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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

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'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 172 conversations

Duodenal cancer

Started by Anonymous on 10 April 2017 at 17:38

Hi All, My husband has duodenal cancer, mets to liver. First symptoms started in November 16. He's having a hard time. On 2nd cycle of chemo but as in first cycle he was hospitalised and chemo stopped midway despite it having been reduced. I find it difficult to stay upbeat, tho he is very accepting of his condition and easy to be with. I want to do the best for him- but don't know what that is some of the time. We're seeing oncologist on Wednesday and my husband thinking of suggesting coming off chemo completely. That fills me with terror as I'd feel we've given up all hope. Has anyone been in this situation , and if so, any words of wisdom ? Thank you

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  • Picture of SusieQ
    From SusieQ  
    23 November 2017 at 09:58
    Edited on: 23 November 2017 at 15:39

    Hello,

    Welcome back -  although it sounds as though things have slowly changed since we last spoke. You've been living with uncertainty for many months now, and it can feel a heart lurching moment when current treatment isn't working.

    If the biliary stent is infected, then that would be adding to your husband's symptoms, and might explain the spiking temperatures and rigors. Have they put him on any antibiotics? They may be holding back till they see results of his blood tests.

    It's always difficult to predict if this is the beginning of the end...and the trouble is, you're both living with that tension of wondering what lies ahead. The fact that a gentler chemo regime is being offered, suggests the team are still aiming to hold the cancer back as long as possible.

    Are you getting psychological support locally? I'm wondering if, for example, your husband has been referred to the specialist palliative care nurse/team at all. People sometimes panic when they hear the word 'palliative care', but it's to support anyone who has a cancer that isnt going away. It's not physical 'nursing' as such, but having an expert available to contact, who can manage symptoms, and offer psychological support.

    Hopefully the stent replacement, (if it is infected) will help relieve some of the symptoms, and then your husband can start the gentler chemo...

    Message Robyn or me anytime, if you'd like to talk anything through...

    Warm wishes

    Sue

     


  • From Anonymous
    22 November 2017 at 20:36

    Hi. Anyone any advice/experience to offer. Husband told today his tumour on duodenum had grown and spread- another two spots found on liver. Oncologist thinks a more 'gentle' round of chemo is the way to go. Also thinks biliary stent might be infected and need replaced. Meanwhile, Hubble very tired and listless- prone to rigours and high temperature. After results of blood tests are analysed we will know what is being planned. Terrified that we might be entering the final stages. Thanks for reading


  • Picture of SusieQ
    From SusieQ  
    14 July 2017 at 13:09

    Hello...

    ...and thank you for the update. It sounds an exhausting time physically and emotionally for both you and your husband. The scan should help with any further decisions regarding further chemotherapy - and it may be that the doctors suggest your husband has a chemo break anyway, as it's obviously been having some tough side effects.

    It's often at this time that the carer struggles too - feeling (unfounded)guilt that they too are exhausted with the stress and worry of it all. You sound to be in this together, and seeing your husband unwell, will be hurting you too...

    I hope you'll feel able to message Robyn or myself at any point - for some morale support for you, and somewhere to talk things through...

    Warm wishes

    Sue

     


  • From Anonymous
    14 July 2017 at 12:21

    Just an update. Husband has finished his last of 6 cycles of chemo. In actual fact, he only completed 2 of them as he was hospitalised mid way through each of the other 4! It's been a hard and gruelling road for him- and , without looking for sympathy, me too. He now has a CT scan on Tuesday though we won't get the results of that til 2nd August. Don't know what that consultation will bring but we're both hopeful that more chemo isn't recommended. I thank God that although Hubbie has little energy, he has great spirit and a good outlook. Also blessed with great friends and family, but at times it's a lonely place you find yourself in. Hope everyone out there is managing to cope and keep going.


  • From Anonymous
    14 April 2017 at 17:54

    Thankfully oncologist persuaded my husband to have 3rd cycle of ECX chemo, which he had today. This has to be followed up with a scan in the next week or so, to see if reaction to chemo has been positive. On 21 days of capecitabine orally, now. Just hoping he can get through this cycle without any disruption!! Has also been given a course of steroids to try to improve his energy levels. Fingers crossed !


  • Picture of SusieQ
    From SusieQ  
    11 April 2017 at 09:35

    Hello,

    This is an emotionally painful time for you - it can feel like trying to paddle to safety with no specific compass. The role of partner/carer is sometimes even harder than it is for the person with cancer. Events may feel to be happening which you have no control over...

    Your husband has given chemo his best shot - and it may be that the oncologists themselves suggest a break, or a further reduction in chemo strength.

    I sense you'll support your husband whatever his decision will be - as scary and upsetting as it might feel. The oncologists will listen to him and work with him, on what the best decision for him is.

    It's not giving up hope - it's more about redefining what hope might mean now. He possibly feels he'd like some quality of life now, over quantity, if the chemotherapy is making him so ill. If he does stop the chemotherapy, then it's important to find out how the oncology team might support him moving forwards. Are there any other treatment options, or clincial trials he's eligible for. If it's time to have a break from active treatment, then working out what support you and he can have.

    Has he a specialist nurse assigned to him, perhaps he could do with a referral to one based in the community (often known as Macmillan nurse)? She/he would be able to support him, symptom wise, and and you both psychologically.

    There are other online members here, who are experiencing what you are going through - and hopefully will be in touch,

    If you live near one of our Maggie's Centres, you'd be welcome to drop in and talk through how you're feeling, with others who understand what you're going through. You can also message Robyn or myself at any point if you'd like to talk about something in more detail...

    Thinking of you both for tomorrow's appointment,

    Warm wishes

    Sue

     

     


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