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bigjp

Mum diagnosed...worrying times

My mum was diagnosed with bowel cancer three weeks ago after a colonoscopy. She had been having looser stools for a couple of months and a doctor took a blood test and found she had anemia and referred her for a colonoscopy. She has since had her CT scan and tomorrow is her meeting with the colorectal surgeon. We are all terrified for her and the thought of losing her is just unthinkable. We have no idea what stage it is at or anything like this but the mind has a tendency to race and you fear the worse. The weird thing is she feels really well and now has no symptoms and feels strong and lively and she says she would not know she has cancer if it were not for the diagnosis. We have asked if she wants anyone with her tomorrow but she is adamant she wants to be there alone so she can process the information and her main fear is that if it is bad news she does not want to let anyone down. Is this when we find out the prognosis or what it's development is?

We have a friend who is recovering from late stage bowel cancer and doing really well and he feels that it's a good thing that mum feels well. I guess I'm just looking for a little bit of hope because right now the not knowing is just horrible and after having spent tens of hours looking things up my mind is a whirl of probably useless knowledge!

GD62

Oh dear @bigjp so sorry to read about your poor mum's diagnosis and the anxiety and waiting is the worst part. My advice is that she should go with a note pad and pen if she is on her own, right down her questions and tell her to make notes. There are advice booklets on the web site and relatives private section too. People are friendly and you will get lots of good advice and one is do not google come on here and ask forum members and nurse advisors anything you want to know.

Good luck :x::x::x:

telboy47

Hi bigjp, So very sorry to hear of your mother's diagnosis and in view of your mother wishing to take on the consultation alone, what excellent advice from GD62. I won't go into my involvement in this wonderful, supportive site, save that I am a 'newby' to this forum. I suppose clicking on my tag name will give you my background. I am a firm believer in keeping positive and never giving up; my wife has the same attitude. We didn't want to involve any of our 4 daughters but one would not take a 'No'. Our daughter took notes and let the other 3 know, which took the pressure of us! Now we have no secrets about any of my wife's treatment even though my wife does not like discussing it. Please advise your mother that she is not letting anyone down. It is a sad part of life and cancer does not differentiate as to whom it affects; WE make the difference as to how we allow it to affect us. Please keep positive during your journey through these trying times. We laugh in it's face! Thinking of you all for tomorrow. :x::x::x:

Elmac

Hi @bigip - a month ago I was in exactly the same position as your mum - no symptoms, fit and well, a positive 'poo test' a colonoscopy and a month later an operation to remove the malignant tumour - that was 2 ½ weeks ago. I too, felt really well and would't have known I had cancer if not for the colonoscopy.

I would advise her to take someone with her to her appointment, my husband came with me, and although I had taken written questions, was so intent on listening to the surgeon, didn't think to take notes, but my husband did and we were able to discuss it all again later.

Did her CT scan show what stage the cancer is at - mine came back at T3 (Stage 3) N1 (at least one lymph node affected) M0 - not in other organs. As I have at least one lymph node affected, I know I will need chemotherapy but still waiting for the biopsy results to come back - and that is the worst part of this cancer journey we are all on, the waiting game.

My one comment to the anaesthetist when I was about to go into surgery, was that I wasn't afraid of the operation, I was afraid I wouldn't wake up, as I still had so much to do. She promised she would wake me up and she did.

Tell your mum to get onto this site, and forget about Googling - you will both find all the information here with lots of supportive people.

Click on my icon if you want to know more about me - I'm one of the cows - and you can read my story and follow me if you want.

Elmac

@bigip I forget to say - she is not letting anyone down, by having cancer - it is just a disease like any other and can be treated and cured in most cases - read some of the stories - eg. @Baxter2 she is a real battler and a moderator on this site. Your Mum needs to advise you all of the details or you will all be worrying needlessly. My two children (in their mid 40's) needed to know so that they could tell their children why GrannyMac was in hospital having an operation.
Best of luck for you and your mum - you will both find this site a godsend - apart from anything else you can vent your feelings, your hurt, your frustration, ask for advise and the main thing for you all is to keep positive

Baxter2

Good morning @bigjp and welcome to the forum from me too! I'm sure you'll find loads of support, information and advice on here.

I'm sorry your mum has been diagnosed with bowel cancer. It's early days for you all and this period is arguably one of the worst with all sorts of scenarios whizzing round in your head.

I know that you are due to meet the surgeon today so lots of deep slow breaths before you walk in armed with your notebook, pen and written questions. I think a good place to start is by taking a look at the charity's booklets, in particular the one about your treatment pathway. That way, you will be a little more familiar with the treatment possibilities ahead.

Another bit of advice I'd offer is, try not to look too far ahead and wonder how things will turn out. Take things one day at a time and give yourself a big pat on the back after each day you manage to get through. Take good care of yourself too as it can be so difficult being the relative/carer/ loved one doing the 'supporting' I'm sure it can be quite exhausting actually. I'm the patient so I don't really know for sure but can only imagine how it feels for them. Once treatment is planned and gets started, things will probably feel easier to deal with, I promise.

Please let us know how today goes if you can?

Sending love and all my very best wishes,

K💙💜💛💚❤️

Elmac

Hi @bigjp - how did your Mum get on with her colonoscopy and meeting with the surgeon? I do hope you persuaded her to take someone with her to the appointment and that she has discussed the findings with you. Keep in touch and let us know how things are progressing.

bigjp

Thanks for the message. She went on her own in the end but for her it was the best thing. She is having surgery this Thursday to remove the rumour and quite a bit of her colon removed as well. The nurse said that it’s positive that she is having surgery and there was no sign on the ct scan of any spread so I hope this is positive. It is a large tumour apparently but I have read that this is not always the main factor in the staging of the cancer. Thanks for asking.

bigjp

Wishing you well in your recovery. I only just saw your previous messages. It’s such a shame that anyone has to go through this experience.

Elmac

Hi @Bigip - if you mum (or you) needs someone to 'talk' to about this journey of ours, I am only 3 weeks ahead of her - I had a right hemicoloctomy 3 weeks ago tomorrow - so know what she is going through. You all have to keep positive with her.

If she is at Stage 1 or 2 with no lymph nodes involved, then it is unlikely she will need chemo. At least one of my lymph nodes has been invaded, so I will need chemo - not looking forward to that at all. My surgeon said my tumour was bigger than she expected, and I ended up with open surgery so have a 25cm zip up my tummy - I'm still waiting to hear about the biopsy results which should be on Wednesday as the MDT meeting is scheduled for then. I hope your mum was given all the Beating Bowel Cancer booklets - as the information in them is great, otherwise you can read them online.

One thing to do for her when she is in hospital is to take her some chewing gum - she will be on sips of water for a day or two (5 days for me) and the gum helps stimulate the gut, but also cleanses the mouth leaving it fresh, and you can't swallow it. Once I was on a Light Diet, I kept to soups, jelly and ice cream or a baked potato - the meals were too heavy for my bowel to deal with after surgery. Peppermint tea helps with the wind and I had peppermint sweets to suck as well. Fresh Mint leaves with hot water and honey makes a deliciously refreshing drink.

I think the main thing after the op is to get up and about - I did 2 walks today - one with my husband at Nymans (National Trust) through the beautiful gardens, and another by myself for an hour this afternoon (exhausted when I got home) and I thought I was reasonably fit before the op. At the hospital I started with walking to the loo, together with my drip-stand, catheter etc, then once I had dispensed with that, round the corridors at the hospital, first with a nurse, then with my husband, and then on my own - graduated on getting home to 20 mins then ½ hour and so on, so feel I have achieved something to get to an hour today!

Since I got home my husband has been making me small delicious meals and gradually introducing herbs and spices and I have had no ill effects at all. Jelly babies and marshmallows were recommended by the specialist Macmillan nurse, the gelatine in them helps to firm up the stools. I got a 1kg bag from GrapeTree (they do mail order if there is not a shop near you) and they are much nicer than the smaller packets you buy in the supermarket.

Tell you mum she has lots of friends on this site - I'm not a blogger but have learnt so much from reading about others on this journey of ours. It was a huge shock to begin with as you and your Mum know only too well

Regards to you and your mum - tell her to keep positive and once home make sure she has lots of visits from family and friends as it will stimulate her into getting better.

Elaine