Hi there,

Many thanks Emma & Hazel for positive comments.

Well my first week is over and touch wood - so far so good.

In a routine now and all my appoitments are 9.00am which I prefer.

I am literally around 8 mins from house to hospital and have a free daily car park ticket and park right outside dept.
Have been taken on time and Wed appt was taken at 8.58 and back in car 9.15!

Very slick operation and staff are brilliant.
Made a large batch of home made tablet for the staff Thursday which they appreciated and seen advanced nurse practioner who advised of potential side effects to come.
I'm sure they will but will deal with them as treatment goes on.

So week 1 has been absolutely fine with no real side effects and apart from little more tired, I just have a power napo and fine again.
Will update end week 2 and hope more of the same.

Best wishes to all

kind regards
ian

Hi there,

Well week 2 is now over and again so far so good.

Little more tired and would say started to notice more mucas but that apart I have not really felt any discomfort or noticable side effects.

Aware goinf into week 3 next and potentially when more sied effects will kick in but will have to deal with as and when they arise.
Will post another weekly update next week , good and bad and hope helps someone in similar circumstances.
Happy to answer any questions based on my own personal journey.

Staff in radiotherpay are wonderful and consider it a blessing we have the wonderful NHS.
Not always right but by and large wonderful system and people and when you consider the cost of treatments we do not have to worry about the cost or health insurance etc over and above the diagnosis.

Kind regards to all
ian

Thank you all for your good advice. Apologies for taking so long to reply but I was having issues logging in. 

I have started week 3 of Radio & chemo and would welcome ANY advice as my throat is extremely painful. I am crying out in pain just from swallowing saliva. Eating & drinking  is  impossible. I have a pain patch and yesterday I was prescribed Co-Codamol with the usual side affects but can't function when taking them. Has anyone tried acupuncture for pain? I am so low this morning I feel like letting nature take it's course.

Hazel recommended soft toothbrush and humidifier both of which I have bought. 

Thanks for any advice

Karen

Hi Karen

Ok week 3 of treatment I would suggest that you need to speak to your support team and get your pain medication assessed. 

I was on oral morphine week 3 then that was upped to MST morphine tablets that you take every 12 hours so contantly in your system.

Pain management during treatment can be controlled and co codamol in my view would certainly not be suffiecient at this stage.
The first couple of weeks are generally fine and not much happening but it does just to impact and have an effect from week 3.

Please phone them/meet them urgently and they can sort out increased pain medication today.

Not many will sustain treatment and recovery period without proper pain medication and the doses will be as you required.

I have my mantra of drinking as much water as possible and even small sips often helps. It keeps you hydrated and also uses throat muscles.

Please let me know how you get on Karen but please speak with support team as they can prescribe medication just now without going through GP.

regards

Ian

HI karen

You will get through it but it is a long and hard road I'm sorry to say.  My partner had real problems with eating and swallowing eventually having a drip in because he was struggling so much and losing too much weight (too stubborn to let them know how much pain he was in and didnt want to stay in hospital any longer).  As Ian advises speak to your support team ASAP and ask for medication that will help ie morphine and keep trying to sip water.

hope you get sorted as soon as possible

Michelle

Hi Karen

just confirming what Ian has said yiu need to contact someone  ASAP at my worst I was on 8 co codomol a day taking laxido to make sure  I went to loo that’s vital plus up  to 40 mil of oramorph you need a constant amount of painkillers in your system. Do you have a peg or n g feeding tube if not sounds like you May need one push for it if you are struggling now you could be like me I had n g tube in for a total of 45 days .If they say  no  to covid 19 reluctant to give it you do push for it I know plenty who have struggled but eventually hospitals have given them n g tubes. 

Dont give up  it’s a mere blip in yiur life’s albeit not a pleasant one but don’t try and struggle as for next few weeks the pain will be there . Glad  you got toothbrushes ask hospital for loan if a nebuliser as unfortunately yiur next problem will probably we the onset of mucus copious amounts of it. Sorry to be bearer of bad news but keep at it .Do yiu have anyone’s who can move in with yiu to helpmyiu especially driving to hospital ? It’s such a sad time for you as well sending a hug your way know it’s no help .

Hazel xx

so sorry for your loss , so sad to have the new and then lose our husband ,  sending a virual hug and a prayer.  A friend at work got a mass card in Ireland for my partner and he kept it with him all the time as Hazel and Tesco say every little helps  Just knowing people care defo helps.

Hi Karen we are all a bit different in terms of diagnosis but as already said ask someone from your team about pain relief, I found the Difflam that I was given was very good it anaesthatises your throat prior to eating or for general pain control, if you cant swallow solids your team should advise that you go onto the high calorie drink suppliments..cant remember the name? At least then you are getting some nutrition.

Dave

Thank you all once again. My main issue is swallowing. I can tolerate the sore mouth and blistered skin but I virtually screamed the house down this morning when I swallowed first thing in the        morning. Feeding tube has been discussed but they are saying last resort. Because of stomach complications it would have to go up my nose and into my stomach that way. The though of havinf a tube touch my sore throat fills me with dread. The numbing Oxetacaine mouthwash helps a tiny bit but not enough.

All good advice.  Thank you again and Hazel, my nephew has moved in to look after me. I am lucky to have him

Karen

Hi everyone,

I am new on this chat so I just wanted to introduce myself in a few words.

My partner was diagnosed with oral cancer in February, spread to 2 lymph nodes. He went through neck dissection + 6 weeks radiotherapy + 2 rounds of chemo (was supposed to have 3 but his kidneys couldn't handle it). Now is the waiting game of going for a check up every 2 months for the next 2 years...

Everybody on here seems to be doing so well despite these such difficult circumstances!

There are 2 questions I'd like to ask:

- Who here has gone through a cancer that was not HPV? My partner is HPV negative and from my understanding it does affect the prognosis

- Any dietary recommendations? You read so many contradictory information, that sugar, fried food should be avoided...

Thank you and all the best

L

Hi 

it's Hazel again re prognosis ask your consultant as we aren't medically qualified to answer. I was h p v  16 +was  told lifestyle plays a big part. Ie smoking and drinking so it's not a one rule for all sorry. At the moment eating is far more important than calorie counting in first year I was advised 2500 calories a day to allow my body to repair itself. Now I watch what u eat but not to detriment of not living. 
Hazel x

Thank you Hazel!

I see what you mean -sorry I didn't mean to ask for prognosis specifically, but more wondering if there were also HPV negative people who went through treatment and remission :happy: 

Thanks for the diet tips! My partner has already recovered about 70% of his sense of taste, and already wants to jump on the ice creams and burgers (he eats healthy otherwise, generally speaking). I think he just missed that stuff a lot!!! :laugh: And I don't want to be a party pooper! 
 

L

Thank you Hazel!

I see what you mean -sorry I didn't mean to ask for prognosis specifically, but more wondering if there were also HPV negative people who went through treatment and remission :happy: 

Thanks for the diet tips! My partner has already recovered about 70% of his sense of taste, and already wants to jump on the ice creams and burgers (he eats healthy otherwise, generally speaking). I think he just missed that stuff a lot!!! :laugh: And I don't want to be a party pooper! 
 

L

Hi 

Let him eat what he wants for now plenty of time to calorie count later lol. Yes I do know if people who have  been h p v -   A lady in my small Yorkshire village ,small world she contacted me unknown to where I lived she said a nurse and was treated at my hospital with same  oncologist and same Macmillan nurse. She has her scan late June 16 weeks or so after treatment finished she was all doom and gloom but rang me with tears streaming down her Face she was  given the same result as me they don’t use the words all clear. They say the scan has shown no,positive uptake of the f dg tracer or similar which means at that moment in time I was cancer free .You only get the magic all,clear after 5 years , but once you get to 2 years post treatment the chance of any reoccurrence is extremely low. So carry in planning the hard bits done and recovery sounds like it’s going well for him. 

Hope this helps Hazel x

ps good luck with burgers ni way can I eat them yet ! But has I always say we are all different I can do chocolate. Plus I never lost my taste buds. If yiu haven’t seen  I have a blog with links to other sites www.radioactiveraz.wordpress.com   

Hiya, just briefly because it's dinner time and I have already added some posts.  My oral cancer wasn't HPV.  I am currently in remission. Finished treatment May 2019.

Hazel is spot on, I wouldn't believe any consultant worth his salt would say that you are cancer free, because not even PET scans can be 100% fool proof (although it's pretty accurate). 

I wish you Both all the best. 
xx