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In limbo - mum diagnosed with pancreatic cancer 5 weeks ago. Finally got her home, but no follow up appointment and we don't know if the cancer has spread

Concerned-daughter

My mum was diagnosed with pancreatic cancer 5 weeks ago. Symptoms started 24 August when we noticed she was a little yellow and since then the decline has been rapid. The Symptoms of jaundice made her so poorly and following a failed ERCP she was admitted to hospital for 18 days where she was treated for acute kidney infection and sepsis.  They finally did the ERCP which has relieved some of the jaundice symptoms and we finally got her home. We now feel in limbo. We have had no follow up appointment and have no idea if the cancer has spread. Mum is fading away,  is breathless when doing even the slightest thing and is sleeping most of the time.  It feels such a long wait whilst test results are gathered.  We were told that a referral to a palliative care team can only take place once all results are back.  We feel quite isolated at the moment,  its been a very long 4 weeks and I do feel as though I am being impatient. However I feel like by the time things are in place it could be too late. 

Has anyone else experienced the same? Its so life consuming both emotionally and mentally for us all. I really don't know how my mum is coping like she is. It's heartbreaking to see xx

  • Hi Concerned-daughter,

    Welcome to Cancer Chat. I'm so sorry to hear of the situation with your mum - this sounds incredibly difficult and I can completely understand this must feel lonely, and also frustrating in terms of waiting to hear more.

    Hopefully it won't be long before you hear back and get the information you need. If you have concerns about your mum during this time, or things get worse or you need support, give your doctor a call.

    If you'd like to talk things through with someone, you may find it helpful to speak to one of our nurses. If you'd like to do this, you can reach them on freephone 0808 800 4040 - Monday-Friday, 9-5.

    You may also find it helpful to speak to Macmillan in terms of any additional support that could be offered.

    Aside from this, hopefully this forum can be of some support to you - we are always here if you need it.

    As I say, I hope you hear more soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

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    So sorry to hear what you and your mum are going through.

    Also experiencing a similar journey with my mum, she had stomach pains for 5 months and was wrongly diagnosed with a hernia. After a biopsy, she was diagnosed with incurable stage 4 bowel cancer. She was admitted to hospital with a bowel blockage and now has a stoma bag.

    During the whole process we have felt isolated and in the dark and unsupported. Please do not think you are being impatient - unfortunately we’ve had to do a lot of chasing ourselves (my sisters and I)! You should have been assigned a macmillan nurse while your mum was in hospital? If so, I would call and email them until they give you an updated pathway for your mum. 

    We didn’t want to wait any longer for my mum to see her assigned NHS oncologist, so we googled him and found he did private clinics. We got her a consultation (£250) and he has now referred her back to his clinic on the NHS for chemo.

    The hospital also referred her to a hospice - which sounds really scary, but I would recommend having that in place while your mum is still ok as it takes away the stress and it’s comforting knowing you have that back up if needed. They also offer pre-grief counselling which I’m going to hopefully start doing. I had the misconception that hospices are just for the very end, but I think they offer support in general, if you are given an incurable diagnosis. 

    Its been 8 weeks since my mums biopsy and we can’t believe how rapidly she’s declined, with the bowel blockage, stoma operation, and now being at home wanting to sleep much of the day, like your mum. 

    Sorry for the long reply! But my sisters and I have felt so lost during this process, so hoping I can provide some answers for anyone else going through the same thing. None of my friends have poorly mums so it’s also tough not having a peer that knows what you’re going through. I’m here if you would like to chat about anything else. 

    Laura x

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