Hi Laura deep breathe you can5 afford to be ill mick will need you stay postive .he will take i5 like a man hazel

May I take this oppertunity to all in this little club a very happy, healthly and blessed 2019.

Wherever you are on the journey I wish you all the very best.

kind regards

ian

Hazel,

I celebrated new year with nice iced water, curly wurlys and more vital retail therapy !

May I take this oppertunity to all in this little club a very happy, healthly and blessed 2019.

Wherever you are on the journey I wish you all the very best.

kind regards

ian

Hazel,

I celebrated new year with nice iced water, curly wurlys and more vital retail therapy !

Hi Ian

ditto re the water and a few malteasers for me in bed before midnight. 

A tip for yiu I bought ages ago online xymelts from the lozenge company plain nit mint as someone said they were strong. Weeks ago I tried one in mouth a night dorndry mouth and couldn’t stand it was early in post radiotherapy,well this week my mouth been drier than the Sahara and upmin bed constant sipping water. So last night thought be a devil and cut one in half omg gave me 4 hours and when I woken mouth was moistbsonputbither half  in amd  got until 0730 . To get them to work you have a little saliva u follow instruction so n stick to gum along cheek. Thought may be if use to you. 

Also did some retail therapy butbmine was ordering 3 new toothbrushes I love my curaprox toothbrush sas I know.

well good luck with continued recovery and I echo your sentiments for 2019.

scan day Thursday am remarkably calm , my view is u can’t worry overbsimething I have no control over will go with the flow 

hazel

thanks Hazel and may give a go, but touch wood, my mouth is not so constantly dry now and little more salivia than have had in ages and taste buds hit and miss tho, but stil experimenting.

I love the curaprox brushes as well and one of the best tips you gave me and made such a difference when brushing teeth.

kind regards
ian

So as I like to do each Friday a little update now i am in 6th week post treatment.

Have have a much better week than last and feel been making good progress in many ways.

Food wise ...still take 2 ensures a day sometimes 3, but have dinner each night and have had roast beef  gravy and mash, managing small crusty rolls again which delighted with as I love them freashly basked.

I have even managed twice to have a peppanoni pizza...bit dry but was ok and large hot dog on soft brioche roll with chunky chips as side.so feel little experimenting with food working away again ok
I am constantly drinking cold iced water and must drink at least 4 litres a day and sometimes more. 
Great beliver it helps so much and maybe co incidence but my mouth is not so dry this week and have feeling of some saliva again which is a godsend.

Have reduced my slow release tablets this week with no adverse effect and only max of 2 oral morph..one morning and one early evening. Maybe doing out of habit now as I feel I need less and less and going to reduce further from next wee. Gums left side mouth a little raw and tender so oramorh helps.
Fatigue is still there but again I think Im awake more and more..its just fragmented and I can be up from 10pm to 4am then bed then up again 9am ish...all varies.

All in all I feel really quite good this week and apart from fatigue and no real energy to do much, dont really feel I have too many symptoms to complain about>

Touch wood this continues and am hoping this gets better and better.

Hazel

nice to hear you got on well with scan and let us know of results.

Im hoping you were right about me hitting the marathon wall and feeling like this also gives you a feel good factor mentally when you feel progress being made.
I hope this is also encouragement for others who when going through rough times, know that things do get better and calm down albeit slowely

best wishes to all

kind regards

ian

Hi Ian

brill news re your eating it does give you a lift when food becomes a little easier. Keep up the Ensure it just gives you the boost if vitimens  as well as you like me won’t be eating enough fruit and vegetables just yet. I am getting better even bananas sliced go down now.

water like you say is the best thing pleased yiouncan drink it I lost it for months only soda  water for ages . Am sat drinking a fairly warm cup of peppermint tea with 3 chocolate biscuits which I can eat without liquid after every bite bliss.

glad  your saliva is slowly returning I never lost mine or taste buds totally ,still struggle at night with dry mouth but have been using 1/2 xymelts  tablet stick to gum n slow release xylitol I got them m online the mouth ulcer company not suitable for everyone I couldn’t use them in early days .

the scan was fine strange feeling walking into hospital not for treatment or to see dr .Insaid to JohnI felt really well so fingers x that’s a good sign ,as you know u get no indication from staff so didn't waste my breath. Felt tired last night maybe the radioactiv serum. Results 14=Jan at 1230 so waiting patiently for them. Always knew the dates so not freaked out .

good to reducing medication , now I am down to 8 mg co codomol with a 40 mg at night hoping next week to be 8 mg n paracetamol.

look forward to next updates great now baby steps going forward ,energy levels will come back just remember  our bodies have been radiating and poisoned to with  an inch of our life’s it’s going to take time

slowly wins every time , hare and tortoise 

Hazel

Hi Ian, been following your great progress ,awating approval to post so here i am I am on session 6 of 33, no chemo, just getting started really, your info has been  invaluable. Thanks also to Sharon, i read your blog, and that of Gary, amazing how helpful you have been to people.. 

Hi TFS

this is Hazel I am week 16 post radiotherapy welcome to the site .Think u are in Spain ? We spend quite a long time in the Murcia region well a few weeks at a time anyway. 

I have also done a blog www.radioactiveraz.wordpress.com

pop by and give it a read 

welcome to the club that none of us wants to join butbherevwe are

Hazel

Hi TFS

Thank you and glad to have been some help.

Post and chat away and you dont need approval lol

Keep us up to date with your progress and journey and ask away anything at all as if I can help in any little way id be glad to.

Lets hope the side effects for you are kept to a minimum and as you say into seesion 6 and I hope my journey has helped at least outline some potential side effects and the different stages and timings.
Im into my 7th week post treatment and will update for those who are interested plus I actually find it quite theraputic. Reason I started this blog was to help at least one person so glad I have done so.

Stay strong and positive as there is light at the end of the tunnel and in no time at all you will be at the stages I am going throug now, which is far more positive and slowely feeling of progress.

Let me know if I can help further at all and you are also welcome to friend request if you wanted one to one chat etc

kind regards

ian

Thanks for the welcome guys, i will introduce myself properly shortly....edit  ;       the approval mention was that being outside the UK i was going be unnable to post, but the mods gave me the ok and approved me! Glad.

So wee update on my journey.

Had my first follow up appointment with my consultant after treatment and support team today and went well. Just for timing i am into my 7th week post treatment.

Consultant asked general questions how I felt and then quick look around mouth n throat with stick and headlight and seemed ok.

Had scope down nose and consultant seemed pleased with what he saw. Said a little more mucas at this stage than normal. I thought that was a bad thing but partner said he meant a good sign as throat not as dry as would have been expected at this stage. Funny how 2 people can interperet same info.

Anyhoo, all seems good. Ive lost wee bit weight since treatment end and and just wee frown from one of support team. As Im starting to be able to eat more and more I have been told to cut down on the bushtrucker trial Ensure drinks and eat more and just use them as a top up.. More proteins..porridge etc and even little more often is better. Admit I have been drinking 2 ensures during day but only having one small meal at night. Can eat more variety but still small portions ( plus a whole packet of mini curly wurlys for dessert)

So on the eating try to me more practical and think of more energy foods as fatigue is still the main symtom that I still have, albeit getting better. Had appointment 9:50am and slept in and didnt wake until 9:20am!..****...quick shower and drive down to hospital and into short stay car park and literally  made appointment by 2 mins. This is when I appreciate staying in a village, then all carriageway to hosipial in around 10-15 mins max and I do realise how far and hassle travel/ parking can be for some so very lucky in this respect.

Told to start to get out for walks , told no health club and bike yet but start to try and take a daily walk.(I know you do 15 miles a day on bike Hazel lol) but i dont feel i have the energy yet but will try the walks. I only do gentle bike exercise at club anyways and i think he thought when I mentioned health club/gym visions of me on treadmill and power weights then swim ! - err i dont think so.

Consultant was ok (ish! ) when I said I planned to return to work 21st Jan and said that was fine as long as phased return and thinking over a couple of months at least. So again for timing and all going well this will be aroud 8 weeks post treatment then starting back to work.I dont have any manual or physical work and all day working on computer so helps a little, plus I have the luxury and luck of being able to mix working from the office and at home.
I will see how it all goes as ive not really taxed brain re work for some time but looking forward to getting back to being productive and creative again, but plan on being sensible with baby steps and pragmatic on how im feeling.

Get a pep scan 3 months after treatment so as in 7th week post treatment should be around end Feb ish I will get a scan.I did ask the question, so what happens if any residual cells still hanging about and was told they just wait another 3 months as usually resolves itself, but told me looking for a positive result and cure. Once all clear then follow up check ups with clinics for 5 years.
Was told by advanced nurse specialst that PEP scans can very often show false positives for many reasons so not to worry about any lights etc..I'll prob get more info on all that when getting done.
I know some dont like to ask, but I do and glad I did as it all seemed very positive, no negatives at all and came out feeling good and mental boost. Even more positive attitude about tackling food and small exercise.

Just remebered that in all my updates throughout journey there was no mention of swallowing exercises. Not sure if anyone else had to, but before treatment I seen the speech therapist and was given a whole series of swallowing exercses to do twice daily. Like holding throat and swallowing ten times/ gentle bite of teeth on tongue and swallowing 10 times/ open mouth and wide as possible and stick out tongue. I have a proper booklet with it all that department was piloting and trying to get funding for. Rational was to help throat muscles and to try and continue to have them active and hence benefit when recovering and lessesing problems with swallowing during treatment. I have been good and pretty much complied with all advice given and honest reason i fog=rgor to mention was that I actually forgot all about them and did not follow religiously.
On the plus side and no one will convince me other wise is that I have drank so much water and still do drink at least minimum 4/5 litres a day and sometimes more and that has helped me sooooo much in many ways in terms of recovery/ dryness/mucas issues and by default continually drinking water means i am using my throat  muscles.

I know we are all different and all hese updates  may not be much of interest to all/many, but as said reason I started this blog/ thread was to help at least one person and I actually find it personally therapeutic to jot down my journey as it gives me good focus on where I started and how my journey progresses.
It really helps me a lot updating my blog even though I can be quite wordy and lenghty and even feels I'm writing to myself sometimes !  so you can read/ skim over or ignore lol
I have plans to bring it all this blog together from the start and have a few ideas on what id like to do to bring it all together a little better/ more co herent and joined up more seamlessly but thats for another day when im in mood and ready.

Still remain positive and cheerful and as always onwards and upwards

kind regards

ian

Hi Ian 

ser u can’t sleep either. Lol. Just up for a drink. All brill bril advise n news. 

Lol I wish 15 mikes a day week 8 was in Spain and 8 mls to start with so close. 

Ues re pet scan although it’s the better scan to have it csn guve false positive s like u say all good to hear. Your consultant sounds so much like mine positive positive. 

Little n often is the best way I am still doing that week 16  laughed at up  late I had at worst 90 min journey must live out in the sticks more than u. ! 

Shsll we write a book based on experience s ! Love thec analogies bushtucker trial to endured. 

Off back to bed 

hazel 

ps haven’t u done as I told u week 6 I think n little walks naughty naughty lol