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cancer of the oropharynx

chriswat
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I am new here to please bear with me.  I am a 62 year old female and live alone but do have the support of friends. I am in desperate need of some hope following the dreadful side effects of the radiotherapy treatment I endured for squamous cell carcinoma of the oropharynx.  I have a life long fantastic friend, without whom I dont think I could have come this far, but I need some hope/reassurance of people who have been through this very aggressive and barbaric treatment for throat cancer.. I finished the 30 days of radiotherpay on 21st November 20014, by which time I was an inpatient at Guys Hospital having had a nasogastric tube fitted. As the weeks have passed following the final radiotherpay session, I am on my knees in despair.  Yes the side effects were explained to me (and I signed a form to this effect) but in a very cursory way and in no way prepared me for what I am still going through,, The symptoms - Thick dreadful mucous for which I have had to get a suction pump, complete loss of swallow function and complete loss of voice plus of course nightly feeds through naso gastric tube has turned my life into something so alien that I feel I have lost "me".  Can anbody out there give some hope as to how long it will be before these side effects begin to diminish (its been 5 weeks and gets worse every day still).  I am on my knees  with despair and not sure that I can carry on for much longer.  Can someone tell me of their experience.. My fear is that I will end up with a feeding tube forever and never be able to communicate by voice again.  I thank you in advance for any response. Chris

  • Offline in reply to Vatch

    Hello Gary - Chris here.  This is my second attempt at replying to you.  I typed loads, pressed something and lost it all.  So I am trying again.  I wouldnt know how to do this, but when Irene has responded to me she has mentioned that she had seen your posts to me.  So I was wondering if you could have a look at my post to Irene today, where you will see in much greater detail what has happened over the past couple of days.  But here is a little of whats been going on.  I went for my first visit to the local community head and neck team to see the dietician.  My twin brother took me and came in with me which was very nice, because although not estranged our lives went in very different directions and we have not been close for twenty years or so (very ably assisted by his wife).  My brother John is a very successful, very wealthy businessman and our lives started to just not cross.  But I think he was glad to have helped me today.  There is only the two of left out of our family, so we should be closer, but as they say you cant choe your family but you can chose your friends.  Anyway, Gary, real downer.  I am stuck with this nasogastric tube for at least the next three months with no hope of eating or dinking anything for at least six to eight weeks.  I am very upset about this.  Please have a look at my post to Irene to see all the other fiascos that have occured regarding my medical treatment.

    You asked me what books I like.  Mainly all fiction.  Murder, mystery suspense.  I like some supernatiual stuff (Stephen King type).  I am reading Kathy Reichs at the moment and I like Patricia Cornwall,  Also like Martina Cole (most men dont - east end gangster type novels).  My taste is varied, but anything that grips the imagination.

    Maybe it you reply, you can tell me how you take a look at other peoples replies.  I hope you read mine to Irenes because I lost all the one that I previously typed for you.  I hope to hear from you again.  Regards.  Chris.

     

  • Offline in reply to chriswat

    PS Gary.  Well done on your Salsa dancing.  I think that it great for you and will help build up your muscles.  This is when you will see a weight gain.  I wish wish wish wish I could be at your level of recovery and one day be in a position to tell people of my stages of recovery.  I am seeing someone on Monday who I hope will be able to help me with my terrible depression and anxiety.  I will keep you posted if youre interested.  Chris

  • Offline in reply to chriswat

    Very bad weekend.  I still feell that I am getting nowhere.  I have asked for responses from people who may have had the nasogastric tube as opposed to the PEG method of feeding but it seems I am alone.  No responses from anybody, not even this site.  Felt alone before.  Feel even more isolated than ever now.  But I cant blame anyone for not responding since I am so depressed.  It cant be any fun responding to someone in my state of mind.  Perhaps this isnt the place for me, but I thank yoiu all for your very kind responses in the begining.  I might have a look in a week or so.  Perhaps I might be feeling better then.  Chris

  • Offline in reply to chriswat
    Chris .... you are in a bad place at the moment ... i have been there too ... but yours is lasting longer than mine so I am in no way trying to belittle your plight. But we all go through this differently, some get it harder than others and some take it harder than others, there are many factors that make it harder or even harder .... this was never going to be a stroll in the park or something nice from a sweet shop ... this is what we do to survive. beating the cancer is the easy part, but for all of us with oral, throat or neck based cancers, its the after effects that cuase us more of an issue. I am now only 5 months post treatment and i am no where near where i was...but i can see how to get there. I remember my wife asking the medical team hw long it woudl take for me to recover 3 months, 6 month, a year, 2 years and they shook their head at all of them. If i look back now the first three months post treatment were the worst, but then suddenly in month four, little things started to improve. I now realis ethat this disease is going to take a minimum a year out of my life, 6 months dealing with the treatment and after effects, and then six months (if i am lucky) to rebuild my weakened body.....I think what I am trying to say Chris is that it does get better and the only thing you can do is make sure that you are getting nutrients in you ... easy for me to say now, bet even with the peg it was hard ... i was down to one or two 200ml bottles of food and even then i would bring them up, but you have to keep trying getting nutrients inside you ... thats the key. I know it's not easy for you, and you are right i have no idea how bad a ng tube is, but beleive me one of the women on here has told me that have a PEG inserted is more painful than having a cesearean ... her words not mine ... SO to perk you up a little I will tell you a bad joke ...one of many i have A man goes into a petshops and asks the owner" i'd like a goldfish please" "Certainly sir" says the owner "would you like and aquarium" "I'm not really bothered what start sign it is" says the man Boom Boom Oh and by the way Chris, you don't need to repeat youself to everyone we can read all your respones to anyone in the topic ... you when you write you are talking to everyone that has osted on this topic. TTFN Vatch
  • Offline in reply to chriswat

    Hi Chris

    Just wondering how things are going for you?  Are you feeling any better since we last 'spoke'?  I hope that the appointment with your psychiatrist went well and led to some more effective medication for you.  

    Well my dad seems to have bounced back again and is looking and sounding much chirpier than he was a few weeks ago.  We're not sure what has made the difference because he wasn't getting any treatment in there, but he is certainly eating a lot better and has lots more to say for himself which is great news.  He went back home today and the home carer visits are going to be extended a little to help with a few other issues.  We just have to keep our fingers tightly crossed that he stays in bed at night and is not constantly calling for help from Mum.  

    The latest exchange with your GP is beyond a joke isn't it.  I have to admit I laughed a little that you 'put the wind up them' when they assumed the term advocate meant solicitor, but not funny at all really.  You asked about our GPs, well I'm pleased to say I have total confidence in our own, but my parents (who live in a different town) are finding their current GP really couldn't care less about his elderly patients - just a case of ' old age, what do you expect' really.  It's very sad because it was always a wonderful practice (where i grew up) and we felt fortunate that we had 3 very caring family doctors for many years.  

    Although Dad was comfortable and well fed in the care home, he didn't really enjoy being there and they are both relieved he is back home again.  So as long as his meds keep his various medical problems under control and he stops wandering around/falling during the night, hopefully life will be a little easier for them (and us) again - for a while at least!

    Glad to hear that you got a response from the site mediator.  Have you heard yet from anybody else with NG tube or have the site nurses been able to offer any help?  I was sorry to read that you are stuck with it for quite a while longer and hope you are managing to accept this and set your sights on life becoming a lot better come the spring/early summer.  It seems such a long time away at the moment, but it will pass quicker than you think.  Keep your chin up and keep in touch.

    Irene x

  • Offline in reply to isjheatherlea11

    Hello Irene.  Thanks for your post.  I have kept a low profile for a couple of weeks as I was feeling so despondent and depressed.  I felt that to "pour" out my depressive thoughts and negative feelings would only depress others.  Well, I did see a community mental health psychiatrist who was very helpful.  I was a complete mess and in floods of tears the whole way through the consultation.  He explained to me that there was probably an element of post traumatic stress associated with my anxiety because of the radiotherapy and the mask, where I experienced terrible feelings of panic throughout the whole 30 sessions.  He prescribed me some medication, which I started that evening.  So far so good and I have felt my spirits lift, although these tablets do take up to three or four weeks before full benefit is felt.  I went back for an appointment today at the locacl Head and Neck team which is only 10 minutes by car away from me, which is a big bonus. I have now progressed from sips of water (hold breath and take two swallows) to being able to have a cup of tea.  Hooray.  No food yet, even soup.  Ive forgotten what it is like to eat.  I am so glad your dad has rallied and is back at home in his comfort zone.  I hope you manage to get really good carers and as much care as possible for your parents.  Some boroughs are fantastic with this and unfortunately, some are sadly lacking.  With regard to my GP, they have been playing ball as it were, and I only have to ring up (or Sue does for me) and get my repeat meds delivered.  Talking of which, I am expecting Sue in a minute, so I shall put the kettle on and make her a coffee and have my second cup of tea of the day.  I will post again soon.  Chris x

  • Offline in reply to chriswat

    Hi Chris, it sounds like you are making some progress both with medication and your ability to swallow. Maybe just 'baby steps' for now, but the fact that you have moved on from a couple of sips of water to a cup of tea really is moving in the right direction and hopefully you will be on soup before long.  Keep up the good work.  Irene x

     

  • Offline in reply to chriswat
    Hi Chris, pleased to hear you are making progress, you sound much happier in your latest post. Well done for progressing onto tea, I remember almost a year ago I would look forward to my cup of tea as it was all I could manage back then. Now I've forgotten that feeling of not being able to eat as I can eat well again, you will too before you know it. It's all baby steps. Keep going, your doing really well, Nicola x
  • Offline in reply to Nicola2209
    Hi Chris so hows things with you ... i see that you were not very impressed with the quiality of my joke ... I have tonnes of those, but will save yo from them for now Well I hope you have made the turn and got somewhere positive with your medical team, and i see you are now drinking coffee. It's amazing how insignificant drinking a cup a coffee is, but to us its a major milestone and for this reason you take all these little milestone and value things s bit more .... if you have not had cancer you will not know what I am talking about. Friends often ask me know if having cancer changed my life, well it did not change how i look at life i just value the things i took for granted, like taste, eating certain food and my health a bit more, but i have no intention of getting through my bucket list .. not that i have one anyway. So Chris what are you reading at the moment and whats the book like good i hope
  • Offline in reply to chriswat

    Hello Chris, just wondering how things have been going for you this past fortnight?  Hope you are continuing to make progress with swallowing.  Look forward to hearing from you.  Irene x

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