Larynx cancer

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Hello, I’m new here my husband has just had a full laryngectomee last week , how did everyone cope ? I’m visiting twice a day , he’s just constantly wanting to come home , texting every minute about it , I’m so tired , stressed, worried at the end of my tether has anyone got any advice please , thank you 

  • Hi Lele, welcome; sorry to hear about this, it's a tough op...mentally and physically.

    Was it a "salvage" laryngectomy? If so he'll likely have had a PM flap of tissue from his chest to do the "rebuild," that can add a fair bit of time to the recovery.

    I was in hospital for five weeks in total with mine, four initially and then another one with an infection, it's no fun but it's necessary to become accustomed to the new "plumbing" in your neck. Patience is needed unfortunately, there's little point in him coming home before he's ready...my team actually allowed me to do a home visit for a day if I'd wanted to, but I decided against it, would have made things harder I think.

    Also he's probably still being tube fed, my guys didn't want to send me home with the NG tube fitted during the op (and I wouldnt have wanted that either), so I had to wait another couple of days for it to be switched to a RIG....which I had experience in managing.

    On the up side, I'm approaching four years now since mine was done, and life is good...a bit different admittedly, but quality of life is great...he'll get there! 

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Thanks Mike , yes it was a salvage laryngectomee I think,  they took skin off his thigh for rebuild . It just so hard when he’s begging to come home ,he was told he would be there at least 3 weeks it’s only been a week .

  • Ah right, mine was from my chest. 

    Difficult for you and him I'm sure, but there's really little point in him nagging you to go home, it's not like it's your decision to make! I'm sure his feelings will be taken into account, but his team won't let him out until he's ready. Hard though.

    I'm guessing it's still too early for him to have had a swallow test yet? That can delay things as well, particularly if the result isn't great, which it probably won't be first time unfortunately.

    So much to get right so that he's completely comfortable, or as comfortable as possible, with managing things on his own...otherwise things can get difficult. I convinced myself I was choking and couldn't breathe at one point, went into full on panic mode....but it was just a minor block and my imagination took over, would've been dreadful had that happened at home!

    I don't really know what to suggest really other than what I've said, sadly we all tend to be impatient patients!

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Thank you , no he’s not had swallow test yet , it’s nice to get someone’s view who has been through the same thing .

  • No problem, happy to help, if you have any other questions let me know.

    Very best wishes.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi, I know how you feel. My husband had a total laryngectomy a year ago and it’s a long journey. I stayed at the hospital all day and it was so tiring, he couldn’t speak so had to write everything down which was frustrating for him. He was also desperate to get home, he was in for about four weeks. He had his swallow test after about three weeks and that meant he could drink his coffee again. We watched tv and played board games etc. when he did get home his arm that they took the skin graft from for his flap got infected and that meant another return to hospital for two weeks. Very frustrating for him but it took ages to get the infection under control. After that he began his chemo-radiotherapy. He was great for the first three weeks then went downhill and had to get kept in for the last few weeks of his treatment as it affected his kidneys. The day he finally got home and all treatment finished was a celebration I can tell you. It’s been the longest year of our lives, a year on he is doing great, he can speak really clearly with the hands free flexivoice and after losing 3 stones his weight has now stabilised and is eating a lot better, still has to be careful what he eats but anything is better than the drinks he had to take at the beginning. We have been on holiday twice now and he has managed flying etc very well even though we have to carry a medical bag everywhere we go, constantly on his nebuliser, it’s a different way of living but he has adjusted well to this new way of living. He wouldn’t be here today if it wasn’t for his skilful team of doctors and nurses that helped him on this journey. Just pace yourself and look after yourself, it will get better, I know at the time you want to fast forward time, but it will happen. The McMillan nurses were a great support to both of us.

  • Thank you for all of your support and answers , sadly my heart and soul passed away on Friday , he fought to the end but just wasn’t strong enough . Thank you all . Xx

  • Hi Lele47 so so sorry to hear your sad news. 
    Cancer can be a b……d sending love to you and your family. 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Lele 47

    So so sorry to hear the news that your beloved husband has passed.

    This cancer is so cruel and the treatment can be so horrific for many of us.

    I can only imagine your pain and heartache …….

    Sending you a big hug x

    Hoping you have family and friends to help support you .

    Debbie

  • I'm in absolute shock Lele, I'm so sorry.

    It sounded like all was going according to plan from what you were saying, a tragedy,my heart really goes out to you

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/