Head and Neck Cancer

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Hi,

I am back after a long beak.

Thought I might update you on husband's condition. 

He is going on ok and has now been 7/8 months since the surgery for removal of his voice box. 

He has adjusted to his stoma and voice valve very well.

We have even managed a holiday. 

He has however had a lot of swelling on his neck over the last few months and has been in a lot of pain.  He has been transferred from his original consultant who has left the hospital where he had his operation and also been transferred to another hospital nearer home for his follow up appointments.  It has emerged that they have said he has lymphoedema and they are sorting out treatment for him.  After meeting the lymphoedema team he had a lump come up on his neck which was rather red and had a white head.  He went back and they said it was an infection and gave him 5 days of antibiotics.  While we were away the lump burst and lots of puss came from the area.  This has now been going on for about 5/6 weeks and keeps oozing puss every day.  Eventually he managed to get an appointment with his new consultant who checked it and said that although he didn't think it was anything sinister he sent a couple of swabs of the puss to pathology and ordered a CT scan but then said he could not rule out cancer!!!

As you can imagine we are really worried and just wondered whether anybody has experienced anything similar.

Gill 

  • Hi Gill. Great that you’ve managed to get away. My first husband had a laryngectomy and he developed an infected sinus that the doctors found didn’t respond to treatment just like your husbands. Now I don’t know whether the surgeons use clips instead if sutures these days but I had a really good poke around one day and eventually pulled out about six inches of suture material, whereupon it all healed up. . It’s worth mentioning? 

    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

    Lovely to hear from you and hope you are well.

    I did wonder if anything could have been left in but you just don't know.  I think they may use both as a clip was left in that they missed so luckily they spotted it before he was released from hospital.  Also wondered if the massaging for the lymphoedema and caused anything to move as it has been over 7 months since surgery.  We will have to wait to see what the tests come up with but it is agonising again as it's such a shame as he has done so well and it now seems to have set him back a bit again. 

    Will keep you posted.

    Gill x

  • I can understand how you both must feel. Good luck and do let us know how things go. 
    Me? I seem to have turned a real psychological corner and feel so well in body and head. 30 months and counting. Xx

    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

    Community Champion badge
  • Well done Dani and keep it up.

    it is a long road and everything so little as it may be always seems to be the biggest obstacle these days but hopefully if we can get this sorted we are getting there somehow.  Believe me we have been pushed to our limits and sometimes we have thought is it all worth it but then you get something from somewhere to spur you on and it doesn't all seem so bad.

    Will definitely keep you posted and sorry for not coming back to the forum sooner especially as you got me through those very dark days but life and living it got in the way for a bit!

    Gill. xx

     

  • Will definitely keep you posted and sorry for not coming back to the forum sooner especially as you got me through those very dark days but life and living it got in the way for a bit!

    For heaven's sake don't apologise. You have your own fight to fight and life to live and you need to concentrate on that., Nevertheless it was good to hear from you

    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

    Community Champion badge
  • Hi Gill

    Good  to hear from you and  even better you’ve managed a holiday. Everything x that it’s an infection it has to be worrying for you. 
    At  the end of this month I’m 3 years post radiotherapy which is quite scary. We’ve spent  most of this year re organising  our daughters allotment and extending our greenhouse we’ve had a few holidays in Wales even met up with Dani which was good. As for Spain will see what this month brings .

    Sending hugs to both of you 

    let us know what happens 

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • No more apologies and it was good to hear from you too.

    x

  • Hi Hazel

    Lovely to hear from you again!

    Sounds like you have been keeping yourself busy and that is lovely that you met up with Dani. 

    Yes time is pressing on and glad that you are keeping well.

    Hopefully it is nothing sinister it is just the waiting again for test results.  He feels really well and looks really well so fingers crossed.

    Will keep you posted as to the outcome but it is something we need to get to the bottom of.

    Gill.  xx

  • Hi Gill it was lovely to meet  U.K. and have a chin wag plus  ice cream. 
    You look after yourselves and yes you need to get to bottom of it. 
    Hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Hazel and Dani

    I promised an update so here goes.

    My world has fell apart yet again.

    Hubby had a letter yesterday to ask that he attend the Rapid Access Clinic at our local hospital next Tuesday and the letter stated to bring a relative or friend to the appointment to see his consultant with the results of his scan and swabs.  As you can imagine panic mode set in.  I telephoned the consultant's secretary to see if we could find out what was going on but came up against the usual protocol that they were still waiting for the scan results and this would enable the consultant to have this in place before the appointment.  I asked whether this meant the cancer was back as they asked that he be accompanied to the appointment but she said that was just a standard letter that they sent out to everyone.  I explained that I was diabetic and the last thing I needed at the moment was my condition to be made worse with stress (have complications with eyesight) from all the stress of before and having to keep BG as low as possible to prevent any further damage. 

    To cut a long story short she said she would see if she could have a word with the consultant.  Also contacted doctor to see if they could find anything out and also the two ENT nurses that my husband is under but both on holiday.

    At 5,00 pm last night another ENT doctor from another local hospital telephoned to say that he had been contacted by husband's consultant to say that the scan had revealed that he had a blood clot in his neck and that he wanted to see him tomorrow to start to administer blood thinners.  My husband enquired whether it was cancer and he said no.  The relief was so immense it was untrue.

    We presented ourselves at the hospital and saw the doctor who just gave him a prescription to get the blood thinning injections.  He apologised for contacting us so late out of the blue and my husband said he didn't mind as his mind had been put at rest that there was no cancer.  Then things changed and he informed us that he was sorry if he had mislead him but they had found something else on the scan and they were waiting for the radiographer to have a look at it and then report to the team on Monday so that his consultant would have all the facts for husbands appointment on Tuesday but he said that the likelihood of cancer was present.

    We were then taken to chat to the nurse who tried to console us but not very well.  Husband is now distraught well we both are.

    Tried to ring the consultant again but they said they could not break protocol and we will have to wait til the appointment on Tuesday.

    He now thinks his life is ending as he has had radiotherapy which failed, surgery that has failed and two letters from the consultant in both cases to say the treatment had been successful.  His last appointment his throat was clear so what is going on.  What options are left?

    We were just making plans for holidays, Christmas and the future and it all seems as if it is going to be snatched away.

    Devastated and gutted.

    Gill. x

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