Newly diagnosed

.  Hello and welcome,  so sorry you find yourself here but glad you have, you will find lots of support and advice.   

I was in a very similar situation to you in November although I'm a fair bit older (46), with 2 young boys.  I have secondary spread to the liver.  I remember sitting in waiting rooms thinking I can't believe I'm sitting here, it takes a while for it to sink in.

You will feel better when you have a treatment plan in place and feel like you are actually doing something.  I've been on chemo since diagnosis which has actually achieved significant shrinkage.

The main thing is stay off Google, ask anything on here or the bowel cancer uk forum.  The data on Google is out of date.

You are young and healthy, get some good nutrients in you and exercise if you can ready to kick its ass.

Best wishes, Michelle. Xx

Hi Michelle,

Thank you for your reply, sorry to hear of your news, I’m glad you are doing well with your Chemo. Do you have much side effects to that? Did you loose your hair how do you manage your boys and your diagnoses? I’m so worried I won’t be able to be a mum once treatment starts. Did they say they would operate on your liver as an option ? Sorry for all the questions x

• No worries, ask away!  The side effects for me weren't too bad, I didn't feel any different on the first couple of cycles but it is cumulative.  It depends which regime you will be on, I had folforinox and the main thing was sensitivity to the cold, I kept some gloves by the freezer, it's a bit like pins and needles but it soon goes when your hands warm up (a hot water bottle is handy).  I also got indigestion, slight nausea, insomnia and constipation. All of which were very well managed with meds.  The chemo nurses and my onc are lovely, don't suffer with any symptoms, just let them know and they will prescribe something to help.

I had this regime for 12 cycles then one of the chemo drugs was dropped and I started on cetuximab which mainly affects the skin.

All the way through I have managed to carry on. My boys are 7 and 3, I've done the majority of school runs (other half chips in on the couple of days straight after treatment) and I've had the little one all day! Some days are hard with feeling tired but the kids keep me going.  In fact, they don't even know I've got cancer!

As for the hair, it has thinned a lot but not completely gone, I still have hair on the top of my head so can get away with a cap without anyone noticing. 

I'm hoping for a liver op, am just waiting to hear back from a referral, fingers crossed.

Xx

Hi 

You have great input already so I will just welcome you to the forum ! What a shock for you . If you click on my user name you can read how my mum navigated a stage 4 diagnosis with a significant spread to the liver ! My mum has seen off over ten liver mets over two years ! I am not going to pretend to understand the maths but as long as a persons chemo responsive the large tumours can work well with chemotherapy due to the rate of cell devision . That’s roughly how it was explained to us ! The scans backed that up as she too had significant shrinkage ! 
My mum was way older than you , but managed through two years of intense treatment ! Say “yes” to all the help you can get ! You are a statistic of ONE as only your response matters to you ! Therein lies the hope . My mum is twelve years post diagnosis! 

A few of us have fallen down the Dr Google trap ! Definitely filter what you read as you have to look at the context , date and sample size of a lot of information. For instance back when my mum was diagnosed there was less options available for treating bowel cancer , a less aggressive surgical approach and stats are all gathered five years behind so very much a rear view mirror . Some of the new treatments for Immunotherapy should also impact stats going forward ! They are very cautious in the beginning but once they get a better feeling of how you respond things can start to change !

It took a few years to manage the spread in my mum’s liver and a few knocks along the way but each time there was less tumour burden in the liver . Slowly knocked back with each cycle ! Then a surgical option opened for her . You will see others on the boards who are well into their fifth and sixth year of treatment using chemotherapy! They are still living good productive lives . 
But you are in a very difficult stage just being diagnosed and we are here to help strengthen and support you .

Do you manage any exercise at the moment?

Take care ,

Court 

Hi AmandaR1987 

Just wanted to say hi. Being diagnosed with cancer is horrible but once you know what's what and you have a treatment plan in place, it really will feel a bit easier. It's completely understandable to feel upset, overwhelmed and anxious. It's such a scary time. You have to give yourself some time to process it all. You'll have a great team around you who'll be there to support you and your family. As Star74 has said, stay away from Google. Stay on here, bowelcancer.org.uk is another great site. There are lots of positive and inspirational stories on there. I've had surgery and chemo. Before my surgery, I used to lay in bed at night and for about 2 weeks, would have a 5 minute cry. Then I'd say out loud "cancer can **** off" , this is now my daily mantra. Sorry if this has offended anyone. I then decided I was going to put my big girl pants on even if I was crying at the same time. I know this is horrendous for you especially with having young children. Bowel cancer can be treatable and curable. It's going to be tough but you can do it. 

Cheryl x

Thank you for this  I was diagnosed last week and it's really hard just to get by each day. X

Hi  and a warm welcome to the board from me. You’ve had some great replies so I’ll just pop a link to this booklet from the Bowel Cancer UK site which is aimed at young people who’ve just been diagnosed

https://bowelcancerorguk.s3.amazonaws.com/Publications/YoungPersonsGuide_BowelCancerUK.pdf

Take care

Karen x

Welcome 

Just want to reach out to you and let you know there is a wealth of support and information here for you to assist you over the very difficult first few weeks !

We also have helpline Staff 0808 808 0000 employed by Macmillan who would be happy to chat any aspect through from the emotional , clinical to the financial. They are completely confidential.

There is always someone around here most days to pick each other up when it feels overwhelming!

A very recent diagnosis for you ! Do you have scans lined up ? 
Take care ,

Court 

I had  ct and mri awaiting news.

Feel tired alot and not sure if this normal, they say my cancer is in early stage. I'm 65 but so scared.

Hi . Its natural to be scared especially when it’s a cancer that’s not talked about so much - I knew lots of people who’d had breast cancer but no one at the time who’d had bowel cancer. The waiting for scan results and meetings is very stressful but once you have a plan in place then things will honestly feel a bit better. Bowel cancer is notoriously slow growing but very treatable especially if caught early.

You're probably not sleeping very well and feeling very anxious but try to do a little exercise each day even if it’s just a little walk. I had my treatment in 2016 and I’m still cancer free as are the 2 ladies that I became close friends with at the time.

There will be a tough few months ahead but everyone on the board will be happy to support you and help you through it

Take care

Karen x