Why should i carry on.: Hi guys,i'm still at the... - NRAS

NRAS

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Why should i carry on.

uniboy20 profile image
75 Replies

Hi guys,i'm still at the hospital waiting to go back in to see my consultant. i thought i would keep you all informed as this might be my last blog for a while. I've just recieved some deverstating news today that i have cancer, yep the big "C" word, cancer of the bowel. The consultant has told me he needs to remove it, so for the next 3 months i will have a bag on my stomoch (i thought i might go out and have a drink and have a tose lol ).

Even thought im still in so much pain , now i have to stop my anti-TNF which is a bumber. They dont know what course of action to take now, my consultant needs to speak to the Rehmo doctor and they will let me know.

Ive just opened the draw (well at 7am this morning) where i keep my anti-tnf and ive still got 3 pens left, i've just took one now and im still debating whether or not i should take the other two.

Just think thats one way of being out of pain. lol

So anyway hope everyone is fine and as they say on strickly come dancing , "Keep Dancing" lol

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uniboy20
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75 Replies

I'm so sorry to hear you've had such devastating and shocking news. I can only imagine how you are feeling at this time and couldn't begin to advise you. I think you should call the helpline for some support and guidance on 0800 298 7650. Things will get better for you and with the right support you will get through this. Best wishes

Paula x

uniboy20 profile image
uniboy20 in reply to

Thank you Paula

petalnumber2 profile image
petalnumber2

We all have hills to climb and I constantly remind my self that there is always someone out there who has a bigger hill to climb than mine! I'm so sorry to hear your news, it must be very daunting for you to contemplate, but you have a sense of humour by the sounds of it and that's got to be a good start. Have you got people/family around you to support you? because, that will make all the difference to your recovery and determination to get better.

I love strictly, sounds like you're a bit of a fan too, so you just keep on dancing yourself :-) Lol x

uniboy20 profile image
uniboy20 in reply to petalnumber2

Thank you

claireyj profile image
claireyj

Thinking of you ....be strong big hugs and yep Keep Dancing ...Claire x

uniboy20 profile image
uniboy20 in reply to claireyj

Thank You Claire

cris1728 profile image
cris1728

Sorry to hear your sad news, you must be feeling really devastated, as Paula says you could call the helpline for some support. For you to share this news with us you must feel that the folks on here will give you the support you need. That they are talking of surgery and temporary bag should give you some hope that this is the right road to go for you. Do they have colorectal support nurses at the hospital who may be able to give you help and advice, it would be worth asking.

best wishes cris xx

uniboy20 profile image
uniboy20 in reply to cris1728

Thank You Cris

AnnuM profile image
AnnuM

What devastating news to have to cope with on top of everything else - I can't begin to imagine how you must feel right now. I wanted to tell you though about a friend who was diagnosed with bowel cancer a couple of years ago - and he is still with us and reasonably fit and well (He also had a heart bypass a year or two before the cancer). The thought of treatment for quite a while to come must seem frightening and too much to cope with but just take things one day and one step at a time and believe you can fight this. Sending you a cyber hug :-)

uniboy20 profile image
uniboy20 in reply to AnnuM

Thank You

Ozzy profile image
Ozzy

My father had an operation for bowel cancer nearly two years ago. He worried so much at the time, mostly about the bag, which he had to have forever because of where the cancer was. Now he almost forgets about it. He up and about and enjoying life which we are so grateful for.The hospital staff were great with him, he does not have RA, but he has so many other things, triple heart bypass etc, but they sorted out all his meds So chin up its just another of life's challenges. Perhaps think of a treat you can give yourself for solving this one. x

uniboy20 profile image
uniboy20 in reply to Ozzy

Thank You

Shell1967 profile image
Shell1967

I am very sorry to hear this,so very sorry,my friend also had cancer of the bowel,and had most of it removed,and 3 yrs later she is still fighting fit.keep fighting,keep strong,lots and lots of love and best wishes to to you love Michelle xx

uniboy20 profile image
uniboy20 in reply to Shell1967

Thank You

I'm so sorry to hear your news, you can be sure that I will be thinking about you.

All the best and keep strong.

Hugs Mary x

uniboy20 profile image
uniboy20 in reply to

Thank You

You;'re having a rough time :( Make sure they get your pain under control.

You're in my thoughts & prayers x

uniboy20 profile image
uniboy20 in reply to

Thank You

As everyone has said before me, keep fighting. My sister has a stormer bag, and she gave it the name of 'The Prat', give yours a name, it helps when talking to others. We all ask how the prat is and no one but family and close friends, know who we are talking about.

Good Luck, God Bless and we are all praying for you and not just for the Cancer but for your RA as well. xx

uniboy20 profile image
uniboy20 in reply to

Thank You

sylvi profile image
sylvi

I do understand how you feel as i have said i would be better of dead and my friend Georje will confirm that. I wouldn't contemplate suicide,but we are all here for a reason and there have been times when even i have questioned that believe you me. This op will give a better life afterwards, take a chance and it will come out for you. I will send you my prayers and hugs for you. xxxx

uniboy20 profile image
uniboy20 in reply to sylvi

Thank You

cathie profile image
cathie

I hope things look better soon. Do keep sharing things with us. I cant think of much more to say except that I hope they can help you and keep you free of pain.

XX Cathie

uniboy20 profile image
uniboy20 in reply to cathie

Thank You

helixhelix profile image
helixhelix

So very sorry to hear your news. really hope that they start treatment ASAP, and you can start to feel more positive about the future. A tough road, so stay strong. pollyx

uniboy20 profile image
uniboy20 in reply to helixhelix

Thank You

earthwitch profile image
earthwitch

You really don't need that double-whammy, and especially when it means you have to go off your anti-tnf at least temporarily, so I really feel for you right now.

However, cancer is not the death sentence it used to be. I read somewhere that one in three people (yes, that high) will get cancer at some point in their lives. Most cancers now are quite treatable, even if its an extremely difficult time to go through over the period of active treatment for it. Please do try and find some kind of support network for cancer - I don't know whats available where you live, but I know our local networks are life-savers for both people with cancer and their families and help them get through this difficult time of treatment and worry - both emotionally and practically. The support networks usually also have incredibly well trained volunteers who can really make a huge difference to how well you cope with it all.

Also make sure you are well informed and both you, and your partner both ask a lot of questions, and talk about it as much as possible until feel like you really understand the options and how to deal with it.

Will be thinking of you XX

uniboy20 profile image
uniboy20 in reply to earthwitch

Thank You

miss profile image
miss

so sorry you are having such a hard time .I will put a good word in for you with the good lord hope he takes notice of me. you take care of yourself xx

uniboy20 profile image
uniboy20 in reply to miss

Thank You

Poor you - what a horrible piece of news but hopefully as others have said you will be fine and get through it all. Best of luck and my thoughts are with you too. X

uniboy20 profile image
uniboy20 in reply to

Thank You

shirlthegirl profile image
shirlthegirl

I think everyone has said it all, It is so unfair, Just want to wish you all the best and try to stay strong, Will be thinking of you lots XX

uniboy20 profile image
uniboy20 in reply to shirlthegirl

Thank You

elrose profile image
elrose

In my prayers, all the best. All the lovely people on here have already given all the common sense advice I could probably muster you, depression is a factor with our condition anyways without the additional worry and nastiness associated with Cancer and its treatments, keep talking to us, family, friends and the medical teams supporting you and with love and luck the cancer will be a dim and distant memory before you know it. Linda x

uniboy20 profile image
uniboy20 in reply to elrose

Thank You

watson3 profile image
watson3

Hello there. Sorry to hear your devastating news.

It is so much to deal with. I am glad that you feel able to share your news.

Colon cancer can be so frightening. I hope you have a good specialist and a specialist nurse who can help reduce your fears by allowing you to ask all your questions. Also putting you in touch with someone your own age who has had surgery is always a great benefit.

Sharing your feelings and emotions is a good way to keep your feelings in perspective.

I am sending you all my best wishes for a speedy recovery.

I have had cancer and know only too well how isolated you can feel.

So please keep sharing. I know that definitely helps.

Love and light

Carole

uniboy20 profile image
uniboy20 in reply to watson3

Thank You

rattusrattus profile image
rattusrattus

so sorry to hear your awful news :( i hope you can find some inner strenth to fight it.

uniboy20 profile image
uniboy20 in reply to rattusrattus

Thank You

sciqueen profile image
sciqueen

Hi

So sorry to hear that, but hopeing you get well soon

Sci x

uniboy20 profile image
uniboy20 in reply to sciqueen

Thank You

_andy_ profile image
_andy_

youve gotta carry on ,, be strong and fight it .. youll get well soon ..

uniboy20 profile image
uniboy20 in reply to _andy_

Thank You

oldtimer profile image
oldtimer

Some years ago I worked with a chap who had had a long term colostomy bag - they don't seem to do that so much now-a-days, but seem close it back. He had had bowel cancer but that was many years before I knew him and he had a long and rewarding life after the diagnosis and treatment.

So don't give up yet - if it's caught early, bowel cancer seems to be one the ones that can be removed.

uniboy20 profile image
uniboy20 in reply to oldtimer

Thank You

roger-s profile image
roger-s

devastating news. having to come of your tablets lets hope they can keep the pain down . i am surrounded with friends who have a bag or have had it reversed , they are all ok and you will be to. try not to let it get to you. i know it easy to say. my prayers are with you , and keep use up to date as we all feel and understand how you feel. good luck

uniboy20 profile image
uniboy20 in reply to roger-s

Thank You

allanah profile image
allanah

Gosh big news for you and your family. But with cancer being strong and optimistic seems to be the way to go, my aunt has cancer and so far she feels having a positive "I will get over this" helps her a lot.

What helped her was lots and lots of talking and lots of information. She used patient.co.uk as an information source and macmillan.org.uk for support and there is also a good help on 08450719301 and you can speak to a nurse for information and support, or nurse@beatingbowelcancer.org on the site "beating bowel cancer" Sorry I dont know the costs of these. And dont forget NRAs helpline to back you up as well.

They seem to have given you a lot to take in so dont worry about bags and things as they give you lots of advice and help at the hospitals and will make sure you are happy about how to use it before you leave hospital.

I am due an op on monday and was told i have to come off my biologicals as it makes it harder for you to heal, but obviously you need to check with the Rheumies if that will be the case for you and then they will work out when they can do the op for you. Just for your info I had to wait a month after having the biologicals but this may be different in your case, mine is not an emergency procedure.

Remember the stats that 90% of bowel cancers can be cured if caught at an early stage, so thats good, in a way!

And hope you "keep dancing" and not shout " I am a celebrity get me out of here!!!" when u get ur treatments ! lol, love Axx

uniboy20 profile image
uniboy20 in reply to allanah

Thank You

uniboy20 profile image
uniboy20

Hi Guys thank you for all your kind words. i back in hospital because the Rehmo wants to check all my kidneys as well as other stuff. i will get the results later on to day. im so luckly because i have a fantastic rehumo. he has given me his mobile number so if i have any questions he has told me to ring him. Ive also been told that they need to remove 25 per cent of my bowel so it looks like i will have a bag on for atleast 6 month and then if everything is ok we will talk about reversal surgery. i just hope my kidnes and liver is ok. so if anyone knows anyone that wants a kidney, i might have one going. only a couple of hundred miles one the clock, one carefull owner, going cheap.lol.

Anyway check in later guys and ill keep you all up to date.

Once again from the bottem of my heart THANK YOU for all your support and well wishes.

dave

in reply to uniboy20

Where's the "like" button when we need one! Good luck x

Dotty7 profile image
Dotty7

It's really good news that you have proactive and understanding doctors. It sounds like positive things are happening already.

I'm so sorry that you have had this extra blow. Having one serious disease is one too many, and getting another on top is so very unfair.

Will be thinking of you and wishing you well.

Dotty

bencar profile image
bencar

So sorry to hear your devastating news, you seem to have the right approach to dealing with it. My sister had bowel cancer and after 1 years is still going strong. She is still using the bag (couldn't be reversed) which has become part of her, and doesn't bother her too much now. My thoughts and prayers go out to you, hugs and xxxx

bencar profile image
bencar

sorry read 11 years instead of 1

uniboy20 profile image
uniboy20 in reply to bencar

thank you

Hi Dave thinking of you - i look forward to hear how you are getting on. Hope they get the pain relief sorted out for the ra as well.

uniboy20 profile image
uniboy20 in reply to

thank you

Shell1967 profile image
Shell1967

I'm so glad for you that you have a fab rheumo,how lovely to give you his mobile number,proves to me you are a very lovely person :))))lots do love and best wishes to you ave Michelle xx

Shell1967 profile image
Shell1967

Lots of love and best wishes to you dave is wot I meant lol, xx

uniboy20 profile image
uniboy20 in reply to Shell1967

thank you lol i do know what you mean lol

lisarob profile image
lisarob

I can only echo the thoughts of everyone else. Keep climbing the hill one small slow step at a time. Love and thoughts xxxx

uniboy20 profile image
uniboy20 in reply to lisarob

Thank you

uniboy20 profile image
uniboy20

Hi Guys, I cannot stree enoth how thankfull i am will all your well wishes and thank you's.

Well my surgery is planed for next friday. They are going to remove 30% of my bowel (alot more than they have said) and also my right kidney (they have found blood and protine). Ive still havent had any offers as of yet , so last chance before i put it on ebay!!!!l lol. So i will be having alot of diffrent doctors comming in to see me from diffrent departments. My wife is deverstated,but she is keeping busy with work (shes a primary teacher). but i just dont know how to tell my two children. ive just told them that daddys going into hospital for an operation (there 7 and 3). I wounder if there is a costa coffee place that i havent found yet, i know there is one next to the hospital, looks like the nurses will be doing a coffee run for me.

Anyway i willbe taking my laptop in to hospital with me so i can keep in contact with the outside world and far beond lol.

Once again thank you guys.

Shell1967 profile image
Shell1967

Morning dave,its very good your getting sorted so quickly,it must be very hard to tell the children,but do you have to tell them exactly what's happening or can u lighten it up so it doesn't seem such a big deal for them ? I am thinking of you all and yes defintly need to k ow how you are getting on whilst ur in there plse.send my best wishes to your wife as well dave,thinking of you love Michelle x

bencar profile image
bencar

Must be so hard for your wife too, she sounds like she is saying strong for you which must be very difficuly while coping with the children. Here's a big hug for her also, you stay positive and never lose your sense of humour (must be hard, but I'm sure your attitude will help). Please keep us up to date with your progress, hugs again,

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Uniboy20

I'm so sorry to hear of your diagnosis. As Allanah has pointed out there is an awful lot of information and support offered through Macmillan: macmillan.org.uk/HowWeCanHe...

And, of course, all the lovely people here on HU. I do hope things all go well next Friday.

Kind regards

Sarah Kate

NRAS

earthwitch profile image
earthwitch

Glad you have a date for the op, and that you can stay in touch with your laptop.

As far as how to tell the kids, ask the Macmillan folk about that - they usually have all sorts of information and booklets and stuff that is targetted at specific ages, so can tell you how to explain in a way that the kids know what is going on enough to make sense of it, but not too much that it worries them.

Hope you recover quickly from the op.

Josie2 profile image
Josie2

Just to say you are in my thoughts.

Take care and be strong.

Xxxxxxx

Dear Uni boy,

I am so sorry my own family is being affected by cancer at the moment too,

Please seek any advice and support you can my thoughts are with you x

It is a distressing time my dad has cancer too and has been waiting for five months after the news for the removal of his bladder due to cancer.

The news is devastating for any one and it is hard to deal with and you have a wife and two young children my thoughts are very much with you. Please dont do anything rash .

As Allanah says bowel cancer can be succesfully treated and they are moving quickly

Alison

allanah profile image
allanah

Good luck with your op, I will read about your recovery and hopefully be recovering after my spinal op too! Lots of luck and love Axx

Hello, I just read your blog, what can a stranger say to a human being in pain, as Hypnotherapist I can say your pain can be numbed with Hypno, the body is an amazing thing but when it comes to pain it does not know when to switch off the signals. Hypnosis, might be worth a try, I hope your mental sate increass for the better, and I wish you pease. awhile your alive that is LOL stay well.

Shaun.

Caza profile image
Caza

I hope all goes as well as it can on friday. How difficult for you having two very young children,what do you say,I have no words of widsom. Get well for them. Big hugs xx

uniboy20 profile image
uniboy20

hi guys, sorry i havent written anything as of yet, i took my children out for the week end and told them. to be frank i dont think my 3 year old took any notice. she never takes any notice. must take after her mommy lol.... i think my oldiest child whos 7 knows and i explaned it to him as much as i can. ive told him i will speek to him every night and that we will skype . (just hope my laptop will work in the hospital. ive just seen the kidney specalist today and he is going to start me on dyalist on saturday morning. i will have to have this done at least 3 times a week maybe 4, oh well it give me a chance to see what nurses are about lol. anyway ill keep you all informed as much as i can over the next couple of weeks. bye guys see ya all later lol.

Theresa profile image
Theresa

Dear Uniboy,

Be positive!

I can tell you an amazing story.

One of my sister was diagnosed with brest cancer 3 months after my mom died with same disease.

The oncologists told us (family) that with the cancer in such stage, normally they give a 5 years length of life.

Well, at the time her sons, my nephews of course were little, 11, 6 and 3 years old and my sister first answer to the doctors and us was "I cannot die until my sons can support themselves as men.

She's a fighter, she had quite a few operations and the last one was 4 years ago when they toke off one of her brests.

Now her sons are young men on their middle twenties, but she's here with us because now she cannot die without meet all her grand children.You know what?

I believe she will.

I admire my sister and when I think about her journey, in a way I feel ashamed when I complaint about my RA.

Remember that our mind is a very strong tool, use it. You can do it!

In no time you'll be here writing your blogs.

All the best.

:o)

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