Hi Ginny

Big hugs to you and your husband, you have both achieved so much to get this far.  Hopefully these side effects will soon start to improve and you will both be able to enjoy life again.  Perhaps think of a short break you can take later in the year doing something you both enjoy for a couple of days.  Something to put a smile on your faces, there is a lot of things not too expensive that will give you a buzz and a good memory..  Take care of yourself too.

Lots of Love

Mo 

Hi Mo 

Thank you . Any news on your news on your re scheduled operation yet ? X x 

Ooo I will tell him that Hazel. X x 

Hi Ginny. Hope you're ok with all this? It's hard for us who are looking in and trying to be the strong one while really there's not much we can do. My husband is a few days behind yours and doing about the same really, give and take. 

He still coughs and splutters a lot but slightly less today and yesterday, throat still sore -still on Fentanyl patch-the lower dose one and paracetamol -syrup, which he has been for about last week and today it gave him an upset stomach so started on the Oramorph and his stomach seems to have settled.

He's just started on proper food after getting fed up with the Ensures but the small amounts he has, which takes him so long -bless him,I think he's better off drinking Ensures with the diet as an extra-to get the calories in 1st then concentrate on eating, as his weight loss has been severe. Same with the appetite as your husband-it is low, I think that's due to not moving around much and the effort and discomfort that comes with eating, which is understandable.

Does your husband get out at all or do much around the house? Mine doesn't which isn't a problem as such I just wonder is this how everyone is? It's a lonely time, being a carer as it's like I've lost my best friend and miss him- but I will get hm back, hopefully soon.

And anyone else...how long did it take to eat normally? I know its a gradual process and everyone's different but it would be nice to have an idea regarding recovery time.

Hope you're all having a good day-big hugs to you all and respect to those who have been through this-you really are  amazingly strong! Joy xx

Hi Joy

its a really difficult one as a fellow cancer suffer who is niw 9 month post radiotherapy all I can say is using the ensures as main part of calories for now is the right way to go and gradually reintroduce new foods. I can still have bad days at min we are all in Wales and I am struggling being in a group if 5 finding something to eat without being a party pooper .

i lost  over 2 stone and even now have onky put maybe 3 lb on from my lowest weight. The big plus point us we are alive to moan at our loved ones .if u re read my blog u will come across piece by my hubby who is and was in your position it’s loney for you and frustrating for us. I loved to cook bake and eat but now it’s a chore to eat .

i still recall the elation of lukewarm consommé soup about 1/2 cup and the inside of a mini pork pie about a month into recovery. Lol. 

A toasted fruit tea cake with grilled cheese became my go get caloire food if choice from about week 5. It’s so hard for all concerned, maybe poached egg on lightly toasted bread ?

we are really all different but baby steps is the way forward unfortunately don’t get me wrong I don’t want to put a downer on things just telling from my perspective. On a plus side ate fish n chips plus chip shop curry sauce yesterday ok only a child portion but managed the fish .plus a piece of carrot cake with frosted topping. 

Good luck Hazel  x 

Hi Joy/Ginny

As you say we are all different and it can take a little while. Some recover and bounce back quite quickly with appetite/fatigue but can still have lingering side effects and some, like myself have taken a little bit longer than most to get some sort of normailty back with eating and appetite. Even then I would say we have to find a new normal what we can tolerate and enjoy. For example I still struggle with chicken as its too dry, I cant take rice or the nice spicy currys I used to enjoy etc I still have fatigue issues that have not totally cleared and back to full normal and my teatment stopped last November. Slowely getting there but its defo baby steps and not really any fixed automatic time for anyone. Each person's recovery will have their own factors that play into it all.
I liked a quote I read in that there is no elevator option on recovery and you have to take the stairs.
I have been told many times both by my consultant and my medical support team that it can take up to 18 mths/2 yrs to fully get back to a new normal in some cases. 

If you go  back a few posts of mine, I detailed a little more info on eating/appetite and the information I got from my medical support team re good calories/wasted calories and some more techincal/scientific aspect they outlined etc and might be worth a little read. Its also in my blog and Ill post link again for you. I'll also be updatingg blog further shortly..

I can relate to the symptoms as I have been unable to get much exercise and I too lost quite a lot of weight/muscle in a very short space of time and medical team put me on an action plan. happy to share that further if you would find helpful but Ive outlined in blog. PM me if you would like more detailed info on action plan I was given.

Loss of appetite is normal and becomes a circle as we dont want to eat, we then have no energy , we then lose muscle etc etc. Fatigue also plays a big part and some like myself have found it harder than others to get out and about or partake in reasonable exercise.

Dont want to paint an overgloom picture but it is a challenge and one I defo relate to and how some others will fall into my category while some other will take a little less time and some might take more.

I have said on here many times there is light at the end of the tunnel as one of my favorite quotes and although it may not seem like it now the light will appear. I hope hubby starts to overcome the side effects and challenges sooner rather than later.

Happy to help anyway I can 

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hello Mo, Ginpo and Otherhalf

Every sympathy with this stage in treatement. I am aware that whilst I had 3x surgery only instead of radiotherapy it sounds as if the peak of your symptoms marries up with my own, particularly the raw, inflamed, painful and exposed throat superimposed on all the other functional and sensitive areas caught up in treatment.

The lack of appetite is so relateable. The reward of eating just did not equal the suffering involved and it is so off putting. Purely a medically practical event. Even when the tepid temperature and smooth, wet texture is as right as it can be just the act of 'gulping' which stretches and tugs on tender throats requires psyching oneself up for. Its all about pain relief and persuit of something better if this is not adequate. I remember thinking Id deal with the weaning off hard drugs when I had the strength to do so but needing all the assistance i counld get. Its a happy position to reduce at ones leisure when sensitivity is much less of an issue in my mind! I couldnt wait to feel so great that I could just leave my almost redundent patch on and top up with lesser potent drugs.

I also recall feeling very sad that kissing was off limits! As a partner first and foremost (and a carer second) one mourns the loss of refinement, its impact on intimacy and appeal even though one knows they are loved. These are such treasured and positive elements to romantic relationships which ordinarily we strive to keep going and its not for want of trying here that they are temporarily lost. Healthy partners tell us its not an issue for them but it is something extra to weigh on ones fragile mind in this scenario. Please let your loved ones know that whilst you will you cannot wait to unleash all the attraction feelings you still have for them..... just from my experience it another notch on the low chart again.

Im four weeks post oropharyngectomy and 80% of the time can swallow liquids without them coming down my nose. Bubbles still off limits and alcohol looks appealing but its just not worth the sting it gives. Eating big meals albeit slowly and washing mouthfuls down with water. Not fancying snacking, I think Im out of the habit, but weight is back upto 60kg. Breathing air overnight dries out my throat and the coughing ensues plus neck positioning after the wide disection for removing all those lymph nodes and weakness means I wake to sleepiliy do some exercises in order to get half comfortable again several times a night. Just on brufen and paracetamol now though plus the odd throat numbing spray. My shoulder is giving me the most trouble as its the part not yet recovering whereas I can see the light at the end of the other tunnels. But the complaints list is definately whittling.

Crisps and toast washed down with water are better than bread or pastry. Dry foods are less likely to sap the saliva and stick to ones throat. Peanuts not great but peanut butter and just butter much better and melted cheese.... heaped in calories too. Chocolate or high sugar foods sting.

Love to all of you. Hang on in there. Coming out of this is such a relief and you are so close now i promise.

Jane xxxxxxx

Not a word Ginny, I am getting very frustrated at the moment, one minute they have me diagnosed and booked in for surgery then absolute silence with no idea what is going on.  I dont know if I have secondary's in my lungs or just the throat to deal with and it is driving me a bit crazy.  am not a nice person this week, even the poor dog is getting it both barrels and he only wants to play.  That makes me even crosser because i dont like being mean and moody.  Frightened to go out in case I miss the important phone call even though they have my mobile.  Bad dreams and not sleeping really not in a good place this week.

Love Mo

Hello Mo

It is extremely rare to have lung secondaries. By far the liklihood is all confined to the throat area and any extra bits trapped in the lymph nodes. There are strict criteria in terms of timescales which state by when you will have to have commenced treatment. Have you had much communication with your macMillan nurse who is on the hospital site and can wander round the departments asking questions for you?

Remember that if you were lined up for radiotherapy rather than surgery there would be a bit of time elapsing whilst you had teeth removed, the mask made, any extra scans and healing from any biopsies or extractions. You will move direct to 'Go' once things start. Sometimes they have a particular surgeon they feel it would be better to hold off for, staff holidays get in the way, equipment availability if they decide to use the laser / robotic arm etc and this delay will have had the benefits weighed up against the downsides I'm sure. I completely understand you just want the cancer out - shot of it - and to know definitively what you are dealing with and hopefully draw a line underneath it with any luck. 

Not sure where you are being seen but chase tomorrow? Find out what is being waited on?

Fingers crossed for news before the end of the week. You are entitled to feel wreched and have a good blub too if you like. It will be full on when it starts so make yourself take a few deep breaths whilst you can.

Love Jane x