Hi Ian, I was heavily reliant on yours and Hazels postings during my recovery, I have so much to thank you both for. .  All those tips and advice, and drink water...haha, not to mention retail therapy! 
 

ive been absent from the furum for such a long time, I thought I would pop in and see if the thread was still going, and very pleased to see that it was. 
 

I finished 6 weeks RT treatment May 2019 and was well on the recovery path October 2019 but then came a possible bowel cancer scare. Which I am glad to say following investigations was a false alarm. The recovery continued until a routine review in early December 2019, caused a few alarm bells and there followed the biopsy, scans, etc. A bloody miserable Christmas! Got results back early January 2020, hurrah, it was scar tissue and no cancer cells. Huge relief but, it really messed with my head, so that took some recovery and counselling. 
 

looking back and reading the posts reminded me of my early recovery days and I doubted if I would ever be able to eat again (in spite of following Hazel's posts because she was around 6 months ahead of me in diagnosis and treatment, etc). let alone taste my food. But I can! Not back to full pre treatment diet but defnately getting there and taste continues to improve.  I can even manage small glasses of wine. Another review coming up at month end.... I don't cope with them that well, especially after the shock before Christmas. It's about now (pre-review) that the night zombies, start visiting.  I dreamt about zombies just before I started my first RT! 
 

Good luck everyone especially those just starting or are mid treatment. It does get better. Stay as strong and as positive as you can be.  Hazel and Ian's earlier posts are full of great info on medicines, etc.

love to you all, be strong, stay safe.  

Hi Lori 

good to year from you and that all is well. At least you are getting seen I've only had phone calls since we least need and my next one in October is also phone call. With me being 2 years post radiotherapy at end of month unless i have a problem for now I will be phone calls . All ok hoping to sail 20 September so night meet up will be in touch xxThank you for kind words 

H x

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

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

Hiya Hazel
 

This is my second review since start of Covid lockdown.  There were only 3 of us in clinic, no waiting, it was lovely.  I think that I was one of the select few because I am special... hahaha. Seriously, I think that it was because of the scare at Christmas and my resulting mental state and of course because I am such an adorable person..... lol. I am just focussed on the end of August one now.  
 

I am still social distancing because of non cancer related comorbidities but I think that I will be fine with a meet up at the terminal before you sail. I have an N99 mask and the terminal is not very crowded, if it's the usual early sailing. It would be great to.see you and Rod again and I owe you a few coffees xx.  PS the Hotel that you were staying at last trip was turned into a homeless shelter during lockdown..

Take care, we shall make firmer arrangements nearer the time and via text.  
 

love Lori xxx

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 Lori 

will be in touch sailing is 2200 Sunday evening so will be there around 6 pm but will be in touch. The hotel tried to bill us £190 fir car parking !!!! Wouldn't mind we paid I had receipt *** onky nicoka checking post at home we found out.  Needless to say I took great delight in phoning and emailing proof . So even if it turns bsck into hotel won't ge using it !!  Understand why I am not getting seen but want an appointment before next February!!! Will be in touch Hvxx Rosd says hello 

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