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 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

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 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

Hi guys, wee update from me but first off, Ian i really hope things pick up for you, i have been greatly helped by your input, and from Hazel. 

Im now at 18 done, 15 to go, which if machines behave is 3 weeks. Still on solids, saliva ok bit yucky, mucositis sores last a day then go with mouthwash and manuka spray....so far at least. Im  managing a walk daily and press ups, 3 litres of water. On fentanyl patch but ive not had pain yet, im sure its in the post but!  So,   best wishes guys, will  update again soon seeking more help if things start breaking down. 

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

 Hi Ian

got the tinned pineapple had half a ring and it seems to work ok nit all afternoon but at least a few hours of decent feeling mouth maybe a tad dry 

tablets yep I took the slow route to reduce them maybe u could do it a bit quicker I had been in them since August until early December.

glad youve got reading  back ,it’s so strange how we lost the ability maybe too much other stuff going in ,you’ll have to let me know who u read always in look out for new authors 

pillows we are so much alike I spend half my life buying them and moaning !! Think onky pillow I was happy with was from my childhood a big thick flock pillow if u remember t hem lol. At min am using box pillows will be interested in what u think if the bamboo pillow ?

hope you have a quiet weekend

hazel ps didnanither 20 k this morning 

Hi Dave mega imoressed re football well done .

food will eventually come back to yiu it’s early days yet. As long as you are getting enough calories from the high calorie drinks you seem to be doing ok .

forvdry mouth have you git biotene gel rub it in well all over gums before bed get dentist to prescribe it and dr to prescribe bioxtra mouth rinse use rinse first then gel. You can also use the gel at night plus online from mouth ulcer company xymelts are quite good put one on gums and melts in night giving yiu a moist mouth 

just a few tios

hazel just settling down to watch the boys  managed to bike 72 km this week temp today 23 degrees keeping nexk well covered up though 

Hi Hazel,

havnt managed to supermarket for pineapple but defo gonna try Got some Lucozade sport drinks for a change from water and they are really nice and a change from all the water.

Reading..I read such a wide varied selection but as long as its non fiction.mainly biography/autobio/crime/true stories..have lierally over a thousand ebooks on kindle/gadget..err helps if you know how to obtain them online lol..Often New York times non fiction bestsellers is a good source for me.

Pillows lol...just a quirk of mine and my quest. Got these pillows below from amazon and first impressions are really good. nice and comfy/soft but very supportive. Impressed so far but only one night so will see how i get on. Ive been ordered to do a pillow purge from the house.

Makimoo MP2 Super Soft Queen Size Bamboo Fiber Pillow 2 Pack

Nice you are having warm weather and relaxing and enjoy your well earned rest and well done with your biking - great stuff

catch laters

ian