First week post treatment and feeling blue

These are dark days but I know it's hard to believe but some form of normality will return. 

It's tough, I've been there but I'm a couple of months off two years post surgery and life is back to as normal as it can be. 

Time is a great healer, physically & mentally. We always bear the physical & mental scars of the treatment  but it does get much, much better. 

They are very good at managing the initial aftermath of the radio therapy so just ask. I was on oramorph and fentanyl patches for the pain for a while. Just take what evers needed to make it more comfortable. It will probably take a good couple of months before all the side effects start to tail off.

Hang in there. 

Hi ricoshay, these really are the dark days just after treatment has finished, things will get better in time. Is he having his overnight feeds through his RIG? Also he can have water through the RIG  to help with hydration. As for pain relief it can take a little while for your team to get that right, just keep asking and telling them what is going on. As for his neck I was given FLAMAZINE and this did work wonders in a very short time, his voice will come back, I lost mine completely for about 6 weeks. Don't worry the husband you are missing now, will return in time.

Thank you Wend, its good to hear some reassurance. We have a review tomorrow and hopefully they'll adjust his meds to something he can tolerate better. He seems a bit brighter today, but has decided oramorph isn't for him so he's trying codeine instead. Fingers crossed!

Great to hear you have made a strong recovery!

...ricoshay xx

Thank you OldBiker. I haven't come across Flamazine so will ask for that, we asked for Polymed dressings last week and they didn't have them in (on order) and scarily they are out of Lidocaine atm too which will be a disaster if he runs out!

He uses the rig for water, but still not getting enough in, and we can't do overnight feeds, it all goes in with a syringe. He says he feels a bit better today so hoping we can get some extra nutrition thru it. when he feels sick its hard to persuade him to push food or fluids in!

Thank you for the reassurance, I appreciate it

...ricoshay x

Hi Rico shay

well done to hubby I am at the weekend one year post radioans do know exactly what hubbyis going through pain killers a hydration are really the key his body like I say in my blog is at the peak of radiation and chemo keep pushing the nutrition and as much water as he can take what I did was record the volume of water every time I sipped some or was put in my feeding tube the nasal one .i too couldn’t feed at night and the mist my tummy could take at a time wash 300 miles of feed so I felt like I slept took feed and nothing else for at least 3 weeks i too had a 3 rd degree burn which took weeks to heal along with a radiation burn the full length of my tongue. When I look back I don’t know how I did it but hey look at me now ! There’s is light at the end of tunnel just takes babybsteps to get there 

good luck keep in touch

www.radioactiveraz.wordpress.com

Hazel

Thanks Hazel, its so tough, isn't it....hoping tomorrow brings some better meds and relief for him....

...ricoshay x

Hey hun, you sound like you are at the same spot I was at with my oh just two weeks ago, he finished treatment on 16th but has had a really rough time, he was unable to swallow from 2 weeks into treatment, pain was unbearable, couldn’t stem sickness, admitted for dehydration and nutrition, he has lost 18kg throughout this whole process, but is beginning to come out the other side, here’s a few things that helped him, syringe driver with levozamaprine for anti sickness, oxynorm/oxycodone for pain relief morphine made him more sick, overnight fluid if he couldn’t stomach food via the peg via a pump machine at a really slow rate so it didn’t make him sick, difflam mouth wash was amazing, he now has some of his swallow back, taste still not there but has managed to ditch using the peg and trying his hardest orally he’s looking and feeling so much better every day x

Thats great news Shill86, sounds like he's really doing well! I don't want to tempt fate but OH was much brighter yesterday, desperately hoping it was 'hump day' for him, he had more calories and fluids and came out for a couple of walks too...fingers crossed!!

...ricoshay x

I can empathise with much of this and hope your hubby is feeling better soon.

my Oh finished treatment 8 days ago, it’s been a difficult week as you obviously know all about. We are also hoping to see some light appearing soon! Although he had some vomiting last night. Had stopped taking his cyclazine! Back on it now!!!!

its such a rollercoaster!

i wish you both well and hope we all get to some better times soon

L

Hi ricoshay

I know it's a while since this was posted, but how is he getting on now ? 

Similar circumstances to my own, age, surgery, treatment, time, dates etc

I'm still on the same rollercoaster.

Attending courses now, to find more coping mechanisms.

Along with the meds, support and alike.  I'm trying exercise, nutrition, yoga, meditation all available though Maggie's, Sunflowers, Macmillan, Penny Brohn UK. You can attend too. Maybe useful (hopefully) as can help with some form of respite.

Regards

Dave