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

Just on the throat exercises Ian I got 4 sheets with 10 throat exercises to do 5 times a day which I do and its helped me a lot, we have spoken to other patients who didnt do the exercises and thay have had swallowing problems early in the treatment and one post treatment problems.

Dave

Hi Dave 

just a quick word totally agree re swallow and throat exercises we had one gut in our group who just didn’t do them found them a waste of time earkybdoors. Now he is 3 week in front if me so 19 weeks post radiotherapy and although his scan is clear he can’t swallow anything other than soft foods and the high calorie drinks .His mouth is onky  opening 25  mil whatbwe dont gettold is the amount if damage that occurs to your jaws  and tendons and muscles lots just poo poo the swallow and speech therapists .I never missed one of her appointments and am sure it paid off religiously incorporating the exercises into tablet routine .i used tomsintyem in the car in waybto ans from hospital as well ,last night I ate a grilled slice of gammon!!!!!!!! impressed I was. Lol

hazel 

Hi Laura

not heard of manuka so no and just plenty of water for me.

Thought about the flu jab but on balance decided against it. Varied opinions whether should get done or not.Touch wood, I have been fine so far but it was and is one of my worst fears of catching the cold/flu and bronchitis would be an absolute nightmare.Been in house most of time with heating on and any time out i have worn a neck warmer/snood and hat and kept well wrapped up.

Wishing Mick all the best when treatment starts and lets hope side effects are kept to a minimum.

Keep us posted on journey

kind regards

ian

Hi Laura

re Manuka honey I used jars and jar s if it in the first few months , be careful which you  get has some on line say there are 25+ but unless u are paying in excess if £70;  a jar they aren’t on amazon the £25/30 jars that say 25+ are using a different score to the official Manuka honeys and are blended .

i used a decent Aldi one which was a 10+ pure Manuka or tesco 15+ again pure Manuka u need to read the labels as the mixes ones can cause a burning sensation which I found the hard way. Holland n Barrett could be worth checking as the have their penny sale in but again read the labels.

did it help me I thunk it did ok I still got the sectreations but never had a sore throat just remember every one is  diffeeent.  I am a lotions n potions girl. On plus side it’s getting extra  calories in as well when Mick will need them. It’s surprisingly how we come knowledgable in crap and uselessness info !.

Re flu jab my treatmentbwas summer but my oncologist did say not to have it for at least a year as having chemotherapy weakens the immune system and the flu jab is a live vaccine .Also I had to keepmawaynfor a few days anyine who has had ut ,also good with babies who who were having their jabs again live vacxines. 

Good luck with treatment it’s  hard but if I can do it anyone can.hope his gums are ok sending hugs

keep posted 

Hazel

www.radioactiveraz.wordpress.com

Hi Ian

hope yiu are keeping ok m just got an image in y head of you in a snood !!!LOL

have yiu started gentle walks yet?

wentbtinlovak drs yesterday for a tablet revue should OMG my repeat script was 3 pages long! So reduce stress thatbdiwn nearly iff the co codomol down ton4 x 8 mg and 4 paracetamol hoping by next weekend paracetamol only.

although  he has put me Omaprozole for 8;weeks for silent reflux so watch this space never had heartburn before now but it’s a common side affects and it’s hard to enough to eat as it is without that. my oncologist said stop ibuprofen which I did 6 weeks ago and if no improvement get dr to prescribe Omaprozole.

have a good weekend ,3 days to gimfor me and I am remaining calm,don’t know about Monday morning though !

Hazel

Hi Hazel

hoi ! - you get man and sporting snoods you know lol. mine is Berghuas

So im doing good end of week 7 and as previous post quite good first appt with consultant,

Porb just a blip but left side mouth bit swollen past 2/3 days and gums quite tender. left side Maybe something I have eaten but tbh this has flared up now and then throughout. Will rinse a little more with Cahpasol and Difflam and hope that sorts.You think you are 100% fab then somethig always seems to pop up to remind you that you are still in recovery mode!

Walks...errrr no not yet but planning to try and do baby steps this weekend and get out. - and all warpped up including snood ! lol  Will keep you posted but baby steps - I aint gonna be like you and blast the bike for miles thats for sure, as much as I admire you for.

Im same re repeast prescriptions lol and im stil on the morphine although cut down on the oralmorph.
I wouldnt worry bout co codomol as I have been on them for years but had to stop while taking others meds but good that you seem to be reducing. Remember your own advice and take any painkillers you have to as there for a reason. Think I have 9 items on repeat just now, but havnt ordered any more of the bushtucker Endures.Do you still take them or you eating back to full normal now?

Have a great weekend too and posts are all over place here so remind me, what is happeing on Monday? Are you having another appointment/scan?...Good luck oN monday tho but let me know what's planned.

kind regards

ian

Walks - 

Hi Ian

Monday is big results day with top man .i had final pet ctbscan last Thursday keep up !!!!lol

He was confident end of November thatballmwas ok and nomcancer around but think Monday  Morning will be tense. The guy in before me we’ve done every appointment together more or less so I message s him other day saying don’t be late and hurry up get his reply Andy leave I want to get in !!!at Leeds at 12 can take 46-90 mins to get their so will report back when I am at home Monday . I’ve cancelled the bush tucker trial Ensure standing order weve 96 bottles left inuse one a day to take my tablets ,Jihn is sAying he May have them all next week Andy nitbeatbas he has out weight in whikstbhe has been doing the cooking.

eatung wise there very little that u can’t eat apart from I hot curry’s ok with a korma or butter chicken type. Some breads stick ie I can’t bake my own but warburtons thin slice or medium is ok. Yesterday I did a panini as a sandwich. Plus a can of diet Fanta !!! Progress indeed.

dingers x we are flying tomspain the 19 tho so will think about your phased plan of getting back to work whilst in my bike ,but won’t be aiming highnwill settle for 12/15/Kim’s out for 19 days back 3 weeks. Then take carvon feerybro Santander for longervstay results willing dr Sen has already said go for it .Life is for living nit hanging round hospital s,he says I am responsible enough to come him every if I feel I need to so taking him at his word for niw

wrap uonwadm , I am a RAB or mountain hardware girl myself mind u they are over10 year old now and seeing as I am nit putting weight back in mightbneed a shopping trip. Ouch I hear jihn saying 

enjoy weekend 

hazel