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Beating Bowel Cancer Community

Life with bowel cancer

HopsiFAP

Feeling rather blue

Hey Everyone,

I just wanted to have a wee outlet for my emotions. I realise I’m so much more fortunate than many on here but I feel a bit weepy today. Most of the time I genuinely feel very positive but today I’m just feeling this is SO tough. I’m not on any active treatment right now ..waiting on liver biopsy results next week but after a pelvic extenerarion where I’ve basically lost everything down below I now have a permanent Ileostomy and urostomy. I’ve adjusted pretty well to be fair but I’m about 3 months on from having a whipple’s where I lost some of my small bowel too so it means that managing my ileostomy is tougher..

Anyway you know when you just have a moment where you have to recognise that actually yes I’m so glad to be alive and doing as much as I can but it’s ok to feel sorry for yourself every now and then and I know I can do it here and people understand. So thanks for being here and listensing. Means a lot.

Lots of love
Clare :x::x::x::x:

HopsiFAP

Ah I’m just back from the dentist and saw all my messages from @Polly @1234annie @robbiedoo62 @charleyb and @Lizalou .. thank you so much. It’s really cheered me up. I love my flowers @robbiedoo62 and hugs and love from everyone else. Lots of love to all you amazing and inspiring ladies too... and hugs and thanks to @Pam too :x::x::x::x:

Clancy

@HopsiFAP, you are perfectly entitled to feel any way you do and at any time. I admire your courage and all that you have been through. These cold dark days don't help either. Sending you big hugs. Keep in touch with us all.:x::x:

david watt

@HopsiFAP just been reading your profile, you have been through a lot. 15 hours of surgery is tough, I had 8 and thought that was a lot. Been a bit curious if I have a mild version of fap. Usually develops into cancer aged 35 to 40, check, I had 20 polyps on one side of colon before they got to the cancer which blocked path of camera. Since I have secondary cancer now they don't seem interested in doing any more tests.

HopsiFAP

Thanks so much @Clancy . You are right .. these cold grey days definitely affect how positive I feel. I wouldn’t say I’m affected by SAD or anything but somehow on a bright blue cold day I do feel so much better. I just had a bad morning with my stoma too. Sometimes I just don’t want to have to think so much.. i have to balance the stoma output so much and it sometimes gets me down but it’s still such early days and it will get easier. I know that. How are you doing? :x::x:

HopsiFAP

Hi @david watt Gosh you’ve been through so much. I am constantly humbled by the folk on here. I’m so sorry that you went back and forth so much to your GP with all these issues and it took them so long to diagnose. I can’t imagine how that feels.

Gosh yes it does sound like you could have AFAP ..I think it’s called? As you say, I was diagnosed at 45 which is actually really late. I spoke to a really nice lady at St Marks hospital last week. She’s a nurse who runs Polyposis Registry there. They deal with all genetic colorectal cancer patients and she is an expert on FAP. She thinks I probably had my tumour.. which was in my rectum .. although my surgeon thinks I had another one in my caecum by the time of surgery.. for 10 to 15 years. Are you on Twitter ? It’s worth sending her a message as that’s how I got her details as perhaps you could discuss your case with her if you do want to find out ?
How are you doing anyway ?

Clancy

Hi @HopsiFAP, No wonder you feel rather blue! What a roller coaster you have been on. It wasn't until I read your profile that I realised the true full extent of your surgery. You are also so young to have gone through all this. I caught your earlier post to David, your surgeon thinks you may have had your bowel tumour for 10-15 years, that is really scary.
I asked my surgeon how long mine had been there, he said 12-18 months, I think it had been there longer actually because it was already stage 4 when discovered. So then I asked if it is aggressive and he said no.
I am just waiting for a date for my 2nd liver resection in January. I was ok with the previous one a year ago and bowel surgery four months later. I feel a bit more dread with this one.
But compared to what you have gone through, I shall think before I start whinging. I do hope you are feeling better today. Sending hugs.:x::x:

david watt

@HopsiFAP
Ok I guess had 16th cycle of pembro this morning at hospital, have to wait another 9 weeks till next ctscan to see if it is still working or if I do now have a bone met on a rib.
There is also a group within colontown on facebook with FAP members, around 250 mostly americans. You could join by sending a friend request on facebook to Erika Hanson Brown.
I attached a picture of group, who post issues with FAP and children etc.
Best wishes David

Sele2017

You are perfectly entitled to feel that way! Reading at your profiles , you too have gone through a lot. I admire your courage. Sending you a big hug.💜

HopsiFAP

Thanks so much @Clancy yes I’m not sure if it was a tumour for that long but the nurse specialist I spoke to at the Polyposis Registry thought the polyps would have been there since my teenage years to my non diagnosed genetic mutation.
When I think about it like that then I actually feel incredibly lucky that it hadn’t developed any more. I was staged at T3 with no mets or nodes but it was in an really awkward place, hence the need for such drastic surgery.
You’ve been through so much so please feel free to whinge as much as you like. Waiting for surgery dates is always an anxious time and I can understand why you feel more anxious this time around because you have fresh memories of the pain and recovery I woukd imagine ? It’s only human to feel that way. I have at least one more operation left to remove my thyroid and will be anxious for that too.
Thanks so much for your support. I really appreciate it :x::x::x::x:

HopsiFAP

Hi @david watt Gosh that is hard going..
thanks so much for that. I am a member of two other FAP groups but I’ll request to become a member of that one too.
I hope you don’t feel too bad on this cycle of chemo.
Take care

HopsiFAP

@Sele2017 thank you. I hope you are doing ok? You’ve had such a tough time too so big hugs back :x::x::x:

HopsiFAP
Quote from @charleyb:
oh Clare @HopsiFAP you are totally entitled to feel any way you want!! you have been thru major major surgery and come out the other side, like others have said you are an inspiration!! Sending you the biggest virtual hug

Hi @charleyb how are you guys? I hope recovery is going well for Charlie?
Just to let you know that liver spots are benign .. phew !,
Seeing Mr Rasheed tomorrow so will see when he wants to scan me next. Will be good to have a check in with him. Anyway lots of love :x::x::x:

charleyb

Oh my word that is amazing news @HopsiFAP !!!! i am so very happy for you!!
This pic is my hub at the weekend, hes doing so so well!! We have had MRI and CT scan so as long as clear we go forward to bowel resection in new year, get the results next monday xxx

Globerry

Hi@HopsiFAP you are entitled to have a blue day.I have read your profile and understand that you have been through so much.I get where you are coming from when the ileostomy starts playing up I too feel really low.Are you taking Loperamide if not they will really help.Sending you a big hug 💞:x::x:

HopsiFAP

@charleyb Ah that’s too cute ❤️❤️❤️ He is looking so well! I’ll keep my fingers crossed that the scan results are good to go for bowel resection in Jan. let me know?
Thank you. I’m so relieved and feel like I can start to look forward again .. maybe a wee holiday in Jan ! :x::x::x:

charleyb

Definitely a wee holiday!!! Get booking, and now you can have a lovely xmas, i`m so very pleased for you :x::x:

HopsiFAP

Hi @Globerry thanks so much. Yes I do and it does help. The problem is that the whipple operation I had in September has changed its behaviour so it can go even more mental.. but I did run into one of my stoma nurses at the Marsden today and she reassured me that my stoma is reacting as they would expect to the op. Hopefully it will calm down after a while. It’s at night that’s it at most bothersome as I have to get up 2 or 3 times I have to get up to empty it and that’s after a good few loperamide before bed. How long have you had your ileostomy? :x::x:

Sparrow

Dear @HopsiFAP, as others have said, you are a star 🌟 and have been through so much, you are entitled to feel weepy and blue! Sending much love and hugs :x::x::x:

Sparrow

@charleyb, great pic of your hubby and kiddos! What cuties!! (All of them)
Thanks for sharing :x::x::x:

Globerry

Hi HopsiFAP I have my ileostomy since August 2017 it's temporary a reversal should take place next spring.I am glad you have had reassurance that your is acting as it should at this stage.It must be very trying being up a few times in the night.Glad you are taking Loperamide it helps to slow things down a bit.Good luck thanks for sharing your journey :x::x::x: