Bowel / Colorectal Cancer

[ES]

Hi, I'm new here and would love to hear from anyone who has , or has had, bowel cancel. Thankyou.

[Katekat]

Hello and welcome to the Community @ES!

How are you doing today?

There are definitely other people here who have had or are living with bowel cancer. Would anyone like to offer any words of insight to ES?

[edie]

Hi ES

Can you tell us a bit more about your situation?

I was diagnosed with bowel cancer 6 years ago, I had surgery and luckily didnt need any other treatment.  Since the surgery I have been doing really well without any ongoing problems - so long as I dont eat too many nuts or curries!

[ES]

Hi Edie,

Sure.......

I was diagnosed last year with stage 4 bowel cancer. Perforated tumour, surgery, 6mths chemo which ended in Nov last year, have now got severe peripheral neuropathy no proprioception awareness of hands and feet, but otherwise chemo went well. Then suddenly CEA markers went up in March and tumours have returned . Laparoscopy, colonoscopy and histeroscopy due in two weeks time to see what my pci readings are. If low, then I'm scheduled for the Peritonectomy /hipec op. They'll also take care of the large hernia resulting from last bowel/tumour op.

Lol, love the nuts and curries comment.

[Morenike]

Hi there, this is my 3rd bowel cancer diagnosis

2016 I was diagnosed the tumour had burst through and I was in excruciating pain which was how it was found I had surgery and then followed by 6minths chemo. Follow up scan in jan 17 showed the tumour had been growing in my pelvic cavity during chemo it was inoperable on the GC so I went to peter Mac in Melbourne. I had 6weeks radiation then followed by another surgery, I responded so well to radiation it was a miracle. I needed a temporary colostomy bag which was reversed in nov17. Then jan18 follow up scan shows tumour is back again now. I chance of surgery but trying chemo again and after chemo heading Back to peter Mac to try something called cyber knife

[Roselee]

Hi

Yes you are now in my club of Bowel Cancer.  Its a horrible club to be in but there is lots of support out there.

I have been battling for the past 6 years and yes its draining and your life certainly does change, sadly.

I am not the norm though as everything that should work hasn't for me, and my specialist team of 6 can't explain me medically.  It has come back every 12 months requiring both surgery and chemo.  Surgery is no longer an option for me and my chemo is no longer working.  I have been on fortnighlty chemo for the last 18 months.  Its been hard but the alternative is out of the question.  I have just now been offered to have Radiation to try and make the tumour go back to sleep (not active) as they say so fingers crossed.  Its scary as i have never had it but sometimes we all have to be brave, put our big girl knickers on, and take the plunge.  My team say they also can't explain how i am now.  I was told that 18 months ago when i received my Terminal diagnosis, that now they would not think that i should look healthy and I do, my bloodwork is that of a normal healthy person and it shouldn't be, and that they would have thought that by now I would not be working at all and I am working 4 days a week.  The only thing i can say is that I have the most positive of attitudes and a shear determination that this bastered of a thing isn't going to stop me.  I truly believe that a positive strong attitude goes a long long way.  Be strong. Be a fighter. And dont think for a minute that this horrible thing can stop  you.  Its just a bump in the road.  I say this to myself each time it comes back.  Take care you strong woman.  Roselee

[Morenike]

Hi Roselee how are you doing today? Hope you are ok. Which hospital are you doing your checks? You know sometimes it’s a good idea to get a second opinion that’s what saved me. 

The second time I was diagnosed of my fiancé had said he wasn’t going to accept what the said and did some research, I wouldn’t be here. So now I have a medical team on the Gold Coast and another team at the Peter Macallan centre in Melbourne.

[Roselee]

Hi

Im at the Mater.  I am really happy with my team there.  My surgeon is the only one in Qld who does the type of surgery i needed and my oncologist is very high in his field.  I researched the hell out of chosing an ocologist and i landed on a great one.  I guess I have had my team for the last 6 years, and i put all my faith in them - right or wrong.  I feel so comfortable with them and i think that goes a long way.  I don't feel like a number.  I am so glad to hear you have found a good team, as its important to have that connection. 

I so hope you get the desired results from them.

Hugs

Roselee

[Morenike]

Hiya am so glad you have a great team and you are happy with them. Same here it’s so nice when you don’t feel like a number. Am so sorry you are going through this is such a struggle. 6 bloody years. I have been battling mine for 3 years now. It’s like how much more. What treatment are you doing now? I just finished radiation this is my second time for rad and it’s also the last I can have. I have an appointment next week to see oncology so fingers crossed. 

Hows your day today? 

[Roselee]

I'm not 100% sure of what i will do next.  My oncologist has given me 2 weeks of chemo which i am so grateful for.  After 18 months worth of chemo every 2 weeks i'm glad for the break.  I have another chemo option but it will make me lose my hair which i'm not too happy about or Radiation.  I haven't had it before and have no idea what to expect.  I am meeting with the Radiation Ocologist shortly to get the run down and then i can decide which treament course i will take.  Both options are pretty crappy really but I need to choose one i guess.  After 6 years its hard to imagine life without treatment.  Hopefully your 3 years worth of fighting will pay off.  Its such a horrible thing and no one can understand unless they have experienced it.  I only take advice from people that have sadly had cancer as they are really the only ones who can understand even just a bit of what is happening and how we feel.  Sometimes friends and family try to give advice but they really have no idea.  Its nice that they are there for support though.

Hugs

Roselee