7 Weeks PT from RT

Hi RichL  It is still early days for her, it can take a while before any improvement is felt. You say she has an NG tube, have they offered her overnight feeding through the tube? If they haven't you could ask them about it today, it would give her the nourishment she needs and take the worry of not eating away. The pain, not being able to eat, and feeling down are all normal at this stage of recovery. Things will get better for her with time. It is also very hard for our carers, who are sometimes overlooked during the whole thing, you are doing a great job Look after her and yourself.

Ray.  

RichL said:

I guess I'm just looking for someone to tell me this is normal 

Hi Rich. The length of recovery is normal and we all perceive pain differently. I was on long acting morphine and oramorph still at 12 weeks. 
It’s not right to be left in pain and have your analgesia withdrawn. Who is in charge of her fentanyl prescribing? Is it the GP? They don’t seem to understand cancer pain very well and I don’t see oncologist or ent refusing pain relief in the way you describe. I would make a stand. Your wife needs proper pain relief for as long as she does, then a managed withdrawal 

Ray’s suggestion about overnight pump feeding is a good one. 
Let us know how you get on. 

RichL said:

So today marks 7 weeks post treatment for my wife and today we go again to see the nurses.

Sorry Rich. I read your post properly and I now understand that it’s the hospital making this decision. 
I still stand by what I said though. Good luck xx

Hi Rich 

Recovery takes time, lots of low days, normal for most, things do improve but it seems like one step forward and three backwards at times .   Posting from Cyprus.  . one-year or so after chemoradio 

Peter 

Oh RichL

Reading your post brings tears to my eyes, it is so very very tough……..but, before you know it, I promise you, both you and your wife will ‘laugh’ again.  Hard to believe right now I know, but you will!!  I’m on my own and honestly, I don’t know how I got here at times, she’s lucky to have you, big hugs to you both.

I didn’t react well to morphine either and was subsequently put on Oxycodone, 10mg slow release tablet form every 12 hours ie just twice a day, then 5mg of liquid up to 4 times a day for the break through pain.  I’m now 17 weeks post treatment, driving again and actually enjoying life again.  Word of warning, I tried to drop the oxy after one x 5mg tab only at night, the withdrawal symptoms were something else!!  I’m now down to just 1.4mgs at night, hoping to be off in the next couple of weeks, but not worrying about it.

As far as the eating is concerned, try not to worry too much, even if she’s only on the fortisips……do get lots of fluid down there though, very important to keep hydrated it aids recovery massively.  I used to put half a pint of water down the tube before every ‘meal’, along with watering down the sometimes ‘thick’ liquid, it all helps….ideally 3 litres of fluid a day.

i could go on and on, but please just give her a big hug from me and know that it does and will get better 

All the best Deborah x

ps….little bubbles in the mouth, sounds like she has what most of us suffer, ‘thrush’, I’m still struggling to get rid after 3 courses of antibiotics.  My mouth is horrid and you really don’t want to see my tongue!!

pps….eating is still a huge challenge and I believe will be for some months still, I often top up with fortisips, all very normal

Good evening RichL, It annoys me when they mess about with people's pain meds, the main reason is that they have never had cancer and will never understand what we go through mentally, and physically and just managing the changes we have to adapt to. I had a big argument with two GPs both in the same practice who questioned my pain meds and tried to reduce the dosage in the end they said we would send you to a pain relief clinic, when i saw the consultant he said "Why are you here so i explained that the GPs sent me because we had a difference of opinion" needless to say he said if you are in pain you should be entitled to pain relief and told me to carry on with what im doing and sent a letter back to the GPs. Please tell your wife not to rush into eating and wait until the side effects improve as i know how frustrating it can be during recovery when you are unable to live a normal life, its also very hard for the carer when they see their loved one going through this but it will get better so dont give up hope, wishing you both all the best and hope it gets easier for you both, take care.

                                                                                  Chris 

Hi Richi. As the others have said it’s not on for  your wife ti be refused adequate pain relief. I was still on oramoroh at week 10 then a slow withdrawal. Tell her it’s a marathon not a sprint and it’s ok not to be orally eating we are all different in his we recover just read this article it may help her 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Hugs 

Hazel