Tracheostomy

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My partner, Stuart, had an oesophagectomy over a year ago. He has been unable to eat, getting nutrition through a nasal gastric tube. He had vocal cord palsy as well but it was treated in August but sadly only had his voice for two months. Since October his voice went due to paralysis of the vocal cord. This was caused by an enlarged lymph node pressing on the nerve linked to the vocal cord. Unfortunately cancer cells were found in the node. He started chemotherapy mid January but it was halted due to a crisis with his breathing due to the vocal cord palsy. He’s now in hospital waiting for a tracheostomy procedure on Tuesday. We’re told this will be permanent and he’ll have to learn to talk. I’ve researched aftercare of the airway and it looks tricky. This is a particularly cruel cancer and we’re told that he’s been unlucky. We’re also having to deal with palliative care though the oncologist has said there’s an outside chance of cure. However, the damage has been done. After the last two visits I have cried in the car. He’s been so diminished. I can’t believe the difference to him over 14 months. He looks more like man in his 80s, he’s 73. 

  • Hello  

    I am Brian, one of the Community Champions here on the Online Community. I have noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the Oesophageal Cancer group and I hope seen and answered by members of the group.

    You did say Stuart was having his procedure today and I trust this has gone well and I wish him a speedy recovery. Don't forget our Support Line on 0808 808 00 00 (8am to 9pm 7 days a week) is there for you if you wish to speak to someone for additional Support.

    Best wishes - Brian.

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

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  • galloway i so feel for you, not had the issues with talking but know exactly what you mean, how this disease changes everything, there is so much support on here and wise words, ive definatley used this forum for support when things werent brilliant at home, i think sometimes the mental side is worse than the physical.

    sending hugs, keep reaching out, and ignore dr google, awful advise.

    take care jules Hugging

  • I just want to say how sorry I am for all you are going through. All on here have different and wide ranging experiences of this horrible illness but you will find support and understanding from all.

    Sending love

    Geraldine Rose

  • Hi Galloway I am so sorry you are going through this. My husband started his journey 3 years ago. Had the operation 3 years this coming September. He hasn’t eaten much since then and has lost so so much weight. He can’t speak very well the last few months, he still has some of the same cancer in his neck/throat area and we think that is causing the voice problem, he refuses the supplements and a feeding tube. We are awaiting the results of another scan as it had grown a bit on the last scan and he wasnt offered any treatment then she said would wait till after the next 3 month scan. I know how scary this is for you as I am going through it too and at my wits end at times. The cancer was originally found by chance apart from a bit of reflux he was such a healthy capable man, now he is a shadow of him. This group really helped him when he was going through treatment, I hope you find some help here. I wish you and Stuart all the best and you are welcome to message me anytime. My old man is 70. 
    kind regards 

    steph

  • Thank you so much Jules. I’m so worried we’re on a slippery slope. 

  • Thank you so much Steph. He had the tracheostomy on Wednesday. My heart breaks for him. On the night before his breathing was so bad I thought I was going to lose him. I was looking at photos of Stuart 2 years previously and I’m shocked at the difference. How he’s aged is awful. I’m hoping it’s partly due to the chemotherapy and the struggle to breathe. He has another 5 days in hospital in a single room where he’s so lonely. I will feel better once he’s home. 

  • Yes I bet you are looking forward to him coming home. He will be looking forward to his own bed too and your company. I hope he picks up more as soon as he gets home for you. Stay strong. Big hugs x

    Steph 

  • hi galloway, hopefully he will be on some serious pain killers to help him sleep and have a rest from it all.  Not had this procedure, but looks like we are back on a new cancer train ourselves, 3rd time unlucky.  I know when i spoke to some of our guys, the general thought was that if its the man who has the condition, the women will have meds on a military grade spread sheet, appointments down to a tee, meals and medication on a clock, as we are the organised one, think that is why i struggled when i kept thinking if this was the other way round i would be doing everything for you, not really realising i was so wrapped up in my own frustration, anger, anxiety and crying so much, and he genuinely didnt know what to do.  Know when i came home after the op and 7 days in hospital, felt so alone and scared, as i had nurses round the clock doing meds, food and general welfare.  so as much as i was glad to be home, still felt very out of sorts.  i have vowed this time that i will be more forgiving, and that we need to focus on this new challenge together. so talking does help, but i wasnt the same through all of this.  So dont panic if he isnt himself, we hear the word PTSD alot, and like my husband didnt really want to talk, we are trying to use our previous experience to make appointments and scans less scary, its taken us 16 months, so hang in there, and feel free to just talk on here.  You look after yourself, as you will need some time out to digest it all.

    sending hugsHugging

    Jules

  • Thank you Steph. It’s a dreadful cancer. It robs so much, speech and swallowing. I’m at a loss for a way forward.