Met Oncologist for first time today

Hi Mrs Wozza,

I was terrified when I was about to start my treatment. I was dreading the mask as I tend to be a little claustrophobic. I got through it with help & support from the cancer nurses and I'm still here two years on.

My cancer was different to yours, my tonsil but for me. I can definately say the operation was the worst bit and has had the longest lasting effects but I'm still here and enjoying life and doing almost everything I did before. Diet has changed but most things are back on the menu. My consultant did say stay positive and you'll get through it better. I had an NG tube for 4 months. Not as bad as it sounds. I was terrified when they wanted to remove it but I managed. They def' weren't going to put it back in!

Thinking of you and wishing you healing thoughts. If I can do it anyone can.

Val there was talk on here not long ago about the different chemo regimes; some places do it weekly in smaller doses and some go for bigger doses in two or three sessions over longer (sometimes just one depending on reaction), down to the oncologist's opinion I think. I (as it says below) was scheduled for three in three week intervals but was too ill to cope with the third; hospital agreed with me on that even though I'd made my mind up to refuse it even if offered.

The RT is the main thing for us, chemo just gives it a little nudge in the right direction. Given my time again I'd still have gone for a PEG/RIG despite the sort term discomfort of the fitting because it's hidden, naso gastric is there for all to see but that's just personal choice.

Strangely when I got to the point that you're at now I'd gone beyond scared (unlike my family) I'd just got to a fatalistic place where I thought, "let's just do this now and see what happens".

Your future will certainly be "different" and very hard work at times but you can do this, honest xx

Thank you Rosie,

It was lovely to hear from you thank you for replying and letting me know there is light at the end of the tunnel. 

I had an NG tube put in with my operation. It was a long 10 hour operation but the one thing l hated the most was the trachioctomy. When they came to take it out l was scared that without it l wouldt be able to breathe. Can you believe they had to have another ready to put in in case l couldn't. They had to talk me into having it removed and a spare one at the ready was my terms lol!!

Sadly my diet has already changed due to having most of my lower teeth removed but l can see it being difficult to swallow etc during treatment. Think we have to trust the team and they assured me they are there 24/7. . I was asleep when they put the NG tube in but a lovely young nurse pulled it out on the count of 3.

I did put l'm having chemo for 5 weeks, l meant chemo 5 times, once a week. 

As for my missing teeth, if after a couple of years everything is okay they will put in implants. I think these would probably be more cosmetic as l couldn't see me ever eating a crusty piece of toast ever again. 

Thank you Rosie x

Val

Hi Mike,

Thank you so much for this information.

After having my lower jaw replaced l do look a little different to how l did before but  it improves daily. I had half hour operation last Friday under local anaesthetic to remove some of the flap enabling my lips to come together.  My surgeon knew l would need radiotherapy and told me they would rather bulk it up knowing it will shrink because they cannot increase it later but they can make changes after treatment. When l first came out of hospital l did feel people looking at me but l did have 2 plasters on my jaw and one across my throat. Thinking about that perhaps an NG tube wouldn't bother me so much although they do get on your nerves. It's the thought of having a PEG fitted makes me cringe a bit.

Since last June, knowing l had something wrong with my jaw and trying to  get it diagnosed without luck. (if l think about it too much l could scream). I was in so much pain and 3 dentists gave me false hope.

When l finally got to the dental hospital end of November and it was confirmed l had jaw cancer it meant me having 3/4 of my lower jaw reconstructed using a bone, tissue and skin from my left leg. If l had been sent earlier it would have been a much smaller operation. 

Operation was 6th January. I cannot believe l went through all of that and l'm now eating, walking, climbing stairs, talking in one month. If  anyone reads this and has to go through it l would say first couple of days were tough but l was in no pain at all throughout just a bit of leg discomfort.

I totally agree with you that you get beyond scared. I went into the operation totally focused and determined. 

In my head now l have to get ready for the next battle. That's why l'm now needing to know the possible problems l may face. 

Thank you Mike, sorry for the rambling on

Val

Apologies are not allowed on here Val; rambling most certainly is, never apologise for how you're feeling, and rambling isn't really "rambling", it's just expressing your feelings honestly no matter how many words it takes. Don't change.

Hi Val

you will get there ,yes radiotherapy is tough but look at me I did it and I am a wimp. Take consultant and oncologist advise they do it daily.If you are  happy with the NG tube as youve had  it before express your wishes to them. The PEG is nearly always put in before treatment whereas the n g tube can b3 put in any time. I wasn’t sedated for mine going jn it wasn’t the most pleasant experience but they have me a glass of water with a Star was to drink whilst putting it in and it did help.The first tube was in 21 days then the next one was due for replacing and I thought right it’s been in 6 weeks so will give the Ensure drinks and bits of food another go and I maintained weight so anither wasn’t needed .

Any questions just ask or message me.

Haze xx

Val you’ve done brilliantly so far

Its amazing how resilient we all are

i agree with everything that’s been said so far. I can add that the cleaner you keep your mouth and the more fluid you can take the better you will cope. 
Like Hazel I had an NG tube out in when I was too sore to eat. It was not as unpleasant as some make out. They get you to drink while it goes in do you just swallow it. 
You should get a box of pH strips to check that it’s actually in your stomach before you put anything in it. They are easy to manage and easy to take out yourself ( really!!! ) when you don’t need it. 
Morphine made me quite nauseous throughout and I did throw one tube up. 
I’m glad I had one rather than a PEG

Good luck

Hi Val

Sounds like you are doing brilliant. I love this group it's so helpful , even to me and it's my hubby that has base of tongue and 1 affected lymph node . He hadn't looked on here once , but believe me I never shut up about this group !! 

He goes in to have a Rig fitted , staying overnight Monday . Home Tuesday then he starts 6 weeks of chemo radio day 1 , 4 days radio with weekends off.

He wasn't offered anything other than the rig . I'm concerned that he is having it done Monday and starts 2 days later with his treatment . But I suppose they know what they are doing 

Lisa x

Hi Lisa,

Truly hope l've made the right decision because drinking and swallowing an NG tube sounds pretty tough to me. We never actually made a decision. Guess it's the time factor. My Oncologist said from talking to me he thinks an NG tube would suit me better. Don't know if it's because l am eating so well now but now l don't have a sore mouth. 3 years ago l nearly choked in front of my Grandson and Husband. It's a fear l have now and the thought of lying in a strapped down mask coughing and spluttering, perhaps feeling sick frightens me but l am sure l will be fine.

Val x

Hi Val the n g tube isn’t that bad it’s a few moments of feeling uncomfortable. Re lying on table strapped down in all my 35 sessions i never  coughed or spluttered once! I just thought of bikes rides and walks took my mind right away from everything. But don’t be scared the radiotherapy teams are watching yiu all the time ,if yiunwant they will speak to you over intercom telling you what’s happening ,mine had CD players in the rooms so took my own music everything from Abba to Springsteen ,Queen we’re  one of my favourites I had some real melancholy ones some days others I was singing in my head to Dancing queen ! If yiu need treatment to be paused all you have to do is raise your hand or shout out.

hope this helps 

Hazel,xx