Hi I'm new and a bit lost

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My husband has just had a total laryngectomy, tracheostomy and removal of a large tumour in his neck this morning.  The consultant called about an hour ago to say the surgery went well and that he's come round from the anaesthesia.  I have a broad idea of everything we'll be facing regarding speech, eating and further treatment but I just feel overwhelmed by it all.  I've spent the last 4 months from first the symptoms through all the tests and the diagnosis trying to be his rock, but I'm running out of steam.

  • Hi Missy and welcome. It’s a lot to take in. My first husband had a laryngectomy in 1987 and recovered really well. He was offered a speech valve just as they were being introduced in the U.K.  and coped happily to become as loud a voice as he ever was. 
    Things have moved in since then and you can even talk hands free these days. 
    There is a really good U.K. wide association you might find useful. 
    https://www.laryngectomy.org.uk/

    Meanwhile you do need to take care of yourself. There is room for carers  in the association I have linked so do please give them a call. Your husband has wrap around care and a dedicated team to look after him si make time for yourself. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Dani

    Thank you for your kind message.  I'm sure things will get easier and less scary when I understand more of what I need to do to support him.  The hardest thing today will be organising a visit when he's allowed.  We have a dog with separation anxiety who can't be left at all and one  willing dog sitter who I don't want to impose upon too often.

    It is very encouraging to know how well your husband has done   Thank you for the links and your support.

  • Hi Missy

    So sorry to hear about the hard path both you and your husband are on at the moment.

    Dani is spot on, you must look after yourself as this is a marathon not a sprint. When I got home from hospital for a few weeks  I relied on my husband for lots of things, driving to appointments, food shopping, clothes washing but as I started to feel better I wanted to take back these tasks gradually. My husband was a tower of strength but during the day he did take himself off for a short time for a breather. He was told by the doctor to not over help but to let me do as much as I was able and that worked well. I couldn't have stood it if he had been hanging over my shoulder all the time as I was usually very independent.

    You have to find what works for you and your husband.

    Please do take some time for yourself as this is a big change for both of you. Everyone gives support to the patient but the carer is often overlooked. It can be very stressful for them also as their life is changed as well and no longer going down the path they thought it would.

    Sending you big hugs

    Lyn

    Sophie66

  • Hi Lyn

    Thank you for being so helpful.  I've been running around the last two days and he's nowhere near coming home yet - and I'm shattered - and my boss is trying to get me back to work!  I know I need to slow down.  It's nice to have it from the patient's point of view.

    Missy

  • Hi Missy ,I've taken time off work to do exactly the same as you my husband has throat cancer ,he is really feeling the effects of the radiotherapy and chemotherapy this week ,I feel like I've been through the mill too ,I felt strong up until this point but seeing him in so much pain breaks me ,he is having to go on a drip for 2hours daily so we have to leave our dogs up to 5 hours a day ,luckily my 78 yr old mum comes round ,feel like life is just so tough ATM ,this  community is so helpful with advice and knowing you are not alone that keeps me going if ever you need to chat I'm always here xxx

  • Hi Kenco 

    We thought he'd only have radiotherapy and chemotherapy initially and then the dropped the laryngectomy bomb.  He'll still have to have radiotherapy when he recovers from the surgery so it's a long road.

    I'm sorry you're both struggling as well -  it's so awful seeing loved ones suffering and not being able to help.

    Thank goodness your mum can help with the dogs!

    Hope the treatment is finished before too long and thank you for reaching out xxx