Struggling to deal with parent having total laryngectomy and wondering what the end of the journey will look like

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Hi there,

I'm not entirely sure what I'm looking for here other than to maybe not feel so alone and that the struggles and feelings are normal.

My story in short, is that my Dad went into hospital in April for a tracheostomy due to months of complications from radiotherapy for laryngeal cancer a few years ago and while having this op they found the cancer had reoccurred. As he'd had RT before, his only option was a total laryngectomy. Everything moved fast from there and within a month he'd had the laryngectomy. Despite passing the swallow test, he's had a leak in the flap he had to have done since 2 weeks post op and it's still not fully healed. It's been the biggest rollercoaster of a journey with more hospital stays, A&E visits, extra operations and it honestly feels like it's never ending. He's got the speech valve and swallow test on the horizon at some point but not until the leak has healed so I know the journey still has a way to go. 

I'm so grateful they found it and he's here but I'm really struggling with it all. I've moved home to support my parents twice (driving my mum to and from hospital etc.) 3 months earlier in the year and another month recently and every time I come back to London I feel out of place and sad. I also feel cut out as it's hard to maintain the same relationship with my Dad when I'm away. He's not a big texter or emailer and doesn't do video calls so I go from being there all the time, lip reading him and reading what he writes down to not much contact. 

I feel so many emotions. Guilty because why do I feel sad when it hasn't happened to me. Angry it's happened and I can't make it go away for us all. Sad and heavy and probably just lost. Scared because there's no guarantees with the speaking or eating outcomes for Dad. Someone told me I'm grieving but that feels odd when he's still alive.

I guess I'm looking to hear from others that have made it through the the 'other' side and that this is normal.

Thanks to whoever takes the time to read this.

  • Hi LondonHC

    So sorry to read your story regarding your Dad, I have been through his problem however very much luckier than he is experiencing. Unfortunately if someone has had previous Chemo and RT for a Larynx cancer the Laryngectomy is a very difficult operation due to the damage done by the RT to the surrounding tissues, I am only repeating my Consultant’s information prior to my own Laryngectomy. I even refused the after operation RT due to the risks of the tissue damage and the possibility of swallowing and damage to my speech valve.

    He will have possibly a long journey but please be assured hopefully he will get through it and will enjoy his return of speech, he will be on soft food as well for a while but hopefully he will return to eating his favourite food and possibly even enjoying his favourite tipple – if you need to know my journey click on my top part

    My sincere hopes he gets there Upside down

    Take care all and looking forward to you replying that everything is going well or better

    Tony

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