Neck stiffness, pressure in head

Hi Elaine , yes still have  my PEG  - my weight stabilised when vomiting stopped at week 6 post   - I am at 60kg , no more loss but no  gain either.  My bloods are back today and I have very low potassium.  I have to go for an ECG this afternoon any issues I will have to have potassium via IV in hospital .  

Wow , I know you gained weight before and now you have lost it all? 

Do you have feeding tube still?

Yes , i am able to drink and i am now stocking ip on lots of green smoothies to try and boost . 

I only take Fortisips by PEG. 

Jo

x

Lets hope once your potassium is corrected youll start to feel better. 
good you still have your feeding tube. Takes the stress off I suppose. 
i haven’t got one. Did have a NG at one point, teah i piled weight on with it but all gone and unfortunately lots of muscle too. Trying to build myself up niw but the dentist tells me to avoid sugar at all costs!! (I love mars ice creams and stuff)!! I think if i cut back on sugar my weight will go down further! Hard to get the balance as i have a sweet tooth and enjoy eating puds!! 
Hope you haven’t had to go to hospital but least if you do, theyll get your potassium up quicker than supplements! The sooner that’s corrected, the better youll feel hopefully xx

ER1 said:

Trying to build myself up niw but the dentist tells me to avoid sugar at all costs!! (I love mars ice creams and stuff)!

The way round that is to make that sweet stuff part of the meal and to brush your teeth before eating with something low fluoride and to brush with Duraphat thirty minutes after. 

Avoided hospital - ECG was okay - now have  soluble tablets for next few days and a blood test monday to recheck levels .  I have lost loads of muscle mass too .  Before treatment they checked my muscle mass and were very happy with my muscle  ratio ( i ran nearly everyday ) now its gone , and i know at 53 its going to be a task getting it back especially given i am not recovering smoothly at all. 

Good to hear you are eating though even if its puds lol  , I still struggle , my mouth flares up if i attempt food , it really gets me down as i am at post 11 weeks now .  Even certain drinks can cause a flare up . 

How did your MRI go , i see you had one for some spasms you were getting ? 

Jo

x

Hi Jo. Don’t worry it will come back just make sure you have plenty of protein when eating returns. My muscle mass returned slowly I can cycle happily as far as I could pre cancer. It slowly slowly but you’ll get there. Our enforced diet due to treatment takes our muscle mass .Giid news about ECG 

Hazel xx

Hi Dani

Thanks, yes im going to try that!!
why brush prior to eating?? x

Hey jo

Glad you avoided hospital. Hope you’re managing the meds!! 
Were the same age, i too used to run!! 
Its very frustrating when eating and swallowing is so difficult. Try not to be too hard on yourself. You will get there. Everyone is different and just take each day as it comes. Use your peg and dont beat yourself up if you cant eat what youd like yet. You probably need more time. I assume you have tried the varios mouthwashes pre and post food to help?? Dani and Hazel im sure will have some good advice for you regarding the problems youre having as i too am still learning. I guess if you’re feeling like you do, maybe extra calories through your peg may help and take a bit of pressure off?? 
Thanks Yes, had mri whole spine rather than neck only. Im sure it will he normal. Im sure it Lhermittes, which is a side effect after radiotherapy. Just waiting for results 

Elaine x

ER1 said:

Thanks, yes im going to try that!!
why brush prior to eating?? x

Because plaque builds up over the hours since your last brushing and that’s where the bacteria that work in the sugar you eat are. If you brush after you eat you have to wait 30 minutes and the bacteria in the plaque you have failed to remove are happily producing acid to eat away into your dental enamel

It is frustrating , I remember thinking by week 10 I will be eating some normal foods and turning that corner good and proper.  The problem with not eating normally is it creates more issues , the low potassium being one of them. I am trying to stay positive but I spend most  my time praying for the days to pass  and progress to speed up.

Yes, I still use Casaphol and Gelclair - they dont seem to help with eating .. sometimes when I rinse with them I am still seeing flecks of blood 

The L’Hermites is something I have never heard of but this past week I started to get sharp shooting pain running from the back of my ears downward , very piercing and sometimes it will cause my arms to jolt, I thought it was part of the potassium deficiency but it isn't getting better . Painkillers keep the shooting pain at bay but as soon as 5 hours have passed and its worn off , the pains are back  I try and rest on a hot-water bottle on the back of my neck too as i thought it may be a trapped nerve .  It would just be about right that this L’Hermites joins my list of issues too , when I looked it up it sounds all too familiar  

Jo

x

Unknown said:

L’Hermites joins my list of issues too , when I looked it up it sounds all too familiar  

The good news is that it gets better  I still have a fizzing feeling in my bum when I bend my neck down but I hardly notice it  

It was never mentioned and I learned  about it here from LindaWT who suffered….. if I remember correctly