HI Bobby 

Glad you got through your treatment ok and hoping the scans will be fine. Glad you are also speaking to Alli. We chat on here too. 

It is nice to hear from someone who has been thorouhg it and there are a few good people on here. Have a friend going throuhg it now and unfortunbately he must be having a rough time as i have not spoken to him since his second week of treatment - 6 weeks chemo and radiotherapy. I was lucky i had to have a tonsilectomy and boy that was painful and i still have problems eating but mine turned out to be necrotising granulomatous inflammation so still under research. Anyway just wanttes to say hi and good luck with scans. 

Elona x

Many thanks for your reply and words, all our journeys are similar but some have better outcomes than others.

I will have to look up that cause/condition you mention. 

stay strong and safe

Bobbyx 

Hi Alli.

Thankfully i was much younger than you..lol am 53 in November .

Delighted you are feeling better.

As i stated journey is much more than just the chemo and Radiotherapy, so many side effects can happen with different aspects of the treatment. 

They will explain side effects of treatment, to start with i got about 7 back teeth out, as concern with muscles in jaw area getting affected, which means Dentist could struggle to remove teeth out, if you cannot open your mouth as much post treatment.  6 months post my Radiotherapy and my mouth cannot open as much as it did before, but maybe enough for dentist to reach. 

Regarding the PEG tube, TBH this was a lifeline. Towards end of 2nd week of Radiotherapy i was struggling to even drink water ( it was as if i was swallowing razorblades) so majority of medicines and Food supplements went through the tube. It was a bit uncomfortable for first few weeks, but you get used to it. (Everyone is different though)- certainly keep eating and drinking as long as.possible...they will maybe give you morphine as part of pain relief, suggest you try and get off that asap, as your body can get used to it without you realising it, and side effects when reducing the doseage is not the best...

Chemo is tougher than you think...try and rest as much as possible after each dose (could be a few days after it starts to make you tired etc). Radiotherapy i had 30 rounds too, does go in quick....i got Epimax cream for neck area, use from early on,,,your neck will probably breakup at some point ( mine did in last week) even after last treatment, Radiotherapy still works away for few weeks, so body will take few weeks post treatment before body starts to heal. .

Few suggestions of things to get.

Cuprex soft toothbrushes 

Humidifier for your bedroom especially (as mouth slowly stops producing saliva)

Large pillows to help to help.you sleep upright, as glut and flem can gather, so makes it easier to sleep elevated more.

Hankies...you will need lots...

Try and avoid processed foods, as they will start to taste yuk, i found simple things kept there flavour more i.e Eggs..

As you throat starts to break down, you may find basic things like small.pots of custard, jelly,.porridge easier to eat.

As you come out of treatment and get to point of able to eat again,, keep trying different things until you find things you now like....

Remember in most cases, what you can eat and drink just now, will dramatically change, you maybe lucky, but just be prepared and enjoy the chance to redo your eating habits. (For me i have found i am now eating much better than i did before, do not eat any sweets, crisps, fizzy juice etc.....and drinking much more water than i ever did, so every cloud has a silver lining. 

Treatment will tire you out, and you will get down etc,,,but it will improve in time, rest, but also get out and excercise if you can, will help clear your head a little.

Sorry this message has went on a fair bit...lol.

Keep me posted..hope and pray for you...

Bobby. X 

Hi Bobby,

Thank you for sharing your journey, I've found it very informative. My partner was diagnosis last week with HPV through cancer, at the base of the tongue and lymph nodes. He's had all the scans, etc and yesterday he had his dental assessment. Next week he has extractions, hopefully it won't be too long before he gets his chemotherapy and radiotherapy planning appointments. May I ask, does the feeding tube go directly into the stomach? He has been told that he may need one. 

Thank you and I hope you are feeling well.

Shellb

Hi Shellb.

To confirm yes, it is connected straight into the stomach. 

The procedure to get installed, you are slightly almost knocked out, the enter a camera and the tube down the throat straight to the stomach, they inflate the stomach and shine a light through the stomach, then an incision is made from the skin approx 2 inches above bellybutton, then pull the tube through, a device is attached to the stomach side so it can not be taken out easy. You can warn your partner as you become awake, you do burb etc loudly (as they inflated the stomach lol) is a bit uncomfortable first few days, but it does get much easier, it can be a true lifeline. 

Hope all goes well, and feel free to contact anytime.

Thanks 

Bobby

Hi Bobby

Thank you for the tips brilliant idea about the humidifier will get one of those,  I'm still straying positive although the treatment seems brutal my daughter keeps saying how strong and brave I am just hoping that I don't end up a snivelling wreck half way through lol, woke up today feeling a bit rough and still have ache down right side so hope its nothing to worry about before the cancer I wouldn't have give it a second thought, how are you feeling didn't ask before but you said you had 13 lymph nodes removed were they on the same side as the cancer and will you need any more radiation or chemo? Will also get some more pillows for bed and stock up on tissues trying to get prepared have got tv for bedroom and lots of films and box sets and lots of books for days I feel rubbish

Let me know you get on, take care

Alli x

Hi Shelb

Hope you don't mind me messaging you just read your post and looks like I'm at the same stage as your husband although cancer in tonsil as well, my dental assessment is tues and getting scan and mask fitting, sounds like the process has been a lot quicker for you with the scans and biopsy and then in to have camera down its took me nearly 2 months but will be starting treatment soon I hope, hope your husband's treatment goes well

Take care

Alli x

Hi Bobby, 

Thank you so much for this information, I will pass it on to him. We are still waiting on planning appointments, so hopefully not to long to wait now.

Hope you are staying well.

Thanks

Michelle

Hi Alli, 

It's good of you to message me, thank you. Yes he had a dental assessment on Tuesday and will be having extractions next Tuesday. That is as far along as we are at the moment, we are still waiting for planning appointments. 
I hope your planning appointments and mask fitting go well, good luck with your treatment and please keep us posted.

Best wishes 

Michelle