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Newly diagnosed 45 yr old mum of 4


Marieb
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Hi all, was a bit quick in my news of having a good response to the chemo. unfortunately things got worse over night and I was admitted to hospital with a suspected infection. In the end my bloods etc were normal and they just believe I had a bad reaction to it. Was all a bit scary at the time but I guess it's all just going to take a bit of getting used to.

Today I feel much better, just feeling weak and my tummy isn't great.


Hoping that's the worst over now though and I get a good few days of feeling near normal before we go again on 17th.


The teams in my local hospital were wonderful though x


Marie

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  • 1 month later...
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Hi all, sorry I haven't updated in a while but it feels like I have been through a rough few weeks.


It appears now that my first spell in hospital was down to a reaction to the Irinoteken. I just don't seem to tolerate it well at all


They took to giving me a vile of aatripine to be administered by a district nurse if the side affects came on at home.


I get bad sweats, stomach cramps and bad diorreah which made me largely house bound.


However this time they missed that out and what a difference it has made. I have been feeling good and able to get out for a couple of hours each day which is fantastic.


I have my 1st CT Scan tomorrow and then I meet with my oncologist the following Friday to discuss next steps.


I am feeling very positive just now...I know I can fight this...its just a case of finding a balance.


I have spoken to the team about Nanoknife, I am too advanced just now but I am forever hopeful that that will change. Who knows what will be available if I can just keep this fight going.


Life is good, I am enjoying spending more time with my family and I take each day as it comes.


Marie X

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Hi Julia


Due to my reaction I was getting the Atripine before, then half an hour after and then a back up dose for home. Unfortunately even that didn't control the adverse reaction and that's why this time the missed it out all together.


What I don't know at this stage is how removing this drug will affect the overall treatment, I need to discuss that with my Oncologist this week but I am at least confident that everything they do is done with my best interests at heart. I feel lucky to have a great clinical team working with me on this.


Hope you have all had as good a weekend as you can manage X

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A wee drama or two!


Hi all have had a couple of wee dramas this week. Firstly I woke up Sunday morning with cramping in my right leg, continued all day so I decided to call NHS24 . Turns out I have a DVT. I was glad I had reported it early.

Secondly I had a fall in the shower on Tuesday morning. It appears I fainted due to being anaemia I came clattering down and have fractured one of my lower vertebrae. That was a tad sore!

On the plus side my eldest, who is 17, got to play paramedic by helping them stretcher me down the stairs and then got to ride up front whilst the the blue lighted through the town...he was delighted !!

So I am in hospital getting bed rest and pain management but am already up and about (albeit shakily with a stick).


The OT people came to visit the ward and kitted me out with a support brace (looks like a corset), surgical stockings, a walking stick...in my minds eye I am Liza Minelli :)...all I need is a bowler hat...hey the sick bowl could cover that!


So it's been an eventful week, I have scared my husband and kids to death and I have laughed and cried a lot.


Welcome to the Caberet old Friends...Life is a Caberet :)


Marie

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Yes, what a week you've had Marie! Good to hear your humour shining through, keep smiling and mend soon. Thank you too for your kind words on my post. Thinking of you and your family xxx

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Hi all


I have had some wonderful news today. I a have now had 4 cycles of Folfirinox and my latest scan, taken a week ago, shows that my tumour has shrunk by 1cm. It was 9cm so is large but I feel this is a real step in the right direction.


Feeling happy tonight.


Marie

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Oh Marie you have really been through it! I hope you are on the mend from your fall. What positive news from your scan I am so pleased for you. Take care of yourself.

Love Sue xxx

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Thanks everyone for your kind support, being able to dip in here is great.


I have a lovely day to look forward to today. My favourite artist (Julie Dumbarton - check out her "colour hugs...they brighten the dullest and most difficult days) is having an open day at her Gallery. It's an hours drive away so I was thinking I would miss out as my back is still too sore for a long drive but I have 3 work friends who are travelling down to me (they stay in Ayr which is 1.5 hours drive) to accompany me to the Gallery for a day out. I haven't seen them since first going off sick in Late May so it will be quite a reunion. I have lost 5 stone stone and had my hair cut short in that time so I am sure my appearance will come as a shock although I have been messenging them and sent photos.


As you can probably tell from what I am writing, I am both excited and slightly scared to see them, I can imagine tears but then a lot of laughter, I just hope they cope okay...I hate the impact this horrible disease has on the lives of others...although sometimes it can be positive, with people taking stock of their lives.


I also booked a wee holiday in Ayr in a couple of weeks time. It's a cottage by the sea in a small seaside village with an old fashioned harbour and lots of lovely walks. It will be lovely to focus solely on my husband and kids (oh and Belle our Goldendoodle) although I have to pop into their local hospital at the end of the week for Hickman Line care and bloods as I get my next chemo the day after we return home.


well that's my news, hope you are all doing as well as you can, and if you are having a bad day...cry, it's ok to do that too


All my love and hopes for us all are with you


Marie xxx

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Dear Marie how good you are at being positive even when you must have days that you don't feel it ,well a day with friends and a visit to see your favourite artist will do you the power of good ,and then sometime by the sea which I think is so good for the soul !! Marie just live for the moment as in the greater plan of things it's all any of us can do . so you go girl and enjoy your moments and keep on inspiring everyone fighting this dreadful disease as you do .as I have said before its only on this forum that you really feel people understand what sufferers and carers go through .


Take Care all .

Emma X

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Hi all,


What a lovely day it has been today. My visit with friends to the art gallery was wonderful. My friends met me with open arms and smiles and not for one moment did I feel uncomfortable about my changed look or the fact that we had to take it slow.


The journey took around an hour, through wonderful country side but terrible (and regrettably typical) Scottish B roads, which were twisty, roughly surfaced and full of blind bends...best travelled with eyes closed unless of course you are the driver! It was difficult with a dodgy tummy and busted back but the excitement and the endless chatter and laughter saw me there before I knew it.


The gallery is in a converted ancient church with high vaulted ceilings and light dapples through stained glass windows. I met the artist herself and sat drinking tea whilst getting lost in her highly colourful art. What an experience, a massive "colour hug" was administered and this medicine was gladly taken.


One of my friends purchased a card of one of her paintings of a sunflower field knowing its my favourite flower as to me it represents strength and beauty (and remind me of my recently deceased mum) ....she sent me a photo later with it displayed on a wall with a decorative heart above it, saying she had renamed the picture as Marie...I feel so touched, their massive gesture to travel so far and take me out for the day and for how they see me........so much for worrying about them being shocked by my changed physical status.


It's little (but oh so big) things like this that push me on and give me the determination to fight, fight and fight some more!


I have a message for you PC...I ain't going down without a fight!


Marie

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Hi Marie,

Sounds like you had a wonderful day with wonderful friends! My Mum always says as long as she has something to look forward to each week it helps her!

You keep fighting you are amazing.

Lots of love ,

Sue xxx

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  • 2 weeks later...

Hi Marie


So glad to hear about your wonderful day - how precious, and what lovely friends you have (in my experience, lovely people tend to draw lovely people around them). I like how you write too, I could just picture the gallery, the light and the paintings. It is certainly the little or simple things that are often the biggest gift in life, and whatever time we have, we must grab the good times where we can and share them with our loved ones.


You have an amazing strength which I know is going to see you through this terrible illness, because I believe it is possible to simply refuse to be beaten, and you sound like a woman who could do that. Keep on fighting and know we are all supporting you. You are an inspiration!


Sending you big hugs and imaginary sunflowers,


Kate

XXX

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Thanks Sue and Kate for your lovely messages. I very recently announced at work that I won't be returning as I am taking I'll Health Retirement. I work as A Project Manager for NHS SCOTLAND and am in the lucky position of paying into a very good pension scheme all of my 25 years. It's time to let it pay me back and use whatever time I have left to fight this nightmare disease and spend every precious moment with my family and friends.


I fully intend to fight this and my hope is that I will prove the medics wrong and come through the other end...at which point I intend to start my own business.


For now life is good, some days are difficult but reading other threads I realise I am fortunate to be coping with chemo well and with the help of creone my appetite is far better. I feel there is now a routine to it all that I can work with. Life is different and slower but I can work with that.


Take care all and remember all any of us can do is take it a day at a time and try to see the positives...easier said than done when times turn tough though.


Love to you all X

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