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 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

No,problem just remember phased withdrawal baby steps again when time is right for  him to come off them I did it on the liquid oramorph 1 mil at a time. I now use iglu from boot sessions or any chemist for any ulcers I get it’s sticky but clears them up. I have a friend whose 12 month and she regularly gets ulcers can take weeks for them to go. May e try a few days on the ensures if yiu had them and introduce food gradually again 

Just a thought Hazel x

Hi Zoe,

I agree with Hazel, it could be after-effect of the chemo?

Sorry to hear he is in such pain.

My partner has tinnitus from the chemo and jaw pain from radiotherapy/surgery, which is no picnic either. 

Let us know how the results go. 

L

Hi Karen, 

I started on morphine by mid second week of RT, which I gather is quite early, by start of week 3, I was on the Fentalyn patches, which were gradually increased on strength and topped up with Oramorph as needed. I drove  to hospital appointments every day, apart from a few, especially in the last week.  Consultant said that it was fine to drive but I wouldn't take any top up morphine until I got back home. Take the pain meds... even with the pain meds I couldn't eat but at least I could sip the protein drinks and water, and cooled tea.  I found putting ice into the water really helped, both with soothing the throat and getting fluids in.  I used to get the big ice cubes used for cocktails because they took longer to melt. 
 

from how you are feeling, it sounds like I felt. Just focus on getting to your next session. That's the only way I managed to get through. I didn't care about anything else.  One step at a time and you will find the strength somehow. ️
 

I shall check back every few days to see how you are getting on xx

Hi Karen, 

I started on morphine by mid second week of RT, which I gather is quite early, by start of week 3, I was on the Fentalyn patches, which were gradually increased on strength and topped up with Oramorph as needed. I drove  to hospital appointments every day, apart from a few, especially in the last week.  Consultant said that it was fine to drive but I wouldn't take any top up morphine until I got back home. Take the pain meds... even with the pain meds I couldn't eat but at least I could sip the protein drinks and water, and cooled tea.  I found putting ice into the water really helped, both with soothing the throat and getting fluids in.  I used to get the big ice cubes used for cocktails because they took longer to melt. 
 

from how you are feeling, it sounds like I felt. Just focus on getting to your next session. That's the only way I managed to get through. I didn't care about anything else.  One step at a time and you will find the strength somehow. ️
 

I shall check back every few days to see how you are getting on xx

Hi Lori

thank you for your reply. It's very kind. I have just finished six gruelling weeks of Rt & CT. I also had to spend six days in hospital, dehydrated and had feeding tubes fitted, I think they are called NJ. Best thing ever. I was and currently am unable to swallow. My throat and mouth are too painful plus when I do try to eat, the food turns to a horrible texture, makes me gag and tastes revolting. The feeding takes 10-12 hours overnight dripping in so I spend a lot of time in bed. The docs say morphine, morphine, morphine and I am happy to oblige! 

Like you I drove myself apart from a couple of days when I felt too weak and didn't take the oramorph before driving.

Good advice, one step, I just have to rest up and recover. Can't talk properly either.

The hardest part for me now is waiting to see if treatment has worked. Takes 2-3 months. That's going to be difficult.

Do you mind me asking how long ago was your cancer? What type? Hopefully You made a full recovery. 

Once  again thank you for taking the time to reply.

best wishes.  Karen

Hi Kay hang on in there I had n g tube in for 45 days well done on driving no way coukd I have driven.foid and drink will come back to you  the n g tube allows you to recover without trying to maintain nutrition and hydration. Just keep trying to eat if you have the high calorie food drink persevering with them is worth it. I used them whilst trying to start food baby steps. 
dontvstress about scan you've come this far the rest will follow. Have faith in your team and treatment. 
hazel xx

Hi Kaycee

I had cancer of the soft palate, with possible spread to neck nodes. Extremely lucky to have caught it so early. Consultant said that it was only a 'spot' but I later found out that there were other similar suspicious spots in the same area but they didn't biopsy them all.

I finished treatment May 2019 (I was lucky I only did 6 weeks RT), so I was 6months behind Hazel.  I went into the treatment with eyes tightly shut! How foolish was I (don't answer that, ).  Those two weeks post treatment are hell! When I had my last weekly reviews during treatment, I asked how long would it be before I could eat, and they said you should be able to eat a few mouthfuls by 6 weeks, (at that stage I thought, I will  be eating in 3 weeks...I'm that sort of person).  It was longer than 6 weeks in the end, hahaha.
 

Around 3 weeks into post treatment is when I felt motivated enough to find out some answers that were just not available from the hospital teams. I wanted a step by step idea of how long before I could eat and what, find out what symptoms other people had and how they were coping with them.  This is when I stumbled across this website and found the exceptional help that I got from Anchorman (Ian ) and Radioactive Raz (Hazel xx) logs.

far far more informative than anything I got from Macmillan, my dietician, my consultant and various web sites.

Now my diet is fish, fish, fish, and more fish.  It was great when I graduated to fish in batter.... I can now eat chicken breast but only mini fillets, and burgers and sausages. The latter 3 can be hit and miss and on bad days I struggle to finish the fish. Most desserts are fine (acidic fruit, can be dodgy).  

even at 1 year 4 months post treatment, I still have tender spots on my tongue, inside cheeks, etc. I've been through earache problems, tinnitus, problems swallowing and I've just developed problems with blocked saliva ( I think...that's for the next consultant review....soon). 
 

In spite of the fact that I still lose taste sometimes and mouth is temperamental, I do actually enjoy my food (as long as it's me catering for me).  It was WORTH IT ️.

My mantra in the long weeks of early recovery, no matter how crap I felt, 'every day was one more day nearer recovery'. Even when I felt worse than I did the day before, I still counted it as progress.

Everyone is different, every recovery is different and I wish you all the very best on your recovery journey.  I shall keep popping in, so if you do keep posting, I can see how you are progressing. And you will be helping others that come after you in their own personal journeys.

Take care, try and stay positive. X

Hi Lori

Thank you again for your very informative reply. This is only week 1 post treatment. The docs did warn me it would be hell  and they were so right. I'm struggling to swallow anything and pain in throat seems to get worse not better. Good to know there is an end in sight. Thank goodness for morphine. Even taken with a syringe into my mouth it burns my throat.

i can't wait until this recuperation time is over. I'm really miserable. Everything from the neck up hurts!  

I wish you well 

Karen 

Hi Karen

I hope that this helps! I didn't say anything before but about midway through the second week of post recovery, I did actually start to feel a tad better and things were definitely changing in my mouth.  This was only a few days after I probably hit rock bottom, I had to be driven to get some meds and I couldn't even walk into the pharmacy unaided. That was a really bad day, yet on,y a few days later I realised that I did actually feel a bit better.

I hope that you are very near that first day of realising that you are really on the road to recovery.

I seem to recall that I mixed my morphine with water, but please check first, I might have made that up, also the hospital gave me some sort of liquid ( sort of gaviscon texture), which had a mild painkiller in it. So I used to slosh this around my mouth first and then do the meds, followed by mouth cleaning.

are you on pain patches a well?  Sorry I can't remember 

lori 

take care xx