Weaning off pain relief!?

Thank you Hazel!

again, your blog helped enormously!!  If only to confirm the such extreme symptoms were all quite normal.

Yes, I’m realising it’s best not to be able to nod off throughout the day……I’ve only just got up   But how long realistically does this go on for?  Eg am I silly imagining I might be able to walk on average 15 miles a day, for 5 days from 23rd September (I am a good walker normally!!)  Right now, it seems a touch too much??

Oh something I forgot to mention!! ‘Thrush’…..I’ve had it twice now, though don’t think it ever left!?  I’m on antibiotics again.  I realise now, this has definitely been affecting my ability to eat.  Any suggestions as to how I can finally get rid of it, I don’t think it’ll be gone when the antibiotics run out again on Thursday!?  I’m using the difflam many times a day?

Thanks again

Hi thank you. Re 15 mile a day for 5 days if I’m totally honest I wouldn’t have been able to do that ! Prior to treatment I could cycle 100 km in a day took me 2 years to get back to that. Not sure if your age I was 61 when diagnosed. 
75 mile  in 5 days is a huge ask. What are you managing now ? 
fatigue can take a good 6-12 month to sort Of course we are all different   you know your own body.  as for the thrush I had three long sessions  before my thrush went. I was on 59 mg if flucozonole from memory daily 3 times a day.
Can you manage probiotic yoghurts? They may help. I personally couldn’t cope with the test or the texture of them.,  no you know your own body as for the thrush I had three baked sessions of Flynn all before my thrush went. Can you manage probiotic yoghurts? They may help. I personally couldn’t cope with the test or the texture of them. Are you getting enough calories as well that does have a big effect. 

hugs Hazel 

Hi Hazel

I’m 58 and was walking at least 40 mile a week prior to diagnosis, as well as running regularly.  It wouldn’t normally have been a problem, but I’m realising this fatigue is taking much longer to get over than I imagined.  Right now I’m doing around 2 miles a day, nothing for me

Mm, I’m definitely struggling with the calories, it’s hard living alone, I just have no inclination…..which I know isn’t good!!  I’ll try the probiotic yogs, I really don’t know, will see. 
‘Baked sessions of Flynn’…..what is that!?!? 

I finished my treatment 23rd Feb.. still feel the effects of fatigue, and I'm off to the chemist in a mo' for another week of fluconazole for oral thrush, which is proving to be a very stubborn and belligerent SOAB.. 

Ahh, so you’re 3 months ahead of me Loz, good to know, thank you!

So how are you getting on with the calories, managing enough?  What’s you’re weight loss been like?

Guess I have to grin and bare the thrush problem then, you’re right it is a ‘SOAB’

Have you had you’re 3 month mri scan?

Ah my typos are legendary although I was typing in the supermarket 

it should have read I had 3 blocks of antibiotics before my thrush disappeared. As for eating take the mantra food is fuel. Eat to live not live to eat. Write down what you’re eating to count the calories   It’s weird counting calories to get more in but I got used to looking at things in supermarket staying away from low cal stuff adding cream to soups lots of butter everything that I didn’t eat before. 
hope this  makes sense 

Hazel 

I was on patches and Oxycodone for a a few months - approximately the equivalent of 60mg morphine/day.  I dropped the Oxycodone from around 20mg to 5 mg with the patches still in place.  I then stopped the Oxycodone and dropped the patches down over a month to the lowest level possible and stopped.  OMG the withdrawal hit despite following the planned draw down.  A few of us have had this.  It was mainly at night.  Anxiety and very restless body.  I suffered it for a few days then in desperation went back onto 5mg Oxycodone (it stopped withing 30 mins) at night and reduced 1mg per week thereafter with GP support.  I only give the detail so you may recognise withdrawal if you have the same.

Coming off so slowly did the job for me.  I was driving on such low doses as by the morning it was well out of my system by the morning.

I lost a lot of weight in hospital, as my appetite dropped right off, pretty much overnight, and eventually they put me on a soya feed... not ideal, but I managed.. now, I eat what I want.. with LOTS of tea to wash it down... dry mouth/little saliva is something most of us have to deal with..  was given the 'all clear' on the 6th June.. 

It does make sense Hazel thank you!

I’ve just had my morning porridge and blueberries, laced with double cream

1. Been thrown another curve ball, turns out when I went for my 1st appt with Oncologist on Friday last week that there’s also ‘nodule’ on my thyroid!?  Apparently they saw this on the scan during their planning of my treatment but omitted to tell me, what the heck?  The hope is that the treatment may have dealt with it?  Don’t have the 3 months mri till first week in September, but in the meantime theyd like me to have an ultrasound scan on my thyroid.  Got the call yesterday, I’m there tomorrow at 2pm….its certainly a roller coaster!!

Hi Peter

This is really helpful, thank you!!

Well I seem to be coping so far with the drop from 30mg to 20mg per day, though I am turning to the paracetamol once or twice a day, I can cope with that

Will take it slowly as per your advise, intending to go to 15mg next week, we’ll see

Deborah x