Recently diagnosed Husband

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Hi. I don't know what I'm meant to say in here and apologise in advance because I feel like I'm about to moan and whinge but I honestly don't know where to start or what to expect. 

My husband was told he has cancer 4 weeks ago and our heads are spinning. Everything seems to be going so slow and we don't even know what cancer he has. We're being told conflicting information which is confusing and frustrating. 

We have so many questions but nobody to ask and we feel like we've been forgotten about.

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    I am so sorry to hear that your husband has been diagnosed with cancer.  This is such a difficult time for both of you and, is sounds as though, on top of his diagnosis, there is slow communication from the hospital team:  I can't imagine how tough that must be.

    May I ask, how are you both coping at the moment?  I am hoping you have trusted family and friends around you, supporting you at this stressful time? 

    You mention in your message that your "heads are spinning" that's understandable when you feel you have been  "forgotten about"  I hope I can reassure you, that, in addition to messaging here, you are both very welcome to get extra support from us via the Support Line e.g by phone or live web chat.  It may be helpful to share with us, in the moment, how you are managing, and allow us to support you both with the questions you have. 

    The Support Line is open every day from 8 am to 8 pm, initially you may like to call 0808 808 0000 and speak with an Advisor who will allow you the time and space to tell us how things are.  It’s possible, out of that call may be the opportunity to speak with a Cancer Information Nurse:  he or she won’t have your husbands medical records, but can help with medically related queries such as tests and investigations etc.  I will post some information here about the Support Line, it will notify you about the different teams you may like to speak to and their opening times:

     Macmillan Support Line Options

    I am wondering   if your husband has had the chance to speak with his GP?  It’s possible the hospital has written to his surgery with information they haven’t shared with you.  I appreciate that, in itself, sounds frustrating, but, it may be an idea to book an appointment or a call back with your husbands GP, it will also give you the opportunity to share how slow everything seems to be, and perhaps to explore options with the GP.

     Another option to explore how appointments and tests etc are progressing is to use the Patient Advice Liaison Service (known as PALS) for your area.  A PALS team will help to “build bridges” between patients and their families and their Healthcare Team.  I will post an explanation here of how the PALS team will try and help and support you.   I’m mindful this link is for England, and you may live in another area, for example Scotland has the Patient Advice and Support Service, however if you search “PALS plus your hospital name” you should find your local team.

    What is the NHS PALS Team

      it’s such a shame for you to feel you have been forgotten about.  I am hoping that PALS can help you, plus your husband’s GP, but we are also here for you every step of the way.  As you start to become more aware of your husband’s cancer type, and hospital appointments etc, please reach out, either here, or using our Support Line options for example phone and live web chat for instant support, but there is also an email option.   The last thing we want is to feel you are struggling, please keep in touch and let us know how you both are.  

    Take care both of you.

    Liz

    Macmillan Cancer Information and Support Advisor

  • Thank you so much for this information Liz. It has helped knowing there are other ways to be supported. 

    Both myself and my husband are lucky to have supportive families, they've been great.

    We had an appointment with our GP but we ended up giving him an update rather than the other way around. I didn't think of contacting PALS. 

    I feel like I have a few ideas to help me going forwards. 

    Thank you