feeding tube

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hello,

    i just wanted to share my horrible experience this week, i had the feeding tube fitted on monday, after 4 hours the surgeon came to see me and said "don't worry, you'll be up and about by tomorrow"!!!!!??????wtf????????

they booked me a taxi with patient transport to take me home and there is where the ordeal began -4 and a half hours after surgery, i was put into the back of a normal taxi, where 2 other people were crammed into this taxi already, one in back one in front, the driver was a young man in his 20's clearly not trained in how to drive when you have someone in your car who has just under gone surgery, he was fierce on the break and accelerator, so it was constant jerky movements, which caused me no end of pain in my stomach, then took one of the patients home, instead of going the A road or motorway, he preceded to drive down country lanes that were winding, incredibly sharp at the corners, which went straight to my stomach and some un made at quite a pace, as you can imagine this all reverberated on my stomach, i couldn't sit anyway, i was half laying down clutching my stomach in the vain hope i could minimise the impact on the recent surgery, but to no avail, most of those 20-25 minutes consisted of me with my knuckles rammed in my mouth to stifle the screaming with pain and crying my eyes out because it hurt so much, by the time i got to the front door of where i live i felt i had been in combat, i got in and checked my dressing, it had bled, i am 5 days in, still in pain and finding it difficult to walk or do anything, with an innate fear of getting into a car again and am expected to start radiotherapy and chemo this wednesday, which is now filling me with fear and dread, as usually before chemo i manage to fortify myself, with a large does of healthy eating to help combat the ordeal of it, this week, i have only been able to make myself a sandwich a day and don't want to attempt both these treatments now and as i said the thought of getting into transport with how this still feels on my stomach makes me want to puke, has anyone else had such a negative impact experience whilst doing this treatment?

  • Oh Ichi I am so sorry. Your whole journey has been an episode of disaster. I hope things pick up for you. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • I feel your pain... I too, had an unpleasant experience with my PEG, and was held back after surgery and fed painkillers before they released me. Get someone to check it over when you go for your treatment... I had to have mine loosened a touch to relieve the pain.. hope things get better for you..  

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi Ichi 

    so sorry to hear about the horrible journey and pain from feeding tube insertion.

    I also had a tough time aftet having 8 removed under local anestetic , I had peg surgery and was in excruciating pain for two days before I was straight into first overnight chemo and radiotherapy .

    Body couldn't cope with it all ( not enough time to heal)so ebded up being admitted to hospital on same day. this was first of many hospital stays nearly 5 weeks out of 7 but here I am in sunny Cyprus 5mths after my last radiotherapy.

    My top tips are stay with the amazing people on this group I wouldnt be where I am today without the support I tecieved from Hazel and Dani x Reading other peoples posts gave me hope for a brighter future x

    Dont be in pain … make sure you are on top of Medication pain meds and fluids! all essential .when its healed keep your peg noce and clean /dry plus turned if its PIG/PEG tube nurses will show you how to do it x 

    I still rely mine .I had to use machine to feed at very slow pace to start with as I was constantly vommiting but now I bolus feed ( hold tube up put feed in and let it flow naturally into stomach.) its luke second nature to me now irs kept me alive and Im very thankful for that x Any issues at all tell your CNS MCMIllan Nurse or a member of your team asap.

    As for transport I caught two taxis forst was horrific like yours second one was fab very slow smooth ride I take pillow everywhere to sit on x

    Hope the pain gets better my first week was bad second week slightly better then ok x

    All the best for your treatment you can do this … everyday I thought I couldnt as I was so ill somehow my little body pulled me through x

    Debbie

  • Hi Ichi

    Your experience sounds really awful, I am so sorry. Can you get your PEG site checked by your medical team and get some decent painkillers?

    I understand your fear of getting into a car again. Can you ring the service that provides the transport and discuss your concerns and ask if they have a driver who is a bit more gentle on the accelerator or could you explain to the driver about your concerns and ask him to go a bit easy on the corners ? 

    I had a similar experience  (although not car related )where I felt I had been in combat after a visit with my prosthodontist when he took a mold of the inside of my mouth prior to making dentures. I have very restricted mouth opening due to my ops and radiotherapy and it was absolute agony. I had a panic attack at the end of the session and I have never had one before. I was really apprehensive about seeing him again and took my husband along for moral support. It turned out fine though and the thought was worse than the experience with my next appointment. I do hope the same happens for you and that the thought is worse than the actual experience. I do have to say that my prosthodontist is actually really nice and it was just an unfortunate experience.

    Hang in there.

    Lyn

    Sophie66

  • I am so sorry to read this. I can tell you that getting the tube was the most painful experience of my life. Worse than childbirth. I was in agony for 5 days. Could not stand up properly. Thankfully the hospital that inserted its policy is 24 hours there before release. Took a few weeks to settle. 

    if I was asked what was the worst part of my treatment it would be this. 

    hang in there. It does get better. Keep the pain killers close 

  • Ugh x this sounds rotten for you. I had quite an ordeal with PEG fitting. First attempt was a failure. I was not properly sedated so felt everything. It was such a frantic procedure and then just as they were making the incision my stomach deflated and they had to abandon it! Dr basically said it was my fault because I burped at the wrong time (not that I was in control or even aware that I was burping the air they were pumping into me!). So, I ended up having the procedure done just a few days before I started treatment. The 2nd attempt was much better but meant that I was still sore and quite a bit of discomfort for daily hospital trips. I remember the panic of going over bumps etc on the car journeys to the hospital every day. Luckily, the incision site healed pretty and the discomfort eased pretty quickly. That first attempt was probably the most traumatic part of my whole cancer experience. And then I didn't use the damn thing as I managed to eat and maintain my weight throughout my treatment. It was such a joy when I had it removed... Whilst things probably feel pretty grim right now, this will pass. Sending you love and strength.

    Lx 

  • hello L what a horrible ordeal to go through, it's not as if you have enough to contend with anyway when you are diagnosed with cancer and all the fears and worries that go with that, i hope today, now things have eased for you and you are now on the mend from it all one day at a time

  • It is awful! Makes me glad I had an NG

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge