Brill report as usual glad you are out and about and yes I agree with you please don’t just stop   I also did s phased  withdrawal. I use my case took it for 5 month at Mac 6 ibuprofen 8 x30 mg/500 co codomol and oramorph Max 49 mil when pain bad at time of withdrawal 20 mil I too did the oramorph 2.5, mil at a time  then reduced ci codomol gradually  until 8 mg then replaced until paracetamol again took me 7 weeks. 

Yesterday I had a thought at begining of  week I started to question did u need the omaprozole that u was prescribed in January 20 mg a day as g p thought I may have had acid reflux never had it before.i started reducing Saturday replacing alternate days with 10 mg yesterday I ate 2 cream crackers with cheese with ease. Thought strange I will look at side effects of omaprozole yeah u know we skip read them. Lo and behold  1 in 1000 could cause dry mouth. Umm no sign of acid reflux  in me so went online to ncbi.nim.nih.gov which is a recognised site and found an article that Xerostomia is possible due to proton pump inhibitors especially parotid gland which is where I am not producing saliva from. Plus oral thrush is another side effect and I have had that i

on And off since October that isn’t mentioned on side effects but us on gov site again interesting that dr s not picked it up !   

So again hope this helps one person will keep you posted on my progress 

Hazel x

Hi-Wow you were on Morphine for 9 months! Thats too long-without monitoring from your gp surgery. I know you say you don't blame your GP & you have a responsibility-I disagree it's not up to you to monitor it-although I know you do, not everyone can for whatever reason-it's up to your practice & I think they did let you down & sounds like this contributed to your recovery-sorry it does annoy me (as you might have gathered) & I am medically trained. But you are right to check it out & sort it out yourself in the end- & that is sound advice to give others-but you shouldnt have to. Anyway rant over & I'm glad you did sort it & are feeling better because of it.

Hope everyone's having a good day :-)

Hi Ian and everyone 

update on me 

Thursday has ENT appointment again main ENT guy on holiday seems like every time I go I miss him and have a locum ,does this happen to anyone else ? Not talking about my oncologist  just the  ent Routine check. When I see the main ent guy he doesn’t use the camera  He says because it was ora pharyngeal Cancer he can see it by moving my tongue and directly  feel my neck  .But each locum wants to to a nasal endoscopy and then for weeks after I have trouble with mucus and a cough ? Anyone else has this ?

All was good all felt fine and nothing  sinister to report. 

Charity bike ride done yesterday will put pictures on my blog Www.radioactiveraz.wordpress.com biked 60 km in torrential rain.But we did it raised at the moment £1100 for my hospital cancer head and neck department. well pleased. 

Our other half’s 

 on yesterday bike ride, while chatting with Neil who We became friends during and after radiotherapy  it was inevitable the talk turned to how we and our other half’s were coping. This isn’t meant  in anyway disrespectful to my hubby or Neil’s wife but we both commented .the following ok a year has nearly passed in treatment and outwardly we look the same as BC before cancer .But in our cases some days we are tired and yes we see the raised eye brows when we say just off for a nap,or tea is on the table doesn’t matters if I cooked or John some days I just can’t eat it. Ok 3 days ago I loved cauliflower or what ever but today it won’t go down, we see the looks the shrugs. We don’t mean to be awkward we want to eat drink go out ,mow the lawn etc etc. Some days I just wish for a day John could feel what my mouth is like all the time ,when I even say this he responds no thank you. .

John has  just read  this post so not going behind his back , even he says the cancer card doesn’t work anymore. Just wondered what other side thoughts are on this. Don’t get me wrong I appreciate every thing he’s done and he is as fed up as me .I do think the hospitals don’t give enough long term guidance awareness of just how debilitating our oral cancers are. Like wise when friends say oh aren’t you eating curries chillies yet ,blah blah my friend who had eg breast cancer she can eat fine , unfortunately our mouths / throats took the brunt of treatment not our boobs , not being disrespectful as I know only too  well having lost both my parents to cancer many years ago every cancer has its own issues .Eating drinking and breathing are fundamental to life any of these items are impaired life can then become an existence.

rant over 

hope all are onwards and uowards

Hazel xx

H

as you know from private PM, can relate to lot of what you are saying in post. I've had quite a long recovery period, only back in office everyday but leave early as phased and still get tired quite easy.
I'll not post too much as I'm convinced my pre diagnosis had a lot to do with my proloned time "recovering" along with medication not really being monitored and prob not apply to that many re recovery timeline.

Agree there is not really a robust plan afterwards and very often just left to fend for yourself or at least you have to make contact with support team again.I've also posted on here re the medication side of things.
One thing I would add and although many it may not apply to but when it's stated we have recovered what we actually mean is that we have had a positive response to treatment and yes we can find a "new normal" but for a lot of people who have had this treatment, some side effects can be permanent and there are certain things that might come off the "can do" list pre diagnosis.

We are lucky, touch wood, to have positive prognosis but that dont mean we are off scott free and Ive always been told it can take up to 2 years, from my consultant, to find a "new normal".and then we get to keep some permanent side effects in many cases.

Agree as well that we can look fine outwardly and have comments lookig good again for example, but inwardly not always the case and often a wave comes over a need a nap. Guess its really hard to put into words how it feels as its not just a case of feeling a little tired.Drinking water constantly to keep mouth from being so dry Ive been told will be part of my permanent new norm.
Could go on with others but you get the gist and wanted to reply saying I agree with content that Hazel has written. I do understand some others views and frustrations around all of this and the impact it can have. We just sometimes cant help some of our continuing, real side effects.

Notwithstanding - Onwards & Upwards and positive heads

Ian

Well thank you Hazel & Ian-that is very insightful for us 'other halves' & very helpful as we don't know how it is for you guys-so it's appreciated you telling us.

We're at the stage now where my hubby's out & about, bumping into people who are lovely-too lovely! but we are constantly expaining it all over & over-I don't know if this is a good thing-as my hubby likes to talk about it to me alot (understandable-it's still early days but there's no time limit as it's a massive thing to go through-psychologically as well as physically) but having to repeat it all the time has to come to an end soon-surely? Maybe not- & I can't moan about it as people are being nice-but you must get this too?

Also he has a neck gland going up & down-started last week (anyone else had this?) I did tell him to get it checked out last week but it went down so he didn't but as it's come up again I've told him to go the GP tomorrow. But what will the GP do? they're not ENT specialists...do they refer you on for hosp appointment? His next ones due 19 Aug but don't think it's wise to wait that long? He also says his tongue feels weird..? But as far as I know-it's felt weird since pre diagnosis..? We will get it checked out.

Well done Hazel-another good report :-)

Any advice appreciated... x

Hazel

re your appointments.

past 2 check ups now you mention, I have not seen the main consultant but another guy, lot younger and defo not a consultant. I get the nasal endoscopy every time and even the Speech Therapsit has done on my few visits with her.
He also feels my neck and checks tongue and back throat with torch.

All very painless and used to now. Dont suffer any after effects at all.

Ian

Other Half

Not sure if relevant or similar intervention required but I have ring round my neck of what looks like tissue and told was to do with lymph glands. I have couple of appointments scheduled with a Lymphodema Nurse specialist and I am led to believe they map out some kind of neck exercises plan to help.
I'm a little unsure of the exacts but will try and post something here once I have been to the appointments. Not done through GP as they are not specialists as you say but was organised through my support team.

ian

Hi Hazel and the gang, Iv had one check up since getting the good news and have another check up in 2 weeks, my first one was with one of the team rather that the oncologist in fact it was the surgeon who took my tumour out, there was a trainee of sorts with him and a nurse so it was scaled down from the previous appointments, he had a feel around my neck, looked in my mouth with a head torch and asked if I was eating and drinking ok, that was it in fact I felt like I was only allowed a certain amount of time and they needed me out pronto, it could all be in my head of course but it felt that way. Im not complaining the treatment has been amazing and we have to accept that the NHS are under enormous pressure and we are part of a conveyer belt especially in a heavily populated are like in my case Manchester.

People can be ignorant regards cancer and to be honest Iv all but stopped telling people unless they ask, I bumped into someone last week that Iv not seen in over a year and he said how well I looked and asked which diet I was on,  I said "thats what cancer does to you" he didnt believe me at first but I found myself telling him the whole story.

Weight wise I think the effects have all but gone from the Radiotherapy because Iv put about 8 pounds back on in the last 3 weeks and its thankfully muscle mass that seems to be returning as I feel stronger all of a sudden. 

Im now 13st 10 and want to keep it at that, im in large shirts instead of XL and im 2 inches less around the waist, I can tolerate mild spicy food and Iv had a couple of curries, nice and moist in the mouth and dont need as much water although Im dry in the morning, sip water 3/4 times through the night, still getting gunk in the back of the throat but overall cant complain.

Dave

Hi Dave interesting I too had same consultant who did biopsy and sanecas you had a look n feel   It’s onky in subsequent appointments when he has been away I’ve had the locum s who insist on camera. Will be interesting to know what happens on your next appointment. Yescagree not a diet to recommend lol !!! I’ve put 3 lb on so am st my weight that I was 3 years ago good to hear from you kerp in touch we need to start spending mknryvst old Trafford as  well !! 

H x