my bum back!!!!

2011-02-09T12:48:52Z

Hi everyone! Well I am back after a 9 hour operation and 12 days in hospital and feeling very weak.

I just wanted to update you with what has happened.

To those who don't know me I went in for a colostomy reversal.

When the surgeon opened me up they found my bowel had dropped into my pelvic area and it was stuck to everything (adhesions)

I now have a tempory iliostomy for 3 months and the surgeon assured me that it will be easier to reverse.

The good news is I am still NED!

As I am feeling very weak I won't be around for awhile but knowing myself I will be stronger in no time.

I send everyone my love. All the best to those of you who are "Waiting" or receiving treatment.

Lots of Love Julie xx

I WILL HAVE MY BUM BACK!!

2011-01-27T15:23:15Z

Tomorrow is the day I have been waiting for these past 18 months. My stoma will be reversed and my journey with cancer will come to an end.

Hopefully that is true, no more statistics, no more probability theory just good clean honest living. Valuing the fact that I have been very fortunate.

I will be in hospital for upto 10 days depending on how well I recover.

I didn't think that I would be nervous not at all more to the contrary excited, but thats not true. I feel very nervous because I remember what I went through in the beginning. I was cut from breast bone to pubic bone and I will be tomorrow.

Still it will all be worth it because then I will HAVE MY BUM BACK!!!!

Take care everyone and I will be back soon.

Lots of Love Julie xxxxx

The Probability Theory

2011-01-23T12:36:01Z

The Probability Theory I wish I had never heard of it!

I hadn't until thursday morning wqhen the postman dropped a big fat envelope through my letterbox.

I was happily chugging along with my life. Relieved that my journey was coming to an end ( I had just been for my pre-op assessment for my stoma reversal) then Wham Splat Bam. I get blown way with what the professor said.

That if my bowel hadn't have burst then I could have considered myself cured, because it had burst I have to consider myself uncured.

Also the probability is that I will die from my disease within the next 5 years if not in the next 10!

Wow how do you come to terms with that?

It has catapulted me back 8 years to when my husband was diagnosed with meso and we knew there was no cure for him.

How it made us feel that we had lost control of our lives of our future.

Now he is gone and it has been for 5 years. I had my own battle with cancer and thought that I had won. Yes I am NED yes I thought I was cured. Silly old me.

Why should I be different?

I just feel like I have lost control again. I want to try to put my life back into perspective but those words are ringing in my head.

Most likely, probably. All because the Drs didn't do there job properly and let my tumour grow big enough to cause a blockage thus allowing my bowel to burst.

B....rds!!!!!!!!!!!!!

Where do I go from here? How do I pick myself up?

I try to talk to my partner but he doesn't hear me.

I have just said that I feel all wound up today his answer was "Do you darling" not why? Oh no he is too interested in watching tv.

Lots has gone on this week I have lost my best friend who I thought was my best friend, she told me that I had too much baggage for her. That was before this happened.

If I hadn't brought a complaint against the PCT then the professor wouldn't have got involved and I would be none the wiser. Going around happy as a sandgirl believing that I had beaten cancer.

Whereas now I have been told that cancer will beat me.

I hate feeling out of control of my life.

Love Julie xxxx

What a day!

2011-01-20T14:37:59Z

I have just had my pre-op assessment for my stoma reversal on the 28th Jan, next friday.

All is well and I long for the day to come. It will be the end of my journey I hoped!

I came home to a very large envelope from my solicitor. It was statements from 2 specialist professors in the field of surgery and oncology. I already have one from a specialist radiographer.

I have started a complaint against my local PCT accusing them of neglect, dereliction of care and misdiagnosis.

The 3 professors both agree that there was gross negligence when reading a scan I had in April 2008. Plus the fact I did not see the specialist herself on either occasion. Also on the part of the specialist (differen one) I had seen in April and July 2009 for not organising further tests, for relying on scans and tests done in 2008 and again for not seeing me himself. Also for missing the cancer when he performed a fleible sigmoidoscopy in 2008. Thus the outcome was that my bowel perforated and I have since gone through uneccessary pain and trauma ie an emergency operation and a stoma and now a stoma reversal.

So that is the good news the Drs were at fault.

Now for the shock and the bad news.

In the statement the oncologist went into great lengths about statistical life expectancy and that my odds of surviving 5 years and or surviving 10 years but dying from my disease was shortened due to the fact that my bowel was perforated. Scary stuff!

So it seems that I might be inline for compensation but I may not be around to enjoy it!

Is that what they think well they can damn well think again!

Love Julie xx

2011

2011-01-01T20:21:47Z

Well 2010 ended with my partners brother getting a diagnosis of prostate cancer, caught early so the prognosis is a good one. Never the less a very scary word cancer to anyone who is told they have it.

My partner understands how things can work out having been beside me in my journey with this dreaded disease.

2010 also ended for me on a good note as I have finally got my date for my stoma reversal it is the 28th January so my journey will finally come to an end.

I would like to wish all my friends on mac both old and new A Very Happy and Healthy New Year.

I hope that we can all see an end to this disease. I will continue to pop in and out of mac to give my support to my old friends and news ones that sadly I have yet to meet.

Take care one and all.

Lots of Love Julie xxxxxx

Its been awhile!

2010-12-15T22:59:57Z

Hi to everyone who knows me on here and hello to those who don't.

Its been along while since I last blogged although I have stuck around to support my old friends and others who have come along needing to be supported at the beginning of their journey.

I just wanted to bring everyone upto date of where I am 9 months after treatment ended.

The last time I blogged it was to say that I was awaiting a reversal of my colostomy.

It has now been 8 months since I was referred to a surgeon and 5 months since I was put onto the waiting list for my operation and I have heard absolutely nothing.

I have called the surgeons secretary twice and my stoma nurse twice.

I had a colonoscopy on the 7th october and officially I am still waiting for an appointment for the results.

If I hadn't rang my stoma nurse imagine how I would be feeling now I would be absolutely doolally tap!!

My stoma nurse gave me the results and happily everything remains fine.

Now I don't know what the official waiting time is for elective surgery I am told that it differs from trust to trust.

My daughter is having her 1st baby in february at the age of 39 and she wants me at the birth. It is to be my 1st biological grandchild and I would love to be there but the way things are going and knowing my luck I am not going to make it. I live in the north west and my daughter lives in Penzance many many miles away.

Will I have had my op by then? Am I going to be fit enough? Who knows?

I know I don't!

I would like to wish all my friends on here both old and new

A Very Happy Christmas and A Wonderful and Healthy New Year

Lots of Love Julie xxx

Reversal

2010-08-23T17:35:06Z

Had my appointment for my reversal . I saw a new ( to me) consultant. He was lovely . He explained everything to me so as I could understand. Retired nurse or not I am the patient now and we nurses don't know everything.

I got to know the truth of why my cancer was never discovered. I never did have a Colonoscopy, it was just a Sigmoidoscopy. Its no wonder they never found it they never went up far enough.

So before my op I am to have a Colonoscopy just to check the bowel.

I could have the reversal in October but I have a holiday to Turkey ( Istanbul) at the end of November so I wouldn't be healed enough to fly.

So it is to be the 1st week in December. Yippee.

Just in time for me to start the New year fit and well and most importantly WHOLE.

So roll on December.

Hugs to all love Julie XXX

Remission/Cure

2010-08-07T14:31:29Z

When does the 5 years begin when a person is then considered in Remission/Cured.

Is it from the moment the cancer is removed from the body?

Is it from the end of treatment.

What if the treatment is adjuvant ( back up after surgery)

Do's anybody know?

Love Julie X

1 year on

2010-07-06T20:19:16Z

One year ago today I was in intensive care after my bowel bursting and the surgeons taking away half my bowel due to a very large tumour.

I have come along way since then. Like everyone else on here I have been to hell and back again. An experience I never want to have again. God willing I might never have to.

I feel absolutely marvellous better than I have done for years. No more IBS, no more pain, no more tiredness.

I hope for everyone to have this feeling someday.

My love to everyone and anyone who needs it.

Take care and God bless you all. I love my friends in macland.

Julie X

Out of the mouth of babes

2010-07-01T14:56:57Z

I read something really funny today, I thought that my pals in macland would like to hear about it.

The vicar had asked his sunday school children to write questions to God for the church magazine.

One child wrote " God why do you keep taking people and bringing new ones, why can't you just keep the old ones?

As the saying go's out of the mouths of babes. Bless them

Love to all Julie X