Hi All
I haven't been on here before.
My mum was diagnosed with bowel cancer in November 2019 after getting sepsis following a cancerous tumour perforating her bowel. Luckily she survived this op and has been doing fantastically well despite opting not to have any treatment... She is 83 years old and didn't want to put herself through it. Getting on for 2 months ago now she self diagnosed herself as having a water infection due to her urine being very dark (no other of the usual symptoms). Unfortunately, due to covid and my mum only being able to have a telephone appointment the doctor went along with this and prescribed accordingly, I had to ring the Doctor to explain that I didn't believe she had a urine infection as was previously diagnosed a few months after the bowel as having liver mets. I told him she was yellow and he immediately advised I should take mum to hospital right away. After a bit of kicking and screaming from my mum she agreed to go to hospital where they confirmed that the tumour had grown causing a blockage of bile and Bilirubin.
Now, mum is getting yellower by the day, really struggles to do anything until 1pm. Feels sick and is being sick, has no appetite and is not eating much, has swelling in her belly and has backache and generally just sits all day, being too tired to do anything much.
My problem is, I don't know how long we have..... Mum is in denial and keeps talking about what she'll do next year. She avoids any talk or acknowledgement of cancer but thankfully the Macmillan Nurse does attend.
I'm just finding the pretense so wearing and mentally exhausting which I guess is selfish being what mum is going through. I see her every day and see her decline everyday. Her yellow skin sometimes has a tinge of green and I come away struggling to cope. As I live near her I will do most for her as easier but do have 3 other siblings who will do what they can but due to work and not living so close don't have quite so much involvement.
I need to know how long mum might have? They won't do a stent now so only having Oxycodone for pain at the moment. My siblings are happy with the pretense of her thinking she'll be here next year as I am for her amazing positivity but on the other hand I feel so confused and emotionally lost.
Is anyone going through anything like this, what timescales are we taking about? I'm not good with unknowns . Any advice would be great to help me manage my feelings.
Thank you xxxx
Hello DaisyLoui
Your post is so full of emotion, I am so grateful that you have found the strength to share it here.
I am also truly sorry to that your Mum seems to be deteriorating now after her initial bowel cancer diagnosis in 2019, it is extremely difficult to watch a loved one go through these stages and even more so when we have very little control over it.
I am not sure that what I am going to write is going to be what you were expecting to read, but I hope at the very least you will know, that we are here, you are being heard and we are ready to give you all the support we can.
Timelines, they are strange things in my opinion, My father in law was diagnosed some years ago with cancer, and secondaries, his deterioration was steady and quick, in total six months, there was no doubt how ill he was. Other's that I have known have had a cancer diagnosis, they have been extremely ill, and deemed end of life, and from out of the blue, they turned it around and many years later are still here. I think what I am trying to say is, it is very difficult to know timelines, your Mum, in her own way is being as positive as she can, she is not thinking of passing, she is thinking of living, of future, of dreams, and maybe this is what makes her happy, as difficult as that is for you.
You, seem similar to me, in so-far-as, I really wanted to know the when, but as time has come closer to the prognosis for my husband, I no longer want a when, I want a life, our life.. so for us all it is different.
The only thing I say, to all is.. None of us are promised tomorrow, live for now, this moment, today, make your memories, laugh with your Mum now matter how tired she is and how difficult that may be, because if tomorrow doesn't come, there will be no more time left to do that
I too am no good at the unknown, so for me, I acknowledged that we all pass eventually, I know that! and for me that is enough, I really hope that you can make that enough for you too, so that you can enjoy the time you have left with your Mum.
I don't know whether you have reviewed the Bowel Cancer forum, there may be others who have similar experiences to you and Mum who can provide further support.
Thinking of you both at this time
Lowe'
Hi Lowedal
Thank you so much for your kind email, especially when you have your own things to deal with...my thoughts are with you also.
Your words have been a huge help to me, the bit about mum is thinking of living, not passing.... That really has been making me think and is changing the way I need to look at this. I'm so proud of mum looking at it like that and would never have thought of it like that had you not said it, so thank you for your words as I feel this is really going to help.
It has in fact, bought some words back to me that mum said when she had her initial diagnosis, she said she was going to keep living until she died...i guess what she was saying was that she was going to carry on living as normal until her last day arrives. What a wonderful way of looking at things? She is not giving up, she never has, at least I now know that when she passes it will be because she chose the timing and I take comfort in that.
Thank you Lowe, you really are a kind person and I wish you all the best with everything you are going through.
Much love, Daisyloui x
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