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

Hi Ian

Thanks for your reply. I'm taking on all the advice I can get. I will certainly read your blog. I want to try and stay off morphine as long as possible (although I won't be a martyr  to pain) so that I can drive to treatment. Unfortunately my husband died two weeks ago and I am struggling on my own. The hospital is difficult to get to on public transport and Uber us £18 each way. 
Thanks again 

best wishes 

Karen

Thank you Dave

I am so pleased I joined this group. Getting lots of good advice and I have already acted on buying mouth stuff. 

I have all of the above apart from oramorph but should have it this week. The Pregablin I only take at night as it completely knocks me out. Good to know driving is ok. 
Trying to stay positive but my husband died two weeks ago. I started treatment the day he died! 
thank you again

best wishes

Karen
 

So sorry about your husband and then you get diagnosed too, life can be so cruel.

Dave

Oh Karen so sorry to hear about your hubby how cruel can life be . Just ask anything in here ine if us will get back to you. Between us all we are fountains of knowledge most of it useful . Do you have a Macmillann or cancer nurse assigned to you ? If so they are also pretty good.

sending a Sunday hug. If u want to send a friend request please do 

Hazel x

Adding my support Karen, devastating times for you, but on this thread, with Ian, Hazel and Dave, you've got the best support you can get. My heart goes out to you, in my prayers (many dont, i do, no harm in it ). Best wishes, Graeme.

Hi Graeme 

include you in the weath if shared knowledge we all have ! 

Nithing wrong with prayers but I took help wherever I could get it including carrying a bottle of holy water from Lourdes with me.My friend in York her vicar included me in prayers every week ,In the words of Tesco every little helps.

Hope you are well ,as u may have guessed our flights got cancelled but fingers x for ferry mid September 

Hope you are well Hazel x

Hi

This was taken from Gov website and seems like you should be able to drive with morphine, however,

If in doubt always talk to the professionals

Prescription medicines

It’s illegal in England, Scotland and Wales to drive with legal drugs in your body if it impairs your driving.

It’s an offence to drive if you have over the specified limits of certain drugs in your blood and you have not been prescribed them.

Talk to your doctor about whether you should drive if you’ve been prescribed any of the following drugs:

amphetamine, for example dexamphetamine or selegiline

clonazepam

diazepam

flunitrazepam

lorazepam

methadone

morphine or opiate and opioid-based drugs, for example codeine, tramadol or fentanyl

oxazepam

temazepam

You can drive after taking these drugs if:

you’ve been prescribed them and followed advice on how to take them by a healthcare professional

they are not causing you to be unfit to drive even if you’re above the specified limits

hope helps

regards

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

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

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

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   

hi I partner has throat cancer he finished radiotherapy on April 10th , he has really suffered he has lost 4 half stone and been in constant pain , his pain is from his ear up to his head , has your husband has this pain ? They have given him a mri last week ,  I’m hoping he is all clear but he has got another ulcer come up too , his was hpv negative, I’ve bedn reading all these posts but don’t know how to put one myself ‍♀️ Hope your partner has a full recovery xxx

Hi Zoe this is Hazel well done on partners gettung all clear. Has he mentioned pain to his consultant or Macmillan nurse ? Did he x

have chemo ? It could be tinnitus or lympodema related ?

Id you want to start a  new thread  top left of this my page under post to forum you put title in the sub heading probably best living with cancer hooe this helps 

Hazel x

he hasn’t got the all clear yet , sorry I’m hoping he does , we need to wait up to 14 days for results, we have mentioned it , they said it’s not normal but didn’t give us much to go on , they also can’t dp a biopsy yet on his new ulcer because he is still sore, I’m worried about it and this is going to be a log 14 days , I have put a post on living with cancer and spoke to one person , I read your blog , when could you eat normally without throat pain ? Xxx thank you for replying xxx no chemo just radiotherapy xxx

Hi Zoe. It’s a hard one to answer I was still on painkillers up,to 4 month post treatment  my oncologist and me I decided the clue was in the name pain killer so devised  a phased withdrawal I never really had pain I had difficulty eating things but that’s to  be expecged the amount of radiation and the sensitivity of our mouths and throats mean it’s in early if the most brutal cancer treatments but with excellent prognosis .Even now I can struggle eating something s in early day the next day it’s all ok this isn’t a common theme .Am sure all will be ok it really is early days on the road to recovery some days 2 steps forward one step back.Roday I had rate rib eye great yesterday home made spaghetti Bol the mince wasn’t difficult not painful but swallow . Ulcers can come by j toducing too many new foods as well I occasionally get a small ulcer if I eat something sharp or citric.His throat will still be swollen also the tendons in his neck do harden which all have a knock on effect 

good luck for results you e come this far. 

Hazsl x

that’s made me feel more positive  about the ulcer, he is on fennel patches ( same as morphine) and morphine liquid  every day before food , he is a week off 4 months post treatment, he also has trismus , thank you again hazel xxx