Recovery

Hi - I feel for you - I'm 10 weeks since treatment and I remember where you are very well. As I recall you should be having 5-9 fortisips - which seemed like a lot to me. I ended up having litre bottles of soy food (as fortisios made me sick) over a 4-5 hour period through a pump into my PEG tube. I used to do it at night whilst watching tv. Like you I slept a lot - but I made the mistake of not getting enough calories in and became so weak. I started off introducing 500ml then upped to 850ml then 1000ml. 

The dietician gave me the food and the pump and the food was then delivered to me to top up my stock. It kept me alive as I couldn't swallow - not even water or meds - it all went into to PEG tube. 

Recovery is ongoing it doesn't just happen and then you're done. 

Be kind yourself - it's not easy - I would say it takes 4-6 weeks post treatment (in my case) to feel anything like yourself again. I was very disappointed and worried when 2 weeks after treatment I still felt awful - so don't take that as the definitive recivery time - like I did as it can make you very fed up. 

I wish you all the very best, it's not easy, so don't be hard on yourself when you feel your not recovering quickly enough. 

I'm sure other members will have more advice for you but hope ive helped a bit. 

Rupert s mum

Hi Mangopassionfruit, unfortunately recovery is usually a marathon not a sprint. There is no set time for any of it really, some recover quicker than others, and it can often feel like 1 step forward and 2 back. It all happens with time, your body has a lot of healing to do. You do need food to fuel your recovery. Are you having overnight feed via your feeding tube? You can get paracetamol in liquid form, sleep as much as you need to, don't try to rush things, you will get there.

Ray

Hi Mangopassionfruit 

I’ll just echo what others have said. You need 3-3.5K calories a day,  each fortisip gives you 400. If you can’t get enough calories in you won’t heal very quickly and getting back to anywhere near any sort of normal will take months. Ask for a pump so you can get nutrition in slowly without it taking up all the day. Time for industrial pain relief. I was in morphine every four hours alternated with paracetamol. All through my feeding tube. Take your analgesia by the clock. Make yourself a list to tick off through the day. You’ll need mouth preps to keep your mouth as clean as you can plus don’t forget brushing your teeth. 
It’s a long haul but it’s doable

Rupertsmum said:

I was very disappointed and worried when 2 weeks after treatment I still felt awful - so don't take that as the definitive recivery time

Most of us  are told we will feel better after two weeks. Heaven knows why? My oncologist told me six months. 

Hi it’s a marathon not a sprint we get told 2 weeks but have yet to see anyone make that goal. I flew away week 7 tomSpain as it was hubbys 60 th but we were going  to our own apartment and I didn’t go out eating as I took ensures with me and bought locally at chemist you need to up your feed via tube as you’ll be loosing weight which will hamper recovery. Yiur medication need to go through tube and maybe you need to have more pain relief see team tomorrow. By weeks 3 I was on 8;co codomolm30 mg plus oramorph.

Hazel x

Hi Mango

Sleep is part of the recovery, most of us were fatigued after ChemoRadio.

I was pump fed for a few weeks, kept my weight stable.

Have your oncology team not given you soluble paracetamol or Oramorph?

Peter

Hi Rupertsmum

I was on Ensure two Cal... my body would not tolerate it....vomited most of it up to start with, ended up in hospital to stabilize my weight, pump fed with Jevity ...my body tolerated this to a greater degree,...gained enough weight to be discharged after 12 days.

Strangely after PEG was removed I was put back on Ensure....one or two a day orally for top-ups....no probs this time.

Peter

Hi Mangopassionfruit

I couldn't even sip water for the 4 weeks after chemoradiotherapy, 3 months on can't have cold still water it needs to be sparkling or warm. I lived off 6 fortisips through my peg,  that 1800 calories maintained my weight somehow. Pumped all my meds through it, crush any pills between 2 spoons or pestle and mortar and liquid paracetamol. They said you can dilute the fortisip with water but because it went through faster it made me feel ill. Try putting 2 in at a time to lessen the burden.

Dee  

Hello - honestly you are at the worst part of recovery.  Did they provide you with a viscous lidocaine rinse?  When I reached your stage I basically was going through 2 bottles a day, I would have to use it right before I was going to swallow anything.  From what I remember I went from being able to eat food and then once I reached the point you're at I was on a strictly liquid diet - thankfully my Mother-in-Law forced me to drink at least 4 boosts a day.  I want to say it was about 5 weeks after completing radiation that I was able to incorporate food in my diet.  So once you reach that point, start soft and bland...yogurt, ice cream and slowly go from there.  Unfortunately I was a big spicy food fanatic but after radiation I can barely handle ketchup :(

Thanks a lot guys all of these responses have helped me loads. I was there yesterday for chemo and rad. Didn’t sleep to well least night couldn’t drop of never do first night on chemo. I got liquid morphine yesterday. Also I got my steroids in liquid form which I need to start today. I think because my throat had been getting slowly worse over time I didn’t really realise how long I had eaten for because it was gradual and not like and instant swap over from solid food to liquid. It snuck up on me and got on top of me. I just had no energy I didn’t want to get out of bed for 3 days it was my wife that kicked my arse and forced the milkshakes down me. She’s taking more a leading hand now to make sure I get the feeds in. It’s scared me really looking back to how I was and that I had hardly no desire to eat. But I’m feeling a lot better and am going down to do a feed and put meds through. Thanks everyone for all your advice you have really helped me through

james