Stage 4 bowel cancer

Fighting4hubs

The day has arrived HIPEC & All that comes with

Good evening all!
I’m afraid I don’t get much chance to come on here like I used to - having a now 4 year old and 4 month old can keep you very busy indeed!
On my last update we were waiting for Chris to have a Laparoscopy to access the extent of disease into The peritoneum and Omentum.
That procedure took place in a London on tuesday and I was overwhelmed to receive the call from the surgeon to say based on what he had seen, the cancer spread still appeared to be low volume and he was happy to proceed with HIPEC and cytoreductive surgery!!
So.... I write this message with the bags packed for the four of us, it’s quite an overwhelming feeling to be once again splitting us all up whilst Chris has another major Op!
Our eldest is going to her Grandparents to keep her usual routine of nursery and balle/swim clubs and our 4 month old is coming to London with me as I’m still feeding her!
The juggling begins as we have been told Chris won’t be allowed near her for 4-5 days, so my brother is coming to London to have her in nearby hotels and go for walks etc ... and I will split myself between her and the hospital when she needs feeding!
We have been open and honest with our 4 year old and she has become somewhat excited after watching Dr Ranj on CBeebies and his program “Get well soon” she thinks daddy is going to his hospital to have his tummy fixed there by him!
It’s been so good for Chris to have this positivity from her and the hope that she will be able to visit when he is well enough and on a ward, something we didn’t do back in April when he was in the Marsden.
So here goes, into the unknown ... Chris had An Illius with the previous surgery (bowel Resection) and was so poorly! His bowel has already been lazy post laparoscopy on Tuesday, so I hope and pray the same doesn’t happen again!
I am so so grateful for this surgery, but so scared of what they may find or all the other possibles... I don’t really know too much about it all other than the procedure etc, so anyone who has had this done. Please please, any advise would be welcomed!
Please keep us in your thoughts and prayers over the next weeks, I’m feeling so overwhelmed right now as I write this!
Chris is quite calm and positive about the surgery and I certainly don’t want to bring him down, I just Want to continue to hold the family together, (even though we’re far apart) and not let Chris get upset about goodbyes (which seems to be what he’s most emotional about!)
We have lived an amazing 10’months around Cancer and have found a way to enjoy the girls and block it out as much as possible, that’s credit to Chris who has continued to work through chemo and be so positive!!!
He doesn’t read anything , google anything, know anything about his cancer & that’s the best way!
I on the other hand have read everything that I can possibly find, but that’s my way of dealing with it and hope that somehow that’s lead us to this surgery and the hope of good outcomes and long term remission!
Anyways, thank you for listening and all the support on this wonderful site! Thank you for letting me vent and air my feelings this evening !
Love to you all x x x
Sarah, Chris and our beautiful girls x x

Ange1974

Gorgeous picture :x::x::x:

HH79

Hi @Fighting4hubs we are thinking of you all and hope everything getting a bit better each day now lots of love :x::x:

Gary not Gavin

Thinking of you all, carry on being the loving considerate compassionate and thoughtful person to have by his side and wishing a speedy recovery.
For me the tonix was having my wife at my side who sounds just like you, your inspirational and should receive medals
Gavin :x:

GD62

Hi @Fighting4hubs hope you are both doing well and remember not to overdo things yourself, Chris will recover well without over burdening yourself. Remember to give each other space too.

Hugs and positive healing thoughts :x:

HH79

Hi @Fighting4hubs thinking of you and wondered how things are going, lots love :x::x:

Fighting4hubs

Good evening all.... apologies for my late reply! Life’s just been soooo frantic!
So an update for you all and some advice if possible please .... Chris remained in hospital for exactly 2 weeks and the lazy bowel that wouldn’t wake up went completely crazy the opposite way and he ended up needing to take Imodium regularly to prevent diorrhea and dehydration! Safe to say he got pretty poorly with the dehydration!!!
We have now been home exactly a week and he’s doing well!
He has a few niggly complications to overcome, he has developed a somewhat large hernia underneath the scar, and has also got a urine infection from the stents they placed in the kidneys!! He’s been struggling to come to terms with Cancer and it’s almost as if his body and mind has suddenly realised (after 10 months) he has an aggressive cancer! I ended up getting a councillor to come and see him as he was struggling and tearful most days, but couldn’t pin point what or why!
We go back to the hospital for a check up Thursday and then back to the Marsden Friday for a CT and Pet scan, followed by an appointment with the oncologist Monday to discuss what’s next! I believe they are thinking he may need to continue on Cetuximab or indeed do another 6 rounds of chemo!!! (Something which he is horrified by!)
We’re both feeling so strange at the moment - we focused on the 12 rounds of chemo and the response to get a possible go ahead for HIPEC, now he’s had the HIPEC..... what’s next?? We feel a bit lost and a bit unsure of where we go from here.... we know signet ring cell is so very aggressive and needs constant monitoring and aggressive treatment - the stats are shit! But so far, this complete warrior has defied all the odds!!
We also need to remember he’s battled and beat the testicular cancer too!
Anyways if anyone can advice on the Hernia, or indeed the kidney stents etc....?!
Chris also has an illiostomey now (something which he’s finding harder to manage) but I’ve have some great tips from @charleyb on foods etc!
Chris has an area around the stoma where there is ripples in his skin and he’s finding the bags won’t stick, and keep leaking! his stoma nurse has been wonderful and has built up this wasted away skin with special putty, but poor Chris, it’s anorher thing he’s worried about!
Anyways, we’re gojnf strong ?? - hears to the next step and getting those family days our back! And maybe even a holiday (my first ask to the oncologist after we discuss the results!)
We do now know there was a small scratch of cancer on the small bowel and we have been told this was the size of the nib of a pen! But is all scraped away and has been washed with hot chemo!
Love to you all and thank you for the ongoing support!
Sarah, Chris, And the girls
X x x x

ruthy

Hi @Fighting4hubs, I'm glad Chris is home and recovering. I had a stoma for a while and it took some weeks to get used to but got much easier once I had found the products that worked for me and how to use them.

I hope Chris feels emotionally stronger soon. Having a general anesthetic can trigger depression, particuarly after long operations. A friend of mine had this a couple of years ago, and didn't get help untill she was in a very dark place (but is now doing ok after talking therapies and anti depressants). It sounds like you are proactive having arranged counselling already, but I thought I should mention it as it isn't widely known about.

mariacm

Ureteral stents can cause irritation. If they do, even after any infection has cleared, it is worth talking about alpha blockers to help with doctor. David tried two types before getting the ones that helped him.

Hard when there has been one focus in life (getting through HIPEC). All of a sudden things can feel lost and directionless without this all-consuming goal. Then the realisation on too that normal chemo continuing so fight is not yet necessarily ‘over’.

Would second the comment about general anaethesia plus all the chemo. I know a few people who have benefited from long term counselling and support after cancer and receiving the ‘all clear’. Longer levels of support and counselling than you might think. One chap I know is still having counselling 5 years later. Do you have an official ‘family support’ person to talk to as well? I love talking to mine. I blurt out things I didn’t even know I wanted to say and she helps me rationalise my thoughts. I would never have put myself down as someone who would benefit as I normally find that sort of thing completely annoying but both the Macmillan family support people I’ve seen here have been great.

I wish you both, and your children, all the best and all the luck in the world.

:x::x:

mariacm

(Maybe bags with an increased ‘sticky’ area for the time being? A high output one perhaps? I think their ‘sticky area’ is bigger)

Gary not Gavin

Cannot offer any advice apart from carry on doing what your doing....being a great person who cares so much and is trying to do everthing. Make sure you make some me time xxx your great :x::x:

charleyb

You are doing brill @Fighting4hubs le me know how you get on with scans and at the Marsden!
I promise all of a sudden your output will just settle, but it did take a month or so for Charlies. Keep going with the stodgy, white food!
Loads of love :x::x::x::x:

Baxter2

Great to read your update @Fighting4hubs and that Chris is now home after only two weeks! I was in just over a month after CRS and HIPEC! ? Well done to you all! I hope he continues to improve and build his strength.

Lots of love,

K????❤️

Lizalou

Sending loads of encouragement and best wishes to you both @Fighting4hubs . As the others say, this is a very tricky time and it is hardly surprising that Chris feels so fed up. Hopefully with time and counselling things will seem a bit more manageable. :x::x:

LABluebell

@Fighting4hubs What beautiful pictures! Be proud of yourself for the love and support you're giving Chris and all your family and look forward to many, many good times ahead together. :x::x::x:

Daffodil

Well done all of you! And what gorgeous photos.
Love and hugs :x::x:

mem

Beautiful pictures of a courageous family @Fighting4hubs! :x::x:

Trinity

Lovely pictures of a couragageous lady & her lovely family :x::x:

Fighting4hubs

So ..... I write with crazy news form our end, we went to see the professor after HIPEC to see the next plan and in the hope the cancer was at bay, we had some mixed results.... the cancer in the peritoneum appears to be at bay for the moment following the HIPEC surgery with no disease elsewhere, but they threw us a bit of a curve ball... there is a 9mm suspicious legion been found in the liver in section 4a and they believe this to be either a cyst or cancer spread! We are of course devastated if it is more cancer and will fight it any which way we can, the mri has been pulled forwards as I did my usual and kicked off for something ASAP! There is a chance it could be a cyst but the chances are very slim given Chris’s aggressive cancer! Chris is reluctant everyone knowing until we know for sure and have a new plan of action!! I just wanted to ask more about the liver - this is all new to me and I’ve no idea where to start ! I asked about surgery but they were reluctant as he’s had two
Major procedures in less than a year! They mentioned Ablation but I believe this isn’t a curative option and just to keep it from getting bigger... I know there is SIRT our there, would anyone be able to share and tell me more? Also I think there is something called cyberknife ? Thank you for reading and hope you don’t mind me asking you all! Lots of love to you all
:x: :x: :x:

mariacm

So sorry to hear this. No advice but will keep everything crossed for you. Hopefully if it is it will be removable.

Thinking of you all

:x::x::x: