Hi Laura,

Good luck to Mick and keep us posted on his journey.

Wish him all the best and hope side effects kept to a minimum but all rooting for him.

Dave

well done completing treatment and will keep positive for you on recovery

Same wishes to all on this journey, no matter the stage you are at. 

kind regards

ian

Hi Ian

well,allmthose sleep deprive day nights have paid off just been given the All clear it’s such a surreal feeling hope I can be of inspiration to others .see oncologist in 12 months in meantime lovalmENT every 3 months

hope you are doing ok ,

Hazel

Hi Dave

I had no chemo but 30 daily sessions of radiotherapy over 6 weeks.

I get you as well re feeling stuffed over a tin of soup. Its funny feeling as normally would manage adult portions but sometimes just cannot do. Not you dont want to its jus that you cant.
I'll be upping the Ensures as in a funny way ive gotten used to the Banana or Strawberry and as I know they are fuel im reasonably ok with. The other thing with the food is not just the eating of but the lack of appetite and I also cant be bothered making anything, although partner makes what I want at dinner.
Also Dave, if you are like me, your taste buds do change and things do taste different to what you would normally expect. Not sure how long lasts for and I think , like everything, depends on the person as we are all different. Sounds like you may have some taste bud challenges as well and I think your timing was around about the same as mine re noticing. There was a period when taste totally shot and all I could take was these Ensure drinks

So we are in a little battle trying to get as much fuel as we possibly can into our bodies. while we have no appetite and also having to come to terms with things not tatsing way you would normally expect.

Oh the joys...I have lost quite bit weight in the process and I never had to go down the route of getting a tube fitted, and will just have to make more of an effort of taking more fuel and accepting its part of the medicine and recovery process required..

Hope im not coming across as negative, is just been a little struggle and the only thing I would say hanging around big time is fatigue, but will up the ante over the next few days and next week over eating. Taste buds getting slightly better, but no real appitte to use them
Teasing out the morphine and trying to reduce slowely as that will add to the tiredness.

My big apologies for being a moaning old git this week lol

Hazel

Walks...only around supermarkets at moment but at least something, but its not much i agree and not often.Will let you know next week how I get on re work and hopefully will be more upbeat and full of energy

ian

You are entitled to a little moan Ian dont worry as Hazel has said we didnt ask for this,  sometimes Im a right moaning git, you`ve had exactly the same treatment as me 6 weeks radio and no chemo.

Im 1 week post treatment today and its flown by just as the 6 weeks did, Iv just tried egg on toast with Paracetamol to numb my throat, it was a partial success I ate half the toast and all of the fried egg but I had to force it down as Im not hungry at all but the gaffer Julie is doing her job and trying to get me to eat something.

Looking into my throat its still ulcerated at the back and so is the roof of my mouth and the gums on the right are swollen, the skin on my neck is sore generally and bad on just one small area about the size of a ten pence piece, a long way to go yet Ian keep moaning you`ve earned it.

Dave

Ian

sending positive hugs and thoughts your way.remember  I am week 20 and it’s still baby steps ,so yiu are doing great and I still have an Ensure every day ,it’s a guaranteed 300 calories and to be honest like you say they aren’t too bad !OMG never thought I would say that lol.

suoermaket is a start !!!  Try a pie u may  only eat then inside but give it a try I used to warm a slice of pork pie as well ,I am still finding that processed meats go down better ok it’s nit fuel if choice but anything is better than nothing ! Try a Greggs cheese and onion pasty as well yiu May be surprised ok wash  it down with water .but it’s better than nothing dip in soup as well ok lukewarm not hot x

UHi Dave well done on fried egg and a bit of toast is better than nond Agree ou r stomachs have shrunk  I struggled last night with tea just couldn’t face it. No matter how we try we will have good days and bad days .At least winter hopefully will soon be over mam looking forward to seeing a bit of sun tomorrow even if u can’t sit in it !!! WIll still be checking site so keep in touch and fingers x for another win tomorrow.  Ole ole ole .

on a anither good point Neil who was the last  in our radiotherapy gang got  the ALL CLEAR As well yesterday so Dr Sen must be over the moon 4/4 in a week !!!Peoof that although brutal thentreatment works.

re your ulcers have you git gelclair prescribed ? it’s good and it does work it’s expensive £69 to buy but I had a burn full length of my tongue took until about 5 weeks ago for it to go. See your nurse or dr 

 Ranting  is good for the soul and being a mangie one is perfectly acceptable!

Hazsl

dave

what kind meds are you on just now. Are you on on paracetamol?

maybe not, but would imagine morphine would be introduced quite soon but you sound not too bad if your still at least eating so thats a good sign. I had and still have MST morphine tablets and oralmorph, but reducing slowely and cutting dosage.

As for throat I had and still do, Caphasol tablets and Difflam mouthwash , both of which seemed effective.As for neck, I went throught treatement and neck ok until about week 2 post treatment. Even then wasnt too bad, but bit red, itchy and skin peeling a bit but nothing like Hazels.
One thing I did was keep applying Aquaous cream and that worked wonders. Tip - put it in the fridge or the cream you are using in fridge as applying it nice and cold is a lot better and more instant relief..

Guess we do earn a moan now and then lol but keep going my friend as sounds like your doing just fine

ian

all hugs accepted as you have to remember most men are more dramatic.

Will up my food this week and just off phone to docs and have another 84 Ensures prescribed for the month mmmmmmmm yummy

You have the most fab holiday my friend 

ian x

Ian my meds are Liquid Paracetamol 500g as needed, I just take it before eating and  Pregabalin twice a day, 

Oramorph which I’m not taking I don’t like the stuff it gives me indegestion, constipation and hiccups.

E45 cream for skin and Difflam for gargles and I mouthwash/gargle with saltwater and bicarbonate that’s it

Dave

Hi ian n Dave

your necks should be fine now not being zapped. Oncologist said to me on Monday he knew on day 1 what my neck n tounge woukd be  like but h e chose not tell me and upset me as it was necessary for the margins he wanted to cure .to which  I am eternally grateful my neck now perfect although no freckles ! The radiotherapy has zapped them which I find strange !

84 ensures cool thick we should all get invited to I am a celebrity this year !!aftervtriaks we’ve been through think I could even face my worst fear Rats ! Lol

Didn’t want to stereotype the make species !!!!!!!!! Man fkunetc. Lol

enjoy your weekend and whilst I am sipping my water overlooking the sea will raise a glass to us all.

Hazel

Hazel have great holiday, 

Dave

Dave n Julie willmso ,be your turn soon , will keep checking in posts while Johns out doing his big bike rides ,I know I won’t be able to do mega miles but a few will be good !

Hazel

Dave n Julie willmso ,be your turn soon , will keep checking in posts while Johns out doing his big bike rides ,I know I won’t be able to do mega miles but a few will be good !

Hazel

Have a great holiday Hazel. Great to see the post treatment updates, Ian  and Dave. Hope you perk up Ian, im learning this fact from you all,  just when you think you are over the worse, there may be a another bout of fatigue and appetite issues, duly noted.

If any of you would like to  give opinons on my update please do. It is Ian's thread but i think keeping it updated with new cases may really help people. Certainly has for me, thank you all.  So;

although im three weeks in only done 13 sessions, due to machine issues. So i got a 4 day break Sat to Weds, may skew my current status. But, i am ok, still managing some solids, no meds at all, trying liquids in preparation. I had a swollen uvula and sores at back of mouth, not too bad now, the magic mouthwash they gave me really is good. The amino acids as mentioned by Eric, have so far kept mucous to a reasonable level. However. 13 out of 33, not even halfway, not fooling myself.

Which brings me to pain relief. My consultant asked what i had to date, odd ibuprofen and paracetemol. So she said, lets start you on very low dose fentanyl patch see how you handle opiods in advance of pain, I was quite impressed! Being proactive, which im hoping is good. So i have that plus obligatory anti sickness stuff for 5 days , and obligatory laxative. Going to see how i get on, reluctant as im fine but get her point. Instead of oramorph here for relief , they give a nasal spray type quick shot of fentanyl for breakthrough pain, for the future, getting her retalliation in first it seems. That alone is 84 euros but cost me less than 5, although the cream they want me to use here is dear, 23 euros.It is good though as i was a real mess with another cream i got, this sorted it.

Love to know any thoughts on this lot of info, seems a bit deifferent from UK and  i need your collective views, you have got through, im not even half way.So,  many thanks. Graeme (the realist!)

Hi Graeme,

Given from what you are describig it would appear to be pretty normal expectations at your point in treatment. Very general but the first fortnight or so of treatment seems pretty uneventful and if I am anything to go by, some side effects kicked in the middle week 3...very slowely then creeped up a bit more.
Meds I guess does seem different as I was pretty much given morphine from the get go then upped dosage and still on.
Not clear what your plan is regarding te opiates as oralmorhone is just quick relief wheres, I for example was given MST morphie tablets as well, I think at the start of week 4 but Id have to check,  whcih basically means taking 2 tablets and having in system 24 hours a day. Good you are on anti sickness but I was under impression laxitive prescribed to couteract the effects of doses of morphine?
Other point that has been made here and by others as well is that the pain meds are prescribed for a reason and to take them if neeed and not to try and muddle through.

Cost wise, again been raised here as medication costs are high although, and I can oly speak for Scotland in UK, in that all our medications are free no matter what or how many or often we need which is a godsend. Range of potential meds otherwise I would imagine would be costly.
By and large Graeme you seem to be doing fine and describing where you are at this stage would appear to be pretty normal. As you say, little early for any graet side effects and hopefully kept to a minimum but at least you shouldnt get any major suprises.
Keep us posted and ask away anything or just share journey as we are all here to help one another.

Rememer to keep drinking lol....my mantra !

kind regards

ian

GHi Graeme

will do a pleasant 18;degrees beats a 1 degree thatbwe have in West Yorkshire as I type.

Main differences I can see we have the security if a machine goes down becasue our cancer centres are bigger we onky have the inconvenience of maybe a few hours not a few days. The only breakdown I incurred was in my very last day a fan outage took all 33 machines down but I had never seen as  many technicians descend in such a short time within 2 hours normal service  resumed. 

The major difference I can see is Spain prescribes most things here there is deffo a North south and east west split. I am in contact with a girl who was treated Middlesex U CH hospital they automatically give a peg to every head and neck cancer patient up north in my area u get one if u have no primary cancer found as radiation is heavier on both sides , whereas we have to agree in writing a nasal feeding tube if required can be given. Also again in my area nondifflam spray no mouthwashes no caphosol tablets. Anything the hospital prescribes you get the generic trade name i.e Movicol prescribe you get Movicol at my Drs you get the cheapest foulest one they can get away with. Likewise I could only tolerate Ensure butbDrs refuses to pay for it and kept changing prescription to an even fouler tasting one so I had to fight for the Ensure .

The amino acids that you and Eric have been prescribed seem excellent as neither if you aren’t plagued with mucus .

good luck with the opioids if you need them use them At my worst I wasn’t 40 ml of oramorph and 8 co codomol  and 6 ibuprofen every day ,now weaned off and down to 8 paracetamol .

the hospital sidnin all fairness have no issue with prescribing gelclair for ulcers at £75/to buy a weeks supply and when my neck burned the burns bandages were £70 a rook and was using 2 a day and the tape was £25/@a roll.

will be interesting to see other comments

Hazel

Good replies, really shows the differing policies , and i noticed USA diffferent each state. I wasnt offered PEG, they said 20pc chance id need nasal, but maybe just pacifying me! Yes, Ian they advise on the laxitive for fentanyl, seems morphine by another name, although no expert. Also gave me presription for enema if ....erm....3 days of lax doesnt work! Im wary of taking anything, but a few times ive noticed you guys say, take the meds, and she said gets me used to it, so start routine tomorrow since ive no car journeys.  Like i said week 3 done but im really week 2 and a half so early days. In fact maybe im getting some effects early, rotten taste today, sorted out after i ate, taste buds ok....for now. Thanks guys have a great, treatment free weekend, some of us resume Monday.....uuurrgh:

edit; 

yes i got free meds when i lived in UK  7 years ago.Here we pay around 20 pc of cost.  My Spanish is ok, no more, but the charity send me nice translators. Wish we had spare machines here, they say we are lucky for a small island to have vmat technology.

One week post treatment and Iv noticed that my saliva is returning, Iv just eaten a tin of vegetable soup one slice of bread then ginger cake and custard, that’s the nearest thing Iv eaten to a meal in a while and I’m pleased with that.

Dave

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