Post treatment HELP !!!

Thank you Chrissie 

Not a good afternoon but all we can do is keep strong , hope you sleep ok tonight and here to talk tomorrow.

hugs x

Hi Chrissie, I’m afraid I find the nurses comment totally unacceptable. Has she experienced having her nether regions radiated daily! That has made me so cross and that they think this treatment is a walk in the park. If you need stronger painkillers then don’t be afraid to take them provided you take stool softeners with them like movicol. I wouldn’t allow the nurses to treat you like you are making a fuss. In fact I would ring them tomorrow and demand medication or contact PALS at your hospital for neglect. When I first started my treatment I had read from the manufacturer that a medication called flamigel RT should be used from day one of treatment and when I requested it they said that they don’t prescribe it until treatment is nearly finished! I told them that the manufacturer who I contacted said this needs to be used from day one and they reluctantly gave me a 25g tube! I was baffled at the size and complained to my oncologist and it’s all down to trying to keep down costs. Luckily I was on a different gel which I bought privately. I think the nurses have it drummed into them not to be easy with creams. I did get the gel in the end! The cream the radiotherapy nurses suggested I use e45 instead but I cannot use that to this day. We need help getting through those weeks after the therapy has stopped and it’s not a walk in the park. I was on morphine plus paracetamol and ibuprofen and was never denied pain relief. I could not have got through it without that. I hope tomorrow brings you good news of your meds

Julie

WTF?????

What, he's the only doctor who can look at a patient's chart and prescribe them NEEDED MEDICATION?

I got a nurse along these lines. I called the upper echelon and told them I needed an ombudsman, and I got one, and she straightened it all out PDQ.

Do not let that BS pass.

Grrrrrr

Suz

Chrissie, I am totally with Julie and Suz on this.  I was NEVER denied stronger painkillers and for the radiotherapy nurse to take it upon herself to make this decision is, quite frankly, astounding.  Please escalate this so that you get the meds you need now, I don't know where you are being treated but they should have a PALS line.  For your interest, when I saw the oncologist prior to treatment, he said at the end of treatment you will need opioid drugs for the pain, I saw an oncologist weekly all during treatment and afterwards and if one medication didn't work they prescribed another which I picked up from the in-house pharmacy the same day.

Please let us know how you get on.  'You can do this'...?  Grrr!

Irene xx

Hi Julie , 

We are all fighting the same battle but the doctors and nurses are not !!! I’m so grateful for their expertise but yes if this pain doesn’t subside , I will be back on the phone .. my gp Is useless

i was given one tube of flamigel but to request more I have to ask the hospital , get it dispensed there ( hours drive and nowhere to park ) when I know an email to my gp would allow me to pick up from local pharmacy !! Why do people make life difficult ? 

hope all good with you ?

Chrissie xx

Hi Irene , 

I was never offered pain relief on this treatment … I have a rare autoimmune condition of the liver , which is controlled without meds , so think they may be hesitant to prescribe .. I will definitely phone tomorrow if it gets worse . I’m taking paracetamol and meditation ( well switching off ) 

thanks irene 

chrissie xx

I’m on the case Suz … xx

Hi everyone ,

Quick update , I’ve been sent an appointment next Wednesday to see my oncologist .. I assume it’s to discuss pain relief !!!! 
Hope you all ok ? 
minty .. how are this week ? 

big hugs 

Chrissie xx 

Hi Chrissie49 , if this turns out to be just a general check-up & you’re still in a deal of pain make sure you press for more adequate pain relief! Hope you’re ok, are things getting any easier for you? 

Nicola