Hi Laura, yes they add it on, i asked about it as old reports said its not ideal but she said nowadays its the total dose that counts , shorter the better time wise but a few days not an issue, some people have to take a week out if skin erupts etc  x

Wow Dave, great news lad, encourages us all.

Hi Ian didn’t you manage to get to the office today or work from homes. I managed 29 km on bike helps that it was 18 degrees 

cool in a morning ,still got dry mouth but eating us pretty good think the Omaprozole that dr prescribed is helping as not as much gunk coming up. John has a glass of wine I put tip of my tongue on some OMG I jumped ok I don’t really drink 25/April last year was last drink I had just don’t do it anymore. Doubt if I ever will ,

any questions keep asking not going to stop posting as if my experience can help any8ne will continue

hazel.

Hi there

so end week 9 post treatment and darn it for this being so hard lol

had a pretty rough week apart from yesterday and have really stuggled with food so have upped the ensure drinks to 4 a day and felt a little better yesterday. Also managed little cottage pie ;last night, but wouldnt say I'm enjoying any food and just doing for sake of it.

Still really tired and few nights in bed 6.30pm/7.00pm and sleeping right throught to morning.

Not mucas, but mouth has been really claggy and sticky to point of feeling sick couple mornings to try and get rid of..Its pretting disgusting mind.

Gums on left siide feel little swollen and raw but wonder if down to medication.

Ive tried to reduce morphine dose this week, without any advice as non offered by Gp etc but dont want to stay on this longre than I have to. Anyways, Ive been changing doses this week so Im going to speak to support team and or GP to get advice as I may well need but just concerned bout the continued dosage.

I get so much morphine on repeat prescription and probably on balance should maybe be a little better periodic check but I suppose thats down to me to raise with GP.

Work - not too bad but was minimal work done this week plus 2 days annual leave today and yesterday. Little hassle first day back few hours in which didnt help but hey ho.

Same next week..work 2 days home 4 hours each day, i day in office 4 hours and 2 days leave so still plenty rest. Not really sure if Im goinf back too early, Im beginning to think i am but will see.

Walking Hazel lol - still limited and walk to work from car park was quite measured and had rest in corridor with a drink. This is a 15-20 min walk!, but gonna try a little more next week - i honestly dont have the energy.

Part from that Im fine and dandy . Its just a stark reminder to me that the recovery from this is slow and you definately dont boucenback easily nor quickly. Fasle sense of secuirty a few weeks ago as felt great but pulled back again I feel but am opimistic and positive and next week is going to be great and much much better with more energy and more food intake.

Would say that the fatigue and food intake pretty much the dominant side effects still hanging around and although I know wont last forever, Id like my body to show me a little more consideration and buck its ideas up. My brain is willing and up for getting on with with it, my body is just relaxing and going chilllll..take it easy...so Im left with a brain trying to get up and go attitude and body still in holiday relaxo mode.

Managing to read more and more so thats a bonus as avid reader and parcels from Amazon and retailers help but the good thing is im never really bored and always quite happy with phaffing around on my gadgets.

Keeping up my own mantra and drnking so much water and I feel that helps sooooo much...

so roll on next week when I am hoping to be more bouncy, full of energy and full of food.

Hope you are all doing well on your journeys whatever stage you are at and hope you are having a fab holiday Hazel and managed the marathon on the bike.

kind regards

ian

Hi Ian

agree re the meds all I got was a stock answer painkillers clue is in the name but like u felt dosed up so didn’t know really if I was in pain. 

This is how I did it started with the morphine oramorph reduced it by 1 ml every day  had a syringe n dropped it into water to tricky brain I was having same dosage if liquid. When off oramorph then start with con codomol 

this way i did it 

day 1 replace 1 lunchtime tablet 30 mg with 8 mg one I had to trawl chemist s for them as dr wouldn’t prescribe 8 mg keep all other tablets same  

day 3 replace tea time one

go on like this until taking 4 x30 n4 x8 then start again until all are 8 mg co codomolthen replace same way 8 mg with paracetamol until all are paracetamol. Niw I am only king paracetamol ok taken me overv7 weeks but u can’t justbstop them .only side affect was a few weeks insomnia.

biking done 50 km this week Jihn is going out every day and get mile  in but too much for me .did walk 7 km yesterday had fish n chips ate all fish few chips imoressed then slept for an hour .

i also have a mouth like glue it’s doung my head in trying to explain Hiw u feel is terrible. Food wise Ensure keeps you alive so bush tucker trial I am missing mine as we didn’t bring any have the powder and making some if that up.

work take it easy maybe see how this week goes then re assess

keep in touch hazel

if above nit clear message me

still in spain until 7;Feb weather 20 degrees today sorry 

The mouth claggy  is your saliva buds are waking up but producing a thick stream nitbye usual water. Someone told me try fresh or tinned pineapple so off tonfind that today or pineapple or papaya juice to try and water it down

h

Thanks Hazel

Im gonna try the pineapple..anything worth as shot as mouth is gross lol as you will know

and yup im gonna re assess work but im hoping if i get get some more fuel in the body i'll pick up a bit.

Re morphine
Ive got 30gm tablets but also got 10mg tablets as well..thats what they gave me and I was on 40mg twice a day plus oralmorph.

Ive cut down on the 30gm and like yo usay am trying to trick body and doing slowly. I only very occasionaly use the oral morph now.
Point I was making re GP as well was I have so much prescribed on repeat
They give me a months worth of tablts and 1300ml of oralmorph so I defo dont need all that oralmorph.
I'll do slowely but trying to phathom out your med adive above lol..your kidding right!....lol stick to pineapples

Anyways its not all doom and gloom...im still breathing, enjoying my reading again and still positive.

Glad your enjoying your holiday and some warm weather and fish and chips..impressive re the bike as well so your doing great. I would imagine between the biking and warm weather you will be getting a good sleep as well.I have another 2 pillows from Amazon coming today and trying the bamboo filled thing..Ive been on a quest for years trying to find the ultimate pillows, but not found yet and I just keep going , but trust me Im getting plenty sleep its unreal.

Enjoy rest of holiday and will keep in touch..Week 10 is on schedule to be amazing !

regards
Ian

Quick update from me Im now two weeks post treatment and doing well, Im only taking Pregabalin twice a day, my mouth is healing, skin now good and almost healed, swallowing no problem and I even managed two 3 mile walks and a game of 5 a side football although I took it easy and feel well down on fitness which is no surprise.

Downsides are Iv got no appetite but eating small meals and things still taste strange, mouth still dry especially at night, overall I can’t complain.

Dave

Good to see the pair of you doing so well.

Dave - you sound amazing after 2 weeks post playing footie, not too many meds and managing small meals - great stuff

Keep rocking guys

ian