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 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

the results come back all clear , it’s so strange his pain from his ear up into his head has been really bad this week , he has lost more weight too , it’s 2lb off 5 stone now , he is eating but it hurts still , he finished treatment 10th April, xxx

Hi Ian, I was advised to read your blog by a moderator; I’m just into week 2 of 7 for treatment of tonsil cancer. I’ve started to experience thickening of the mucus in my mouth and note you bought dehumidifiers to help. I’m just wondering how they work and whether you could share the name or a link to the ones you had (I know it was a while ago for you now but there are so many out there)! Thank you

Hi this is Hazel it’s a humidifier  not a de humidifier mine was from Amazon. It was a cool mist  around a£35 I used it every night.  What it does is make the air moist the opppsute if a de humidifier if that makes sense.
The sticky  mucus unfortunately it is a major side effect of treatment. You can try and clear your mouth out without a flat Diet Coke. If you can tolerate it soda water that does help later  treatment mine was so bad that I was prescribed carbucysteine to thin the mucus down later the mucus goes often replaced with dry mouth  

well done week 2 in you sound on track. Happy to hell

if I can 

Hazel 

My nephew is almost 12 months post tonsil and lymph node cancer. Doing well but still has dry mouth. During radiotherapy bought a steamer found useful.

My husband now 7 months post radiotherapy for back of tongue and lymph node cancer. He also has no saliva. The heavy mucus stage has gone. Eating ok can't tolerate spicy food. Has to always have water available.  Uses Biotene mouthwash prescribed and bought Xylamelt tablets from Amazon as our hospital does not prescribe.

My husband was pronounced clear at his follow up in April so good luck.

Iv just had my 5 years clear appointment, they said come back in a year if you want so agreed to that. Dry mouth is my only complaint really which is worse in the night or when exercising, something i`ll have to live with. 

How donyiu cope with it as I totally struggle with it?

How donyiu cope with it as I totally struggle with it?

Its just something Iv accepted all the things that get recommended are short term relief 

My husband found pomegranate juice helpful especially for mucus. We had to buy on line but if you've got afro Caribbean grocery shop near you should be able to get there

After my chemo and radiotherapy I have been unable to shave as it rips my skin right off.

During chemo I lost all my hair.

I used to be blonde but my hair has started to grow back in brown with a hint of ginger. I really want to dye it to blonde but I am scared incase  I take some kind of reaction like shaving did.

Does anyone have any advice or have suffered the same when doing something as simple as shaving your legs?

Hi Dave  5 years wow where does time go. We’re still going to apartment in Spain one life just living it. Are you still a Greece fan ? I’m 6 years this month. Fingers x we play better this year wonder how long they will give Ten Haag ?

take care hugs Hazel. 

Hi I didn’t loose my hair it went quite thin. I have highlights but didn’t do any5hung with it until I reached the 6 month stage. I’ve had no reaction when shaving legs so sorry can’t help. I’ll have a scout round if I find anything I’ll let yiu know. Hazel xx

Hi Hazel yes where does the time go its scary?, great to hear you are still living life to the full its the only way, yes still going to Greece mainly Skiathos but been to Halkidiki too this year which was great but different to going to the mainland. We`ll get another holiday in the autumn too probably. Big year for us our first grandchild is due in the next 2 weeks so obviously we are very excited and we know its a boy :) I had a tooth extracted yesterday nothing major just one at the side, it wasnt due to the radiotherapy but I still had it removed for free because I `d had treatment in the last 10 years, something I didnt know about. The dentist asked me about having HPV and how it all developed he was really interested and wanted to know the whole story warts and all probably to help him understand the relation to how it can affect teeth, anyway enough rambling for now take care, Dave x

As for Ten Hag and Utd I think they need 2 quality midfielders or it will be a hard season x

Humane Fab news re first grandson. Ours is 13 he was 6 when diagnosed times flying by. Re dentist just shows the difference I have to pay private to be seen I live too far away to come under a dental hospital in Leeds. They will treat me if I need anything in radiotherapy side. Give dentistv my blog there’s lot in yhetevwith  links. Yes I fear for us yet again. Keep in touch let us know when baby’s born. Grandkids are great you give them back which is always a bonus. We e James staying timing he’s he is 6  foot now was born 4 weeks prem weight 5 llb now a strapping rugby player. 

www.radioactiveraz.wordpress.com

hugs Hazel