Stage 4 bowel cancer

Wren17

Taking a leap of faith Updated 6th September

Hello all, thank you for your kind words and support since i started my journey last April 2017. I have been deemed both incurable and inoperable. I have been on a gruelling 2-weekly chemo cycle for 9 months which has left me hospitalised on many occasions.
However, despite several rejections for hipec including from the Christies I have now been offered surgery with the potential of hipec. Basically im being opened up to see if hipec is possible and if so they will perform it there and then and if not they will close me up again. However, i have been advised that i could potentially end up with a worse prognosis after surgery than before. However, im hoping that the surgery will give a positive outcome with hipec and give me a few years instead of months. As a single parent i need to be around for as long as possible for my children and really hope this surgery will give me this.
Ill have surgery at the end of next week and hope my gamble and leap of faith leave me with a better prognosis after surgery than the one i have been afforded before surgery.
I am scared but trying to be brave and above all hoping that all works out . I would welcome any encouragement and positivity. Thank you

UPDATE: Operation has been bought forward to this Thursday 17th May. Very much in shock as was hoping to spend some more quality time with my children. Instead start the dreaded prep tomorrow and Admission 7am Thursday - mind gone blank which i dont know is a good or bad thing . What is worse is that i have also found out that both my children under age for the wards and ICU's visiting rules so dont know how ill or they will cope as its just been me and my children for last 7 years. Didnt think anything could feel worse than op but hopefully facetime might be the answer reception pending
:x::x::x:
Update 6th June
Just to let you all know that I am home now and on slow path of recovery. Really struggling with keeping anything down.
Will not know outcome until 6 weeks so got everything crossed .
I would like to thank @HH79 for updating you all whilst i was in hospital and most importantly can i say i am truly amazed and most humbled by all your messages of support. Your are such a wonderful forum of people and i cannot express my gratitude enough for all your kind words and encouragement. Thank you all :x::x::x:

Wren17

Thank you both @mem and CD1966 and hope your brother feels better soon :x::x:

GD62

Hi @Wren17 Hope you get well soon xxx :)

Salgal

Hi @Wren17 really hope you get well soon big hugs :x::x::x:

Bridget55

Hi @Wren17 hope the infection ha# now cleared and you are out and about. Fingers crossed :x::x:

Wren17

Hi@Bridget55, the infection has finally cleared thank you. Struggling at the moment with back pain and waiting to get results from mri scan. Hope you are keeping well :x::x:

Baxter2

That's so good to hear @Wren17!

I hope you're not feeling too disheartened and remember it takes about 6 months to recover from the surgery you've had. It did take me a full 5 months to feel pretty normal again!

Keep up the good work and best wishes for your mri Scan results!

Loads of love,

K💚💛💜💙❤️

Wren17

Update: Thank you all for your support through my journey.
I had my CT scan results on Tuesday, unfortunately they show reoccurrence in two new lymph nodes in two different areas. To be honest I was devastated with the news as I really hoped HIPEC would get me to NED even if it was going to be for a short period of time. However, guess we just have to plough on. The oncologist has suggested she will speak to surgeon about potential surgery and also ask about radiotherapy as next treatment option and will let me know the plan in 4 weeks time.
Thank you all for your continued support, helps to carry on the battle :x::x:

Liriodendron345

Oh so sorry to hear this @Wren17. I totally understand your devastation but your Oncologist is clearly on a mission on your behalf which is great news. Take very good care, Kim :x::x:

determinedjoan

Oh how disappointing for you Wren 17; after all you've been through in recent months. Hang on in there; very pleased to know that your Oncologist is on the case. How are you and your children coping with everything ? do you have any family/friends who can give you a hand ? Do you have a Macmillan Buddies scheme where you live who can offer a few hours help a week over a period of 12 weeks ? Thinking of you and sending love, hugs and healing vibes :x:

HH79

Hiya @Wren17 .... I know we’ve chatted but just to add you’ve been so amazing and hipec recovery will get better. Just think hurrah those nasty Peri mets that weren’t responding to chemo have gone! Out! Done! And hipec will be giving more time I’m sure. Fingers crossed on the SABR do keep eye for Oxford Churchill if nothing comes Birmingham. My lymphs too scattered for but if couple isolated & less than 3cm am sure all a go. Lots love :x::x:

Tiffany

@Wren17

Really sorry to read this news tonight. I'd feel devastated too - after all you have been through. However, looking at the positive side - it is two lymph nodes and hopefully they can be removed and you can take that step forward again. You have shown so much resilience so keep up your positivity. You've done it before and you will again. Thinking of you. Tiffany :x:

GD62

Hello @Wren so very sorry to read your post and hope oncologist can sort out a plan. Hugs and positive healing :x:

Bridget55

Hi @Wren17. I think you did the right thing by seizing every possible opportunity to de risk recurrence. You should be satisfied you have given it your best shot.You have proved to be resilient and that is your Allie. Resilience. Disappointing after the long recovery to get those results but stay positive as it looks like the surgeon and onc are all fighting your corner. Fingers crossed for a plan of action you are comfortable with and enjoy these coming weeks Bridget :x::x::x:

Baxter2

Hiya @Wren17

I can relate to your dissapontment in the results of your last scan showing the nasties are putting up a good fight........but so are you and we won't be beaten will we?!

I remember the devastation my husband and I felt when I had a baseline scan only 3 months after my CRS/HIPEC and it showed 4 new little liver mets growing in my newly resected liver 5 months previously. (I had been on a 6 month chemo break for surgery to take place) I was so very upset as I had such a long recovery following HIPEC because of a twisted bile duct and stomach, urinary issues and my wound had not yet even healed! I really thought then that it was determined to kill me! Anyway, I gathered strength as we all do and onwards I moved! I had a liver mri and discussion with surgeon and it was thought ablation may be the best way forward. I started back on chemo and to my delight, the mets reduced at each 3 monthly scan to the point where only one little lesion <4mm remained.

It sounds like there are plans ahead for you too and please don't feel too downbeat. I'm here 18 months down the line and feel great! No pain whatsoever, bile duct and stomach untwisted!, no urinary issues or nausea etc. My chemo continues and I'm extremely grateful for that. I only have the usual fatigue at times and expected chemo side effects. Hang on in there! You're making great progress and things will improve all the time I'm certain!

Sending loads of love and my very best wishes

Karen💜💛💚💙❤️

Clancy

Hi @Wren17, can I echo what @Baxter2 has said, please take heart that there will be a plan for you. I too have had 2 recurrences in the liver and only 2/3 months post op. I used to nag about mop up chemo, and still do, but never got it. My liver surgeon will not operate as I have retro perineal lymph node involvement now, so more chemo and possibly SABR/RFA. It is utterly devastating when the cancer reappears but because we don’t have a choice, we face it head on. I felt it was worse than original diagnosis, do you?
You have the added worry of having young children and your mind must be in turmoil. I cannot possibly relate to that, and wouldn’t try to. Mine are all grown and flown. Just take comfort that we are all here for you. Sending love to you.:x::x:

Lizalou

Thinking of you @Wren17
This bowel cancer business is so relentless and unremitting, there never seems to be a decent break, so it is very hard to keep positive. Hugs and lots of sympathy. :x::x:

Wren17

Thank you @Liriodendron345, @determinedjoan, @HH79, @Tiffany, @GD62, @Bridget55, @Baxter2, @Clancy and @Lizalou
I think i was more devastated this time round because I had such an uphill battle to get the surgeon to agree to the HIPEC first time around.
However, you are all right we are not going to stop fighting our battle and there is always hope.
Thank you all for your kind words, it really means a lot to have such wonderful people looking out for each other :x::x::x: