Hi Beaumont44, 

I just wanted to say we are thinking of you during this stressful time. I guess the MDT meeting was today and I hope that you get an appointment soon to find out exactly what is going on. It's completely normal to be scared when dealing with all this uncertainty at the moment and after having been through all these tests. 

Let us know what you find out - you are not alone though and many members of our community have been through this before and will hopefully come and say hello soon and share their stories with you. While you are waiting, as there is nothing harder than waiting for a diagnosis, I thought I would share with you our helpful tips to help you cope while waiting for news. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thankyou for your response , nothing today but hoping a phonecall in the morning x

Good morning how are you and your daughter doing? My appt got changed to tomorrow at 10.30, im really anxious now as I know I can't put the stoma out of my mind anymore , I've tried to forget about it and noone spoke to me about it so I'm just googling and getting myself down about it , see what tomorrow brings...same as usual no choice sending love xxx

Morning yes we are ok.  My daughter has no chemo now till the 27 December.  Yes I understand you being anxious I am also about the stoma bag, scares me ti be honest.  Please let me know how things go xx

Hi there, did they tell you before your chemo that when you have your surgery there may be a chance you could need a stoma bag? It doesn’t always happen but if it does it may only be temporary. I know it is really worrying before appointments but try and stay positive you have come this far with great results. I have my pre chemotherapy assessment tomorrow and then chemotherapy on Thursday morning. I am the same feeling so anxious because I have been reading about all the side effects that I could possibly get. But I know I need to get through this to then have the surgery. Thinking of you.xx

Hi yeah there was talk of stoma but at the time I hadn't started chemo so I didn't want to think that far ahead, just thought get through chemo then deal with what comes next , I sort of think it's a definite with it being rectal cancer , yeah I've read about reversal too , im sure all will become more clear tomorrow , I had chemo through i.v. for 2 hrs then 2 wks of capecitabine tabs then a week off , it wasn't as bad as I imagined it would be neuropathy and taking the tablets was the worst part for me , what chemo are you having ? I hope all goes well for you , I do tend to read on here that nothing is as bad as the waiting, hopefully you will feel less anxious when you get going , I know I def did ..sending love xx

I am having Oxaliplatin and Folinic acid. I had a picc line fitted last Thursday and will have an infusion started at hospital for between 2-4hrs then I can go home and the infusion will run for 48 hrs then then the district nurse will come in on Saturday and disconnect it. This will happen every two weeks for three months. Hopefully by then the tumour has shrunk enough to be removed, if not they said I will have 1 week old 5 ten minute sessions of radiotherapy but only if needed. Then surgery for bowel tumour and I will need a second operation for a tiny spot on my liver to be resectioned. I will have to get the second operation in Edinburgh royal as the liver specialists are there.So if I need to have a temporary stoma and if it saves my life then I would do anything. The list of side effects of the chemo that the oncologist told me about were scary. Please let me know how you get on tomorrow. Sending you hugs xxx

Hi my daughter is having the same treatment as you.  She has 6 in total, 2 more to go.  Scans on the 20 January, line you if the tumour has not shrunk enough then radiotherapy. My daughter is only 26 x

That is so young and she has a little girl, that must be so difficult for her. I’m sure with you being there with her through all of this will keep her strong and positive. I think we all must stay positive as this is what will get us through it. I am dreading the chemo but it need to be done. I think when the oncologist said I was high risk because of brain aneurysms and atrial fibrillation and one of the side effects is blood clots. But I don’t want to think of what if and keep focused that the treatment will work. How is your daughter with treatment so far? Thinking of you and your daughter. xx

They had to reduce the dose as thd first 2rounds just wiped her out, she has coped much better since they lowered the dose. She is anxious about the scans, just hope the chemo has done enough x

I am glad they have reduced mine to two also, I’m glad as really dont think I would have managed three with my allergies. I think everyone would feel the same after chemo. Xx

Hi my head is all over since meeting consultant today, so basically the tumour has shrunk , so I'm facing surgery in about 4 wks il get a date in next couple of days , because cant tell how far up the tumour is I will end up with a temporary stoma if they can save my rectum if not il have it all removed and a permanent one ! Surgery is 5 ish hrs with 5 to 10 days in hospital the 6 weeks of no lifting driving etc ..then another 3 months off work to recover! Just had call for pre assessment in the morning xx

Hi my head is all over since meeting consultant today, so basically the tumour has shrunk , so I'm facing surgery in about 4 wks il get a date in next couple of days , because cant tell how far up the tumour is I will end up with a temporary stoma if they can save my rectum if not il have it all removed and a permanent one ! Surgery is 5 ish hrs with 5 to 10 days in hospital the 6 weeks of no lifting driving etc ..then another 3 months off work to recover! Just had call for pre assessment in the morning xx

Hi I can understand why your head must be all over the place it’s a lot to take in. They don’t know how far up the tumour is so you know you may need a temporary stoma or a permanent one. I know someone who had bowel cancer eight years ago and had to have a permanent stoma, but he is living a healthy cancer free life and said that it’s not his choice to have it but it has given him his life back. Please try and stay positive. Sending you hugs xxx

Bless you yes lots to take in and very over whelming.  Be positive unfortunately these things are out of our hands.  They will look after you.  Take care lots of love xx

Hi how are you and your daughter ? I've got op date for 7th ! Got lots to do 2 days before to get ready for it , it's daunting not knowing what I'm facing until I wake up ! Hope you all have a good Christmas..sending lots of love xx

Hi yes all good.  Wow all happening so quickly.  It is very daunting I am feeling anxious about my daughter’s scans and surgery.  It’s major surgery I guess? I just don’t know how she will manage after surgery with looking after willow.  I will need to take time off work to help.  I worry about the stoma bag, will she cope.  She has her 5th round of chemo on the 27 December final one on the 10th January.  You have a lovely Christmas, I will be thinking of you on the 7th.  Lots of love xx

Hi I’m glad you have a date for your operation. It is all very daunting but these surgeons are amazing at what they do. I will be thinking of you on the 7th. I started chemotherapy on Thursday so that no 1 finished and have second on 2nd January. I’ve been a bit wiped out with a little tingling in fingers when touching anything cold. I hope you have a lovely Christmas. Sending lots of love xxx

Hi yeah they def are amazing just hope I get the best outcome, the tingling from chemo was prob my worst side effect , but I got used to it obvs keeping hands warm etc , hope all goes well for you too , have a lovely Christmas, I will update after my op xxx

Hi I hope your daughter is doing ok and looking forward to Christmas with her daughter and you. I am staying positive and ticking off the chemotherapy from now until February 27th. Then it will be fingers crossed a date for the surgery. My niece is a doctor so is on hand for me with answering my constant questions. I hope you have a lovely Christmas. Lots of love xx

I’m pleased you have a date for surgery as it is something to focus on. I’m six months post surgery and with a stoma. It does take some getting used to but I’m sure you’ll manage. My stoma nurses are brilliant and I know I can always ring them if I need help. The thing I have found really helpful is the Colostomy UK website which has some really good free literature. Also I have joined the Colostomy uk facebook group and everybody on it has been so helpful and supportive even if you think you have a silly question. 
I hope you have a good Christmas and I’m happy to answer any questions if it helps. Take care. 

Hi thankyou for the advise I will keep it in mind, is your stoma permanent? Im just reading about it all again! Was your cancer low in rectum ? Xx

They have said my stoma is reversible but I’ve no idea how long I will have it for. As I had a sigmoid tumour which is not so low down it was quite advanced and my operation was 5 hours.